My arduous, lucky, and enlightening journey since my mother’s death from Huntington’s disease 15 years ago

 

February 13, 2021, will mark fifteen years since my mother Carol Serbin died in 2006 after a two-decade fight against Huntington’s disease. She was 68.

 

Recalling her struggles and taking stock of my own predicament as an HD gene carrier have stirred me to reflect on my arduous, lucky, and enlightening journey since her death. Greater maturity and experience have also afforded me a deeper perspective on the HD cause as a whole.

 

My mother was diagnosed with HD in 1995, just two years after the discovery of the huntingtin gene. That breakthrough permitted the development of a genetic test confirming passage of the disease from one generation to the next. However, in retrospect, her symptoms probably had begun in the late 1980s, when she was in her late 40s.

 

The arduous years

 

Given Carol’s inexorable physical, cognitive, and emotional decline and the lack of treatments, in July 2005 my “HD warrior” caregiver father Paul Serbin sadly concluded that she needed 24/7 care in a nursing home.

 

Her move to the nursing facility greatly eased the caregiving burden on my father, although he faithfully visited her daily, still spoon-feeding her as he had done at home.

 

It also freed him to travel from their home state of Ohio to spend Thanksgiving of 2005 with my wife Regina, our five-year-old daughter Bianca, and me at our place in San Diego.

 

“I didn’t know how much I loved your mother until these past few years, taking care of her and seeing how much she has lost,” my usually stoic father confided in me.

 

Paul Serbin pushing Carol Serbin in wheelchair (photo by Gene Veritas, aka Kenneth P. Serbin)

 

From my standpoint, my mother was descending into an HD hell. Psychologically, this became the roughest period of my life. Not only was she was dying. I, too, had tested positive for the HD gene in 1999, so watching her decline was like “looking into the genetic mirror” that reflected my own future.

 

After my mother steadily lost the ability to swallow, in January 2006 I helped my father make the wrenching decision not to approve a feeding tube, which would at best have prolonged her physical life but left her bedridden, unable to communicate.

 

On the weekend of January 28-29, 2006, with my mother in hospice care at the nursing home, I flew to Ohio to visit her for what I knew could be the last time. With almost indescribable emotion, I said good-bye to my mother and, once again, gazed into the genetic mirror. This time it revealed a practically lifeless individual, barely able to move and unable to speak (click here to read more).

 

After that visit, and then learning that she had died in her sleep the morning of Monday, February 13, 2006, I felt utterly distraught about my gene-positive status.

 

In the months after her passing, I felt so terrified about getting HD that I began to act out some of the disease’s physical symptoms in front of my wife and daughter. I could not write anything in this blog for eight months.

 

My father, suffering his own severe cognitive loss likely accelerated by the loss of his wife, died on September 25, 2009, with a broken heart.

 

Tons of luck, and some positive strategies

 

I have now been without parents so long that memories of them feel like a distant past.

 

At 61, still without any apparent symptoms of HD, I feel extremely lucky. Each moment of good health is a blessing.

 

I have practiced personal and social enrichment, which scientists have recommended.

 

I have the benefit of a stable, good-paying job. Also, as the centrality of my parents faded, my roles as husband and father became paramount. Bianca became the center of our lives. Regina’s and Bianca’s love and support have proved crucial.

 

Also, because Bianca tested negative for HD in the womb, we have averted enormous health, financial, and psychological burdens (click here to read more).

 

The Serbin Family Team of the 2014 HDSA-San Diego Team Hope Walk: from left to right, Dory Bertics, Bianca Serbin, Jane Rappoport, Gary Boggs, Yi Sun, Kenneth Serbin, Regina Serbin, and Allan Rappoport (photo by Bob Walker)

 

I also exercise regularly, meditate daily, take medications to control depression and anxiety, and have a solid, long-term relationship with a psychotherapist.

 

I cannot be sure whether any of these things have staved off HD, but they generally bolster health.

