Could the cure of Huntington’s, Alzheimer’s, Parkinson’s, and other devastating neurological diseases finally become the national priority that the millions of us affected by these diseases have yearned for?
We may be one step closer to such a campaign, thanks to the drive and imagination of Maria Shriver, one of our country’s most articulate and outspoken leaders.
Speaking about Alzheimer’s on ABC-TV’s “This Week” news program this past Sunday, October 17, Shriver coined a phrase – “an expedition to the brain” – that could help spark a national campaign against neurological diseases.
“This president (Obama) could say, I want to launch, just like Kennedy launched an expedition to the moon, he could launch an expedition to the brain,” said Shriver. “There are so many secrets in the brain that can uncover the cures for Alzheimer’s, Huntington’s, Parkinson’s, intellectual disabilities, how we learn, how we love, how we remember. All of this is in the brain. Why not have something like that in this country to galvanize people around?”
As someone who is gene-positive for Huntington’s disease, I was overjoyed to hear Shriver bring attention to the disease that took my mother’s life in 2006 and could destroy my own brain, leaving me unable to walk, talk, think, and swallow.
(Click here to watch a video of the program and read related articles.)
An Alzheimer’s “tsunami”
Shriver, the First Lady of California and the niece of President John F. Kennedy, became an Alzheimer’s disease activist after watching the condition afflict her father Sargent Shriver, the founder of the Peace Corps during the Kennedy administration.
Mr. Shriver was diagnosed in 2003. He can still pray the rosary, Maria recalled in another recent interview, but he no longer remembers who she is.
The program included an interview with former First Lady Laura Bush recalling how her own Alzheimer’s-stricken father had forgotten the identity of her husband, George W. Bush, when Bush was governor of Texas. Her father ultimately succumbed to the disease.
Shriver’s appearance followed the release of The Shriver Report: A Woman’s Nation Takes on Alzheimer’s, which describes the enormous financial and personal burden the disease has created for millions of families and for the country as a whole.
Families hit by the disease spend an average of $56,000 on care. An Alzheimer’s “tsunami” is about to hit America, with a projected cost of $20 trillion over the next 40 years as tens of millions of Baby Boomers move into old age.
HD also exacts a huge social and financial cost. An estimated 30,000 Americans have HD, and some 150,000-250,000 are at risk.
Time to stand up
“I think this president and this Congress can stand up and say, ‘This is a national epidemic,’” Shriver said in a separate ABC interview. “We can get a national strategy. If we launch a national endeavor to underscore and find out what's going on in the brain, I think we can get the money.”
Shriver added that both the media and businesses need to pay more attention to the Alzheimer’s epidemic. She proposes changes in national family leave legislation so that more people can take off time for elder care.
Shriver’s prominence and passion for eliminating brain diseases – together with the growing awareness about these conditions and their enormous negative impact – might finally bring them onto the national political radar screen.
The “cure industry” and the brain
I share Shriver’s passion and determination that our country embark on an expedition to the brain.
Early last year, as our country was plunging into its worst economic crisis since the Great Depression, I wrote a blog entry titled “Our economic comeback and the cure industry.”
“America’s call to action today should focus on the elimination of disease,” I wrote. “America proclaimed a war on poverty and another one against drugs. What we need now is a mission to find treatments and cures for all diseases.”
Instead of borrowing our way out of economic crisis, I proposed that we “create our way out” by stimulating the growth of the cure industry. America can and should lead the world in producing cures, and our biotech industry can reap profits and create the kind of high-paying jobs necessary for maintaining our standard of living and economic leadership.
The expedition to the brain and the new cure industry would go hand in hand.
Purpose and urgency
Clearly our country has already begun to move in this direction. In recent months TV journalist Charlie Rose has broadcast The Brain Series, which explains the huge strides being made in brain research.
But we need a greater sense of purpose and urgency to meet the challenges of HD, Alzheimer’s, and other neurological disorders.
Lamentably, I noted in last year’s posting, none of our national leaders has spoken out about this great potential.
“Great commentary!” wrote one of my blog commentators. “How do ‘we’ get our ideas to the legislators for consideration? It HAS to be done.”
Leadership required!
We need leadership. Once again the current electoral campaign is illustrating a dearth of this capacity.
A case in point is the race to succeed Shriver’s husband Arnold Schwarzenegger as the governor of California.
Once again, the candidates are employing attack ads – not new ideas. Jerry Brown appears to be on an end-of-career adventure, and, spending $140 million of her own cash on her campaign, Meg Whitman seems to be thinking more about a future run at the presidency than about solving California’s current problems.
None of the candidates has put forth a convincing proposal for solving California’s debt and jobs crises.
In this climate of uncertainty and indecision, it’s no wonder that an independent movement like the Tea Party is gaining steam.
Shriver as candidate?
Maybe it’s time for Maria Shriver to run for office. Because of her intelligence, passion, and vision, she would make a strong and provocative candidate.
At Yale I studied in a seminar with her brother Tim. He projected an air of both confidence and concern – both still very much evident in his leadership of the Special Olympics, where he became CEO in 1996.
“I’ve tried to shift the conversation here from what Special Olympics does to what it means,” Tim wrote last year. “It’s often seen as a service organization, but I believe that it’s a civil rights movement. Volunteers might think that they’re only coaching or serving water at a track and field event, for example, but they are doing far more. My mission has been to remind them that they are serving the search for human dignity and acceptance.” (Click here for the full article.)
We need more leaders with the Shrivers’ common sense and compassion.
A call to action
The care for people debilitated by disease and the search for cures should also be a civil rights movement that awakens Americans to our biotechnological and moral potential.
The expedition to the brain is one that we should all embark upon. These issues affect Republicans, Democrats, and independents alike. And the cure industry can and should involve all sectors of society: government, business, labor, and academia.
Like the expedition to the moon, the exploration of the brain could produce numerous spinoffs that would benefit people in as yet unimaginable ways. When future generations look back, they will admire the foresight and courage of those like Maria Shriver who inspired us to take the journey.
Let’s everybody in the HD, Alzheimer’s, Parkinson’s, and other neurological disease communities rally around Shriver’s call to action.
It’s time to launch the expedition to the brain!
Thursday, October 21, 2010
Monday, October 11, 2010
Losing control, seeking connections
As a person who is gene-positive for Huntington’s disease, I have steadily stepped up my involvement in the cause to stop it. My commitment began a couple years after learning of my mother’s diagnosis in late 1995 and intensified after I tested positive in 1999.
Lately, as I take on ever more tasks in the movement, I should feel great satisfaction. And I do.
But, ironically, I’ve also felt that I’m losing control over my life. I feel overwhelmed by what I call my three jobs: family, work, and the HD cause. And my decision to gradually go public about my status will forever change how people see me.
Big goals
On September 24 I made my first speech in the United States about my family’s struggle against HD.
After blogging on that presentation, I delved into an overdue writing project for my work. A lot is riding on it, because, if successful, it could lift my profile in the world of writing and help me raise awareness about the need to fight HD and other genetic diseases.
I had been working on this project for six months, and when I turned it in last Thursday, October 7, I felt an enormous relief.
But I immediately had to prepare for something even more important: the next day, October 8, I would pay my annual visit to Isis Pharmaceuticals, Inc., for an update on the company’s historic attempt to stop HD.
Genetic guerrillas
My professional writing project is about former South American guerrillas accused of terrorism. Suddenly, I had to shift to thinking about oligonucleotides, or oligos, which are a bit like genetic guerrillas. If all goes as planned, these guerrillas will bind to messenger RNA in the brain cells of HD patients and block the process that kills the cells.
Known as antisense technology, the Isis approach is a rare attempt to stop HD at its genetic roots. So it might lead to a “cure,” although Dr. Frank Bennett of Isis cautions against the use of that word. The more likely outcome is a treatment that becomes one in an array of medicines.
I spent several hours reviewing my past articles on Isis, posters on oligos presented at scientific meetings, and the notes from my conversation with Dr. Doug Macdonald, the director of pharmacology at CHDI Management, Inc., informally known as the “Cure Huntington’s Disease Initiative,” a collaborator with Isis in the oligo project.
My life in their hands
At Isis I was overwhelmed to see Dr. Bennett, the senior vice president for research, and Dr. Gene Hung, the scientist in charge of the HD research project. In my imagination these two men, along with others on the Isis team, hold my life – and the lives of tens of thousands of HD patients and at-risk individuals – in their hands.
Before we even began the interview, I warmly thanked Drs. Bennett and Hung for their dedication to assisting the HD community.
I desperately wanted to hear from them that Isis had found the treatment and was ready to begin testing in humans. In a nutshell, the project is taking longer than anticipated, but the progress is remarkable. (Later I’ll blog in greater detail on what I learned.)
Driving home from Isis, I felt a strange mix of euphoria and angst. I had just received encouraging news, and I had successfully carried out an interview on a difficult and complex subject.
But there are no guarantees the project will ultimately arrive at an effective treatment.
And, I wondered, what if it comes too late? My mother died of HD in 2006 at the age of 68, and, at 50, I am already past the age at which her symptoms began.
I wanted to both celebrate and hunker down.
The grapevine
Several months ago I told a good friend and professional colleague about my situation. This was the first time I revealed HD to anybody in my field. He showed great compassion and even made a donation to the Huntington’s Disease Society of America.
Last night I got a surprise call from a mutual friend and colleague who had heard that I was facing “health issues.” He was concerned that I might have something like multiple sclerosis or prostate cancer.
The inevitable grapevine has gone into action, I thought to myself. I have known this person for well over a decade and have trusted him on many professional questions. I decided to tell him about Huntington’s disease – and about how it was important for me to keep it hidden for so many years.
HIV-positive and HD-positive
The first friend had no inkling whatsoever about HD, but the second knew a family affected by HD and had learned in great detail about its medical and social impact.
He immediately got the picture.
This man is openly gay, and so I knew that he could identify with someone who was gene-positive for a deadly disease. In fact, I had previously imagined coming out to him because of his background as a gay rights activist.
We spent a while discussing the similarities between the situations of HIV-positive and HD-positive people.
Both groups have suffered a horrible stigma, leading to problems of discrimination in the workplace and other areas of life. Success in our shared professional field depends a lot on perceptions, and the slightest hint of an inadequacy of any kind can sour a person’s plans to advance.
And the victims of both HIV and HD face a terribly agonizing waiting game of wondering when and how symptoms will develop.
The end of control?
My friend expressed unconditional support, including future advice on how to come out.
I am sure I’ll be calling on him in the coming months. As I’ve written before, our society has developed a ritual for coming out about HIV and other well-known maladies, but still lacks one for genetic diseases, especially orphan conditions such as Huntington’s.
Although my two friends have promised to protect my identity, I know that as I speak out more about HD, the grapevine effect will grow. There is no such thing as a secret once it’s been shared. I will need to prepare myself for more phone calls, e-mails, and personal questions.
The lack of control over people’s perceptions of my HD status is something that I’ll have to live with the rest of my life.
I become especially distressed when I remember how my own mother lost control of her mind and body as HD ravaged her brain. HD people lose control over their movements and basic abilities such as walking, talking, and thinking.
HD people pass control over their lives to caregivers and, as death nears, to nursing home workers. I vividly remember how my father and later healthcare personnel spoon-fed my mother. It was as if she had returned to childhood.
In the end, nobody controls his or her biological destiny: death. People with devastating diseases have an acute awareness of this fact of life.
New and better bonds
As I approach my own destiny with HD, I will need to build ever stronger ties to people.
Going public will forever eliminate control over my genetic information, but it will also connect me to a growing number of people within the HD community and beyond.
I have long feared going public, but in doing so I can find new allies like the friend who called me yesterday to offer support.
HD could leave me completely dependent on my wife and daughter, so I also need to continue strengthening my bonds with them. If and when they need to care for me, I want that transition to go as smoothly as possible. I don’t want to be a burden, but know I could become one. I want to love and care for them while I can.
Lately, as I take on ever more tasks in the movement, I should feel great satisfaction. And I do.
But, ironically, I’ve also felt that I’m losing control over my life. I feel overwhelmed by what I call my three jobs: family, work, and the HD cause. And my decision to gradually go public about my status will forever change how people see me.
Big goals
On September 24 I made my first speech in the United States about my family’s struggle against HD.
After blogging on that presentation, I delved into an overdue writing project for my work. A lot is riding on it, because, if successful, it could lift my profile in the world of writing and help me raise awareness about the need to fight HD and other genetic diseases.
I had been working on this project for six months, and when I turned it in last Thursday, October 7, I felt an enormous relief.
But I immediately had to prepare for something even more important: the next day, October 8, I would pay my annual visit to Isis Pharmaceuticals, Inc., for an update on the company’s historic attempt to stop HD.
Genetic guerrillas
My professional writing project is about former South American guerrillas accused of terrorism. Suddenly, I had to shift to thinking about oligonucleotides, or oligos, which are a bit like genetic guerrillas. If all goes as planned, these guerrillas will bind to messenger RNA in the brain cells of HD patients and block the process that kills the cells.
Known as antisense technology, the Isis approach is a rare attempt to stop HD at its genetic roots. So it might lead to a “cure,” although Dr. Frank Bennett of Isis cautions against the use of that word. The more likely outcome is a treatment that becomes one in an array of medicines.
I spent several hours reviewing my past articles on Isis, posters on oligos presented at scientific meetings, and the notes from my conversation with Dr. Doug Macdonald, the director of pharmacology at CHDI Management, Inc., informally known as the “Cure Huntington’s Disease Initiative,” a collaborator with Isis in the oligo project.
My life in their hands
At Isis I was overwhelmed to see Dr. Bennett, the senior vice president for research, and Dr. Gene Hung, the scientist in charge of the HD research project. In my imagination these two men, along with others on the Isis team, hold my life – and the lives of tens of thousands of HD patients and at-risk individuals – in their hands.
Before we even began the interview, I warmly thanked Drs. Bennett and Hung for their dedication to assisting the HD community.
I desperately wanted to hear from them that Isis had found the treatment and was ready to begin testing in humans. In a nutshell, the project is taking longer than anticipated, but the progress is remarkable. (Later I’ll blog in greater detail on what I learned.)
Driving home from Isis, I felt a strange mix of euphoria and angst. I had just received encouraging news, and I had successfully carried out an interview on a difficult and complex subject.
But there are no guarantees the project will ultimately arrive at an effective treatment.
And, I wondered, what if it comes too late? My mother died of HD in 2006 at the age of 68, and, at 50, I am already past the age at which her symptoms began.
I wanted to both celebrate and hunker down.
The grapevine
Several months ago I told a good friend and professional colleague about my situation. This was the first time I revealed HD to anybody in my field. He showed great compassion and even made a donation to the Huntington’s Disease Society of America.
Last night I got a surprise call from a mutual friend and colleague who had heard that I was facing “health issues.” He was concerned that I might have something like multiple sclerosis or prostate cancer.
The inevitable grapevine has gone into action, I thought to myself. I have known this person for well over a decade and have trusted him on many professional questions. I decided to tell him about Huntington’s disease – and about how it was important for me to keep it hidden for so many years.
HIV-positive and HD-positive
The first friend had no inkling whatsoever about HD, but the second knew a family affected by HD and had learned in great detail about its medical and social impact.
He immediately got the picture.
This man is openly gay, and so I knew that he could identify with someone who was gene-positive for a deadly disease. In fact, I had previously imagined coming out to him because of his background as a gay rights activist.
We spent a while discussing the similarities between the situations of HIV-positive and HD-positive people.
Both groups have suffered a horrible stigma, leading to problems of discrimination in the workplace and other areas of life. Success in our shared professional field depends a lot on perceptions, and the slightest hint of an inadequacy of any kind can sour a person’s plans to advance.
And the victims of both HIV and HD face a terribly agonizing waiting game of wondering when and how symptoms will develop.
The end of control?
My friend expressed unconditional support, including future advice on how to come out.
I am sure I’ll be calling on him in the coming months. As I’ve written before, our society has developed a ritual for coming out about HIV and other well-known maladies, but still lacks one for genetic diseases, especially orphan conditions such as Huntington’s.
Although my two friends have promised to protect my identity, I know that as I speak out more about HD, the grapevine effect will grow. There is no such thing as a secret once it’s been shared. I will need to prepare myself for more phone calls, e-mails, and personal questions.
The lack of control over people’s perceptions of my HD status is something that I’ll have to live with the rest of my life.
I become especially distressed when I remember how my own mother lost control of her mind and body as HD ravaged her brain. HD people lose control over their movements and basic abilities such as walking, talking, and thinking.
HD people pass control over their lives to caregivers and, as death nears, to nursing home workers. I vividly remember how my father and later healthcare personnel spoon-fed my mother. It was as if she had returned to childhood.
In the end, nobody controls his or her biological destiny: death. People with devastating diseases have an acute awareness of this fact of life.
New and better bonds
As I approach my own destiny with HD, I will need to build ever stronger ties to people.
Going public will forever eliminate control over my genetic information, but it will also connect me to a growing number of people within the HD community and beyond.
I have long feared going public, but in doing so I can find new allies like the friend who called me yesterday to offer support.
HD could leave me completely dependent on my wife and daughter, so I also need to continue strengthening my bonds with them. If and when they need to care for me, I want that transition to go as smoothly as possible. I don’t want to be a burden, but know I could become one. I want to love and care for them while I can.
Saturday, September 25, 2010
Out of the closet and on to the cure
I have taken my biggest step ever out of the HD closet.
Yesterday I gave a presentation to about 50 people at the Vertex Pharmaceuticals facility in the biotech corridor of San Diego. I titled it “Gene-Positive for Hell: My Family’s Fight Against Huntington’s Disease.”
This was the first time I spoke publicly about HD in the United States and identified myself as gene-positive for HD. I had come out to an audience in Brazil in June. (In this blog I will continue to use my pseudonym, Gene Veritas.)
It’s a day I won’t forget, as long as I can stay healthy and not succumb to the symptoms of HD that destroy the ability to remember and communicate.
An emotional preparation
Vertex is a drug-discovery company now turning its focus to Huntington’s. I had met Beth Hoffman, Ph.D., the company’s Vice President of Biology, at the CHDI conference in Palm Springs last February. The company’s philosophy of close collaboration with patients and disease-fighting organizations led to an invitation to speak about my personal experiences.
In the days before my talk, I struggled to find the right formula for the presentation. I knew I'd have to be precise and compelling, because the audience would mainly include highly-educated scientists.
Preparing for it drained me emotionally. I reviewed some short videos I had shot of my HD-stricken mother and my father, the “HD warrior” who cared for her for 15 years until she entered a nursing home in 2005. She died in February of 2006, and my father died on September 25, 2010 – a year ago today.
My ten-year-old daughter, who recently learned of my gene-positive status, watched the videos on my computer screen and saw some of the PowerPoint slides I was setting up for the presentation. I explained to her that I would be making a speech about HD.
On Thursday, September 23, I awoke at 2:30 a.m. with a burst of energy and anxiety. I spent the next two-and-a-half hours finishing the PowerPoint. At 5 I turned off the computer and started my normal morning routine of stretching, breakfast, a shower, and the drive to work.
A big surprise
On Friday afternoon I was only at Vertex for a few minutes when suddenly I recognized a familiar face. It was a neighbor whose daughter attends the same school as our daughter. We shared school car-pooling duties one year, and the two girls played one season on the same soccer team.
“Today you’re going to learn something new about me, something pretty big in my life,” I said as I shook his hand.
I was very surprised to see him. My mind immediately went to work on processing this unexpected bit of data. I had prepared myself to speak to the Vertex audience, but I had not imagined speaking to neighbors.
“You’re really going to go public today and take this all to a new level,” I told myself. “Whatever happens, happens.”
HD’s impact
My presentation compressed 15 years of my family’s confrontation with HD into 45 minutes. I defined Huntington’s as “one of the cruelest of diseases.” Its social impact is immense. HD burdens families with round-the-clock caregiving, financial strains, discrimination, insurance issues, the difficult decision about whether to have children, and the curtailment of many of life’s dreams.
Then I described some of my mom’s symptoms and their consequences. Her wobbly walk, for instance, constantly put her in danger of falling. Once she broke a wrist, and another time she sustained a large gash to her head that required staples.
