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.
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 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.”