 

Significantly, scientists have discovered very powerful explanations for why I am might have stayed asymptomatic so long: genetic factors, including modifier genes, that delay disease onset.

 

Gaining enlightenment about HD

 

Becoming enlightened about HD research and building bonds with scientists have reinforced both my advocacy and personal enrichment.

 

As a college professor, HD advocate, and explainer of the science ­– both in this blog and in interviews with researchers – I have had a privileged window on the quest for treatments. I have thoroughly enjoyed this work.

 

Moreover, I have gained great satisfaction in encouraging HD families to participate in research studies, platforms like Enroll-HD, and clinical trials.

 

Witnessing the progress towards treatments has also boosted my hope to participate someday in an HD clinical trial and, ultimately, enjoy the benefits of the first wave of effective treatments.

 

Overall, I believe that becoming enlightened about HD has helped me become a better person.

 

Pride

 

My devout Catholic parents – when I was a child, my father especially had hoped that I would become a priest – would have been especially proud of my family’s participation in #HDdennomore, Pope Francis’ special audience with the Huntington’s community in Rome in May 2017.

 

The pope declared HD to be “hidden no more” from the world.

 

I presented Pope Francis with a framed photo of my parents, well-dressed and smiling in a formal pose, taken after my mother had already been diagnosed with HD.

 

“My mother died of Huntington’s,” I told the Pope in his native tongue of Spanish. “My father cared for her for 20 years.”

 

In September 2017, I gave a presentation on #HDdennomore at my workplace, the University of San Diego. In February 2020, just before the COVID-19 crisis hit, I organized a screening of the poignant documentary on the papal audience, Dancing at the Vatican. It was well-attended by members of the local HD community.

 

Pope Francis displayed great love and mercy for our community.

 

Photo of Paul and Carol Serbin presented to Pope Francis by Kenneth Serbin, May 18, 2017. Photo taken shortly after Carol's diagnosis for Huntington's disease in 1995 (family photo).

 

Tributes, and imagining a world without HD

 

In many ways, since its inception sixteen years ago in January 2005, this blog has paid tribute to my parents. I have also honored the lives of other HD-affected people who valiantly fought against the disease such as Steve Topper and Harriet Hartl.

 

In these years since my mother’s departure, I have often wondered what our lives would have been like without the scourge of HD. This April 30, my mother would have turned 84 – within a plausible lifespan nowadays.

 

How wonderful it would have been had my mother – who could not interact with Bianca as a baby and toddler – been able to see her granddaughter reach college and to see Regina and me next year mark 30 years of marriage.

 

I can forge the greatest of tributes to my parents by continuing to nurture my health and hopefully secure a longer life so that I can grow old with Regina and see Bianca go out into the world.

 

When we learned of my mother’s diagnosis in 1995, there was no real hope of an HD treatment. However, since her death, research and the advent of clinical trials have brought unprecedented hope. As we’ve seen in response to the coronavirus pandemic, science can make great strides.

 

In unison with others, I can honor my parents by renewing the fight for Huntington's treatments so that thousands of families around the world can be freed from witnessing loved ones die early deaths.

Pope Francis I to meet with victims of Huntington’s disease, a first for a world leader

In an unprecedented encounter, the first for any pope or world leader, Pope Francis I on May 18 will meet with Huntington’s disease sufferers at the Vatican, bringing new attention to this affliction.

The key papal guests will hail from Latin America, the pope’s home region, the area with the world’s most Catholics, and a key locus of the quest for the HD gene from the 1970s to the 1990s.

Several HD-affected HD individuals (with both juvenile and adult onset), three at-risk relatives, and other relatives and caregivers – a total of 16 people – will travel to Rome from Colombia, Venezuela, and Argentina, the pope’s birthplace.

The news was announced today via e-mail by an international coalition of patient advocates and organizations: "save the date for the largest global gathering of the Huntington's disease community!"

