Hacking humans, upgrading Homo sapiens: the role of the Huntington’s disease community and the consequences for life

An influential book by best-selling historian Yuval Noah Harari, Homo Deus: A Brief History of Tomorrow, looks broadly at potential medical advances, thus providing hope for the Huntington’s disease community’s quest for a cure, but it also warns of the vast consequences for human life caused by the advance of biotechnology and the accumulation and control of data.

A professor in the History Department at the Hebrew University of Jerusalem and holder of a Ph.D. from the University of Oxford, England, Dr. Harari published the international blockbuster Sapiens: A Brief History of Humankind. Sapiens was first published in Hebrew in 2011 and was translated into nearly 50 languages, selling over 10 million copies by 2018.

In Sapiens, Dr. Harari uses macro-history (also known as “big history”) and biological evolution to explain the development of human society over the past several hundred thousand years. He focuses in particular on the “cognitive revolution” that began 70,000 years ago. During this period, the modern human species, Homo sapiens, came to dominate Earth.

“Homo sapiens” is Latin for “wise man.” “Deus” means “god.” In Homo Deus, first published in English in 2016, Dr. Harari projects current trends deep into the 21st century and speculates that humanity could double average life expectancy to 150 years. He also considers the profound changes longer lives would bring such as people in positions of authority stretching out their careers and thus cutting off opportunities for younger individuals.

Ultimately, in this century humanity may seek immortality by developing new biomedical tools and implants, fusing our bodies with high-tech machines, and perhaps also creating non-organic beings.

“You may debate whether it is good or bad,” Dr. Harari writes, “but it seems that […] the twenty-first century will […] involve re-engineering Homo sapiens so that it can enjoy everlasting pleasure. In seeking bliss and immortality humans are in fact trying to upgrade themselves into gods. Not because these are divine qualities, but because in order to overcome old age and misery humans will first have to acquire godlike control of their own biological substratum [bedrock].”

A new scientific dogma: we are algorithms

The idea of ending disease and extending life, even if by only a few years, stirred the depths of my being. The fear of death propels our psyches and civilization. In the Huntington’s community, where the disease’s devastating and fatal symptoms cut off down lives early, the fear of death is ever-present and more acute. I recalled my mother’s death from HD in 2006 at 68 and my condition as an HD gene carrier. At 59, each day without symptoms is a blessing.

Homo Deus also reminded me of my 2010 article “God, Huntington’s disease and the meaning of life,” in which I examined the Catholic Church’s little-known and little-understand acceptance of evolutionary theory and the notion that the Resurrection of Christ could be seen as a genetic mutation.

However, in Homo Deus Dr. Harari also warns that current trends in biotechnology and the gathering and control of data could also lead to the creation of a super-human elite taking control of the rest of humanity, threatening privacy, democracy, and human and civil rights.

“If indeed we succeed in hacking and engineering life, this will be not just the greatest revolution in the history of humanity,” Dr. Harari told the audience at the 2018 World Economic Forum Annual Meeting in Davos, Switzerland. “This will be the greatest revolution in biology since the very beginning of life 4 billion years ago.[…]

“Science is replacing evolution by natural selection with evolution by intelligent design. Not the intelligent design of some god above the clouds, but our intelligent design, and the intelligent design of our clouds, the IBM cloud, the Microsoft cloud. These are the new driving forces of evolution.”

Yuval Noah Harari in 2017 (photo from Wikimedia Commons)

In Homo Deus, Dr. Harari explains that “science is converging on an all-encompassing dogma, which says that organisms are algorithms” – a method or list of instructions for making calculations – “and life is data processing.”

“Humans are algorithms that produce […] copies of themselves,” he adds. The influence of computer algorithms designed by organizations such as Google has grown vastly, taking in fantastic sums of personal data for users of the Internet and personal devices. “Non-conscious but highly intelligent algorithms may soon know us better than we know ourselves.”

