In the second
half of the 1990s, after learning of my mother’s diagnosis for Huntington’s
disease, the 50-50 chance of having the genetic mutation unsettled me greatly. One
way I dealt this was to throw myself into my career.
The fear that I
would follow in my mother’s footsteps and lose my ability to work frequently
caused me to panic. I was just 36, but the future seemed bleak because I
witnessed in my mother and other HD patients the terrible devastation of the
disease. She was declining rapidly. I thought my own decline could occur at any
time and was convinced that, at best, I wouldn’t get very far into my 40s before
HD hit.
Striving to
achieve the academic milestone of my first book – the gold standard for
recognition for professional historians – I sometimes wrote as many as 14 hours
per day.
The quest for
success – I was already thinking about my professional legacy – served as a
powerful form of denial.
Family first
During that now
seemingly crazy but certainly understandable response, I often neglected my
relationship with Regina, my wife. Regina had stood by my side throughout our
ordeals with HD, but the long hours I worked meant fewer hours to grow with her
in the marriage.
After my initial
impulse to get tested for HD right after my mother’s diagnosis in late 1995, I
had sensibly postponed testing to gather information about the disease and
avoid the risk of genetic discrimination. Regina agreed that we should delay
starting a family until we sorted out all the issues HD presented for
conceiving and raising children.
However, after a
few years of waiting, and approaching her mid-30s, Regina wanted a child badly.
My decision to
get tested in 1999 to prepare for having a family, my subsequent positive test
result, our daughter Bianca’s negative result in the womb, and her birth the
following year grounded me again in the basics of life and sealed my commitment
to my family.
As Bianca grew,
my mother headed towards death.
Soon, rather
than working overtime on professional
issues, I stepped up my HD advocacy, although always behind the scenes because
of the enduring fear of genetic discrimination.
I still spent much
time away from Regina and Bianca, yet I also learned to manage my week more
efficiently. I reserved special moments for them, especially on the weekends.
Raising Bianca along
with Regina and watching her grow into a teenager have brought me great pride
and joy. There is no more important task for parents.
Although no life
is risk-free, we are profoundly relieved and grateful that she will never have
HD.
In my work as
chair of the history department at the University of San Diego (USD), I
always say “family first” to co-workers needing time off to attend to critical matters
such as an ill child.
A clear purpose
In the 18 months since I exited the “HD closet” and announced the adoption of a second academic
field, I’m once again reshaping my career.
I’ve reflected
deeply on what professional ambition means for me. Whereas career was once top
priority, today I think a lot more about human solidarity.
At home, this
means keeping the focus on family. In the academic venue, it’s about viewing
career as a service to students, the profession, and society. In HD advocacy,
it’s a collaborative effort to speed up the discovery of treatments to save tens
of thousands of people like me from the disease.
My shift in
attitude results partially from my experience as a parent and the perspective
on life maturity provides.
However, the
fight against HD also plays a very significant role.
I especially comprehend
the importance of HD when I attend conferences such as last February’s Ninth HD
Therapeutics Conference, sponsored by the CHDI Foundation, Inc.
With hundreds of
participants focused on the single goal of defeating HD, the feeling in the
room was electric – indeed, almost surreal. The atmosphere was so intense and
the connections among the participants so strong that I felt as if I were
communicating telepathically with some of them.
Similarly,
learning that yet another person has died from HD or juvenile HD strikes me in
the pit of the stomach and redoubles my sense of urgency as an advocate.
My academic career
began as a search for professional and personal fulfillment fueled with a
passion for Latin America and its history. My investigation into the history of
science, technology, and medicine – which includes my HD advocacy and, in this
blog, an ongoing, firsthand account of living at risk – transcends the
professional and the personal. It builds awareness about the global,
cutting-edge efforts to improve brain health.
In short, I now
have a clear purpose.
Melding career and activism
My reshaped
career melds my professional training with my advocacy work. As I wrote
recently, at work I raised concerns about the long-term effects of head injuries suffered by college football players.
On April 3, I
attended a USD-sponsored panel discussion on ethics and genetic testing, with a
focus on the direct-to-consumer genetic testing service 23 and Me. Last
November the federal Food and Drug Administration ordered the company to stop
selling its saliva connection kit and genome service because the agency said it
had failed to demonstrate the tests’ accuracy. I made an audio recording of the
USD event and took photos of the participants, who included fellow faculty
members as well as two deans. I plan to report on the event in this blog. This
is the first time that I have covered a USD event as an HD blogger.