Next I focused on HD’s impact on my wife and me. I began with my decision to get tested, the result of my wife’s and my desire to have a child and to insure that he or she would be free of HD.
I revealed that we had a difficult time committing to our daughter-to-be until we received the news from our geneticist that she had tested negative in the womb. This, I told the audience, was one of the happiest days of our life.
Juxtaposing a photo of our daughter playing soccer next to another in which she posed with Terry Leach, a victim of juvenile HD, I contrasted our healthy “miracle baby" with her potential fate – and our immense worry and pain – had she tested positive.
I felt as if I were riding an emotional rollercoaster, careening from one sharp curve to another. I relived many intense moments of anger, frustration, and fear. Several times I nearly cried but instead spoke even more passionately.
A big step
I have responded to the challenges of HD by channeling my energies into activism for the Huntington’s Disease Society of America (HDSA). I outlined for the audience the many facets of this work: fundraising, production of the chapter newsletter, website development, advocacy, volunteer recruitment, participation in the HD support group, reporting on research, and my blog.
I concluded the personal aspect of my presentation with some thoughts about “exiting the HD closet.” This was a “big step” for me, I told the audience. It was the culmination of a very long process.
I – and many other people in the HD community – can now breathe a little bit easier thanks to the implementation of the federal Genetic Non-Discrimination Act and the passage of President Barack Obama’s health care reforms, which prohibit exclusion of people with pre-existing conditions from insurance coverage.
Imagine, I told the audience, had these measures been in place 15 years ago when I began my fight against HD? I could have been more open about it all, and would have had far fewer worries about insurance.
Imagining a celebration
After my presentation, the Vertex employees asked questions for about 20 minutes about various aspects of my life with HD. Knowing the intellectual acuity of scientists, I had expected some pointed questions.
But I felt great empathy from the audience. As Dr. Hoffman explained to me, seeing the real impact of a disease on people is far different from a discussion about the disease as seen in a test tube.
During the question-and-answer period, Paul Negulescu, Ph.D., the Vertex VP for research and the head of the San Diego facility, asked how I deal with HD on a day-to-day basis. I gave Dr. Negulescu several examples of the mechanisms I have developed, including the deep catharsis I experience in writing this blog.
Later, alluding to his question again, I said that I want to return to Vertex after the company has found a cure for HD and get drunk with him and everybody else to celebrate!
Vertex has potential drugs in the pipeline for controlling cystic fibrosis – like HD, a genetic disease – as well as one for hepatitis C.
Vertex’s HD program seeks to find ways to correct the action of faulty proteins in brain cells. (I'll write more on Vertex’s strategy later.)
I joked to the audience that they had better hurry up, since another San Diego biotech, Isis Pharmaceuticals, Inc., is also hard at work on a major treatment.
After the Q & A, I mingled with the attendees as they partook of the spread of food and beverages the company had laid out. My neighbor came up to me. “I thought of your wife and daughter in all of this,” he said, referring to the many travails I had presented.
The Vertex approach
My visit to Vertex – along with three other members of the HDSA-San Diego board who saw my presentation – helped build an initial bond between the company and the local HD community. To find treatments and a cure for an orphan disease such as Huntington’s, Vertex and the HD community must work together.
Before and after my talk I spent several hours interviewing Dr. Negulescu, Dr. Hoffman, and other Vertex researchers in charge of HD research.
Vertex is reinforcing its commitment to HD families by co-sponsoring our chapter’s tenth annual Celebration of Hope Gala, set for October 22.
Taking in the moment
After saying good-bye and driving off in my car, I stopped a few yards down the street to get some pictures of a street sign I had seen on the way in. It said “Road to the Cure.”
(Photo by Gene Veritas)
Yesterday I gave a presentation to about 50 people at the Vertex Pharmaceuticals facility in the biotech corridor of San Diego. I titled it “Gene-Positive for Hell: My Family’s Fight Against Huntington’s Disease.”
This was the first time I spoke publicly about HD in the United States and identified myself as gene-positive for HD. I had come out to an audience in Brazil in June. (In this blog I will continue to use my pseudonym, Gene Veritas.)
It’s a day I won’t forget, as long as I can stay healthy and not succumb to the symptoms of HD that destroy the ability to remember and communicate.
An emotional preparation
Vertex is a drug-discovery company now turning its focus to Huntington’s. I had met Beth Hoffman, Ph.D., the company’s Vice President of Biology, at the CHDI conference in Palm Springs last February. The company’s philosophy of close collaboration with patients and disease-fighting organizations led to an invitation to speak about my personal experiences.
In the days before my talk, I struggled to find the right formula for the presentation. I knew I'd have to be precise and compelling, because the audience would mainly include highly-educated scientists.
Preparing for it drained me emotionally. I reviewed some short videos I had shot of my HD-stricken mother and my father, the “HD warrior” who cared for her for 15 years until she entered a nursing home in 2005. She died in February of 2006, and my father died on September 25, 2010 – a year ago today.
My ten-year-old daughter, who recently learned of my gene-positive status, watched the videos on my computer screen and saw some of the PowerPoint slides I was setting up for the presentation. I explained to her that I would be making a speech about HD.
On Thursday, September 23, I awoke at 2:30 a.m. with a burst of energy and anxiety. I spent the next two-and-a-half hours finishing the PowerPoint. At 5 I turned off the computer and started my normal morning routine of stretching, breakfast, a shower, and the drive to work.
A big surprise
On Friday afternoon I was only at Vertex for a few minutes when suddenly I recognized a familiar face. It was a neighbor whose daughter attends the same school as our daughter. We shared school car-pooling duties one year, and the two girls played one season on the same soccer team.
“Today you’re going to learn something new about me, something pretty big in my life,” I said as I shook his hand.
I was very surprised to see him. My mind immediately went to work on processing this unexpected bit of data. I had prepared myself to speak to the Vertex audience, but I had not imagined speaking to neighbors.
“You’re really going to go public today and take this all to a new level,” I told myself. “Whatever happens, happens.”
HD’s impact
My presentation compressed 15 years of my family’s confrontation with HD into 45 minutes. I defined Huntington’s as “one of the cruelest of diseases.” Its social impact is immense. HD burdens families with round-the-clock caregiving, financial strains, discrimination, insurance issues, the difficult decision about whether to have children, and the curtailment of many of life’s dreams.
Then I described some of my mom’s symptoms and their consequences. Her wobbly walk, for instance, constantly put her in danger of falling. Once she broke a wrist, and another time she sustained a large gash to her head that required staples.
Next I focused on HD’s impact on my wife and me. I began with my decision to get tested, the result of my wife’s and my desire to have a child and to insure that he or she would be free of HD.
I revealed that we had a difficult time committing to our daughter-to-be until we received the news from our geneticist that she had tested negative in the womb. This, I told the audience, was one of the happiest days of our life.
Juxtaposing a photo of our daughter playing soccer next to another in which she posed with Terry Leach, a victim of juvenile HD, I contrasted our healthy “miracle baby" with her potential fate – and our immense worry and pain – had she tested positive.
I felt as if I were riding an emotional rollercoaster, careening from one sharp curve to another. I relived many intense moments of anger, frustration, and fear. Several times I nearly cried but instead spoke even more passionately.
A big step
I have responded to the challenges of HD by channeling my energies into activism for the Huntington’s Disease Society of America (HDSA). I outlined for the audience the many facets of this work: fundraising, production of the chapter newsletter, website development, advocacy, volunteer recruitment, participation in the HD support group, reporting on research, and my blog.
I concluded the personal aspect of my presentation with some thoughts about “exiting the HD closet.” This was a “big step” for me, I told the audience. It was the culmination of a very long process.
I – and many other people in the HD community – can now breathe a little bit easier thanks to the implementation of the federal Genetic Non-Discrimination Act and the passage of President Barack Obama’s health care reforms, which prohibit exclusion of people with pre-existing conditions from insurance coverage.
Imagine, I told the audience, had these measures been in place 15 years ago when I began my fight against HD? I could have been more open about it all, and would have had far fewer worries about insurance.
Imagining a celebration
After my presentation, the Vertex employees asked questions for about 20 minutes about various aspects of my life with HD. Knowing the intellectual acuity of scientists, I had expected some pointed questions.
But I felt great empathy from the audience. As Dr. Hoffman explained to me, seeing the real impact of a disease on people is far different from a discussion about the disease as seen in a test tube.
During the question-and-answer period, Paul Negulescu, Ph.D., the Vertex VP for research and the head of the San Diego facility, asked how I deal with HD on a day-to-day basis. I gave Dr. Negulescu several examples of the mechanisms I have developed, including the deep catharsis I experience in writing this blog.
Later, alluding to his question again, I said that I want to return to Vertex after the company has found a cure for HD and get drunk with him and everybody else to celebrate!
Vertex has potential drugs in the pipeline for controlling cystic fibrosis – like HD, a genetic disease – as well as one for hepatitis C.
Vertex’s HD program seeks to find ways to correct the action of faulty proteins in brain cells. (I'll write more on Vertex’s strategy later.)
I joked to the audience that they had better hurry up, since another San Diego biotech, Isis Pharmaceuticals, Inc., is also hard at work on a major treatment.
After the Q & A, I mingled with the attendees as they partook of the spread of food and beverages the company had laid out. My neighbor came up to me. “I thought of your wife and daughter in all of this,” he said, referring to the many travails I had presented.
The Vertex approach
My visit to Vertex – along with three other members of the HDSA-San Diego board who saw my presentation – helped build an initial bond between the company and the local HD community. To find treatments and a cure for an orphan disease such as Huntington’s, Vertex and the HD community must work together.
Before and after my talk I spent several hours interviewing Dr. Negulescu, Dr. Hoffman, and other Vertex researchers in charge of HD research.
Vertex is reinforcing its commitment to HD families by co-sponsoring our chapter’s tenth annual Celebration of Hope Gala, set for October 22.
Taking in the moment
After saying good-bye and driving off in my car, I stopped a few yards down the street to get some pictures of a street sign I had seen on the way in. It said “Road to the Cure.”
(Photo by Gene Veritas)Vertex is strategically positioned to help find that cure, I thought as I contemplated the sign.
It was 6:30 p.m., and all was now quiet at the heart of one of the world’s leading biotech corridors. I paused for a few moments to take in the day and what I had accomplished.
Then I got back in and drove off in the direction of the sunset.
Despite all I had relived that day, I felt a rekindled hope.
It was 6:30 p.m., and all was now quiet at the heart of one of the world’s leading biotech corridors. I paused for a few moments to take in the day and what I had accomplished.
Then I got back in and drove off in the direction of the sunset.
Despite all I had relived that day, I felt a rekindled hope.
Saturday, September 18, 2010
'More to lose than ever'
Living gene-positive for Huntington’s disease frequently distresses me as I worry about the inevitable onset of its destructive symptoms and the impact my illness will have on my wife and daughter. I have struggled mightily to cope – a theme of so many entries in this blog.
But, as so many at-risk people have pointed out over the years, the threat of Huntington’s also forces them to put life in perspective and live it more intensely.
In early 2005, as I was just starting this blog, an old friend best summed up my situation by contrasting it with his relatively care-free life: “I envy you. I feel immortal. I don’t believe I’m going to die. But you know you’re going to die, and so you can live your life more fully” (click here to read more).
Life’s priorities
I especially struggled this past week with fear and anger about HD. On September 13, I published “Living in limbo,” in which I described the harrowing “waiting game” that I and so many other people who have tested positive for genetic diseases face as we are forced to imagine a bleak future. (This is akin to what one gene-positive woman calls “genetic roulette.”)
I felt overwhelmed after writing that entry and reading the responses (posted comments, e-mails, and Facebook remarks) of other gene-positive individuals and their relatives.
Feeling a sudden urge to protect my family, life’s priorities flashed through my mind.
I recorded these thoughts in my blog notes:
Our job is to pass down our culture/history/values to the next generation. I feel this acutely. Just as important now to do daughter’s soccer practice as attend an HDSA-SD board meeting. Feel in my bones and my blood: our time here is limited and the prime directive is to guarantee the survival and success of the next generation. Nationally: get rid of debt. Locally: active in community. At home: prepare daughter [for life].
Personal growth
I awoke the next morning at 2:30. I was very agitated and couldn’t get back to sleep. Somehow I got through the workday with the usual good game face, but I didn’t get relief from the agitation and adrenalin rushes until returning from work in the afternoon. I turned off the ringer on the phone and took a long nap. I awoke feeling disoriented.
Luckily, on September 16, I had my bi-weekly session with my psychotherapist, the person who understands my mind probably better than anybody, especially after my mother became ill with HD (and died in early 2006) and my father, the Huntington’s warrior who cared for her for 15 years and died a year ago. Besides the usual worries about HD, I’ve become more anxious because of the approaching first anniversary of his death (click here to read more).
I told my therapist about the difficult feelings generated by the “Living in limbo” entry, including the huge transition I've begun as I become more public about my situation with HD. On September 24 I will make my first-ever public presentation about HD to an American audience. (Click here for an entry on the talk I gave in Brazil last June.)
As we worked together to sort out the painful feelings, we reflected on how I’ve evolved as an activist for HDSA, the Huntington’s Disease Society of America. She also pointed out how much I’ve grown because of the need to confront HD.
A valuable insight
“You have more to lose than ever,” she said.
I interrupted her and asked for a slip of paper to write down this phrase. Right then and there I decided that it would become the topic of my next blog entry.
“You’re right!” I said about her insightful comment.
It’s impossible to know how my life would be today if it weren’t for the threat of HD.
But I believe that I’m a better person in many ways.
Gaining perspective
To begin with, I have indeed gained perspective. The preoccupations of the past now seem like mere details, and I’ve calmed my tightly-wound personality considerably.
The other day my daughter was late for an orthodontist’s appointment. I patiently and quietly waited for her to get ready.
As we got into the car, she asked, “Dad, aren’t you angry that we’re late?” She was wondering why I wasn’t upset with her.
“Will getting upset make the minutes on the clock go backwards?” I asked her. She thought a few seconds and responded, “No.”
“Being late once in a while is okay,” I continued. “Ideally, we should be early for things, so that we’re not late. There are many things we have to be on time for, like school. But it’s not the end of the world if we’re late once in a while.”
In her words, a lot of times I “freak out” about things. But it’s happening less.
It was a small but valuable lesson.
With ever greater appreciation for the gift of life, I’ve become more sensitive to my family’s needs.
A multi-dimensional life
I also feel that I’m a more tolerant person. This helps in my professional relationships and in working with the HD community.
Indeed, my HD activism has built many more layers onto my life: blogging, website development, volunteer recruitment, advocacy, fundraising, the translation of research advances into terms understandable to the HD community, and the building of mutual support within the community. I sometimes feel as I’m living in several dimensions at the same time.
I’ve definitely improved as a writer, because living at risk for HD has led me to explore the depths of human emotions about life and death. I’ve felt the impact of the worst kind of denial, but also the utmost of courage and compassion.
As I’ve written on several occasions, confronting HD has led me to a clearer understanding of my religious faith. I now see faith as going hand in hand with the movement to stop HD.
I feel inspired to help others. I’ve pledged that when and if the cure for HD comes and I finally break free of its destructive shackles, I will channel my energy into another volunteer cause.
The secrets of life
In sum, I feel more mature and more aware.
I think I’m beginning to understand some of the precious secrets of life. Possessions, power, and fame in the end are irrelevant. Love, sharing, and dedication are what count.
Clearly I am far from perfect. Nobody is. I stand only near the starting line of this process.
But in reaching this point, I now have a clearer view of the great potential of my life yet to be unlocked.
The threat of Huntington’s disease has brought me a load of worries. But it’s also given me so much more to feel good about in my life.
I indeed have more to lose than ever, and that’s why I’m ever more anxious to prevent HD from cutting me off in my prime.
But, as so many at-risk people have pointed out over the years, the threat of Huntington’s also forces them to put life in perspective and live it more intensely.
In early 2005, as I was just starting this blog, an old friend best summed up my situation by contrasting it with his relatively care-free life: “I envy you. I feel immortal. I don’t believe I’m going to die. But you know you’re going to die, and so you can live your life more fully” (click here to read more).
Life’s priorities
I especially struggled this past week with fear and anger about HD. On September 13, I published “Living in limbo,” in which I described the harrowing “waiting game” that I and so many other people who have tested positive for genetic diseases face as we are forced to imagine a bleak future. (This is akin to what one gene-positive woman calls “genetic roulette.”)
I felt overwhelmed after writing that entry and reading the responses (posted comments, e-mails, and Facebook remarks) of other gene-positive individuals and their relatives.
Feeling a sudden urge to protect my family, life’s priorities flashed through my mind.
I recorded these thoughts in my blog notes:
Our job is to pass down our culture/history/values to the next generation. I feel this acutely. Just as important now to do daughter’s soccer practice as attend an HDSA-SD board meeting. Feel in my bones and my blood: our time here is limited and the prime directive is to guarantee the survival and success of the next generation. Nationally: get rid of debt. Locally: active in community. At home: prepare daughter [for life].
Personal growth
I awoke the next morning at 2:30. I was very agitated and couldn’t get back to sleep. Somehow I got through the workday with the usual good game face, but I didn’t get relief from the agitation and adrenalin rushes until returning from work in the afternoon. I turned off the ringer on the phone and took a long nap. I awoke feeling disoriented.
Luckily, on September 16, I had my bi-weekly session with my psychotherapist, the person who understands my mind probably better than anybody, especially after my mother became ill with HD (and died in early 2006) and my father, the Huntington’s warrior who cared for her for 15 years and died a year ago. Besides the usual worries about HD, I’ve become more anxious because of the approaching first anniversary of his death (click here to read more).
I told my therapist about the difficult feelings generated by the “Living in limbo” entry, including the huge transition I've begun as I become more public about my situation with HD. On September 24 I will make my first-ever public presentation about HD to an American audience. (Click here for an entry on the talk I gave in Brazil last June.)
As we worked together to sort out the painful feelings, we reflected on how I’ve evolved as an activist for HDSA, the Huntington’s Disease Society of America. She also pointed out how much I’ve grown because of the need to confront HD.
A valuable insight
“You have more to lose than ever,” she said.
I interrupted her and asked for a slip of paper to write down this phrase. Right then and there I decided that it would become the topic of my next blog entry.
“You’re right!” I said about her insightful comment.
It’s impossible to know how my life would be today if it weren’t for the threat of HD.
But I believe that I’m a better person in many ways.
Gaining perspective
To begin with, I have indeed gained perspective. The preoccupations of the past now seem like mere details, and I’ve calmed my tightly-wound personality considerably.
The other day my daughter was late for an orthodontist’s appointment. I patiently and quietly waited for her to get ready.
As we got into the car, she asked, “Dad, aren’t you angry that we’re late?” She was wondering why I wasn’t upset with her.
“Will getting upset make the minutes on the clock go backwards?” I asked her. She thought a few seconds and responded, “No.”
“Being late once in a while is okay,” I continued. “Ideally, we should be early for things, so that we’re not late. There are many things we have to be on time for, like school. But it’s not the end of the world if we’re late once in a while.”
In her words, a lot of times I “freak out” about things. But it’s happening less.
It was a small but valuable lesson.
With ever greater appreciation for the gift of life, I’ve become more sensitive to my family’s needs.
A multi-dimensional life
I also feel that I’m a more tolerant person. This helps in my professional relationships and in working with the HD community.
Indeed, my HD activism has built many more layers onto my life: blogging, website development, volunteer recruitment, advocacy, fundraising, the translation of research advances into terms understandable to the HD community, and the building of mutual support within the community. I sometimes feel as I’m living in several dimensions at the same time.
I’ve definitely improved as a writer, because living at risk for HD has led me to explore the depths of human emotions about life and death. I’ve felt the impact of the worst kind of denial, but also the utmost of courage and compassion.
As I’ve written on several occasions, confronting HD has led me to a clearer understanding of my religious faith. I now see faith as going hand in hand with the movement to stop HD.
I feel inspired to help others. I’ve pledged that when and if the cure for HD comes and I finally break free of its destructive shackles, I will channel my energy into another volunteer cause.