In their digital lives, over 2 billion Facebook members have encountered that organization’s problematic algorithm, which a company study found to be a better reader of people’s personalities than even their friends, parents, and spouses, Dr. Harari points out.

Crucial data from HD families

Homo Deus doesn’t mention HD. However, it recognizes the importance of Alzheimer’s disease and the need to prevent it and disease in general. Dr. Harari explains that upgrading humanity would include attempts to expand the abilities of the brain – which, of course, is an organ severely debilitated by HD.

The history of the search for HD treatments is key to the biotechnological revolution. HD-affected individuals and their families have both witnessed and participated in that revolution, starting with the hunt for the huntingtin gene in the 1970s, 1980s, and 1990s, and since then with a growing number of research studies and clinical trials involving thousands of individuals.

At the start of this decade, CHDI Foundation, Inc., the nonprofit virtual biotech focused on defeating HD, pioneered the use of systems biology, which includes the deciphering of vast amounts of biological data, in disease treatment (click here to read more).

CHDI has also collaborated with IBM to seek deeper understanding of the huntingtin protein’s role in the disease. In this effort, IBM has provided its immense computational power and the tools of big data analytics.

Enroll-HD, the CHDI-sponsored worldwide database of HD-affected individuals and family members, has more than 17,000 participants. Thousands of HD-affected individuals and gene carriers have also participated in the research involving the search for so-called modifier genes that affect the age of onset. The scientists have analyzed millions of small variations in these people’s genes.

Digital monitoring and algorithms

An increasing number of researchers and companies are in effect trying to hack HD’s genetic causes. The most prominent is the gene-silencing drug developed by Ionis Pharmaceuticals, Inc., in collaboration with CHDI and other researchers. On December 19, pharma giant Roche, now the drug’s license-holder, announced the first 26 planned sites for the crucial global Phase 3 trial to test the drug’s efficacy.

In that trial, participants will receive the drug via lumbar puncture (spinal tap), the first time this delivery method is being used extensively in an attempt to treat a neurological disorder.

For the study, Roche has designed an HD Digital Monitoring Platform, which will continually measure participants’ biometric data using smartphones and watches.

“The software is what’s special, and the analytics engine behind it,” Erik Lundgren, the Roche lifecycle leader of the HD team, said in an interview last March. “A tremendous amount of data comes in. The algorithms and how you make sense of that is what our team has been working hard on developing.”

A graphic illustrating the Roche HD Digital Monitoring Platform (source: Roche)

Privacy versus healthcare systems

As Dr. Harari warns, the purpose and uses of technologies and information-gathering techniques originally developed for something positive such as curing a disease could result in unintended, perhaps negative, consequences.

Companies such as Google “want to go much deeper than wearables,” he explains.

“If we give Google and its competitors free access to our biometric devices, to our DNA scans and to our medical records, we will get an all-knowing medical health service that will not only fight epidemics, but will also shield us from cancer, heart attacks and Alzheimer’s,” he writes.

However, he observes, “imagine a system that, in the words of the famous Police song, watches every breath you take, every more you make and every bond you break; a system that monitors your bank account and your heartbeat, your sugar levels and your sexual escapades. It will definitely know you much better than you know yourself.”

Google and these other algorithm-based systems could make decisions for us, from selecting which movie to watch to choosing a spouse to settling on a candidate in the voting booth.

In a world in where the stress on data takes on a religious fervor, the demand for the free and massive flow of information could trump freedom of expression and, by extension, people’s right to control their own information, Dr. Harari asserts. He cites pressure from “Dataist missionaries” for free access to all information, including copyrighted materials.

The danger is that “we will just have to give up the idea that humans are individuals, and that each human has a free will determining what’s good, what’s beautiful and what is the meaning of life.” 

“The big battle over what we today call ‘privacy’ will be between privacy and health,” Dr. Harari asserted at the World Economic Forum. “Do you give access to what is happening inside your body and brain in exchange for far better health care? And my guess is that health will win, hands down.[…] Maybe in many places [people] won’t have a choice. They won’t get insurance if they are unwilling to give access to what is happening inside their body.”