The coalition includes Elena Cattaneo, Ph.D., a prominent HD scientist and senator-for-life in Italy; Factor-H, a humanitarian project founded by HD researchers Claudia Perandones, M.D., Ph.D., and Ignacio Muñoz-Sanjuan, Ph.D.; global HD advocate Charles Sabine; and the Huntington’s Disease Society of America (HDSA).

Many physicians in Latin America laid the groundwork for the event through their long-term dedication to local HD communities and assistance in selecting the families.

The announcement comes, coincidentally, on the fourth anniversary of Francis’s election as the first pope from the Americas.

“What I want him to say, in some way, is that the disease should not be hidden anymore,” Sabine, an HD gene carrier, told me. “That’s the theme of the event: that people should not feel any shame or stigma about the disease.”

“This is a dream which has come true,” Dr. Perandones affirmed in a written response to questions about the event. “After working for nearly 20 years in Latin America in order to try to improve the quality of life of patients, and feeling so alone in this endeavor so many times, it seems unbelievable that the pope will receive us.”

Pope Francis I (above, photo by Argentine Presidency/Wikimedia) and the Soto family of Barranquitas, Venezuela, after receiving the invitation to the papal audience in Rome (below, photo courtesy of Dr. Ernesto Solis)

Putting HD on the global stage

The South American HD families will be joined by three dozen advocates and HD family members from other countries, including HDSA CEO Louise Vetter and leading American HD advocate Katie Moser, the 2010 HDSA Person of the Year. Latin American Catholic leaders will also take part.

“As a global leader, Pope Francis has the power to elevate the conversation about HD to an international stage with a call for compassion – and action,” Vetter said.

I was also invited to meet with the pope, because of my interlocking connections with the Catholic Church, Latin America, and HD advocacy. My mother died of HD, and I carry the genetic defect.

I am thrilled! I consider it a privilege and a responsibility to attend, and expect to bring my wife Regina and teenage daughter Bianca. We will represent the HD community in both the U.S. and Brazil, Regina’s homeland. At least three HD-affected individuals will attend from Brazil, according to advocates there.

(Portuguese speakers can watch my report in that language in the video at the end of this article.)

Help desperately needed

Scientists and advocates began discussing an appeal for the Church to help – and then a papal audience – in 2015.

Dr. Perandones, a clinical geneticist with the National Administration of Laboratories and Institutes of Health in Argentina, and Dr. Muñoz-Sanjuan, of Spain, a vice president at CHDI Foundation, Inc., the nonprofit virtual biotech dedicated solely to the development of HD treatments, first raised the idea of seeking Church support for Venezuela’s isolated HD people during a February 2015 CHDI conference. Talking with Sabine and Senator Cattaneo, Drs. Perandones and Muñoz-Sanjuan said that those families desperately needed help.

With aiding those people in mind, Sabine, a native of England, and Senator Cattaneo came up with idea for a papal audience in fall 2015 after Sabine saw a man with Parkinson’s disease have his picture taken with Francis and also learned the poignant story of an HD-affected teen from Buenos Aires. Sabine and the senator found no “reference anywhere by any pope to Huntington’s disease,” he explained.

Thanks to Cattaneo’s connections and the Vatican’s receptivity, they were able to schedule the papal audience. Now, Sabine says of the upcoming meeting, “It is perhaps one of the most historic moments in the history of the HD community.”

According to Sabine, it will mark the first time that any world leader, including a U.S. president, will meet with HD families.

Charles Sabine (above, photo by Gene Veritas, aka Kenneth P. Serbin) and Senator Elena Cattaneo (below, photo from Cattaneo Lab)

A major opportunity to overcome shame, stigma

Sabine, a former foreign correspondent for NBC News, has pursued activism since the mid-1990s, without being yet symptomatic. His father died of HD, and an older brother has the disease.

“I had spent a lot of time working for NBC at the Vatican,” he said. “I know that the pope is the hardest person on the planet to get to – much harder than the American president.”