The secrets of life
In sum, I feel more mature and more aware.
I think I’m beginning to understand some of the precious secrets of life. Possessions, power, and fame in the end are irrelevant. Love, sharing, and dedication are what count.
Clearly I am far from perfect. Nobody is. I stand only near the starting line of this process.
But in reaching this point, I now have a clearer view of the great potential of my life yet to be unlocked.
The threat of Huntington’s disease has brought me a load of worries. But it’s also given me so much more to feel good about in my life.
I indeed have more to lose than ever, and that’s why I’m ever more anxious to prevent HD from cutting me off in my prime.
Monday, September 13, 2010
Living in limbo
People who’ve tested positive for genetic diseases but still don’t have symptoms find themselves playing a terrible waiting game.
I tested positive for Huntington’s disease in June 1999 at the age of 39. HD usually strikes people in their 30s, 40s, or 50s. My own mother, who died of HD at age 68 in 2006, started showing the psychiatric effects of HD around age 48.
So my symptoms could start any time.
Difficult to predict
With HD, the more severe the genetic defect, the earlier the disease starts. But doctors and scientists cannot predict the exact moment when a person will display symptoms. What makes this fatal brain disease even trickier is its variety and complexity of symptoms. Researchers are finding that the disease affects many functions, from those as subtle as the sense of smell to as basic as the ability to walk.
The disease also causes decline variably in different people. The normal course usually runs 15 to 20 years. But some people live a long time until the worst symptoms kick in, while others become helpless early on.
HD is caused by a single genetic defect, but researchers are searching for so-called modifier genes that might trigger onset. Environmental factors and lifestyle also may affect onset and the severity of the disease.
My own waiting game
So I have played the waiting game for eleven years.
Not long after I was tested, my wife and I noticed that my legs twitched at night as I would fall asleep. We panicked, because the first physical manifestation of my mother’s HD was uncontrollable trembling in her legs while in bed.
A physician with detailed knowledge of HD informed me, however, that many people have nocturnal twitching and that mine was probably not related to HD.
We were relieved, but, because the genetic defect eventually strikes all carriers, we know it’s only a matter of time before something begins to go wrong.
Subtle versus classic symptoms
Over the past decade I’ve noticed a decline in several areas such as short-term memory and reaction time behind the wheel. This could be HD – or simply the aging process. (I turned 50 last year.)
I did well at my last annual check-up with an HD specialist. I am still apparently free of classic HD symptoms.
But I’m also aware that the more subtle symptoms could be at work. And I know that the latest research demonstrates that changes in the HD-affected brain start occurring years before noticeable symptoms arise.
Feeling “cheated”
Recently I’ve been feeling angry about being in this state of limbo.
Don’t get me wrong. I’m very happy to be healthy. When I see other HD-affected people in my age group (40s and 50s), I feel blessed in being able to work, write, travel, and enjoy my family. I’m exercising, eating nutritious food, taking supplements, and keeping an active mind so I can try to stave off the symptoms as long as possible.
I’ll admit that sometimes I experience that little bit of death wish that we all do from time to time. During an HD check-up a couple years ago, I expressed amazement to the doctor that I had no apparent symptoms. “Be thankful,” he said.
In a weird way, I felt cheated. I had been preparing myself all these years for onset, and it didn’t happen!
It’s as if I’m preparing for a great battle, but the battle never comes.
I think what I really wanted was definition in my life about HD. I wanted to know how it would start and when. (I know that’s a narrow focus; onset will bring huge burdens to my wife and daughter.)
Powerful feelings
These visits to the HD doctor always unleash powerful feelings. I see individuals with severe symptoms. I know some of them and have seen them decline over the years.
I feel deeply relieved not to be in their situation.
And I feel sad and guilty watching them struggle with walking, talking, and the other basics of life that HD takes away.
A cruel joke?
Other times my imagination wanders into the territory of conspiracy theory. It goes something like this: the geneticist who gave me my test results made a terrible mistake and mixed up my results with somebody else’s. I am not really gene-positive! That’s why I don’t have symptoms!
A similar version gets paranoid: that geneticist wanted me to suffer and lied about the results!
“It’s a hoax!” I tell myself.
“Is this some kind of cruel joke?” I angrily ask myself. “I’m told I’m going to get a disease, and yet no symptoms have come. I keep wondering about it.”
Wanting to “resign” from HD
A few weeks ago, I daydreamed about writing a “resignation letter” from my volunteer position with the local chapter of the Huntington’s Disease Society of America (HDSA). “I’m tired,” the letter stated.
I felt especially resentful because I had just returned from a very enjoyable 32-day, 8,300-mile cross-country car trip with my family. I didn’t answer any HDSA e-mail during that time, and I put thoughts of the disease and our cause to the back of my mind.
After the vacation, however, the hard reality of HD worked its way back to the forefront. It’s time for my annual check-up, and also for the tenth annual HDSA-San Diego Celebration of Hope Gala, our biggest fundraiser of the year.
Commiserating with Michael Douglas
In late August I watched actor Michael Douglas reveal on national TV that he had stage-four throat cancer. My heart went out to him. But, as he put it with the characteristic Douglas family determination, he had an 80 percent chance of beating the cancer.
“At least there’s a treatment!” I thought. Good for him!
But then I immediately thought how there is a zero percent chance of beating HD – because there is still no treatment and even less a cure.
So, just as I think about HD practically every morning, so must I daily rededicate myself to the fight against it.
Fighting on a new level
Not coincidentally, I’m gradually and very strategically going public about my gene-positive status. In June I gave a speech in Brazil in which I came out to an audience of several hundred people.
Later this month I will make a presentation on my life with HD for a local biotech company, Vertex Pharmaceuticals, which researches the disease. It will be the first time I speak in public about HD to an American audience.
I really do wish HD were just a cruel joke or a bad dream. But as I think of my mom and all of my friends and acquaintances living with the disease or at risk, I know all too well that HD is real.
I tested positive for Huntington’s disease in June 1999 at the age of 39. HD usually strikes people in their 30s, 40s, or 50s. My own mother, who died of HD at age 68 in 2006, started showing the psychiatric effects of HD around age 48.
So my symptoms could start any time.
Difficult to predict
With HD, the more severe the genetic defect, the earlier the disease starts. But doctors and scientists cannot predict the exact moment when a person will display symptoms. What makes this fatal brain disease even trickier is its variety and complexity of symptoms. Researchers are finding that the disease affects many functions, from those as subtle as the sense of smell to as basic as the ability to walk.
The disease also causes decline variably in different people. The normal course usually runs 15 to 20 years. But some people live a long time until the worst symptoms kick in, while others become helpless early on.
HD is caused by a single genetic defect, but researchers are searching for so-called modifier genes that might trigger onset. Environmental factors and lifestyle also may affect onset and the severity of the disease.
My own waiting game
So I have played the waiting game for eleven years.
Not long after I was tested, my wife and I noticed that my legs twitched at night as I would fall asleep. We panicked, because the first physical manifestation of my mother’s HD was uncontrollable trembling in her legs while in bed.
A physician with detailed knowledge of HD informed me, however, that many people have nocturnal twitching and that mine was probably not related to HD.
We were relieved, but, because the genetic defect eventually strikes all carriers, we know it’s only a matter of time before something begins to go wrong.
Subtle versus classic symptoms
Over the past decade I’ve noticed a decline in several areas such as short-term memory and reaction time behind the wheel. This could be HD – or simply the aging process. (I turned 50 last year.)
I did well at my last annual check-up with an HD specialist. I am still apparently free of classic HD symptoms.
But I’m also aware that the more subtle symptoms could be at work. And I know that the latest research demonstrates that changes in the HD-affected brain start occurring years before noticeable symptoms arise.
Feeling “cheated”
Recently I’ve been feeling angry about being in this state of limbo.
Don’t get me wrong. I’m very happy to be healthy. When I see other HD-affected people in my age group (40s and 50s), I feel blessed in being able to work, write, travel, and enjoy my family. I’m exercising, eating nutritious food, taking supplements, and keeping an active mind so I can try to stave off the symptoms as long as possible.
I’ll admit that sometimes I experience that little bit of death wish that we all do from time to time. During an HD check-up a couple years ago, I expressed amazement to the doctor that I had no apparent symptoms. “Be thankful,” he said.
In a weird way, I felt cheated. I had been preparing myself all these years for onset, and it didn’t happen!
It’s as if I’m preparing for a great battle, but the battle never comes.
I think what I really wanted was definition in my life about HD. I wanted to know how it would start and when. (I know that’s a narrow focus; onset will bring huge burdens to my wife and daughter.)
Powerful feelings
These visits to the HD doctor always unleash powerful feelings. I see individuals with severe symptoms. I know some of them and have seen them decline over the years.
I feel deeply relieved not to be in their situation.
And I feel sad and guilty watching them struggle with walking, talking, and the other basics of life that HD takes away.
A cruel joke?
Other times my imagination wanders into the territory of conspiracy theory. It goes something like this: the geneticist who gave me my test results made a terrible mistake and mixed up my results with somebody else’s. I am not really gene-positive! That’s why I don’t have symptoms!
A similar version gets paranoid: that geneticist wanted me to suffer and lied about the results!
“It’s a hoax!” I tell myself.
“Is this some kind of cruel joke?” I angrily ask myself. “I’m told I’m going to get a disease, and yet no symptoms have come. I keep wondering about it.”
Wanting to “resign” from HD
A few weeks ago, I daydreamed about writing a “resignation letter” from my volunteer position with the local chapter of the Huntington’s Disease Society of America (HDSA). “I’m tired,” the letter stated.
I felt especially resentful because I had just returned from a very enjoyable 32-day, 8,300-mile cross-country car trip with my family. I didn’t answer any HDSA e-mail during that time, and I put thoughts of the disease and our cause to the back of my mind.
After the vacation, however, the hard reality of HD worked its way back to the forefront. It’s time for my annual check-up, and also for the tenth annual HDSA-San Diego Celebration of Hope Gala, our biggest fundraiser of the year.
Commiserating with Michael Douglas
In late August I watched actor Michael Douglas reveal on national TV that he had stage-four throat cancer. My heart went out to him. But, as he put it with the characteristic Douglas family determination, he had an 80 percent chance of beating the cancer.
“At least there’s a treatment!” I thought. Good for him!
But then I immediately thought how there is a zero percent chance of beating HD – because there is still no treatment and even less a cure.
So, just as I think about HD practically every morning, so must I daily rededicate myself to the fight against it.
Fighting on a new level
Not coincidentally, I’m gradually and very strategically going public about my gene-positive status. In June I gave a speech in Brazil in which I came out to an audience of several hundred people.
Later this month I will make a presentation on my life with HD for a local biotech company, Vertex Pharmaceuticals, which researches the disease. It will be the first time I speak in public about HD to an American audience.
I really do wish HD were just a cruel joke or a bad dream. But as I think of my mom and all of my friends and acquaintances living with the disease or at risk, I know all too well that HD is real.
Tuesday, August 31, 2010
My friend, the fast lane
Living at risk for Huntington’s disease often leaves me deeply anguished. My mother was diagnosed with HD in 1995, and I tested positive in 1999. For 15 long years I have worried about whether I will repeat her hellish experience of losing the ability to walk, talk, think, and swallow. Everybody with the HD gene eventually develops the disease, which is fatal. My mother died in 2006 at the age of 68. I'm 50 now, and time is closing in.
I’ve learned to cope in many ways. I’ve adapted emotionally – so far – to the idea of getting HD, and I’ve balanced my fear of HD with the demands, strategies, and joys of life (work, insurance, and family, for instance). A good part of the past year I spent preparing for a month-long cross-country car trip with my wife and daughter – our "miracle child," who tested negative for HD in the womb – in order to enjoy our time together before I develop symptoms. We had a great time (click here to read more).
The importance of exercise
Exercise is another way of coping. Perhaps it even delays the onset of symptoms.
One of my HD heroes is Bryan Medrano, a triathlete and the 2004 “Person of the Year” of the Huntington’s Disease Society of America (HDSA). I met Bryan several years ago when he was in San Diego for a kickoff party in honor of him and three other Californians who biked across the country in one just one week in order to raise research funds. I learned that Bryan was gene-positive. I admired the way he trained to stave off symptoms and to raise awareness about HD.
Next to Bryan I’ve been a couch potato. I get in 30 minutes of focused daily exercise. I usually take a brisk two-mile walk. For a while I took hour-long bike rides up and down the hills of our San Diego neighborhood. For about a year I also worked out once a week on the weight machines at the nearby YMCA. For a few years I also worked out on an elliptical machine in our living room. I also spend 15-30 minutes per day stretching.
I know I need to do more. Dr. LaVonne Goodman, the founder of Huntington’s Disease Drug Works, recommended that I put in an hour of aerobic exercise seven days a week. I’ll admit, though, that sometimes I’m lazy or too busy, so I rarely get beyond 45 minutes.
The Obama stimulus pool
Over the past year I’ve rediscovered swimming.
Thanks to my wife’s persistence, in 2009 we built a swimming pool in our back yard. I call it “the Obama stimulus pool,” because, thanks to President Barack Obama’s efforts early on to lower interest rates and get the economy going, we were able to refinance our home with an interest rate of just 4.375 percent and take out $75,000 for the pool and related home items such as solar heating and decking.
I like to tell friends that when the history of the recovery from our current recession is someday written, economists will identify our pool project as the turning point.
My wife mainly wanted the pool for get-togethers with friends and our daughter’s play dates. My wife reasoned that it was better to have our daughter within view than off somewhere else as she heads into the challenging teen years. While the kids play, we can read or work on our laptops or join in the fun.
Laps in the back yard
I investigated another very practical benefit: how to set up the pool for the best workout possible.
Our yard was too small for a lap pool. So I started to research alternatives such as a swim tether (holding the swimmer in place with a line) and swim jets (a stream of bubbles). I concluded that neither would give me the kind of challenging, natural workout I wanted.
Years ago I had also heard of a company called Endless Pools. I received some of their promotional DVDs in the mail, but the estimated price of around $20,000 seemed too much for a small pool that could be used only for swimming laps in place.
More recently, however, the company developed a product called Fastlane, a motor that can be installed in a new or existing pool.
A 52-speed motor
From my research I learned that the Fastlane did the best job of recreating the actual conditions of swimming. The Fastlane created a current in the pool, not bothersome, dispersing bubbles. The company arranged for me to try out one of its devices at another customer’s home. This gentleman, a Masters swimmer, and his wife graciously allowed my daughter and me to swim in their pool with the Fastlane.
The two horsepower motor operates at 52 speeds (!), allowing for a wide range of swimming abilities.
I was hooked! So the additional $5,000 for the device and installation by our pool contractor has been worth it. (Click on the 'play' button below to watch a video of me with the Fastlane.)
My relationship with water
The physical benefits of swimming are well-known. It’s a great aerobic exercise that involves the whole body and doesn't stress joints as with running or require an uncomfortable position (for me, at least) as with bicycle riding.
Life emerged from water, and to return to water helps me reconnect with nature. The water envelops me as if to protect, and at the same time I must work against it to keep up with the current.
I have an especially complex relationship with swimming pools. When I was about four, my mother took me and my little sister to the pool in our apartment complex. I was floating around in a circular rescue tube. Suddenly I flipped over and was upside down in the water. I didn’t know how to swim, and I started thrashing about in the struggle to right myself.
What’s worse, the lifeguard wasn’t paying attention.
Somehow, I came back up on my own.
I had swallowed some water and was coughing and crying as I came out of the pool. I kneeled down and hid between my mother’s legs and under the towel she had draped over her knees.
I didn’t develop a phobia for water or pools, but I do frequently remember the sensation of helplessness and the subsequent safety I felt under my mom’s towel.
Swimming and HD
Recently I’ve thought even more about this incident because of how helpless my own mother became when struck with Huntington’s disease.
I now return to the water to seek strength against her attacker and mine. Getting in shape, working the heart and muscles, bathing the brain with oxygen and its protective elements – these are my goals when I get into the water.
The Fastlane is my friend.
As its motor hums and relentlessly pushes water at me, I work out my frustrations. Swimming helps me to put the relatively minor but often irksome problems of daily life into perspective.
And rather than fight with people I know who live in denial of HD or fail to understand the need to draw our community closer, I think of accelerating my pace so that my fingertips can reach the edge of the Fastlane. Anger becomes energy, and sadness becomes exhaustion.
When the anguish is worst, swimming makes me feel alive and vital, knowing that for the moment I am still okay and without symptoms.
On those special days the thrill of the swim and the flow of oxygen bring me to a state of exhilaration and optimism about my work as an HDSA activist and the collective search for treatments and a cure.
The Fastlane and I don’t ever talk, but together we’re building hope.
I’ve learned to cope in many ways. I’ve adapted emotionally – so far – to the idea of getting HD, and I’ve balanced my fear of HD with the demands, strategies, and joys of life (work, insurance, and family, for instance). A good part of the past year I spent preparing for a month-long cross-country car trip with my wife and daughter – our "miracle child," who tested negative for HD in the womb – in order to enjoy our time together before I develop symptoms. We had a great time (click here to read more).
The importance of exercise
Exercise is another way of coping. Perhaps it even delays the onset of symptoms.
One of my HD heroes is Bryan Medrano, a triathlete and the 2004 “Person of the Year” of the Huntington’s Disease Society of America (HDSA). I met Bryan several years ago when he was in San Diego for a kickoff party in honor of him and three other Californians who biked across the country in one just one week in order to raise research funds. I learned that Bryan was gene-positive. I admired the way he trained to stave off symptoms and to raise awareness about HD.
Next to Bryan I’ve been a couch potato. I get in 30 minutes of focused daily exercise. I usually take a brisk two-mile walk. For a while I took hour-long bike rides up and down the hills of our San Diego neighborhood. For about a year I also worked out once a week on the weight machines at the nearby YMCA. For a few years I also worked out on an elliptical machine in our living room. I also spend 15-30 minutes per day stretching.
I know I need to do more. Dr. LaVonne Goodman, the founder of Huntington’s Disease Drug Works, recommended that I put in an hour of aerobic exercise seven days a week. I’ll admit, though, that sometimes I’m lazy or too busy, so I rarely get beyond 45 minutes.
The Obama stimulus pool
Over the past year I’ve rediscovered swimming.
Thanks to my wife’s persistence, in 2009 we built a swimming pool in our back yard. I call it “the Obama stimulus pool,” because, thanks to President Barack Obama’s efforts early on to lower interest rates and get the economy going, we were able to refinance our home with an interest rate of just 4.375 percent and take out $75,000 for the pool and related home items such as solar heating and decking.
I like to tell friends that when the history of the recovery from our current recession is someday written, economists will identify our pool project as the turning point.
My wife mainly wanted the pool for get-togethers with friends and our daughter’s play dates. My wife reasoned that it was better to have our daughter within view than off somewhere else as she heads into the challenging teen years. While the kids play, we can read or work on our laptops or join in the fun.
Laps in the back yard
I investigated another very practical benefit: how to set up the pool for the best workout possible.
Our yard was too small for a lap pool. So I started to research alternatives such as a swim tether (holding the swimmer in place with a line) and swim jets (a stream of bubbles). I concluded that neither would give me the kind of challenging, natural workout I wanted.
Years ago I had also heard of a company called Endless Pools. I received some of their promotional DVDs in the mail, but the estimated price of around $20,000 seemed too much for a small pool that could be used only for swimming laps in place.
More recently, however, the company developed a product called Fastlane, a motor that can be installed in a new or existing pool.
A 52-speed motor
From my research I learned that the Fastlane did the best job of recreating the actual conditions of swimming. The Fastlane created a current in the pool, not bothersome, dispersing bubbles. The company arranged for me to try out one of its devices at another customer’s home. This gentleman, a Masters swimmer, and his wife graciously allowed my daughter and me to swim in their pool with the Fastlane.
The two horsepower motor operates at 52 speeds (!), allowing for a wide range of swimming abilities.
I was hooked! So the additional $5,000 for the device and installation by our pool contractor has been worth it. (Click on the 'play' button below to watch a video of me with the Fastlane.)