What kind of world are we creating?

Because of the many critical issues it touches on regarding humanity’s future, Homo Deus is a must-read book.

For the HD community, it provides valuable context for the difficult medical, social, and ethical challenges involved in the disease and the quest for treatments.

As many in science strive, in Dr. Harari’s words, to “defeat death and grant humans eternal youth,” the complexities of HD and the close collaboration between HD scientists and families may serve as a reminder that the biotechnological and medical sectors should consult disease communities and the rest of society.

Yes, despite having back problems, to avoid HD onset I would take a drug via recurring spinal taps. I would also wear a data monitor, as do people with type 1 diabetes, for example.  

However, I’m also concerned about the dystopian scenarios outlined by Dr. Harari for this century.

What kind of world are we creating for our children and grandchildren?

Preparing for the meeting with Pope Francis, a heartening milestone in the Huntington’s disease movement

Ever since I received the electrifying invitation to meet Pope Francis I, my adrenaline has not stopped flowing.

I will be one of 50 credentialed guests at the historic May 18 papal audience with Huntington’s disease families at the Vatican.

After global HD activist and papal event organizer Charles Sabine called with the news on March 3, I immediately shifted my own advocacy into high gear.

That night I dreamt vividly of walking alongside the pope, the leader of the world’s 1.2 billion Catholics.

Over the next ten days, which coincided with my spring break at the University of San Diego (USD), I dropped everything – even exercise some days – to write a detailed post on the event (click here to read more).

Sabine and other organizers have christened it “HDdennomore: Pope Francis’ Special Audience with the Huntington’s Disease Community in Solidarity with South America,” to involve families primarily from Argentina, Colombia, and Venezuela. The name means HD “Hidden No More” or “Oculta Nunca Más” in Spanish.

I have also helped coordinate efforts to include families and advocates from Brazil, which has the world’s fifth largest population and an estimated 20,000 HD patients. My wife Regina, who is from Brazil, and our daughter Bianca will accompany me to Rome. So far, about 30 Brazilians plan to participate, including my mother-in-law, who resides in Rio de Janeiro. The Brazilian advocates will also invite to the audience key Catholic bishops from their country.

Ty, #PopeFrancis!

On March 13, the day HDdennomore was officially announced, I shared the news with colleagues and administrators at USD, a Catholic institution that welcomes people of all faiths and emphasizes the quest for social justice.

“Because of the stigma associated with the disease, HD families often remain in the terrible and lonely ‘HD closet,’” I wrote in an e-mail. “With the pope's blessing and recognition, we can liberate HD sufferers from the shame and stigma and move on to finish the hard work of developing a cure!”

I later shared with them my tweet to Francis: “Ty, #PopeFrancis! Meeting #Huntingtonsdisease victims 5/18. End stigma, shame. #HDdennomore @HDdennomore http://bit.ly/2nnqAnR @Pontifex.”

At USD, the College of Arts and Sciences, the Department of History, and the Frances G. Harpst Center for Catholic Thought and Culture (CCTC) will back my trip.

On April 4, I briefly explained the significance of the papal audience during a CCTC-sponsored faculty-student roundtable on Catholic news. In September, I will give a public, CCTC-sponsored presentation on my trip and HD’s profound bioethical and faith-related implications.

I have also reached out to the Diocese of San Diego in the hopes of fostering collaboration with the San Diego Chapter of the Huntington’s Disease Society of America.

HD’s spiritual ramifications

As I write this article, I still can’t believe that I’m actually going to meet Pope Francis! I feel great personal satisfaction about meeting a person who wields both great religious and political influence – and who can bring unique, global attention to HD.

Many Catholics hope to at least see a pope in their lifetimes. In 1979, from a distance, I saw the highly charismatic Pope John Paul II during a speech he gave in New York City. In 1990, I attended a Catholic Church symposium in Rio featuring then Cardinal Joseph Ratzinger, the future Pope Benedict XVI.