By blessing and speaking to HD-afflicted families publicly, Francis can make a “profound difference” in combatting the shame and stigma surrounding HD, Sabine added.

“We want as much press on this as possible,” he continued. “We want to engage as many people as possible around the world, not just Catholics, to make this into a larger sum than the parts.”

“Furthermore, we hope this will lead to action, both by the Catholic Church, with its strong presence in Latin America, as well as from local and national institutions,” Dr. Muñoz-Sanjuan wrote in an e-mail.

The public event will take place in a 7,000-seat auditorium, where attendees can observe the pope’s interaction with the South American families and HD advocates. Event organizers want as many representatives as possible from the HD community to attend.

“Anyone can go,” Sabine emphasized. “They don’t even need to be HD-affected. They might just care about HD."

The announcement made today by the international HD coalition; click on image to view larger (photo courtesy of HDSA).

A humanitarian endeavor

The organizers also hope the meeting galvanizes the HD community worldwide. Members of groups such as the global Huntington’s Disease Youth Organization could meet beforehand and go to the event together, Sabine suggested. Other events in Rome will celebrate the unity of the HD movement and solidarity with the plight of Latin American HD communities.

All attendees are required to register on the event’s official website, HDdennomore.com, by May 5. The URL means “HD Hidden No More,” a theme of the papal event linked to Sabine’s previous awareness campaign in the UK Parliament.

The site will provide information on hotels, accommodations for special needs of the affected, and more.

Noting the “immense pressure” on Francis I from ultra-conservative Catholics because of his purported liberal stance, Sabine said that Senator Cattaneo and her staff have stressed the non-political nature of the HD event.

“It’s a humanitarian one,” he said. “It’s a pastoral event. This is about regarding people with compassion and humanity. This pope has shown humanitarian credentials unlike any other.”

South America’s HD-affected: deep struggles

The papal event builds on work by Factor-H, a small nonprofit organization, to improve the living conditions in the Lake Maracaibo region of Venezuela, and other sites where poor HD families cluster. Many HD families in the region live in dire conditions. In some clusters, many generations of intermarriage mean many families have passed on the genetic disease.

Maracaibo has played a key role in HD science. Columbia University scientist Nancy Wexler, Ph.D., started the search for the HD gene among Maracaibo HD families in the 1970s. In 1993, the HD gene was discovered. It was one of the first disease genes to be identified. This research

helped stimulate the Human Genome Project of the 1990s. Dr. Wexler also was invited to meet the pope, Sabine said.

“Poverty and disease are a terrible combination,” wrote Dr. Muñoz-Sanjuan, who has taken aid to Maracaibo and other communities. “Not everyone in Latin America with HD is poor. However, the main clusters in Venezuela and Colombia are very poor, and neglected. That’s why we are focusing on these clusters.”

“These are people living maybe in families of 16 in a space the size of an American garage on stilts on a lake,” Sabine observed. “No electricity. No running water. Nothing. It was so clear that there were so many people like the people at Lake Maracaibo who are affected by the disease and who have never had any kind of recognition from their respective governments or churches.”

Sabine said he hoped the Vatican event will empower Catholic HD families everywhere to seek assistance from their local clergy in raising awareness about HD and alleviating the social burden of the disease.

Dr. Ignacio Muñoz-Sanjuan (seated) with Colombian children at risk for HD (personal photo)

Preparing the logistics

Every HD family knows the extremely difficult challenge of travel for affected individuals, whose symptoms include constant involuntary movements, loss of balance, and cognitive decline. Many require wheelchairs.

To underwrite the cost of the enormously complex task of transporting the HD families to Rome, Sabine raised $100,000 from Israel-based Teva Pharmaceutical Industries Ltd. and $50,000 from the U.S.-based, HD-related Griffin Foundation.

Almost all of the South American travelers must get their first-ever passports, and in some cases even birth certificates.