My relationship with water
The physical benefits of swimming are well-known. It’s a great aerobic exercise that involves the whole body and doesn't stress joints as with running or require an uncomfortable position (for me, at least) as with bicycle riding.
Life emerged from water, and to return to water helps me reconnect with nature. The water envelops me as if to protect, and at the same time I must work against it to keep up with the current.
I have an especially complex relationship with swimming pools. When I was about four, my mother took me and my little sister to the pool in our apartment complex. I was floating around in a circular rescue tube. Suddenly I flipped over and was upside down in the water. I didn’t know how to swim, and I started thrashing about in the struggle to right myself.
What’s worse, the lifeguard wasn’t paying attention.
Somehow, I came back up on my own.
I had swallowed some water and was coughing and crying as I came out of the pool. I kneeled down and hid between my mother’s legs and under the towel she had draped over her knees.
I didn’t develop a phobia for water or pools, but I do frequently remember the sensation of helplessness and the subsequent safety I felt under my mom’s towel.
Swimming and HD
Recently I’ve thought even more about this incident because of how helpless my own mother became when struck with Huntington’s disease.
I now return to the water to seek strength against her attacker and mine. Getting in shape, working the heart and muscles, bathing the brain with oxygen and its protective elements – these are my goals when I get into the water.
The Fastlane is my friend.
As its motor hums and relentlessly pushes water at me, I work out my frustrations. Swimming helps me to put the relatively minor but often irksome problems of daily life into perspective.
And rather than fight with people I know who live in denial of HD or fail to understand the need to draw our community closer, I think of accelerating my pace so that my fingertips can reach the edge of the Fastlane. Anger becomes energy, and sadness becomes exhaustion.
When the anguish is worst, swimming makes me feel alive and vital, knowing that for the moment I am still okay and without symptoms.
On those special days the thrill of the swim and the flow of oxygen bring me to a state of exhilaration and optimism about my work as an HDSA activist and the collective search for treatments and a cure.
The Fastlane and I don’t ever talk, but together we’re building hope.
Thursday, August 05, 2010
Traveling across America, togetherness and memories
Living gene-positive for Huntington’s disease has taught me to value each and every moment of life, from the most humdrum to the most exhilarating.
Like so many people in my position, I have planned for the worst yet tried to live as if it will never happen.
I know that I could very soon follow in the footsteps of my mother, who was reduced by HD to a mere shadow of herself and died in 2006.
But I’ve tried to pack in as much life as possible.
Seizing the moment
Ever since testing positive for HD in 1999 and taking part in the birth of our HD-free daughter in 2000, I have worried deeply about whether I will see her grow up, graduate from college, and set out on her own life of work and love.
I have been blessed. Whereas my mother probably had the early psychiatric symptoms of HD in her late 40s, I reached my 50th birthday apparently free of the classic symptoms of HD. Still, all the scientific evidence suggests that the genetic defect is already attacking my brain and perhaps causing subtle, almost imperceptible symptoms.
On June 27, the day after my daughter’s tenth birthday, I seized the moment and embarked with my family on a month-long vacation. I wanted to take advantage of my good health by bringing our family closer together and creating lifelong memories for our daughter.
The force of nature
In this day and age of plane travel, we toured America coast to coast by car, just as my parents used to do with my family in the 1960s and early 1970s. (I didn’t ride on a plane until age 18, but my daughter had already flown to Brazil before she turned one!) From San Diego we drove to the Excalibur in Las Vegas, spent a night in Salt Lake City, and then headed to Yellowstone National Park.
At Yellowstone we experienced the beautiful and haunting power of nature within the first few hours. Driving home at dusk after watching the Old Faithful geyser, we saw a grizzly bear crossing a river near the road.
A baby black bear near our car on our last day at Yellowstone (photo by Gene Veritas)
Moments later, driving back to our hotel in West Yellowstone, Montana, flashes of lightning lit up the western sky. It started to rain hard, and then a storm of hail forced us to stop on the shoulder. We feared that our windshield might crack. The car thermometer plummeted from 70 to 45 degrees in just a few minutes.
Once the rain cleared, my daughter couldn’t wait to return to the hotel to write down in her trip journal the assault of nature she had just experienced.
Touring a diverse land
It set the tone for the rest of the trip – a symbol of the vastness and geographical and cultural diversity of our great country.
After Yellowstone we ate trout caught by my daughter and Huntington’s Disease Society of America (HDSA) national board member Rob Millum at his pond in Buffalo, Wyoming; witnessed the majesty of Mount Rushmore, the Crazy Horse Memorial, and Wind Cave National Park in South Dakota; saw cheese-making at Decatur Dairy in Brodhead, Wisconsin; visited Notre Dame and Yale, two of America’s leading universities; spent several relaxing days at a college friend’s home on Nantucket; ate coal oven pizza in Greenwich Village with another college friend; and viewed the Liberty Bell and Independence Hall in Philadelphia.
Rob Millum expertly caught, cleaned, and grilled trout (photo by Gene Veritas).
We also saw the spectacular museums and public buildings and monuments of our nation’s capital; experienced the wisdom and ingenuity of Thomas Jefferson’s Monticello in Virginia; learned, in a visit to Memphis, about the deep impact on our land of Elvis Presley and Martin Luther King Junior; strolled through the artful town of Santa Fe, New Mexico; visited the site of the construction of the first nuclear bomb at nearby Los Alamos; and, as a grand finale, took in the Grand Canyon.
Along the way we enjoyed many dishes new to both my daughter and my wife, who is Brazilian: Wyoming buffalo meat, New Haven pizza, Philly cheese steaks, Memphis barbecue, and New Mexican cuisine.
Mount Rushmore the night of July 4 (photo by Gene Veritas)
During much of the trip we renewed ties with old friends and family members who graciously opened their doors and cooked us wonderful meals, a welcome break from hotels and the fast food we ate during 500-mile days on the highway.
A break from HD
We logged 8,300 miles in 32 days. The pace was hectic but exhilarating.
Throughout most of the trip I simply forgot about Huntington’s disease. As a fellow HDSA-San Diego board member put it, I deserved this vacation! From late 2008, when we began revamping our chapter website, until this past June I have blogged a couple times per month, put out several chapter e-newsletters, attended the CHDI (unofficially known as the Cure Huntington’s Disease Initiative) conference in Palm Springs, and worked in a range of other chapter activities.
In the midst of all this, in September 2009, my father, the Huntington’s disease warrior who cared for my mother for fifteen 15 years, died just a few days before his 82nd birthday.
For those 32 days I barely glanced at e-mail.
A joyful time
When the subject of HD came up, we didn’t flee. In my home state of Ohio my wife and I recalled with my cousin and his wife my parents’ struggle with HD and the disease’s big part in our decision to have only one child.
In New Haven an old college friend asked me how I was doing health-wise, and I explained to him that I had now gone beyond the age of my mother’s apparent onset.
Indeed, I felt deeply privileged to be able to take the trip. It was truly a joyful month!
From “pseudonymous” to going public
During dinner at the Nantucket home of Robi Blumenstein, the President of CHDI Management, Inc., the topic of HD naturally came up. As always, it was good to hear Robi speak of the latest progress in the search for treatments and a cure.
I spoke openly about this blog, mentioning the fact that I use a “pseudonym.” My daughter, who was sitting next to me, had recently read the three children’s books by “Pseudonymous Bosch,” known as the Secret Series. Shocked, she asked, “Are you Pseudonymous?!”
No, I explained, I wasn’t. But I let her take in everything about the blog as I resumed the conversation with Robi and the other guests. For the first time, she learned that I blog about HD. Surely and steadily she is learning more about her father’s own long-held secret and witnessing how I am going public about it. (Click here to read more.)
An extra special vacation
As I put down the first notes for this entry after our arrival in San Diego on July 28, I told myself: “mission accomplished!” I had planned this trip since summer 2009. We reached all of our goals and kept on schedule, with no flat tires or major car emergencies. We managed to keep good humor in close quarters, and our daughter showed great patience as she spent long hours in the back seat far from home, beloved pet dog, and friends.
Gene on the Mickelson Trail in South Dakota (family photo).
Traveling through our great country and showing it to my family – including many places that I myself saw for the first time – left me with a sense of the grandness of our land, our planet, and, indeed, our universe. We felt part of it all, from the storm and the bears in Yellowstone to the peaceful and secluded shoreline of Nantucket to the bustling floors of the U.S. Capitol in Washington, D.C. We’re not just in America. We’re of America.
We were just one small family among millions enjoying their summer vacations. But for us this was an extra special vacation, one that I hope will always be a reference point for our daughter, no matter what the outcome of my situation as a person gene-positive for Huntington’s disease.
Like so many people in my position, I have planned for the worst yet tried to live as if it will never happen.
I know that I could very soon follow in the footsteps of my mother, who was reduced by HD to a mere shadow of herself and died in 2006.
But I’ve tried to pack in as much life as possible.
Seizing the moment
Ever since testing positive for HD in 1999 and taking part in the birth of our HD-free daughter in 2000, I have worried deeply about whether I will see her grow up, graduate from college, and set out on her own life of work and love.
I have been blessed. Whereas my mother probably had the early psychiatric symptoms of HD in her late 40s, I reached my 50th birthday apparently free of the classic symptoms of HD. Still, all the scientific evidence suggests that the genetic defect is already attacking my brain and perhaps causing subtle, almost imperceptible symptoms.
On June 27, the day after my daughter’s tenth birthday, I seized the moment and embarked with my family on a month-long vacation. I wanted to take advantage of my good health by bringing our family closer together and creating lifelong memories for our daughter.
The force of nature
In this day and age of plane travel, we toured America coast to coast by car, just as my parents used to do with my family in the 1960s and early 1970s. (I didn’t ride on a plane until age 18, but my daughter had already flown to Brazil before she turned one!) From San Diego we drove to the Excalibur in Las Vegas, spent a night in Salt Lake City, and then headed to Yellowstone National Park.
At Yellowstone we experienced the beautiful and haunting power of nature within the first few hours. Driving home at dusk after watching the Old Faithful geyser, we saw a grizzly bear crossing a river near the road.
A baby black bear near our car on our last day at Yellowstone (photo by Gene Veritas)Moments later, driving back to our hotel in West Yellowstone, Montana, flashes of lightning lit up the western sky. It started to rain hard, and then a storm of hail forced us to stop on the shoulder. We feared that our windshield might crack. The car thermometer plummeted from 70 to 45 degrees in just a few minutes.
Once the rain cleared, my daughter couldn’t wait to return to the hotel to write down in her trip journal the assault of nature she had just experienced.
Touring a diverse land
It set the tone for the rest of the trip – a symbol of the vastness and geographical and cultural diversity of our great country.
After Yellowstone we ate trout caught by my daughter and Huntington’s Disease Society of America (HDSA) national board member Rob Millum at his pond in Buffalo, Wyoming; witnessed the majesty of Mount Rushmore, the Crazy Horse Memorial, and Wind Cave National Park in South Dakota; saw cheese-making at Decatur Dairy in Brodhead, Wisconsin; visited Notre Dame and Yale, two of America’s leading universities; spent several relaxing days at a college friend’s home on Nantucket; ate coal oven pizza in Greenwich Village with another college friend; and viewed the Liberty Bell and Independence Hall in Philadelphia.
Rob Millum expertly caught, cleaned, and grilled trout (photo by Gene Veritas). We also saw the spectacular museums and public buildings and monuments of our nation’s capital; experienced the wisdom and ingenuity of Thomas Jefferson’s Monticello in Virginia; learned, in a visit to Memphis, about the deep impact on our land of Elvis Presley and Martin Luther King Junior; strolled through the artful town of Santa Fe, New Mexico; visited the site of the construction of the first nuclear bomb at nearby Los Alamos; and, as a grand finale, took in the Grand Canyon.
Along the way we enjoyed many dishes new to both my daughter and my wife, who is Brazilian: Wyoming buffalo meat, New Haven pizza, Philly cheese steaks, Memphis barbecue, and New Mexican cuisine.
Mount Rushmore the night of July 4 (photo by Gene Veritas)During much of the trip we renewed ties with old friends and family members who graciously opened their doors and cooked us wonderful meals, a welcome break from hotels and the fast food we ate during 500-mile days on the highway.
A break from HD
We logged 8,300 miles in 32 days. The pace was hectic but exhilarating.
Throughout most of the trip I simply forgot about Huntington’s disease. As a fellow HDSA-San Diego board member put it, I deserved this vacation! From late 2008, when we began revamping our chapter website, until this past June I have blogged a couple times per month, put out several chapter e-newsletters, attended the CHDI (unofficially known as the Cure Huntington’s Disease Initiative) conference in Palm Springs, and worked in a range of other chapter activities.
In the midst of all this, in September 2009, my father, the Huntington’s disease warrior who cared for my mother for fifteen 15 years, died just a few days before his 82nd birthday.
For those 32 days I barely glanced at e-mail.
A joyful time
When the subject of HD came up, we didn’t flee. In my home state of Ohio my wife and I recalled with my cousin and his wife my parents’ struggle with HD and the disease’s big part in our decision to have only one child.
In New Haven an old college friend asked me how I was doing health-wise, and I explained to him that I had now gone beyond the age of my mother’s apparent onset.
Indeed, I felt deeply privileged to be able to take the trip. It was truly a joyful month!
From “pseudonymous” to going public
During dinner at the Nantucket home of Robi Blumenstein, the President of CHDI Management, Inc., the topic of HD naturally came up. As always, it was good to hear Robi speak of the latest progress in the search for treatments and a cure.
I spoke openly about this blog, mentioning the fact that I use a “pseudonym.” My daughter, who was sitting next to me, had recently read the three children’s books by “Pseudonymous Bosch,” known as the Secret Series. Shocked, she asked, “Are you Pseudonymous?!”
No, I explained, I wasn’t. But I let her take in everything about the blog as I resumed the conversation with Robi and the other guests. For the first time, she learned that I blog about HD. Surely and steadily she is learning more about her father’s own long-held secret and witnessing how I am going public about it. (Click here to read more.)
An extra special vacation
As I put down the first notes for this entry after our arrival in San Diego on July 28, I told myself: “mission accomplished!” I had planned this trip since summer 2009. We reached all of our goals and kept on schedule, with no flat tires or major car emergencies. We managed to keep good humor in close quarters, and our daughter showed great patience as she spent long hours in the back seat far from home, beloved pet dog, and friends.
Gene on the Mickelson Trail in South Dakota (family photo).Traveling through our great country and showing it to my family – including many places that I myself saw for the first time – left me with a sense of the grandness of our land, our planet, and, indeed, our universe. We felt part of it all, from the storm and the bears in Yellowstone to the peaceful and secluded shoreline of Nantucket to the bustling floors of the U.S. Capitol in Washington, D.C. We’re not just in America. We’re of America.
We were just one small family among millions enjoying their summer vacations. But for us this was an extra special vacation, one that I hope will always be a reference point for our daughter, no matter what the outcome of my situation as a person gene-positive for Huntington’s disease.
Monday, June 14, 2010
Charting new territory: going public about HD
On June 10, for the first time ever, I revealed in public that I am gene-positive for Huntington’s disease.
It’s been a long road – from the time I learned in late 1995 of my mother’s diagnosis for HD, to the test in 1999 that changed my life forever, to the speech at which I had the courage to tell an audience that my mother died of HD and that I run the risk of developing the disease at any moment.
The reasons for not going public continued to loom like enormous storm clouds in the days and hours leading up to the speech that I gave at the Catholic University of Rio Grande do Sul in Porto Alegre, Brazil. By revealing that I would likely lose my ability to walk, talk, and think at some point in the next decade, I would be forever putting at risk the possibility of advancement in a field in which people highly prize research, writing, and speaking.
Now that I’ve opened up to others in public, I’ve thrown off my protective sheath of anonymity. I didn’t realize how convenient, comfortable, and reassuring it was to have that anonymity. I could avoid controversy, and I could go on acting as if nothing would happen to me.
I now feel that I’m charting completely new territory in my life, the life of my family, and my involvement in the movement to stop HD. I have no way of knowing what triumphs and pitfalls await me. I fear that I won’t be ready for them when they occur.
Planning a trial run
In January I received an invitation from the Catholic University to speak on the theme of sustainable development. That’s not my field, but as a frequent commentator on current events for Brazilian newspapers, I felt fully capable of working up a presentation.
Just days before I had completed the first draft of my previous blog entry, “God, Huntington’s disease and the meaning of life,” which featured a discussion of the life and writings of the Catholic Jesuit priest Teilhard de Chardin (1881-1955). Teilhard focused on ecological issues in parts of his work, and he has inspired more recent thinkers to embrace environmentalism.
I decided that in 2010 I would start going public. So I decided to use the speech to start getting the feel for life out of the HD closet.
I felt comfortable sharing my HD predicament, speaking in Portuguese, with a Brazilian audience. Brazil is a second home for me; I first traveled there in 1986 and haven’t missed a year since.
At the same time, I felt that revealing my situation for the first time before an audience in a distant land was less risky than doing it in my own backyard. It’s hard to explain, but it felt safer than coming out someplace closer to home like work, where I’m not yet ready to speak to people about HD. It would be a trial run for both a speech on my gene-positive status and the powerful feelings sure to surge up from within the depths of my being after so many years of public silence.
The act of going public
About 250 people gathered in the auditorium for my speech. There were students, professors, and people from the local community.
After I provided some background on myself and some thoughts on 25 years as a historian of Brazil, I began by showing pictures of three people with HD. I explained that HD is a 100-percent genetic disease and that people with the defective gene all get sick. I described it as a combination of Alzheimer’s and Parkinson’s diseases. Huntington’s, I explained, attacks the brain and robs people of their ability to walk, speak, think, and swallow.
Many HD people shake or have exaggerated movements. As a result, I continued, HD people are sometimes arrested by the police on suspicion of drunkenness. Standing at the podium, I tried to recreate the movements of an HD person by swaying left and right.
HD can go on for up to 20 years, I said. During that time the patient becomes increasingly dependent on relatives and caregivers.
The end is a difficult and sad death.
After describing the three pictures in detail, I put up a slide demonstrating MRI images of a healthy brain and another terribly compromised by HD, with large areas of white space where neurons had died.
There is no treatment or cure – only a few palliatives to reduce the effects of symptoms such as the uncontrollable movements. No medication attacks the disease’s root causes.
Getting personal
Without pause, I went on: my mother died of the disease in 2006. Because my wife and I wanted to have a child, I got tested eleven years ago this month. The result was positive.
“Tonight, before you in this beloved and honored land of Rio Grande do Sul, I am speaking publicly about my situation for the very first time,” I said, my voice becoming more intense. “This means a lot, because it’s been 15 years of anonymity – an anonymity imposed by the fear of genetic discrimination, a new discrimination created by the advances of science, which increasingly allow a person to know his or her future health profile, and discrimination also because denial and prejudice continue to impede the understanding and acceptance of people with disabilities.”
I’m okay now, I told the audience. But the disease could start at any moment.
I finished the HD portion of the presentation by showing two photos I had taken illustrating the Isis Pharmaceuticals, Inc., research for an oligonucleotide that could become a potential treatment to attack the disease at its genetic roots.
During the conclusion of the speech, I returned to the theme of HD. “We face immense problems, from the cure of diseases such as Huntington’s to the salvation of the planet from environmental destruction,” I said. “But our capacity for research is also growing.”
Worrying about reactions
In the days before and after the speech I feared how people would react.
My wife, who is Brazilian, counseled me not to mix my work with personal life. It wasn’t right, she said, to insert into the speech something that (apparently) had nothing to do with the requested topic. But the organizer of the event had given my wide discretion, and I believed that a personal reflection comparing the need for research on two critical problems facing humanity would capture the audience’s attention.
Later, however, my wife came to understand my need to include HD. I reminded her that if we in the HD community won’t even speak out for ourselves, then nobody else will have any reason to care about us. She agreed.
The morning of June 7, the day before I departed for Brazil (without my wife or daughter), I had an intense dream in which I had a very frank and amiable conversation with a cousin whose mother had kept him in the dark about my mother’s condition until she died. In my waking life, I am extremely angry at this branch of the family for ignoring my mother. I awoke from the dream with the absolute conviction that I needed to come out about HD during my speech.