This time, if all goes as planned, I will meet the pope in person.

In the coming weeks, I will contemplate what I want to tell Pope Francis.

As an introduction and sign of appreciation, I will give Francis copies of my two main books on the history of the Brazilian Church.

I’ll also be thinking about the long-term ramifications of this event for the HD cause, Catholicism, and human solidarity both in and out of the context of religious faith. As Francis himself stated recently, many Catholics act hypocritically, failing to follow the teachings of their faith. “How many times have we all heard people say ‘if that person is a Catholic, it is better to be an atheist,’” he said.

HD affects men, women, and children from all parts of the world. As a medical condition, it devastates with no correlation to any religion.

At the same time, the fight against HD clearly involves spiritual questions for which people hunger for answers.

Although blog viewership statistics can mean many things, those for this blog provide some interesting indicators of that hunger. Until my previous posting, on the papal audience, the all-time leading article was my 2010 piece titled “God, Huntington’s disease, and the meaning of life,” with more than 20,000 views – more than double the next most popular article, about the historic launching of the Ionis Pharmaceuticals, Inc., gene-silencing clinical trial in 2015.

In less than four weeks, the article on Francis has had more than 28,000 views.

I’ll revisit the theme of the HD movement’s spiritual dimension in future articles.

Remembering the HD warriors

Most importantly, in meeting Pope Francis I want to bear witness to my experience as “Gene Veritas,” the HD gene carrier who remained painfully hidden from public view for nearly two decades and lost his mother, Carol Serbin, to the disorder in 2006 at the age of 68.

I also want to recognize the valuable contributions of – and the need to increase support for – caregivers such as my father Paul Serbin, the “HD warrior” who daily looked after my mother during her nearly two-decade struggle. He died with a broken heart in 2009.

I’ve been channeling my parents a lot. I imagine them standing beside Regina, Bianca, and me, all of us smiling as we meet Francis. As devout Catholics, they would have been thrilled to meet him.

They’ll be there in spirit.

I will present Francis with a photo of my parents and ask him to pray for their souls.

Paul and Carol Serbin (family photo)

Ending shame and stigma

The HDdennomore organizers expect as many as 2,000 members of the HD community from around the globe to take part in the audience, and they hope for even more.

The event will take place in the Paul VI Audience Hall, just a few yards from St. Peter’s Basilica in Vatican City. It seats 7,000. The event starts at 10 a.m. Doors open at 8 a.m. All potential attendees should register at http://HDdennomore.com, which is providing updates via e-mail, Twitter, and Facebook.

The site also has videos featuring the South American families invited to meet the pope, as well as information about HD, discounted lodging, and other aspects of the event.

The organizers revealed that 15-year-old juvenile HD patient Brenda, a native of Buenos Aires, Francis’s birthplace, will hand a vellum scroll to the pope during the meeting. It will contain a pledge in English, Spanish, and Italian:

Huntington’s is a fatal genetic disease. It has no cure.

For too long, shame and stigma have afflicted HD families, forcing them to hide the illness to the detriment of the health, hope and dignity of those affected by the disease.

Nobody should feel shame about the existence of Huntington’s disease in their family.

It is time for Huntington’s to be HDdennomore!

Brenda and her aunt (personal photo) 

A time for joy

Huntington’s disease forces families to face a grim reality. Like so many other HD gene carriers and untested at-risk individuals, I saw my own future when looking into the genetic mirror represented by my mother’s condition.

HDdennomore will mark a milestone in the HD cause.

It will provide a stark contrast to the anguish felt by so many.

For the first time in my family’s long fight against HD, I feel joyful. I’ve smiled a lot about the fact that my family and I will meet Pope Francis.

More importantly, I’m thrilled that our HD community will receive recognition and new hope in its struggle to overcome the disease and assist scientists in the search for badly needed treatments.