The Vatican is helping to speed the acquisition of travel documents and to prepare special accommodations for the families, including lodging at a monastery near the Vatican instead of a hotel.

“We felt they would be more comfortable staying all together in a quiet and peaceful place,” Dr. Muñoz-Sanjuan noted. “We assumed that they will experience some culture shock and wanted for them to be at ease during their stay and make the experience more personable.”

Physicians will accompany the families.

A lonely HD teen in Buenos Aires

On January 6, the Feast of the Epiphany on the Catholic calendar (the day the Christ child was visited by three kings, according to the Bible), each of the South Americans received a red envelope from the Vatican with the invitation to meet with Francis. (Video recordings of these moments will become available at HDdennomore.com.)

One was 15-year-old Brenda, who lives in the greater Buenos Aires area, where Francis served as archbishop. She has juvenile HD, which has severely hampered her ability to speak and learn. She communicates mainly by texting on her cell phone.

“The children don’t play with her, so she’s very lonely,” Sabine said. “She has no friends, because they’re afraid of catching HD. The local school wouldn’t give her access to a laptop, because they said there’s not much point, because she doesn’t have long to live.”

“Brenda is my patient and I have a great affection to her,” Dr. Perandones wrote. “She is very clever and sensitive. We have a great connection.”

According to Dr. Perandones, Brenda and her father - from whom she inherited HD - lived with his sister, Brenda’s aunt, whom she calls “mom.”

“A major concern for the aunt at the time was the fact that Brenda and her father shared the bedroom, and his movements during the night scared Brenda a lot,” Dr. Perandones recalled in an e-mail to supporters about Brenda’s reaction to the papal invitation.

To lift the family’s spirits and improve their living situation, Drs. Perandones and Muñoz-Sanjuan raised funds to make a heartfelt “Christmas for Brenda.” That resulted in the remodeling of the aunt’s home, including a new room for Brenda, a full bathroom, and a recreational area.

“Regrettably, Brenda’s father’s health gradually deteriorated and last year, on the day Brenda turned 15, he passed away,” Dr. Perandones wrote. (For girls turning 15 in Latin America, the quinceañera is typically a joyous passage to womanhood.)

Brenda and her aunt (personal photo)

A turning point for HD community

Sabine said “Brenda’s Christmas” helped inspire the idea of a papal audience.

Dr. Perandones, who describes herself as “totally Catholic,” met Francis (then Archbishop Jorge Bergoglio) before his papal election through her support of a group advocating for victims of human trafficking in Argentina. He “always supported” this effort, she recalled in her written response to my questions.

“Many indigent individuals living in the streets of Buenos Aires have neurological and mental health conditions, including Huntington’s disease,” she added. “Bergoglio was interested in this issue and gave his support to start a Homeless Rescue Program."

Dr. Perandones hopes the meeting will make HD move visible and attune others to HD families’ regular difficulties and challenges.

“I think that the meeting with the pope will be a turning point for the HD community globally and particularly in Latin America,” she stated.

In addition to Brenda and her aunt, the papal invitees include HD families from the towns of San Luís and Barranquitas in Venezuela’s Maracaibo region and from the city of Medellín and the small town of El Difícil in Colombia.

Brenda flanked by Dr. Claudia Perandones and Academy Award winner Eugenio Zanetti, a supporter of the HD cause, after Brenda received news of the papal invitation (personal photo).

A testament to the world

Rooted in Christian love and compassion, Pope Francis’s meeting with the HD-affected of South America should reflect the Church’s historic mission of aiding the sick and defenseless. With 1.27 billion Catholics and hundreds of thousands of priests, nuns, and other personnel, the Church runs an enormous, vital network of charitable and social-service entities that could have a significant impact on HD.

With the biomedical revolution, the Church has sought to both apply and adapt its 2,000-year-old moral and theological tradition to today’s bioethical challenges.