The aftermath
It’s impossible to know what people in a crowded auditorium are thinking about a speech. I noticed that people seemed riveted throughout the presentation.
After the speech, three commentators – Brazilian experts on sustainable development – offered their thoughts on my words. All three of them expressed solidarity with my situation, and one in particular thought my personal reflection was very important.
In a long question-and-answer session with the audience, however, nobody asked anything about HD. I was disappointed. Neither did the topic come up afterwards at a dinner with the organizer and two of the commentators.
This was probably the first time that anybody in the audience had heard of HD. Despite the increasing publicity, HD remains still a relatively unknown disease even in the U.S., compared with amyotrophic lateral sclerosis (Lou Gehrig’s disease), Alzheimer’s, Parkinson’s, and muscular dystrophy.
Brazil is many years behind in awareness about neurological diseases. The Huntington’s Disease Society of America has more than 30 chapters and 25 Centers of Excellence for Family Services and Research. However, Brazil, a country of nearly 200 million people and an estimated 20,000 HD people, has the equivalent of only two chapters, only incipient family services, and no research programs for treatments or a cure. The Associação Brasil Huntington was founded in 1997 and bravely seeks to assist HD families spread throughout a country larger than the continental U.S.
Also, the fact that I am currently asymptomatic undoubtedly reduced the impact of my comments on HD. If I were already showing symptoms, the presentation would have been infinitely more powerful.
One woman, though, left me a note with a little prayer card thanking me for the opportunity to hear me speak. “Don’t forget that for God nothing is impossible!” she wrote. “May the size of the problem become small alongside the size of your faith!”
Another woman, an engineer, thanked me for my courage in speaking about HD and for pointing out, via Teilhard, how everything in the world is interrelated. Lamenting the attitude of a colleague who doesn’t want to consider his projects’ impact on people, she agreed with me that everything we do has a social consequence.
Unpredictable paths
After the speech I felt angry for a while at my colleagues. I asked myself: why didn’t they want to know more about HD or my situation? But, thinking about it carefully, I understood that it wasn’t fair to expect any further curiosity, given the general lack of knowledge about HD and the fact that the main theme of the speech did not deal with it.
Over the years my wife has regularly warned me about this. In fact, she worries deeply about how I will handle the lack of attention and maybe even rejection that will be part of a public stance about my gene-positive status.
Away from my family and friends in San Diego, I felt very lonely in Rio Grande do Sul.
When I revealed that I was gene-positive, no bells rang, no lightning struck. Coming out as I did is just one step by one person in the process of building awareness about Huntington’s disease. It’s a huge personal step for me, but the steps still will be even bigger and more important ones as I strive to keep healthy and do my part to the build the movement.
Before June 10, I was quite accustomed to acting as a behind-the-scenes advocate.
Now I gently leave behind that phase of my life to try out new and unpredictable paths.
Moment by moment
No matter how widely known my gene-positive status becomes, I will continue to write in this blog under the pseudonym “Gene Veritas.” The name has come to mean a lot to me and to many of the readers of this blog. It’s a trademark – “the truth in my genes” – that reveals so much about my predicament and that of so many other people facing the possibility of a genetic disease. It also gives me the freedom to continue expressing myself freely about HD.
Going public about HD is a process for which there is no ritual or long history of examples. I’ll learn as I go, finding the right formula and pace for me.
I have learned to take living at risk for HD day by day. For a while, at least, I will go moment by moment as I step further out of the HD closet.
Right now, I’m going to rest up from my trip and let tomorrow worry about tomorrow.
It’s been a long road – from the time I learned in late 1995 of my mother’s diagnosis for HD, to the test in 1999 that changed my life forever, to the speech at which I had the courage to tell an audience that my mother died of HD and that I run the risk of developing the disease at any moment.
The reasons for not going public continued to loom like enormous storm clouds in the days and hours leading up to the speech that I gave at the Catholic University of Rio Grande do Sul in Porto Alegre, Brazil. By revealing that I would likely lose my ability to walk, talk, and think at some point in the next decade, I would be forever putting at risk the possibility of advancement in a field in which people highly prize research, writing, and speaking.
Now that I’ve opened up to others in public, I’ve thrown off my protective sheath of anonymity. I didn’t realize how convenient, comfortable, and reassuring it was to have that anonymity. I could avoid controversy, and I could go on acting as if nothing would happen to me.
I now feel that I’m charting completely new territory in my life, the life of my family, and my involvement in the movement to stop HD. I have no way of knowing what triumphs and pitfalls await me. I fear that I won’t be ready for them when they occur.
Planning a trial run
In January I received an invitation from the Catholic University to speak on the theme of sustainable development. That’s not my field, but as a frequent commentator on current events for Brazilian newspapers, I felt fully capable of working up a presentation.
Just days before I had completed the first draft of my previous blog entry, “God, Huntington’s disease and the meaning of life,” which featured a discussion of the life and writings of the Catholic Jesuit priest Teilhard de Chardin (1881-1955). Teilhard focused on ecological issues in parts of his work, and he has inspired more recent thinkers to embrace environmentalism.
I decided that in 2010 I would start going public. So I decided to use the speech to start getting the feel for life out of the HD closet.
I felt comfortable sharing my HD predicament, speaking in Portuguese, with a Brazilian audience. Brazil is a second home for me; I first traveled there in 1986 and haven’t missed a year since.
At the same time, I felt that revealing my situation for the first time before an audience in a distant land was less risky than doing it in my own backyard. It’s hard to explain, but it felt safer than coming out someplace closer to home like work, where I’m not yet ready to speak to people about HD. It would be a trial run for both a speech on my gene-positive status and the powerful feelings sure to surge up from within the depths of my being after so many years of public silence.
The act of going public
About 250 people gathered in the auditorium for my speech. There were students, professors, and people from the local community.
After I provided some background on myself and some thoughts on 25 years as a historian of Brazil, I began by showing pictures of three people with HD. I explained that HD is a 100-percent genetic disease and that people with the defective gene all get sick. I described it as a combination of Alzheimer’s and Parkinson’s diseases. Huntington’s, I explained, attacks the brain and robs people of their ability to walk, speak, think, and swallow.
Many HD people shake or have exaggerated movements. As a result, I continued, HD people are sometimes arrested by the police on suspicion of drunkenness. Standing at the podium, I tried to recreate the movements of an HD person by swaying left and right.
HD can go on for up to 20 years, I said. During that time the patient becomes increasingly dependent on relatives and caregivers.
The end is a difficult and sad death.
After describing the three pictures in detail, I put up a slide demonstrating MRI images of a healthy brain and another terribly compromised by HD, with large areas of white space where neurons had died.
There is no treatment or cure – only a few palliatives to reduce the effects of symptoms such as the uncontrollable movements. No medication attacks the disease’s root causes.
Getting personal
Without pause, I went on: my mother died of the disease in 2006. Because my wife and I wanted to have a child, I got tested eleven years ago this month. The result was positive.
“Tonight, before you in this beloved and honored land of Rio Grande do Sul, I am speaking publicly about my situation for the very first time,” I said, my voice becoming more intense. “This means a lot, because it’s been 15 years of anonymity – an anonymity imposed by the fear of genetic discrimination, a new discrimination created by the advances of science, which increasingly allow a person to know his or her future health profile, and discrimination also because denial and prejudice continue to impede the understanding and acceptance of people with disabilities.”
I’m okay now, I told the audience. But the disease could start at any moment.
I finished the HD portion of the presentation by showing two photos I had taken illustrating the Isis Pharmaceuticals, Inc., research for an oligonucleotide that could become a potential treatment to attack the disease at its genetic roots.
During the conclusion of the speech, I returned to the theme of HD. “We face immense problems, from the cure of diseases such as Huntington’s to the salvation of the planet from environmental destruction,” I said. “But our capacity for research is also growing.”
Worrying about reactions
In the days before and after the speech I feared how people would react.
My wife, who is Brazilian, counseled me not to mix my work with personal life. It wasn’t right, she said, to insert into the speech something that (apparently) had nothing to do with the requested topic. But the organizer of the event had given my wide discretion, and I believed that a personal reflection comparing the need for research on two critical problems facing humanity would capture the audience’s attention.
Later, however, my wife came to understand my need to include HD. I reminded her that if we in the HD community won’t even speak out for ourselves, then nobody else will have any reason to care about us. She agreed.
The morning of June 7, the day before I departed for Brazil (without my wife or daughter), I had an intense dream in which I had a very frank and amiable conversation with a cousin whose mother had kept him in the dark about my mother’s condition until she died. In my waking life, I am extremely angry at this branch of the family for ignoring my mother. I awoke from the dream with the absolute conviction that I needed to come out about HD during my speech.
The aftermath
It’s impossible to know what people in a crowded auditorium are thinking about a speech. I noticed that people seemed riveted throughout the presentation.
After the speech, three commentators – Brazilian experts on sustainable development – offered their thoughts on my words. All three of them expressed solidarity with my situation, and one in particular thought my personal reflection was very important.
In a long question-and-answer session with the audience, however, nobody asked anything about HD. I was disappointed. Neither did the topic come up afterwards at a dinner with the organizer and two of the commentators.
This was probably the first time that anybody in the audience had heard of HD. Despite the increasing publicity, HD remains still a relatively unknown disease even in the U.S., compared with amyotrophic lateral sclerosis (Lou Gehrig’s disease), Alzheimer’s, Parkinson’s, and muscular dystrophy.
Brazil is many years behind in awareness about neurological diseases. The Huntington’s Disease Society of America has more than 30 chapters and 25 Centers of Excellence for Family Services and Research. However, Brazil, a country of nearly 200 million people and an estimated 20,000 HD people, has the equivalent of only two chapters, only incipient family services, and no research programs for treatments or a cure. The Associação Brasil Huntington was founded in 1997 and bravely seeks to assist HD families spread throughout a country larger than the continental U.S.
Also, the fact that I am currently asymptomatic undoubtedly reduced the impact of my comments on HD. If I were already showing symptoms, the presentation would have been infinitely more powerful.
One woman, though, left me a note with a little prayer card thanking me for the opportunity to hear me speak. “Don’t forget that for God nothing is impossible!” she wrote. “May the size of the problem become small alongside the size of your faith!”
Another woman, an engineer, thanked me for my courage in speaking about HD and for pointing out, via Teilhard, how everything in the world is interrelated. Lamenting the attitude of a colleague who doesn’t want to consider his projects’ impact on people, she agreed with me that everything we do has a social consequence.
Unpredictable paths
After the speech I felt angry for a while at my colleagues. I asked myself: why didn’t they want to know more about HD or my situation? But, thinking about it carefully, I understood that it wasn’t fair to expect any further curiosity, given the general lack of knowledge about HD and the fact that the main theme of the speech did not deal with it.
Over the years my wife has regularly warned me about this. In fact, she worries deeply about how I will handle the lack of attention and maybe even rejection that will be part of a public stance about my gene-positive status.
Away from my family and friends in San Diego, I felt very lonely in Rio Grande do Sul.
When I revealed that I was gene-positive, no bells rang, no lightning struck. Coming out as I did is just one step by one person in the process of building awareness about Huntington’s disease. It’s a huge personal step for me, but the steps still will be even bigger and more important ones as I strive to keep healthy and do my part to the build the movement.
Before June 10, I was quite accustomed to acting as a behind-the-scenes advocate.
Now I gently leave behind that phase of my life to try out new and unpredictable paths.
Moment by moment
No matter how widely known my gene-positive status becomes, I will continue to write in this blog under the pseudonym “Gene Veritas.” The name has come to mean a lot to me and to many of the readers of this blog. It’s a trademark – “the truth in my genes” – that reveals so much about my predicament and that of so many other people facing the possibility of a genetic disease. It also gives me the freedom to continue expressing myself freely about HD.
Going public about HD is a process for which there is no ritual or long history of examples. I’ll learn as I go, finding the right formula and pace for me.
I have learned to take living at risk for HD day by day. For a while, at least, I will go moment by moment as I step further out of the HD closet.
Right now, I’m going to rest up from my trip and let tomorrow worry about tomorrow.
Monday, June 07, 2010
God, Huntington's disease and the meaning of life
(This entry is dedicated to the physicians and scientists seeking treatments and a cure for HD.)
Summary
How could God allow people to suffer from a cruel disease like Huntington’s, which slowly kills by destroying the brain?
As a person who is gene-positive for HD, I have pondered this question for years. This article is my manifesto of faith and HD.
In college I learned about process theology, which sustains that God is evolving along with humanity. Later I studied liberation theology, a divine call to build the Kingdom of God in the here and now. It helped inspire me to become an activist for the Huntington’s Disease Society of America.
My religion, Catholicism, has arrived at a synthesis of faith and science and accepts the theory of evolution.
HD perhaps resulted from evolution gone wild. But it may serve a purpose as of yet undiscovered. HD people have a huge cross to carry, but they should see their lives as part of the evolutionary surge towards a better life for all.
To understand this predicament, I studied the life and writings of Teilhard de Chardin, a Jesuit priest, World War I stretcher-bearer, and world-renowned paleontologist. More than anybody else, Teilhard led Catholicism to embrace evolution. He is the “Catholic Darwin.”
Teilhard’s master work was The Phenomenon of Man, a modern, scientific creation narrative centered on evolution. Teilhard affirmed that the central thread in all of evolution is the rise of consciousness. The earth is now encompassed by a “thinking layer” of conscious beings.
Research is the soul of evolution. It enables us to strive for the perfection of our species, including the drive to eliminate Huntington’s and other devastating diseases.
Part I: God and evolution
The big question
If God created and loves us, why does He (or She) allow us to become ill?
And how could God allow people to suffer from Huntington’s disease, which slowly and cruelly, over 15 to 20 years, reduces people to a mere shadow of themselves by destroying their brains and robbing them of their ability to speak, walk, swallow, and think?
Having tested positive for this 100-percent genetic condition in 1999 and watched the disease ravage my mother’s brain until her death in 2006, I have pondered these questions for many years.
Around Easter of 2009, for instance, I wondered why God – who in the Bible had saved the Israelites from the oppressive Egyptians, cured the sick, and raised people from the dead – did nothing for children with juvenile Huntington’s. We in Huntington’s families often feel the same kind of utter abandonment that Jesus Christ, the Son of God, felt when forsaken by his Father during His crucifixion by soldiers of the Roman Empire on Good Friday.
An HD patient at Edgemoor Hospital in Santee, CA (photo by Mike Nowak)Christ rose from the dead, but HD people, helpless, remain confined to their wheelchairs and cannot sing praises to God – although they perhaps express themselves in their own special, interior manner, just as many people with other kinds of less severe disabilities and illnesses find ways to cope and remain creative.
God and evil
In recent months I have reflected profoundly on these questions once again. They became especially poignant late last year, after the death of my 81-year-old father, a Huntington’s disease warrior who cared for my mother for 15 years.
I completed the first draft of this essay on December 31, 2009 – my 50th birthday. “Dad, you’re half way to a hundred,” declared my “miracle daughter,” who tested negative in the womb for HD ten years ago this past January.
Lashing out at God is the easy response to these bewildering ironies. But I believe it is more productive to tackle the far more challenging task of understanding the meaning of Huntington’s disease and how it fits into the story of humanity. As both a person of faith and student of the science of Huntington’s disease, I have strived mightily to make sense of my predicament.
In my youth I confronted the contradiction between a merciful God and the existence of evil by learning about the doctrine of free will. Evil exists because God gives each individual the freedom to determine his or her own life, and that includes the ability to choose between good and evil.
Later, in college, I learned of the unspeakable atrocities of the Holocaust, war, and countless other examples of inhumane behavior. I discovered an explanation to this paradox in process theology. In its simplest form, and as I interpreted it, this theological school of thought sustains that God is evolving along with humanity and therefore does not exercise complete control over it. Humanity seeks to improve itself, but God is advancing too.
The divine call to activism
More recently I delved into a study of the liberation theology movement. Liberation theology, too, interprets humanity in the light of an evolutionary process in which believers do not wait for salvation in the afterlife but join together to begin constructing the Kingdom of God on earth as a prelude to eternal existence. As God delivered the Israelites to the Promised Land and as Christ beseeched his listeners to treat others as they treat themselves, liberation theology advocates the fight for social justice.
In this outlook religion and politics go hand in hand. God wants us to become activists in order to build a more fraternal society.
The cover of Gustavo Gutierrez's A Theology of Liberation, one of the first works of its kind.As a child I prayed fervently for straight As on my report card. But as an adult I no longer believed in a God-magician who manipulates people’s lives by having them win the lottery or striking them with diseases. I believed in the God of human community – the same community that people experience during a religious service or in taking Holy Communion or in visiting the sick in the hospital. I recently shared this outlook with my daughter as we watched the film Mother Teresa of Calcutta, a powerful portrayal of how we can see God in the faces of our fellow humans.
I was naturally devastated when I learned the day after Christmas 1995 that my mother had Huntington’s and that I had a 50-50 chance of inheriting it (click here to read more). My wife and I are Catholic, and we sought solace by attending Mass. But I understood the science of HD, and I did not believe that God would extirpate the defective genetic material from my mother’s body and cure her of the disease.
This was not lack of faith – as surely some believers would claim – but actually an affirmation of faith as I understood it. I channeled most of my energies into learning about Huntington’s at the local HD support group, joining the board of the local chapter of the Huntington’s Disease Society of America (HDSA), and participating in research experiments. For me, these efforts are deeply religious because they answer God’s call for collective action for social justice and the betterment of humanity. They contribute to the evolutionary process that God and humans share.
A manifesto of faith and HD
But what meaning could Huntington’s disease itself have for my life and the lives of the tens of thousands of people afflicted with it or at risk? Aren’t my HDSA activism and the belief system I have constructed for myself just another form of denial of the crippling consequences resulting from the impending shriveling of my brain? Can banding together to fight for a better life for our community really make a difference?
My Catholic upbringing originally led me to investigate the problem of evil and the divine call for social justice. I am now a couple of years past the age when HD struck my mother. As I have attempted to learn the science of HD in order to comprehend what is occurring in my very own brain cells, I have also sought to explore the part that God and faith play in this predicament and its solution.
I have found answers by examining more deeply both the science and my religious tradition. This examination led me to write this article, a manifesto of my faith and of the significance of Huntington’s disease in history and for our times – and for the suffered lives of its victims.
The nexus of faith and science
Catholicism stands at the nexus of faith and science and, as a system of thought, has provided humanity with a clear view of the holistic nature of our existence.
This statement collides with some people’s opinions about religion in general and Catholicism in particular. These people see religious belief as a sign of ignorance, and they especially view Catholicism as backward because of its apparent animosity towards science. Many assume, for instance, that Catholicism preaches a fundamentalist interpretation of the Bible – in other words, a literal belief in Adam and Eve and the creation of the world in six days.
Such views are appallingly inaccurate. Our university system, one of the great marks of Western civilization, originated in the Catholic Church. Teaching orders such as the Society of Jesus (the Jesuits) have always placed a great emphasis on scientific knowledge and have themselves produced some of the world’s great scientists. In the nineteenth century the Augustinian monk Gregor Mendel discovered heredity by studying his famous pea plants. Mendel is now known as the father of modern genetics.
Gregor MendelAcceptance of evolution
Catholic biblical scholars long ago abandoned the idea of literal interpretations. Significantly, over the past half century the leadership of the Catholic Church has come to accept Charles Darwin’s theory of the evolution of species, although it maintains, of course, that it was God who initiated the universe and set evolution in motion.
Notably, in their many reflections on evolution, the Catholic popes have gone to great length to reaffirm the compatibility of science and faith. In 2004, before he became pope, Cardinal Joseph Ratzinger stated that evolution is part of God’s plan for creation. In 2007, as Pope Benedict XVI, he labeled as “absurd” the antithesis between “creationism” and “evolution.”
“On the one hand, there are so many scientific proofs in favor of evolution, which appears to be a reality we can see and which enriches our knowledge of life and being as such,” Benedict XVI stated. “But on the other, the doctrine of evolution does not answer every query, especially the great philosophical question: Where does everything come from? And how did everything start which ultimately led to man?”