Who knows? Perhaps Francis, through his kindness, wisdom, and faith, will help bring all HD families out of the terrible and lonely HD closet – and provide new momentum for the scientific progress necessary for the miracle of a cure.

Proof of heaven? My ongoing search for the meaning of Huntington’s disease in life and death

The knowledge that I carry the Huntington’s disease genetic mutation and will inevitably develop devastating, ultimately deadly symptoms has led me to intensify my search for the meaning of life, especially after the death of my mother from HD eight years ago this month.

As a historian tracking neuroscience developments and the quest for an HD treatment, I am also deeply interested in the nature of the mind and consciousness. This growing field of inquiry is full of new insights and challenges.

In 2010, I wrote an article titled “God, Huntington’s disease, and the meaning of life,” in which I explored human evolution as the cause of the HD mutation but also the impetus towards greater consciousness of our species, a vast network of thinking beings.

HD may serve “a purpose as of yet undiscovered,” I wrote. “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.”

I saw that thought partially confirmed in Brazil last September at the sixth World Congress on Huntington’s Disease, where renowned HD researcher Dr. Elena Cattaneo noted that the normal huntingtin gene, present in all humans and many other species, has a “social function, because it brings cells together…. Huntingtin is a good gene.”

Dr. Cattaneo offered an insight from a study of 300 normal brains: the greater the expansion of the huntingtin gene’s DNA (HD happens when the expansion is too great), the greater the amount of gray matter, or neurons, and therefore the larger and potentially more complex the circuitry of those brains. (Click here to watch Dr. Cattaneo’s presentation.)

Thus, because brain enlargement has played a key role in human evolution, the huntingtin gene might have had a part in the creation of human intelligence.

In my 2010 article, I also explored the oft-denied nexus between faith and science and the centrality of consciousness in the human experience by analyzing the life and writings of the so-called Catholic Darwin, the Jesuit paleontologist-priest Pierre Teilhard de Chardin.

In other articles, I have described how faith has given me the courage to confront the many challenges posed by HD.

An intriguing title

A large part of my focus on spirituality involves its effectiveness as a coping mechanism.

Last year, I augmented my morning meditation with a reading from Living Faith: Daily Catholic Devotions. Based on Biblical passages, the practical spiritual advice offered in this booklet helps me focus on meeting life’s challenges and becoming a better person.

Like many believers, however, I haven’t thought much about heaven and the afterlife – until last month a book title flashed across my TV screen and intrigued me with its seemingly incongruous combination of two words: “heaven” and “neurosurgeon.”

I felt moved to almost immediately download onto my Kindle Dr. Eben Alexander III’s account of his near-death experience (NDE) and purported encounter with God, the bestseller Proof of Heaven: A Neurosurgeon’s Journey into the Afterlife.

I knew almost nothing about NDEs other than what I glimpsed on TV programs about them over the years, but now that a neurosurgeon had experienced one and written about it, I felt the need to take the matter more seriously.

Because of my HD advocacy, I have delved into the world of neuroscience research, where scientists seek to explain phenomena such as NDEs purely in terms of the brain. Many scientists reject the supernatural, although notable exceptions do exist such as Dr. Francis Collins, the head of the National Institutes of Health and one of the individuals responsible for the discovery of the huntingtin gene.

Quite frankly, thanks in part to the intellectual rigor of both believing and non-believing scientists as well as my own experience as an academic and historian, I have also learned to keep an open mind with regard to practically any question or mystery.

As an HD advocate, I was also anxious to learn what Dr. Alexander might have to say about the brain and disease.

I had another, very important reason to read Proof of Heaven. Seeing a title that hinted at the existence of scientific proof for heaven fulfilled a growing desire for hope stirred in me by the approach of old age and especially the inevitable onset of HD.

Discovering the soul

According to Dr. Alexander, he had lain in a coma for a week, his brain under a severe attack from an untreatable, unique form of meningitis. He should have died, but, in the words of one of the attending physicians cited in the book, staged a miraculous recovery.