During the
2014-2015 academic year, I will be on sabbatical, that is, freed from teaching
and administrative duties to focus exclusively on research and related projects.
During that period I plan to work on a long-gestating book on former Brazilian
revolutionaries who have come to positions of power. I also aim to continue my
HD advocacy, and I will prepare a new course tentatively titled “A History of
the Brain,” a subject not being taught in our History department nor in any
science department.
I hope that
course, to be taught after I return from leave, will inspire students to become
historians and to build awareness of the centrality of the brain in our lives,
as well as produce more humanistic, historically-oriented science majors.
In general, I
feel a growing desire to help guide young people – surely a function of being a
father of a teenager and a veteran professor, but also of my solidarity work in
the HD movement.
Riding a whipsaw, but content
On April 10, I
flew to Providence, RI, to take part in a conference at Brown University marking
the 50th anniversary of the U.S.-supported Brazilian military overthrow
of the democratically elected President João Goulart.
This was the
first meeting related to Brazilian studies I had attended in more than four
years. The long hiatus was caused by my growing interest in the history of
science, technology, and medicine.
It was also the
first time I took part in a Brazilian studies event where people knew about my
HD status. I received words of encouragement from several colleagues, including
some who have made donations to the cause. I felt very much at ease, and I was
thrilled to feel some of my old passion for Brazil return and to catch up with
my colleagues.
I also brought
to the conference a much sharper mental focus, obtained thanks to my
participation in events such as the HD Therapeutics conferences, which, because
they represent completely new and highly complex material about a life-or-death
matter, require enormous concentration, energy, and openness to different
perspectives.
By sheer
coincidence, on April 12 the Rhode Island chapter of the Huntington’s Disease
Society of America (HDSA) held its inaugural family education day at Butler Hospital,
also in Providence. I took part, giving a presentation titled "Opportunities for HD Advocacy."
You can watch my
presentation in the video below. For other presentations from the education
day, click here to visit my Vimeo video album of the event. (I'll be adding additional presentations from the event in the next few days, so be sure to refer to the album again.)
Opportunities for Huntington's Disease Advocacy: A Presentation by Gene Veritas at Butler Hospital from Gene Veritas on Vimeo.
Immediately
after the family education event I got a ride to the airport with Connecticut
HD activist Laura Kokoska, who updated me on her HD-stricken mother, who is 71,
and her own advocacy activities.
On the morning
of April 13, I led the Serbin Family Team in the third annual Team Hope Walk of
HDSA-San Diego.
Flying
coast-to-coast twice in less than 72 hours (with connections in Chicago),
jumping from one event to another in Providence, presenting talks on both
Brazilian history and HD advocacy, arising early on the 13th for the
Hope Walk – it all felt like riding on a whipsaw.
No matter! I was
excited to thrive and make yet wider and deeper connections in both spheres of
my career.
As I've learned,
my life must not serve my career, but my career my life.
A successful Hope Walk
The Hope Walk
was a success, raising approximately the San Diego chapter goal of $44,000.
Lead corporate sponsor Auspex Pharmaceuticals, a San Diego-based company
conducting HD research, donated $10,000 to the event. Other major corporate
donors included pharmaceutical firms Vertex and Lundbeck, both of which also
have an HD focus.
For the second
straight year, the Serbin Family Team was the top team fundraiser, with a total
of more than $4,600. I wish to thank the 44 donors (individuals, couples, and
families) who gave to the cause, as well as the team members who walked with us
at Tidewater Park in Coronado, CA.
As in past
years, the support of HD-focused firms and the participation of more than 300
people, including some of the scientists seeking treatments, lifted my spirits.
You can view the
Serbin Family Team and other scenes from the Hope Walk in the photos below.
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, Allan Rappoport (photo by Bob Walker)
Gene Veritas
(aka Kenneth Serbin) presents 16-year-old juvenile HD patient Terry Leach with the iPad mini won by the Serbin Family Team
for being the top Hope Walk team fundraiser (photo by Misty Oto).
HDSA-San Diego
President George Essig addresses the crowd just before the Hope Walk begins
(photo by Gene Veritas).
Hope Walk
co-organizer Misty Oto addresses the crowd alongside Christian Rodriguez (left) and Terry
Lopez, organizer of a Poway High School student group established last year to
support the local HD community (photo by Gene Veritas).
Tim Schroeder
(left), Gene Veritas, and HD support group facilitator Sandy Grofcsik
Walk
participants LaVonne and Paul Cashman (left) and Jim Stone (photo by Gene Veritas)