Today official Catholicism embraces the idea of “theistic evolution,” as do many Jews, Hindus, and Muslims. As summarized by Dr. Francis Collins – the head of the Genome Project and a convert from atheism to Christianity – theistic evolution accepts the premises of the Big Bang theory, evolution, and natural selection. It also affirms that “humans are … unique in ways that defy evolutionary explanation and point to our spiritual nature. This includes the existence of the Moral Law (the knowledge of right and wrong) and the search for God that characterizes all human cultures throughout history.”
God’s tough plan
Because it requires the acceptance of the hard realities of life without an interventionist God, the belief in theistic evolution requires intellectual, emotional, and spiritual maturity on the part of religious organizations and the individual.
As Dr. Collins puts it, theistic evolution forces us to consider that perhaps God’s plan “is not the same as our plan. This is a hard concept, especially if we have been too regularly spoon-fed a version of God’s benevolence that implies nothing more on His part than a desire for us to be perpetually happy.”
Quoting the great Christian writer C. S. Lewis, author of The Chronicles of Narnia and Mere Christianity, Collins affirms that “we want, in fact, not so much a father in Heaven as a grandfather in Heaven – a senile benevolence who, as they say, ‘likes to see young people enjoying themselves,’ and whose plan for the universe was simply that it might be truly said at the end of each day, ‘a good time was had by all.’”
C. S. LewisIn the New Testament Jesus stated: “I have come that you might have life, and have it abundantly.” He also told his followers: “Take up your cross and follow me.”
We in the Huntington’s community have especially difficult crosses to bear. But no matter how heavy they might be, we must pick them up and keep moving ahead as much as possible. There is no miraculous end to the disease – only the hard work of progressing towards better scientific understanding of the disease and eventual treatments and a cure, all as part of the process of evolution towards a better life for all.
We in the HD community stand on the cutting edge of evolution, both biological and social.
In 1994 scientists studying the evolution of HD used computer simulations to predict that the incidence of the disease will increase. In 2006 Dr. William Brusilow published a study suggesting that HD was an example of evolution gone wild.
Commenting on Brusilow’s work, Dr. Marsha Miller noted that the Huntington’s protein (huntingtin) “is an old one – even yeast have it – yet, humans are the only animal to get Huntington’s disease. Primates don’t develop the disease (unless it’s genetically engineered)…. Why us? Does polyglutamine expansion [the cause of HD] give our species any advantage? It is known that people with the HD gene are less likely to get certain forms of cancer, most likely because of elevated levels of P53, a protein which suppresses cancer. But is there anything else?” Brusilow speculated that the HD mutation was perhaps part of an attempt to create a safe reservoir of necessary substances in the brain during times of famine.
William Brusilow
We in the Huntington’s community have especially difficult crosses to bear. But no matter how heavy they might be, we must pick them up and keep moving ahead as much as possible. There is no miraculous end to the disease – only the hard work of progressing towards better scientific understanding of the disease and eventual treatments and a cure, all as part of the process of evolution towards a better life for all.
We in the HD community stand on the cutting edge of evolution, both biological and social.
In 1994 scientists studying the evolution of HD used computer simulations to predict that the incidence of the disease will increase. In 2006 Dr. William Brusilow published a study suggesting that HD was an example of evolution gone wild.
Commenting on Brusilow’s work, Dr. Marsha Miller noted that the Huntington’s protein (huntingtin) “is an old one – even yeast have it – yet, humans are the only animal to get Huntington’s disease. Primates don’t develop the disease (unless it’s genetically engineered)…. Why us? Does polyglutamine expansion [the cause of HD] give our species any advantage? It is known that people with the HD gene are less likely to get certain forms of cancer, most likely because of elevated levels of P53, a protein which suppresses cancer. But is there anything else?” Brusilow speculated that the HD mutation was perhaps part of an attempt to create a safe reservoir of necessary substances in the brain during times of famine.
William BrusilowThe HD community fights on the barricades of many of today’s key developments and controversies: the Genome Project and the biotechnological boom, the quest to understand the brain and human consciousness, stem-cell research, new kinds of experimentation on humans, antisense technology and oligonucleotides, genetic testing and genetic discrimination, healthcare reform, and abortion.
Part II: The ‘Catholic Darwin’
Priest, war veteran, and paleontologist
The individual most responsible for synthesizing Catholicism and evolution was Pierre Teilhard de Chardin, a French Jesuit and paleontologist born in 1881. Some have called Teilhard the “Catholic Darwin.”
I identified with Teilhard on several levels. He was deeply spiritual, but also a first-rate intellectual and scientist.
I also admired Teilhard as a man of action involved in the major events and issues of his era.
Teilhard volunteered to serve as a stretcher-bearer in the front lines during World War I. A number of Jesuit colleagues and two of his brothers died in the conflict. At one point he carried a dead man’s body on his back. He was cited for his many acts of bravery.
Teilhard, the war veteran
The war exposed Teilhard to the worst possible examples of personal pain and man’s inhumanity to man. Yet he optimistically viewed the war as a necessary stage in human development. “The world is still being created,” he wrote. “The cross, it follows, does not represent an expiation for sin so much as the arduous and painful travail of evolution in its present human, social phase.”
Teilhard’s witness of death and destruction gave him a deeper appreciation of physical matter.
In his “Hymn to Matter,” he wrote: “Blessed be you, harsh matter, barren soil, stubborn rock: . . . Blessed be you, mighty matter, irresistible march of evolution, reality ever newborn: . . . the sap of our souls, the hand of God, the flesh of Christ: it is you, matter, that I bless. . . . I acclaim you as the universal power which brings together and unites . . . I acclaim you as the divine milieu, charged with creative power, as the ocean stirred by the Spirit, as the clay molded and infused with life by the incarnate Word.”
Teilhard, geologist and paleontologist
Part II: The ‘Catholic Darwin’
Priest, war veteran, and paleontologist
The individual most responsible for synthesizing Catholicism and evolution was Pierre Teilhard de Chardin, a French Jesuit and paleontologist born in 1881. Some have called Teilhard the “Catholic Darwin.”
I identified with Teilhard on several levels. He was deeply spiritual, but also a first-rate intellectual and scientist.
I also admired Teilhard as a man of action involved in the major events and issues of his era.
Teilhard volunteered to serve as a stretcher-bearer in the front lines during World War I. A number of Jesuit colleagues and two of his brothers died in the conflict. At one point he carried a dead man’s body on his back. He was cited for his many acts of bravery.
Teilhard, the war veteran The war exposed Teilhard to the worst possible examples of personal pain and man’s inhumanity to man. Yet he optimistically viewed the war as a necessary stage in human development. “The world is still being created,” he wrote. “The cross, it follows, does not represent an expiation for sin so much as the arduous and painful travail of evolution in its present human, social phase.”
Teilhard’s witness of death and destruction gave him a deeper appreciation of physical matter.
In his “Hymn to Matter,” he wrote: “Blessed be you, harsh matter, barren soil, stubborn rock: . . . Blessed be you, mighty matter, irresistible march of evolution, reality ever newborn: . . . the sap of our souls, the hand of God, the flesh of Christ: it is you, matter, that I bless. . . . I acclaim you as the universal power which brings together and unites . . . I acclaim you as the divine milieu, charged with creative power, as the ocean stirred by the Spirit, as the clay molded and infused with life by the incarnate Word.”
Teilhard, geologist and paleontologist After the war Teilhard resumed his graduate studies and obtained a doctorate in paleontology. Having taken an interest in rocks as a child, he was also well-versed in geology. Teilhard declared himself an adherent of the theory of evolution.
Teilhard’s positive and intriguing outlook on pain, suffering, and evolution inspired me to search for the broader social and scientific implications of my own plight, and his highly practical spirituality of matter helped me to feel the presence of the divine in everything, including my HDSA activism and my personal fight to delay the onset of symptoms.
Faith and reason
But the Catholic hierarchy of the 1920s was not ready to discuss Teilhard’s seemingly heretical mixture of Christian spirituality and evolution. As a result, Teilhard’s Jesuit superiors exiled him to China, where he would spend much of the rest of his life.
In 1929 Teilhard participated in the discovery and interpretation of the fossils of Sinanthropus, also known as “Peking man,” a forerunner of modern humans that had lived in Asia about 400,000 years ago. Teilhard published approximately 170 scientific articles and papers based on his paleontological and geological observations. He became a star in the world of science.
During the 1920s, 1930s, and 1940s Teilhard also wrote profound philosophical reflections combining concepts of faith and science and reaffirming the validity of Christian belief in the modern world. Like St. Ignatius, the founder of the Jesuits, and so many other colleagues, Teilhard stood for the quest for knowledge. As the quintessential man of both God and of science, he believed that faith and reason complemented each other.
In Teilhard I found a man who strived to understand humanity in all of its dimensions. This helped me to view my situation of risk in a holistic sense and as part of humanity’s struggle for progress. Faith – and not just science and medicine – became a valuable weapon in my arsenal for survival.
Teilhard’s impact
The Church leadership in Rome, however, prohibited Teilhard from publishing anything that was not strictly scientific, and it kept him away from the philosophical and theological centers of Europe.
Teilhard was truly a man ahead of his time. But he died in relative obscurity in New York City in 1955. Instead of being taken to France, his body was buried at a Jesuit training house in Poughkeepsie, New York.
After his death, however, the books that Teilhard could not publish during his lifetime quickly made their way into print. His thought became enormously influential in the Catholic Church and in scientific and philosophical circles.
Quoting ecologist Thomas Berry, theology professor Ronald Modras subsequently described Teilhard’s The Phenomenon of Man as the closest thing to a “Summa of the modern mode of consciousness.” Likewise, Modras points out, Mortimer Adler, the founder of the Great Books movement, listed the book among the great works of the twentieth century.
In 1962 the Vatican tried to dampen the impact of Teilhard’s ideas by officially declaring that they were offensive to Catholic doctrine.
Nevertheless, Teilhard’s ideas deeply influenced the thinking of the Church fathers from around the globe when they gathered in Rome between 1962 and 1965 for a series of monumental meetings known as the Second Vatican Council, the greatest reform in the 2,000-year history of the Catholic Church. During the Council the Church leaders began reconsidered their suspicions of modern science and reaffirmed the nexus of faith and reason.
Thanks to Teilhard, Catholicism adopted theistic evolution as opposed to the fundamentalist readings of creation found in many Protestant denominations. As Professor Modras stated, “Catholic schools today, even at the primary level, regularly teach the Genesis stories of Adam as figurative rather than historical. Catholics need not choose between science and religion, as if the Bible and biology were in conflict.”
In 1981 Pope John Paul II reversed the Vatican’s previous negative interpretation of Teilhard’s work by recognizing him as “a man seized by Christ in the very depths of his being, and who struggled to honor at once faith and reason.”
John Paul II: Teilhard honored both faith and reason.
In 2006 Pope Benedict XVI spoke in Teilhardian terms when he discussed evolution and described the Resurrection as “the greatest ‘mutation,’ absolutely the most crucial leap into a totally new dimension that there has ever been in the long history of life and its development.”
In July of 2009 Benedict XVI directly referred to the “great vision” of Teilhard and used Teilhardian terms to advocate “a true cosmic liturgy, where the cosmos becomes a living host.”
Teilhard created a new vocabulary in which scientific and religious terminology could be spoken in the same breath.
For me especially the concept of “mutation” took on a whole new meaning as not only a biological process, but a social and spiritual one too. As a person who was gene-positive for Huntington’s disease, I no longer needed to feel like a freak accident of nature or the result of rotten luck. I was part of the process of humanity’s reach for a higher state.
The Phenomenon of Man
Knowing that Teilhard sought to tie all knowledge into a master interpretation of the universe and humanity’s place in it, I decided to delve into The Phenomenon of Man in order to explore further the meaning of gene-positive status.
Teilhard employed the word “phenomenon” because he intended to observe the development of humanity by using the scientific method. He stressed that he was not writing a metaphysical work.
Yet because of the book’s enormous implications for my life, I treated it like scripture, reading only a page or two a week, usually on the weekends, when I could clear my mind of the concerns of work and contemplate life. In all it took me several years to finish.
The cover of the first English translation of The Phenomenon of Man
Teilhard’s positive and intriguing outlook on pain, suffering, and evolution inspired me to search for the broader social and scientific implications of my own plight, and his highly practical spirituality of matter helped me to feel the presence of the divine in everything, including my HDSA activism and my personal fight to delay the onset of symptoms.
Faith and reason
But the Catholic hierarchy of the 1920s was not ready to discuss Teilhard’s seemingly heretical mixture of Christian spirituality and evolution. As a result, Teilhard’s Jesuit superiors exiled him to China, where he would spend much of the rest of his life.
In 1929 Teilhard participated in the discovery and interpretation of the fossils of Sinanthropus, also known as “Peking man,” a forerunner of modern humans that had lived in Asia about 400,000 years ago. Teilhard published approximately 170 scientific articles and papers based on his paleontological and geological observations. He became a star in the world of science.
During the 1920s, 1930s, and 1940s Teilhard also wrote profound philosophical reflections combining concepts of faith and science and reaffirming the validity of Christian belief in the modern world. Like St. Ignatius, the founder of the Jesuits, and so many other colleagues, Teilhard stood for the quest for knowledge. As the quintessential man of both God and of science, he believed that faith and reason complemented each other.
In Teilhard I found a man who strived to understand humanity in all of its dimensions. This helped me to view my situation of risk in a holistic sense and as part of humanity’s struggle for progress. Faith – and not just science and medicine – became a valuable weapon in my arsenal for survival.
Teilhard’s impact
The Church leadership in Rome, however, prohibited Teilhard from publishing anything that was not strictly scientific, and it kept him away from the philosophical and theological centers of Europe.
Teilhard was truly a man ahead of his time. But he died in relative obscurity in New York City in 1955. Instead of being taken to France, his body was buried at a Jesuit training house in Poughkeepsie, New York.
After his death, however, the books that Teilhard could not publish during his lifetime quickly made their way into print. His thought became enormously influential in the Catholic Church and in scientific and philosophical circles.
Quoting ecologist Thomas Berry, theology professor Ronald Modras subsequently described Teilhard’s The Phenomenon of Man as the closest thing to a “Summa of the modern mode of consciousness.” Likewise, Modras points out, Mortimer Adler, the founder of the Great Books movement, listed the book among the great works of the twentieth century.
In 1962 the Vatican tried to dampen the impact of Teilhard’s ideas by officially declaring that they were offensive to Catholic doctrine.
Nevertheless, Teilhard’s ideas deeply influenced the thinking of the Church fathers from around the globe when they gathered in Rome between 1962 and 1965 for a series of monumental meetings known as the Second Vatican Council, the greatest reform in the 2,000-year history of the Catholic Church. During the Council the Church leaders began reconsidered their suspicions of modern science and reaffirmed the nexus of faith and reason.
Thanks to Teilhard, Catholicism adopted theistic evolution as opposed to the fundamentalist readings of creation found in many Protestant denominations. As Professor Modras stated, “Catholic schools today, even at the primary level, regularly teach the Genesis stories of Adam as figurative rather than historical. Catholics need not choose between science and religion, as if the Bible and biology were in conflict.”
In 1981 Pope John Paul II reversed the Vatican’s previous negative interpretation of Teilhard’s work by recognizing him as “a man seized by Christ in the very depths of his being, and who struggled to honor at once faith and reason.”
John Paul II: Teilhard honored both faith and reason.In 2006 Pope Benedict XVI spoke in Teilhardian terms when he discussed evolution and described the Resurrection as “the greatest ‘mutation,’ absolutely the most crucial leap into a totally new dimension that there has ever been in the long history of life and its development.”
In July of 2009 Benedict XVI directly referred to the “great vision” of Teilhard and used Teilhardian terms to advocate “a true cosmic liturgy, where the cosmos becomes a living host.”
Teilhard created a new vocabulary in which scientific and religious terminology could be spoken in the same breath.
For me especially the concept of “mutation” took on a whole new meaning as not only a biological process, but a social and spiritual one too. As a person who was gene-positive for Huntington’s disease, I no longer needed to feel like a freak accident of nature or the result of rotten luck. I was part of the process of humanity’s reach for a higher state.
The Phenomenon of Man
Knowing that Teilhard sought to tie all knowledge into a master interpretation of the universe and humanity’s place in it, I decided to delve into The Phenomenon of Man in order to explore further the meaning of gene-positive status.
Teilhard employed the word “phenomenon” because he intended to observe the development of humanity by using the scientific method. He stressed that he was not writing a metaphysical work.
Yet because of the book’s enormous implications for my life, I treated it like scripture, reading only a page or two a week, usually on the weekends, when I could clear my mind of the concerns of work and contemplate life. In all it took me several years to finish.
The cover of the first English translation of The Phenomenon of ManI wanted to absorb fully Teilhard’s scientific and philosophical points. Teilhard wrote densely and frequently used complex scientific ideas as he packed billions of years of history into 300 pages, moving from the most elemental stages of matter to the development of human consciousness. I often had to read sentences and even entire paragraphs over again in order to grasp his meaning. It seemed that each phrase could itself render an entire book.
But Teilhard also produced poetic gems that elegantly and succinctly summed up scientific reality and gave it meaning for human existence.
He wrote: “The profoundly ‘atomic’ character of the universe is visible in everyday experience, in raindrops and grains of sand, in the hosts of the living, and the multitude of stars; even in the ashes of the dead.”
On the historic conflict between science and faith, Teilhard wrote the following: “But, inasmuch as the tension is prolonged, the conflict visibly seems to need to be resolved in terms of an entirely different form of equilibrium – not in elimination, nor duality, but in synthesis. After close on two centuries of passionate struggles, neither science nor faith has succeeded in discrediting its adversary. On the contrary, it becomes obvious that neither can develop normally without the other. And the reason is simple: the same life animates both.”
With such graceful logic, Teilhard shined light on the biggest questions of humanity and reduced the most difficult puzzles to essentials we can all understand.
A new creation narrative
With his vast account of the universe and the evolution of life Teilhard produced a new, modern creation narrative.
Evolution is the central theme.
“Despite all the waste and ferocity, all the mystery and scandal it involves, there is, as we must be fair and admit, a great deal of biological efficiency in the struggle for life,” Teilhard wrote. “‘Survival of the fittest by natural selection’ is not a meaningless expression, provided it is not taken to imply either a final ideal or a final explanation.”
My mutation – my defective huntingtin gene – was not meaningless. It was part of the great mystery of life, the collective struggle for survival. The symptoms of Huntington’s disease are indeed ferocious, with limbs twitching and flailing, the speech slurred, large portions of the brain effaced. But this could all happen to me for a reason.
Evolution = consciousness
The primary thread in the story of evolution is the rise of consciousness. Without an understanding of consciousness, “the forces of research are scattered, and there is no determination to build the earth.” Consciousness is the “line of progress” for life. “We have merely to look into ourselves to perceive it – the nervous system.” This fact proves that “evolution has a direction.”
“Among all the stages successively crossed by evolution, the birth of thought comes directly after, and is the only thing comparable in order of grandeur to, the condensation of the terrestrial chemism or the advent of life itself,” Teilhard wrote.
The power of consciousness meant that a human could not only “know, but “know oneself; no longer merely to know, but to know that one knows.”
Teilhard: self-reflection is key
Humans’ unique attribute is the ability to think and to engage in self-reflection. Together they have constructed and organized the earth as part of a cosmic process present since the birth of the planet – a process in which all matter and life forms are intimately related and interconnected through evolution and the consumption of a common force: energy.
Consciousness and psychotherapy
In my view, consciousness is the crux of Teilhard’s thought.
I have strived to increase my own consciousness throughout my ordeal with Huntington’s. After learning about my mother’s diagnosis, powerful feelings of denial and a desire for escapism took hold of me. I felt headed for disaster.
I sought the help of a psychoanalyst. For several years I lay on her couch during four 45-minutes sessions per week baring my mind and soul in the attempt to become aware of the impediments to clear thinking not only about Huntington’s disease, but all aspects of my life. With the help of psychiatrists we added several medications to my personal psychological toolkit.