Dr. Alexander claims that, during his time in coma, he was transported to another realm, where he encountered a kind of guardian angel and learned truths about the universe and the overwhelming power of love. He explains that he found many of those truths extremely difficult to describe in the language of earthly existence.

Once a typical, scientifically oriented skeptic about the spiritual dimension, Alexander became a man of deep faith committed to revealing the significance of NDEs.

Dr. Eben Alexander III (photo from author's website)

“Science – the science to which I’ve devoted so much of my life – doesn’t contradict what I learned up there,” Dr. Alexander writes. “But far, far too many people believe it does, because certain members of the scientific community, who are pledged to the materialist worldview, have insisted again and again that science and spirituality cannot coexist. They are mistaken….

“In fact, I feel confident in saying that, while I didn’t even know the term at the time, while in the Gateway and in the Core (heaven), I was actually ‘doing science.’ Science that relied on the truest and most sophisticated tool for scientific research that we possess: Consciousness itself.”

According to Dr. Alexander, during his NDE he had discovered the existence of his own soul – a form of consciousness outside of the body and the brain-generated mind.

He summed up the message from heaven: “Love is, without a doubt, the basis of everything. Not some abstract, hard-to-fathom kind of love but the day-to-day kind that everyone knows—the kind of love we feel when we look at our spouse and our children, or even our animals. In its purest and most powerful form, this love is not jealous or selfish, but unconditional.”

A convincing yet disappointing story

As I read Dr. Alexander’s account and gained hope for the future, I became ecstatic. Finally, I thought, I can truly look forward to the afterlife! I will continue to fight for the cure of HD, but I don’t have to worry about dying! Finally, someone has nailed down proof of heaven!

As I read the book, however, I also felt disappointed at how little Dr. Alexander could say about God and heaven, because of the admitted human limitations in describing the experience.

At about 200 pages, the book also struck me as very short for a topic of the utmost importance.

In addition, his description of the cosmos seemed to echo scientific hypotheses put forth on earth. Of course, in reality scientific ideas and divine revelation about the cosmos should coincide. However, I wondered whether his perception was a true insight from God or simply a projection of his professed love for physics and cosmology.

Despite these criticisms, I found the book highly convincing.

A hallucination?

But then I thought some more and dug more deeply.

Jesus was the son of a carpenter. Eben Alexander III is a neurosurgeon who taught many years at Harvard University.

Here on earth, Dr. Alexander’s status validates the idea of the NDE. People crave such validation when considering an idea – or buying a book – even though the idea could stand on its own when carefully considered.

Wanting to see what others thought of Dr. Alexander’s book, I discovered the expected response from some in the scientific community. An article in Scientific American, for instance, concluded that Dr. Alexander’s experience was “proof of hallucination, not heaven.”

Esquire magazine contributing editor Luke Dittrich wrote a long, unflattering expose of Dr. Alexander’s departure from Harvard, his status as a defendant in a series of malpractice lawsuits, the suspension of his operating privileges, publisher Simon & Schuster’s manipulation of and shortening of the original manuscript, and inaccuracies in Proof of Heaven. Dittrich describes Dr. Alexander as a self-proclaimed “prophet,” a man in reality seeking in the time-honored American tradition to remake himself in the wake of legal and professional difficulties.

Dr. Alexander’s website contains a rebuttal to the piece by Esquire, which it accuses of “journalistic malpractice.”

In Proof of Heaven, Dr. Alexander states that material success became unimportant to him after his glimpse of the afterlife. Aside from some bracelets for sale with half the proceeds intended for charity, I could find nothing about the destination of the presumably millions of dollars in royalties Dr. Alexander has earned from sales estimated in mid-2013 at nearly two million copies.

For me, the jury is still out on Dr. Alexander’s story.

The larger context

Ultimately, only God would know exactly what happened to Dr. Alexander during his near-death experience.

For me, the book is important because it contributes to the effort to create a synthesis of faith and science.