The Huntington’s disease community stands on the bioethical frontier. HD families contribute to advances in neurological and rare-disease research, and they have pioneered ways of dealing with the impact of disease such as discrimination, disability, decisions about genetic testing, family unity, caregiving, suicide, and end-of-life care.

The May 18 meeting with Pope Francis will allow the HD community to provide a testament to the world of human perseverance and solidarity and, ultimately, the need to alleviate and cure devastating diseases.

“Those suffering with HD and living in extreme poverty need urgent help to lead a life of dignity and hope,” Dr. Ignacio Muñoz-Sanjuan asserted.

I hope that Francis’s Pope’s humanitarian gesture serves as a message to the church and to world opinion leaders to address the critical need of ameliorating Huntington’s disease.

Janeth Mosquera, of the Colombian HD patient association and Factor-H, hugs an HD man in the town of Choco in the Colombian jungle, April 2016, after delivering assistance (personal photo).

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.”

The gifts

Christmas brings the profoundly sad reminder of receiving the news of my mother’s diagnosis of Huntington’s disease on December 26, 1995. She died of HD in 2006 at the age of 68. Remembering her struggle also reminds me that I tested positive for HD in 1999.

This year, however, I’ve been preparing for Christmas differently by reflecting on the wonderful gifts I’ve received.

Life itself is a precious gift. I was born because of my parents’ love for each other and their desire to raise a family.

My life is also a gift from God.

I am extremely lucky to have the gift of health. Each day, I am pained by the suffering endured by families afflicted with the disease. However, as I look forward to my 53^rd birthday on December 31, I am deeply thankful to have remained asymptomatic past the age of my mother’s probable onset, her late forties.

The gift of health allows me to continue my work as an HD advocate, fighting for those who cannot fight for themselves and promoting the search for effective treatments.

Just last month I exited the terrible and lonely“Huntington’s closet” by revealing my story and using my real name, Kenneth P. Serbin, in a mainstream publication. On December 16, I repeated the experience in Brazil, where I am a recognized scholar and regular guest writer in the press; I received a tremendously moving response from friends and even former leading government officials.

For the first time in the 17 years of my journey with HD, I can advocate for the cause freely and openly, thus multiplying the impact of my efforts and honoring the memory of my “HD warrior” parents.

More than ever, I feel the need to help others. This desire and responsibility form the basis of all the great religious traditions.

In my Catholic faith, the advent of Baby Jesus, who came to save the world from imperfection and death, culminated in one of the greatest commandments to humankind: to love our neighbors as ourselves.

My family's miniature nativity scene, made by an artist in Latin America

In the wake of my exit from the HD closet, I have achieved an incredible sense of lightness and greater closeness to others. Friends have seen it in my face and felt my passion for the cause.

“The truth will set you free,” Jesus said. In recent days, I have also felt closer to God than I have in a long time. Thinking of the drive to defeat HD, I have recalled His mission: “I have come that they might have life, and have it more abundantly.”

My greatest gift is my family.

In January 2000, my wife Regina and I received the gift of our daughter Bianca’s negative test for Huntington’s while in the womb.

Together Regina and I nurtured her, and now we must help her navigate the challenging and rewarding teenage years.

In this very difficult past week, as we Americans have struggled to comprehend the senseless Newtown school massacre, I have frequently recalled President Barack Obama’s beautiful description of parenting: “Someone once described the joy and anxiety of parenthood as the equivalent of having your heart outside of your body all the time, walking around.”

Faced with so many extraordinary demands and risks, HD families especially feel that anxiety. Yet we also have great gifts – including an immense capacity to appreciate the gift of life and the impact that a disease like HD can have on children.

My challenge is to preserve my gift of health so that I can love and support Regina and Bianca for many years to come. 

To you and yours, Merry Christmas, Happy Holidays, and a 2013 filled with the gifts of hope and good health!

Our 2012 holiday greetings photo, taken at Yosemite National Park