Later I transitioned into a more standard therapy, and now I consult with her twice a month. During difficult moments we hold extra sessions.
I now refer to my therapist as my “mind coach.”
Psychotherapy brought me to a level of consciousness whereby I am able to control my thoughts and efficiently channel my energies into the most important parts of my life: my relationship with my wife and daughter, the HD movement, my writing, and the linking up with the rest of humanity through Teilhardian spirituality.
In short, I strive each day to become a better person.
I now feel in command of my mind. In fact, in a psychological sense, I believe I have never been healthier. As I recently told my therapist, “I am now the man I wanted to become.”
Greater consciousness has enabled me to grasp the significance of the HD movement and my part in it. As a result, I engage in the movement more effectively. Although not a natural-born leader, I feel increasingly confident about the calls to leadership I have received in the last few years.
I am also ever more conscious of the biological processes likely being wrought in my brain by the defective huntingtin gene. I can picture them at work, and consciousness of this fact reminds me of how precious time is. I am also highly conscious of the fact that, at least for the moment, I am healthy.
Ironically, as I enjoy a high level of consciousness, I could soon start losing it to the ravages of HD. But I can take consolation in the fact that, through psychotherapy, I achieved a level of consciousness previously unimaginable.
Teilhard, I think, would have heartily approved of this approach to HD.
The “thinking layer”
According to Teilhard, the earth itself formed a terrestrial layer (“geogenesis”), and upon it grew a biosphere (“biogenesis”) in which humans increased their consciousness (“psychogenesis”). Humans next built what Teilhard described as the “noosphere,” the “thinking layer,” the layer of conscious, collective thought tied together across the earth in an enormous, ever more complex web (“noogenesis”).
In effect, Teilhard foresaw the development of modern telecommunications, the Internet, and the World Wide Web.
A diagram of Teilhard's thinking, including the noosphere
But Teilhard also produced poetic gems that elegantly and succinctly summed up scientific reality and gave it meaning for human existence.
He wrote: “The profoundly ‘atomic’ character of the universe is visible in everyday experience, in raindrops and grains of sand, in the hosts of the living, and the multitude of stars; even in the ashes of the dead.”
On the historic conflict between science and faith, Teilhard wrote the following: “But, inasmuch as the tension is prolonged, the conflict visibly seems to need to be resolved in terms of an entirely different form of equilibrium – not in elimination, nor duality, but in synthesis. After close on two centuries of passionate struggles, neither science nor faith has succeeded in discrediting its adversary. On the contrary, it becomes obvious that neither can develop normally without the other. And the reason is simple: the same life animates both.”
With such graceful logic, Teilhard shined light on the biggest questions of humanity and reduced the most difficult puzzles to essentials we can all understand.
A new creation narrative
With his vast account of the universe and the evolution of life Teilhard produced a new, modern creation narrative.
Evolution is the central theme.
“Despite all the waste and ferocity, all the mystery and scandal it involves, there is, as we must be fair and admit, a great deal of biological efficiency in the struggle for life,” Teilhard wrote. “‘Survival of the fittest by natural selection’ is not a meaningless expression, provided it is not taken to imply either a final ideal or a final explanation.”
My mutation – my defective huntingtin gene – was not meaningless. It was part of the great mystery of life, the collective struggle for survival. The symptoms of Huntington’s disease are indeed ferocious, with limbs twitching and flailing, the speech slurred, large portions of the brain effaced. But this could all happen to me for a reason.
Evolution = consciousness
The primary thread in the story of evolution is the rise of consciousness. Without an understanding of consciousness, “the forces of research are scattered, and there is no determination to build the earth.” Consciousness is the “line of progress” for life. “We have merely to look into ourselves to perceive it – the nervous system.” This fact proves that “evolution has a direction.”
“Among all the stages successively crossed by evolution, the birth of thought comes directly after, and is the only thing comparable in order of grandeur to, the condensation of the terrestrial chemism or the advent of life itself,” Teilhard wrote.
The power of consciousness meant that a human could not only “know, but “know oneself; no longer merely to know, but to know that one knows.”
Teilhard: self-reflection is keyHumans’ unique attribute is the ability to think and to engage in self-reflection. Together they have constructed and organized the earth as part of a cosmic process present since the birth of the planet – a process in which all matter and life forms are intimately related and interconnected through evolution and the consumption of a common force: energy.
Consciousness and psychotherapy
In my view, consciousness is the crux of Teilhard’s thought.
I have strived to increase my own consciousness throughout my ordeal with Huntington’s. After learning about my mother’s diagnosis, powerful feelings of denial and a desire for escapism took hold of me. I felt headed for disaster.
I sought the help of a psychoanalyst. For several years I lay on her couch during four 45-minutes sessions per week baring my mind and soul in the attempt to become aware of the impediments to clear thinking not only about Huntington’s disease, but all aspects of my life. With the help of psychiatrists we added several medications to my personal psychological toolkit.
Later I transitioned into a more standard therapy, and now I consult with her twice a month. During difficult moments we hold extra sessions.
I now refer to my therapist as my “mind coach.”
Psychotherapy brought me to a level of consciousness whereby I am able to control my thoughts and efficiently channel my energies into the most important parts of my life: my relationship with my wife and daughter, the HD movement, my writing, and the linking up with the rest of humanity through Teilhardian spirituality.
In short, I strive each day to become a better person.
I now feel in command of my mind. In fact, in a psychological sense, I believe I have never been healthier. As I recently told my therapist, “I am now the man I wanted to become.”
Greater consciousness has enabled me to grasp the significance of the HD movement and my part in it. As a result, I engage in the movement more effectively. Although not a natural-born leader, I feel increasingly confident about the calls to leadership I have received in the last few years.
I am also ever more conscious of the biological processes likely being wrought in my brain by the defective huntingtin gene. I can picture them at work, and consciousness of this fact reminds me of how precious time is. I am also highly conscious of the fact that, at least for the moment, I am healthy.
Ironically, as I enjoy a high level of consciousness, I could soon start losing it to the ravages of HD. But I can take consolation in the fact that, through psychotherapy, I achieved a level of consciousness previously unimaginable.
Teilhard, I think, would have heartily approved of this approach to HD.
The “thinking layer”
According to Teilhard, the earth itself formed a terrestrial layer (“geogenesis”), and upon it grew a biosphere (“biogenesis”) in which humans increased their consciousness (“psychogenesis”). Humans next built what Teilhard described as the “noosphere,” the “thinking layer,” the layer of conscious, collective thought tied together across the earth in an enormous, ever more complex web (“noogenesis”).
In effect, Teilhard foresaw the development of modern telecommunications, the Internet, and the World Wide Web.
A diagram of Teilhard's thinking, including the noosphereTeilhard explained this process: “Under the free and ingenious effort of successive intelligences, something (even in the absence of any measurable variation in brain or cranium) irreversibly accumulates, according to all the evidence, and is transmitted, at least collectively by means of education, down the course of ages. The point here is that this ‘something’ – construction of matter or construction of beauty, systems of thought or systems of action – ends up always translating itself into an augmentation of consciousness, and consciousness in its turn, as we now know, is nothing less than the substance and heart of life in process of evolution.”
He concluded: “The earth ‘gets a new skin.’ Better still, it finds its soul.”
As they seek ever great consciousness, humans will continue to evolve. This has included – and will continue to include – self-knowledge and knowledge of our biological processes and the nature of the universe. Evolution has become conscious of itself.
“The being who is the object of his own reflection … becomes in a flash able to raise himself into a new sphere,” Teilhard wrote. “In reality, another world is born.”
This process is what makes each of us a person.
In the HD community, we all need to achieve greater consciousness. Many people remain in denial about the disease and thus have strangled their own consciousness. Rather than grow in appreciation for reality, these individuals stunt their minds.
Those of us who have accepted the reality of HD must continually strive to improve both our individual and collective consciousness to increase collaboration among us and awareness about HD in the larger community.
The harmonization of the world
Indeed, as Teilhard affirmed, evolution seems no longer to be a physical process but a psychosocial one. History has demonstrated great conflict among the world’s cultures but also the tendency towards their “gradual harmonization” – a kind of cosmopolitan culture.
This process also includes the increase of psychosocial and environmental pressures that humankind must manage correctly if it is to survive.
The noosphere expands in collective fashion. “There can be no doubt of it: the great human machine is designed to work and must work – by producing a super-abundance of mind,” Teilhard wrote. “If it does not work, or rather it produces only matter, this means that it has gone into reverse.”
Huntington’s disease researchers have collectively built a critical mass of knowledge about the disease that is now on the verge of becoming a scientific “super-abundance.” Those of us in the rest of the HD movement badly need to follow their lead and create our own super-abundance of strategies for advocacy, caregiving, fundraising, and other ways of collective action.
Union with God
Ultimately, humanity will evolve until it reaches the Omega Point, the great, mysterious center of all consciousness, which is God.
As a Catholic who remained loyal to the Church until his death, Teilhard believed in the idea of a personal God.
The Omega is a “distinct center radiating at the core of a system of centers,” in which each center represents a conscious individual.
“To be fully ourselves,” Teilhard continued, “it is in the opposite direction, in the direction of convergence with all the rest, that we must advance – towards the ‘other.’ The goal of ourselves, the acme of our originality, is not our individuality but our person; and according to the evolutionary structure of the world, we can only find our person by uniting together. There is no mind without synthesis. The same law holds good from top to bottom. The true ego grows in inverse proportion to ‘egoism.’ Like the Omega which attracts it, the element only becomes personal when it universalizes itself.”
And here enters love in Teilhard’s description of the universe. Love is union, love is energy, it resides in everything. “If there were no internal propensity to unite, even at a prodigiously rudimentary level – indeed in the molecule itself – it would be physically impossible for love to appear higher up, with us, in ‘hominized’ [human] form…. Driven by the forces of love, the fragments of the world seek each other so that the world may come to being. This is no metaphor; and it is much more than poetry. Whether as a force or a curvature, the universal gravity of bodies, so striking to us, is merely the reverse or shadow of that which really moves nature.”
Love and its companions – respect and empathy – form the most important ingredients of the HD movement. We should never want pity for our HD people and their families, but respect, understanding, and honor for their struggles.
We need to raise everybody’s level of consciousness about HD and its role in evolution so that the disease does not frighten people but instead inspires them to join our fight to find a cure and thus possibly enable the end of other neurological diseases. (Click here to read my previous thoughts on love and HD.)
The Christian phenomenon
Again employing historical and evolutionary analysis, Teilhard proceeded to assess “the Christian phenomenon.”
“The Christian fact stands before us. It has its place among the other realities of the world,” he began. “Led astray by a false evangelism, people often think they are honoring Christianity when they reduce it to a sort of gentle philanthropism. Those who fail to see it in the most realistic and at the same time the most cosmic of beliefs and hopes, completely fail to understand its ‘mysteries.’ Is the Kingdom of God a big family? Yes, in a sense it is. But in another sense it is a prodigious biological operation – that of the Redeeming Incarnation.”
Christ had a profoundly evolutionary purpose on earth. He became man to “superanimate the general ascent of consciousness into which he inserted himself.”
“Though frightened for a moment by evolution, the Christian now perceives that what it offers him is nothing but a magnificent means of feeling more at one with God and of giving himself more to him,” Teilhard wrote. “Evolution has come to infuse new blood, so to speak, into the perspectives and aspirations of Christianity. In return, is not the Christian faith destined, is it not preparing, to save and even to take the place of evolution?”
Reading these words, I came to understand that my HD activism had made me a soldier in the front lines of evolution along with others who, by seeking a cure, will vault us into a new era of human existence.
The ultimate earth
As humanity evolves towards the Omega Point, it will construct what Teilhard termed “the ultimate earth.” He predicted that both science and religion would play major parts. He advocated an increase in spending on pure scientific research to produce “a world in which giant telescopes and atom smashers absorb more money and excite more spontaneous admiration than all the bombs and cannons put together…. a world in which, as happens already, one gives one’s life to be and to know, rather than possess.”
Science should concentrate on humanity, Teilhard affirmed, and would thus “find itself increasingly face to face with religion.”
Teilhard: science finds itself face to face with religion.
Teilhard elaborated on his conclusion that science and religion needed to form a synthesis: “Neither in its impetus nor its achievements can science go to its limits without becoming tinged with mysticism and charged with faith.”
I would submit to the HD community – from the patients, caregivers, and at-risk people in the trenches to the scientists in the labs – that we all come face to face with the profoundly religious character of our movement and its implications for humanity. Together we can do our part to build the ultimate earth.
Part III: Teilhard and Huntington’s disease
Evolutionary freedom
Teilhard did not speak of Huntington’s disease in The Phenomenon of Man, but the book’s extremely broad scientific scope helps put in perspective the history of this terrible malady and especially the efforts to alleviate it.
In an appendix on “the place and part of evil in a world in evolution,” Teilhard recognized the necessary role of death in human life. “Sickness and corruption invariably result from some unhappy chance,” he wrote. Death, in general, is “the essential lever in the mechanism and upsurge of life.” The very last sentence of the book states that “the human epic resembles nothing so much as a way of the Cross.”
Teilhard described evolution as involving “reckless self-reproduction” in order to take “precautions against mishap.” Along these lines, and in conjunction with Dr. Brusilow’s aforementioned research, I take Huntington’s disease to be an evolutionary experiment.
The transition from pre-human primates to humans involved, in Teilhard’s words, a recasting of the “animal psychism” and a “sudden deluge of cerebralization.” This movement “did not stop, for there was nothing in the structure of the organism to prevent it advancing.” A new type of organism – the human being – for a time “devotes all its strength, so to speak, groping within itself,” Teilhard wrote. “Try-out follows try-out, without being finally adopted.”
Echoing the conventions of his time, Teilhard observed what he believed to be “physical degeneration” in our species, “so full of misshapen subjects,” whereas animal societies could have “a hundred thousand individuals” without a single genetic defect. Why did the human species lack such perfection? “In itself that geometrical perfection is not in the line of our evolution whose bent is towards suppleness and freedom.” In other words, our ability to evolve, especially psychically, opened us up to greater possibilities, and this required greater genetic experimentation. The suppleness and freedom further suggest that Huntington’s disease formed part of an attempt by the species to move to a new level.
Rather than see ourselves as cursed, we in the HD community should see ourselves as mutants in this process. HD should not carry a stigma, as should no disease!
Democratic eugenics
And, like so many of his generation, Teilhard believed that the solution to physical degeneration was eugenics, the idea that society should improve its genetic stock by preventing the unfit from having children.
On the face of it this is an abhorrent suggestion, especially for the Huntington’s community, for which medical officials believed sterilization was a way to prevent the disease from propagating (click here to read more).
But a verbatim reading of Teilhard’s comment reveals a more complex appreciation for the problem of perceived imperfections in the species.
“So far we have certainly allowed our race to develop at random, and we have given too little thought to the question of what medical and moral factors must replace the crude forces of natural selection should we suppress them,” Teilhard wrote. “In the course of the coming centuries it is indispensable that a nobly human form of eugenics, on a standard worthy of our personalities, should be discovered and developed.”
We have already implemented Teilhard’s vision. I got tested for Huntington’s in June 1999 precisely because my wife and I wanted to eliminate the possibility that our potential children would inherit the disease. After I tested positive, we found it necessary to test our daughter in the womb. If she had tested positive, we would have seriously considered an abortion, which we morally oppose but find necessary in some cases.
More recently couples have gained access to preimplantation genetic diagnosis (PGD), whereby lab technicians screen embryos for HD before implanting them in the womb.
There are no laws against PGD, and it is, in effect, a democratic, grassroots form of eugenics. Although he anticipated and advocated eugenics via social control, Teilhard would have described the development of our own system as yet another stage in our evolution.
The conquest of disease
While Teilhard recognized the possibility of a future in which “evil may go on growing alongside good,” he believed that humanity should strive to create an earth where evil “will be reduced to a minimum.”
In this scenario, Teilhard wrote, “disease and hunger will be conquered by science and we will no longer need to fear them in any acute form.”
The Huntington’s community fervently hopes for this kind of world, where effective treatments and even a cure for the disease will forever end its scourge upon families and serve as a template for ending other neurological conditions such as Parkinson’s, Alzheimer’s, Lou Gehrig’s disease, and stroke, to name just a few.
An awakening to research
In this regard Teilhard would have felt very much at home with today’s Huntington’s researchers, who labor on the many new frontiers of post-genomic science in the search for a solution to the disease.
Research – the preeminent activity of a self-conscious species and its rapidly expanding noosphere – took center stage in Teilhard’s vision of humanity’s future. Research was part and parcel of evolution, and it was the key to the improvement of the species.
To understand Teilhard’s vision of research, we must reflect on his assertion that man “is nothing else than evolution become conscious of itself.”
In the multi-billion-year sweep of the universe’s history this revelation has taken place as if just yesterday with the emergence of modern evolutionary theory. Teilhard described it as an “awakening” – to both our potential and our challenges.
Research propels evolutionary consciousness ahead.
Evolution’s soul: the spirit of research
As an evolutionary process, research is inherent in all life.
Evolution has occurred through “a long sequence of discoveries,” Teilhard wrote. “In the same beam of light the instinctive gropings of the first cell link up with the learned gropings of our laboratories. So let us bow our head with respect for the anxieties and joys of ‘trying all and discovering all.’ The passing wave that we can feel was not formed in ourselves. It comes to use from far away; it set out at the same time as the light from the first stars. It reaches us after creating everything on the way. The spirit of research and conquest is the permanent soul of evolution.”
Teilhard: research is inherent in all life.
In this spirit the task of humankind is to perfect nature.
We in the HD movement need to recognize the importance of research in our lives – the research at the personal level that will enable us to comprehend our status in the evolutionary process and our actual participation in the research studies so important for finding treatments and a cure.
Knowledge for humanitarian power
“Knowledge is the twin sister of mankind,” Teilhard asserted. In the present age “we are witnessing a formidable upsurge of unused powers. Modern man no longer knows what to do with the time and potentialities he has unleashed. We groan under the burden of this wealth.”
Humankind must usefully employ this knowledge and power towards the goal of humanitarian perfection.
“Knowledge for its own sake,” Teilhard wrote. “But also, and perhaps still more, knowledge for power.
“Since its birth, knowledge has made its greatest advances when stimulated by some particular problem of life needing a solution; and its most sublime theories would have drifted, rootless, on the flood of human thought if they had not been promptly incorporated into some way of mastering the world…. Increased power for increased action. But, finally, and above all, increased action for increased being.”
From the moment I learned of my mother’s diagnosis, I have sought to increase my own knowledge of HD in order to possibly delay the onset of the disease and to become an effective activist. Teilhard was right. The more I learn, the more I feel compelled to act to end the disease, and the more I feel the need to increasing my own sense of being through greater consciousness, greater links to my family and the HD community, and greater enjoyment of my remaining time as a healthy individual.
The cure and the noosphere
Teilhard would have applauded Huntington’s researchers in their pursuit of a cure for a disease so complex and so destructive in its cellular destruction in the brain, the most important organ in human evolution and the expansion of the noosphere.
As Teilhard observed, “intellectual discovery and synthesis are no longer merely speculation but creation…. And from this point onwards they are (at least partially right) who situate the crown of evolution in a supreme act of collective vision obtained by a pan-human effort of investigation and construction.”
These researchers stand at the outer limits of the noosphere. Using all of the latest, most relevant tools of the biotechnological era, they seek, in a worldwide effort, to create a specific solution to a specific problem: a drug or drugs that will halt Huntington’s.
I have carried out a two-fold effort to increase consciousness about this effort. First, I have sought to learn all I can about this research in order to elevate my own consciousness.
Secondly, I have placed a layman’s version of this research into the noosphere. I have visited, photographed, interviewed, and written articles about the researchers in this blog and for the website of HDSA-San Diego. I have especially followed the project at Isis Pharmaceuticals, Inc., to create a drug that would stop HD at its genetic roots. The project receives funding from CHDI Management, Inc., informally known as the “cure Huntington’s disease initiative” and underwritten by private, anonymous donors. In July 2009 I visited CHDI’s research headquarters in Los Angeles, and in February I attended the CHDI international conference on HD research held in Palm Springs, CA.