Proof of Heaven also rekindled my interest in the afterlife and introduced me to the seriousness and breadth of NDEs. Whether one believes in the soul or not, NDEs can and should be studied in the larger context of understanding how the brain and consciousness work.

A seemingly infinite number of mysteries about our existence remain to be solved.

Seeing patients as persons

While I can’t judge the veracity of Dr. Alexander’s NDE, reading his book made me reflect on my mother’s final days in January and February 2006. Proof of Heaven has also helped me come to a fuller and more compassionate understanding of Huntington’s disease patients.

My mother struggled with HD for nearly two decades.

In the HD community, because we need to build awareness, we are so used to emphasizing the devastation of the disease. The devastation is real. But there is more to the person. Some readers of this blog have reminded me that I have not recognized this.

I regret not having the emotional strength and presence of mind to have seen my mother more as a person, with a consciousness and perhaps even a soul, and less as a mind and body racked by the symptoms of Huntingon’s. Because I had tested positive for the mutation, “my fear of HD kept me from sitting down with her and attempting to converse,” I wrote in a blog entry titled “Saying good-bye to Mom.”

My mother’s astonishing gesture

Only near the end of her life did I really perceive that a powerful life force continued in my mother.

The first evidence of this came in a phone call from my California home to my mom’s nursing home in suburban Cleveland. I wrote: “The nurse bluntly revealed an emotional bombshell: Mom had said that she was ‘not afraid to die.’”

I was struck by that revelation, because for years she had not spoken in any intelligent manner.

Looking back on our good-bye, I now see more clearly the increased presence of her consciousness and the degree of her “cogency” (Dr. Alexander’s word to describe another situation) as she prepared to die. Demented elderly people on their deathbed sometimes achieve an “astonishing clarity of mind” known as “terminal lucidity,” he notes.

I wrote: We then wheeled Mom to a reception room with more comfortable furniture. There we took some pictures.

Then I asked my sister and father to leave the room briefly so that I could say my final farewell to Mom.

I told Mom that I was saying goodbye and that I might not see her again. I told her what an excellent mother she had been, and I apologized for all the times that I had not been the best of sons.

I looked her in the eyes.

I hugged and kissed her.

I put her hand on top of mine on top of the tray that was part of her special chair.

I told her I loved her. She said she loved me too.

In the past couple days Mom had not moved her hands at all. When we asked her to point out things, she had been unresponsive. But then, inexplicably, Mom started to move her left hand upwards. Slowly it moved until it touched my face.

I took her hand and pressed it against my face.

Miraculously we had touched each other’s hearts.

I felt a warm glow of love and relief.

A wonderful gift

Wanting to know a Huntington’s disease specialist’s assessment of my mother’s cogency, I asked Dr. Martha Nance, a neurologist and the director of the Huntington’s Disease Society of America Center of Excellence at Hennepin County Medical Center in Minneapolis, to comment via e-mail.

“I don’t know what to say about consciousness independent of mind and body,” Dr. Nance responded. “My work and personal worlds do not operate on that plane, if there is such a plane of existence.”

However, Dr. Nance has heard extraordinary stories about and from patients suffering from neurological disorders, like the woman dying from progressive supranuclear palsy who on her last day had a vodka martini with her husband and their best friend from college days.

Dr. Martha Nance (photo from HDSA website)

As Dr. Nance told it, the patient “raised her hand that hadn’t moved in a week, and took her own glass.  She then raised the glass up in the air – a toast to life – and put it to her lips. She died quietly that night.”

What causes these moments of lucidity? Science hasn’t yet found the answer, Dr. Nance replied.

“If you play your cards right, this kind of thing can and does happen,” Dr. Nance wrote. “The point is, if you acknowledge the coming of death, perhaps even embrace it, that it can be at least peaceful, and sometimes beautiful. And strange moments of lucidity or awareness shortly before the final moment do seem to happen (sometimes, not always) – and are a wonderful gift to the family when they do.”