The cure will push the limits of the noosphere yet further. In Teilhard’s words, “We have as yet no idea of the possible magnitude of ‘noospheric’ effects.”
Beyond the cure of HD lies the possibility of preserving human brains to extend healthy life for decades.
And the cure could help generate a new, creative, life-giving power of humanity. As Teilhard put it, “We may well one day be capable of producing what the earth, left to itself, seems no longer able to produce: a new wave of organisms, an artificially provoked neo-life.”
The sacredness of research
Teilhard ultimately viewed research for human betterment as a sacred task. He expressed the highest admiration for modern-day researchers who dreamt of “mastering, beyond all atomic or molecular affinities, the ultimate energy of which all other energies are merely servants; and thus, by grasping the very mainspring of evolution, seizing the tiller of the world.”
He continued: “I salute those who have the courage to admit that their hopes extend that far; they are at the pinnacle of mankind; and I would say to them that there is less difference than people think between research and adoration.”
I, too, salute the many physicians, Ph.D.s, lab technicians, and others dedicated to finding treatments and a cure for Huntington’s. In my encounters with these individuals over the past fifteen years I have learned that many of these individuals possess not only the intellectual power necessary for seeking the cure, but a zest for life and unlocking its biological mysteries.
Part IV: Conclusion
I hope that this blog entry on the World Wide Web will contribute to an expansion of the noosphere by offering a historical and philosophical understanding of my status as gene-positive for Huntington’s disease.
“The consciousness of each of us is evolution looking at itself and reflecting,” Teilhard concluded.
My own consciousness had led me to think about Huntington’s disease and its potential impact on my health and my family each and every day.
Looking at myself and reflecting on my gene-positive condition, I have chosen as an HD activist to fight consciously to help stop this disease.
Teilhard wrote that “the whole psychology of modern disquiet is linked with the sudden confrontation with space-time.”
The advances of biology and the resultant availability of genetic testing have created in me a great disquiet about my health, because they have given me so much information about my genetic condition but as of yet no tools for combating HD.
Teilhard described modern disquiet as producing in humanity “a feeling of futility, of being crushed by the enormities of the cosmos.” This is the “malady of multitude and immensity.” I was astounded by this immensity when I recently took my daughter to watch the documentary Hubble, about the Hubble space telescope. The film shows new images of galaxies and other formations from the outer edges of the known universe, distances unfathomable in the human experience.
This, too, is how I feel about living at risk for Huntington’s disease. The immensity of the problem and the multitude of factors in the disease are daunting.
But Teilhard is optimistic about the future of humanity, and his work, though scientifically rigorous and highly realistic, offers hope by pointing out to us another immensity – that of human potential as measured in the ever-increasing expansion of our individual and collective brain power.
“Sustainable development” has become the buzzword of a world threatened by ecological breakdown. I want to propose another phrase describing a Teilhardian vision for the world and the solution to its problems, whether environmental or, in the case of HD and other neurological diseases, medical: sustainable research. We must nurture new research – and young researchers – to keep alive the flame that feeds the noosphere.
By contemplating the writings of Teilhard de Chardin and the work of scientists seeking a cure for HD, I believe that I have created meaning and hope for a predicament that results in a long, torturous path to death. Teilhard has helped me to understand that I – and all of us in the HD community – are part of a grand process ultimately concerned with bringing greater health to humanity.
We in the HD community are evolving, reaching out to God through every sinew of our muscles and every cell of our body, with the huntingtin protein expressed in each and every one.
Together we await the Resurrection, the “great mutation,” the cure that HD researchers will someday soon create.
He concluded: “The earth ‘gets a new skin.’ Better still, it finds its soul.”
As they seek ever great consciousness, humans will continue to evolve. This has included – and will continue to include – self-knowledge and knowledge of our biological processes and the nature of the universe. Evolution has become conscious of itself.
“The being who is the object of his own reflection … becomes in a flash able to raise himself into a new sphere,” Teilhard wrote. “In reality, another world is born.”
This process is what makes each of us a person.
In the HD community, we all need to achieve greater consciousness. Many people remain in denial about the disease and thus have strangled their own consciousness. Rather than grow in appreciation for reality, these individuals stunt their minds.
Those of us who have accepted the reality of HD must continually strive to improve both our individual and collective consciousness to increase collaboration among us and awareness about HD in the larger community.
The harmonization of the world
Indeed, as Teilhard affirmed, evolution seems no longer to be a physical process but a psychosocial one. History has demonstrated great conflict among the world’s cultures but also the tendency towards their “gradual harmonization” – a kind of cosmopolitan culture.
This process also includes the increase of psychosocial and environmental pressures that humankind must manage correctly if it is to survive.
The noosphere expands in collective fashion. “There can be no doubt of it: the great human machine is designed to work and must work – by producing a super-abundance of mind,” Teilhard wrote. “If it does not work, or rather it produces only matter, this means that it has gone into reverse.”
Huntington’s disease researchers have collectively built a critical mass of knowledge about the disease that is now on the verge of becoming a scientific “super-abundance.” Those of us in the rest of the HD movement badly need to follow their lead and create our own super-abundance of strategies for advocacy, caregiving, fundraising, and other ways of collective action.
Union with God
Ultimately, humanity will evolve until it reaches the Omega Point, the great, mysterious center of all consciousness, which is God.
As a Catholic who remained loyal to the Church until his death, Teilhard believed in the idea of a personal God.
The Omega is a “distinct center radiating at the core of a system of centers,” in which each center represents a conscious individual.
“To be fully ourselves,” Teilhard continued, “it is in the opposite direction, in the direction of convergence with all the rest, that we must advance – towards the ‘other.’ The goal of ourselves, the acme of our originality, is not our individuality but our person; and according to the evolutionary structure of the world, we can only find our person by uniting together. There is no mind without synthesis. The same law holds good from top to bottom. The true ego grows in inverse proportion to ‘egoism.’ Like the Omega which attracts it, the element only becomes personal when it universalizes itself.”
And here enters love in Teilhard’s description of the universe. Love is union, love is energy, it resides in everything. “If there were no internal propensity to unite, even at a prodigiously rudimentary level – indeed in the molecule itself – it would be physically impossible for love to appear higher up, with us, in ‘hominized’ [human] form…. Driven by the forces of love, the fragments of the world seek each other so that the world may come to being. This is no metaphor; and it is much more than poetry. Whether as a force or a curvature, the universal gravity of bodies, so striking to us, is merely the reverse or shadow of that which really moves nature.”
Love and its companions – respect and empathy – form the most important ingredients of the HD movement. We should never want pity for our HD people and their families, but respect, understanding, and honor for their struggles.
We need to raise everybody’s level of consciousness about HD and its role in evolution so that the disease does not frighten people but instead inspires them to join our fight to find a cure and thus possibly enable the end of other neurological diseases. (Click here to read my previous thoughts on love and HD.)
The Christian phenomenon
Again employing historical and evolutionary analysis, Teilhard proceeded to assess “the Christian phenomenon.”
“The Christian fact stands before us. It has its place among the other realities of the world,” he began. “Led astray by a false evangelism, people often think they are honoring Christianity when they reduce it to a sort of gentle philanthropism. Those who fail to see it in the most realistic and at the same time the most cosmic of beliefs and hopes, completely fail to understand its ‘mysteries.’ Is the Kingdom of God a big family? Yes, in a sense it is. But in another sense it is a prodigious biological operation – that of the Redeeming Incarnation.”
Christ had a profoundly evolutionary purpose on earth. He became man to “superanimate the general ascent of consciousness into which he inserted himself.”
“Though frightened for a moment by evolution, the Christian now perceives that what it offers him is nothing but a magnificent means of feeling more at one with God and of giving himself more to him,” Teilhard wrote. “Evolution has come to infuse new blood, so to speak, into the perspectives and aspirations of Christianity. In return, is not the Christian faith destined, is it not preparing, to save and even to take the place of evolution?”
Reading these words, I came to understand that my HD activism had made me a soldier in the front lines of evolution along with others who, by seeking a cure, will vault us into a new era of human existence.
The ultimate earth
As humanity evolves towards the Omega Point, it will construct what Teilhard termed “the ultimate earth.” He predicted that both science and religion would play major parts. He advocated an increase in spending on pure scientific research to produce “a world in which giant telescopes and atom smashers absorb more money and excite more spontaneous admiration than all the bombs and cannons put together…. a world in which, as happens already, one gives one’s life to be and to know, rather than possess.”
Science should concentrate on humanity, Teilhard affirmed, and would thus “find itself increasingly face to face with religion.”
Teilhard: science finds itself face to face with religion.Teilhard elaborated on his conclusion that science and religion needed to form a synthesis: “Neither in its impetus nor its achievements can science go to its limits without becoming tinged with mysticism and charged with faith.”
I would submit to the HD community – from the patients, caregivers, and at-risk people in the trenches to the scientists in the labs – that we all come face to face with the profoundly religious character of our movement and its implications for humanity. Together we can do our part to build the ultimate earth.
Part III: Teilhard and Huntington’s disease
Evolutionary freedom
Teilhard did not speak of Huntington’s disease in The Phenomenon of Man, but the book’s extremely broad scientific scope helps put in perspective the history of this terrible malady and especially the efforts to alleviate it.
In an appendix on “the place and part of evil in a world in evolution,” Teilhard recognized the necessary role of death in human life. “Sickness and corruption invariably result from some unhappy chance,” he wrote. Death, in general, is “the essential lever in the mechanism and upsurge of life.” The very last sentence of the book states that “the human epic resembles nothing so much as a way of the Cross.”
Teilhard described evolution as involving “reckless self-reproduction” in order to take “precautions against mishap.” Along these lines, and in conjunction with Dr. Brusilow’s aforementioned research, I take Huntington’s disease to be an evolutionary experiment.
The transition from pre-human primates to humans involved, in Teilhard’s words, a recasting of the “animal psychism” and a “sudden deluge of cerebralization.” This movement “did not stop, for there was nothing in the structure of the organism to prevent it advancing.” A new type of organism – the human being – for a time “devotes all its strength, so to speak, groping within itself,” Teilhard wrote. “Try-out follows try-out, without being finally adopted.”
Echoing the conventions of his time, Teilhard observed what he believed to be “physical degeneration” in our species, “so full of misshapen subjects,” whereas animal societies could have “a hundred thousand individuals” without a single genetic defect. Why did the human species lack such perfection? “In itself that geometrical perfection is not in the line of our evolution whose bent is towards suppleness and freedom.” In other words, our ability to evolve, especially psychically, opened us up to greater possibilities, and this required greater genetic experimentation. The suppleness and freedom further suggest that Huntington’s disease formed part of an attempt by the species to move to a new level.
Rather than see ourselves as cursed, we in the HD community should see ourselves as mutants in this process. HD should not carry a stigma, as should no disease!
Democratic eugenics
And, like so many of his generation, Teilhard believed that the solution to physical degeneration was eugenics, the idea that society should improve its genetic stock by preventing the unfit from having children.
On the face of it this is an abhorrent suggestion, especially for the Huntington’s community, for which medical officials believed sterilization was a way to prevent the disease from propagating (click here to read more).
But a verbatim reading of Teilhard’s comment reveals a more complex appreciation for the problem of perceived imperfections in the species.
“So far we have certainly allowed our race to develop at random, and we have given too little thought to the question of what medical and moral factors must replace the crude forces of natural selection should we suppress them,” Teilhard wrote. “In the course of the coming centuries it is indispensable that a nobly human form of eugenics, on a standard worthy of our personalities, should be discovered and developed.”
We have already implemented Teilhard’s vision. I got tested for Huntington’s in June 1999 precisely because my wife and I wanted to eliminate the possibility that our potential children would inherit the disease. After I tested positive, we found it necessary to test our daughter in the womb. If she had tested positive, we would have seriously considered an abortion, which we morally oppose but find necessary in some cases.
More recently couples have gained access to preimplantation genetic diagnosis (PGD), whereby lab technicians screen embryos for HD before implanting them in the womb.
There are no laws against PGD, and it is, in effect, a democratic, grassroots form of eugenics. Although he anticipated and advocated eugenics via social control, Teilhard would have described the development of our own system as yet another stage in our evolution.
The conquest of disease
While Teilhard recognized the possibility of a future in which “evil may go on growing alongside good,” he believed that humanity should strive to create an earth where evil “will be reduced to a minimum.”
In this scenario, Teilhard wrote, “disease and hunger will be conquered by science and we will no longer need to fear them in any acute form.”
The Huntington’s community fervently hopes for this kind of world, where effective treatments and even a cure for the disease will forever end its scourge upon families and serve as a template for ending other neurological conditions such as Parkinson’s, Alzheimer’s, Lou Gehrig’s disease, and stroke, to name just a few.
An awakening to research
In this regard Teilhard would have felt very much at home with today’s Huntington’s researchers, who labor on the many new frontiers of post-genomic science in the search for a solution to the disease.
Research – the preeminent activity of a self-conscious species and its rapidly expanding noosphere – took center stage in Teilhard’s vision of humanity’s future. Research was part and parcel of evolution, and it was the key to the improvement of the species.
To understand Teilhard’s vision of research, we must reflect on his assertion that man “is nothing else than evolution become conscious of itself.”
In the multi-billion-year sweep of the universe’s history this revelation has taken place as if just yesterday with the emergence of modern evolutionary theory. Teilhard described it as an “awakening” – to both our potential and our challenges.
Research propels evolutionary consciousness ahead.
Evolution’s soul: the spirit of research
As an evolutionary process, research is inherent in all life.
Evolution has occurred through “a long sequence of discoveries,” Teilhard wrote. “In the same beam of light the instinctive gropings of the first cell link up with the learned gropings of our laboratories. So let us bow our head with respect for the anxieties and joys of ‘trying all and discovering all.’ The passing wave that we can feel was not formed in ourselves. It comes to use from far away; it set out at the same time as the light from the first stars. It reaches us after creating everything on the way. The spirit of research and conquest is the permanent soul of evolution.”
Teilhard: research is inherent in all life.In this spirit the task of humankind is to perfect nature.
We in the HD movement need to recognize the importance of research in our lives – the research at the personal level that will enable us to comprehend our status in the evolutionary process and our actual participation in the research studies so important for finding treatments and a cure.
Knowledge for humanitarian power
“Knowledge is the twin sister of mankind,” Teilhard asserted. In the present age “we are witnessing a formidable upsurge of unused powers. Modern man no longer knows what to do with the time and potentialities he has unleashed. We groan under the burden of this wealth.”
Humankind must usefully employ this knowledge and power towards the goal of humanitarian perfection.
“Knowledge for its own sake,” Teilhard wrote. “But also, and perhaps still more, knowledge for power.
“Since its birth, knowledge has made its greatest advances when stimulated by some particular problem of life needing a solution; and its most sublime theories would have drifted, rootless, on the flood of human thought if they had not been promptly incorporated into some way of mastering the world…. Increased power for increased action. But, finally, and above all, increased action for increased being.”
From the moment I learned of my mother’s diagnosis, I have sought to increase my own knowledge of HD in order to possibly delay the onset of the disease and to become an effective activist. Teilhard was right. The more I learn, the more I feel compelled to act to end the disease, and the more I feel the need to increasing my own sense of being through greater consciousness, greater links to my family and the HD community, and greater enjoyment of my remaining time as a healthy individual.
The cure and the noosphere
Teilhard would have applauded Huntington’s researchers in their pursuit of a cure for a disease so complex and so destructive in its cellular destruction in the brain, the most important organ in human evolution and the expansion of the noosphere.
As Teilhard observed, “intellectual discovery and synthesis are no longer merely speculation but creation…. And from this point onwards they are (at least partially right) who situate the crown of evolution in a supreme act of collective vision obtained by a pan-human effort of investigation and construction.”
These researchers stand at the outer limits of the noosphere. Using all of the latest, most relevant tools of the biotechnological era, they seek, in a worldwide effort, to create a specific solution to a specific problem: a drug or drugs that will halt Huntington’s.
I have carried out a two-fold effort to increase consciousness about this effort. First, I have sought to learn all I can about this research in order to elevate my own consciousness.
Secondly, I have placed a layman’s version of this research into the noosphere. I have visited, photographed, interviewed, and written articles about the researchers in this blog and for the website of HDSA-San Diego. I have especially followed the project at Isis Pharmaceuticals, Inc., to create a drug that would stop HD at its genetic roots. The project receives funding from CHDI Management, Inc., informally known as the “cure Huntington’s disease initiative” and underwritten by private, anonymous donors. In July 2009 I visited CHDI’s research headquarters in Los Angeles, and in February I attended the CHDI international conference on HD research held in Palm Springs, CA.
The cure will push the limits of the noosphere yet further. In Teilhard’s words, “We have as yet no idea of the possible magnitude of ‘noospheric’ effects.”
Beyond the cure of HD lies the possibility of preserving human brains to extend healthy life for decades.
And the cure could help generate a new, creative, life-giving power of humanity. As Teilhard put it, “We may well one day be capable of producing what the earth, left to itself, seems no longer able to produce: a new wave of organisms, an artificially provoked neo-life.”
The sacredness of research
Teilhard ultimately viewed research for human betterment as a sacred task. He expressed the highest admiration for modern-day researchers who dreamt of “mastering, beyond all atomic or molecular affinities, the ultimate energy of which all other energies are merely servants; and thus, by grasping the very mainspring of evolution, seizing the tiller of the world.”
He continued: “I salute those who have the courage to admit that their hopes extend that far; they are at the pinnacle of mankind; and I would say to them that there is less difference than people think between research and adoration.”
I, too, salute the many physicians, Ph.D.s, lab technicians, and others dedicated to finding treatments and a cure for Huntington’s. In my encounters with these individuals over the past fifteen years I have learned that many of these individuals possess not only the intellectual power necessary for seeking the cure, but a zest for life and unlocking its biological mysteries.
Part IV: Conclusion
I hope that this blog entry on the World Wide Web will contribute to an expansion of the noosphere by offering a historical and philosophical understanding of my status as gene-positive for Huntington’s disease.
“The consciousness of each of us is evolution looking at itself and reflecting,” Teilhard concluded.
My own consciousness had led me to think about Huntington’s disease and its potential impact on my health and my family each and every day.
Looking at myself and reflecting on my gene-positive condition, I have chosen as an HD activist to fight consciously to help stop this disease.
Teilhard wrote that “the whole psychology of modern disquiet is linked with the sudden confrontation with space-time.”
The advances of biology and the resultant availability of genetic testing have created in me a great disquiet about my health, because they have given me so much information about my genetic condition but as of yet no tools for combating HD.
Teilhard described modern disquiet as producing in humanity “a feeling of futility, of being crushed by the enormities of the cosmos.” This is the “malady of multitude and immensity.” I was astounded by this immensity when I recently took my daughter to watch the documentary Hubble, about the Hubble space telescope. The film shows new images of galaxies and other formations from the outer edges of the known universe, distances unfathomable in the human experience.
This, too, is how I feel about living at risk for Huntington’s disease. The immensity of the problem and the multitude of factors in the disease are daunting.
But Teilhard is optimistic about the future of humanity, and his work, though scientifically rigorous and highly realistic, offers hope by pointing out to us another immensity – that of human potential as measured in the ever-increasing expansion of our individual and collective brain power.
“Sustainable development” has become the buzzword of a world threatened by ecological breakdown. I want to propose another phrase describing a Teilhardian vision for the world and the solution to its problems, whether environmental or, in the case of HD and other neurological diseases, medical: sustainable research. We must nurture new research – and young researchers – to keep alive the flame that feeds the noosphere.
By contemplating the writings of Teilhard de Chardin and the work of scientists seeking a cure for HD, I believe that I have created meaning and hope for a predicament that results in a long, torturous path to death. Teilhard has helped me to understand that I – and all of us in the HD community – are part of a grand process ultimately concerned with bringing greater health to humanity.
We in the HD community are evolving, reaching out to God through every sinew of our muscles and every cell of our body, with the huntingtin protein expressed in each and every one.
Together we await the Resurrection, the “great mutation,” the cure that HD researchers will someday soon create.
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