A month after definitively exiting the
Huntington’s closet by publishing my story in the mainstream media, I feel an immense relief.
As one good friend predicted, I now
feel lighter.
After learning of my mother’s diagnosis
for HD on the day after Christmas 1995, I built a near-perfect firewall between
my advocacy for the Huntington’s Disease Society of America (HDSA) and
my career.
Nothing symbolized that firewall more
than my e-mail management. On thousands of occasions I zealously guarded the
firewall by sending messages from five different accounts and often triple-checking
the sending address and especially the addressee.
Now I no longer worry! I relish
communicating about Huntington’s disease on my main e-mail.
Speaking or writing openly about HD is
an utterly new and liberating experience.
“I feel now that I can be more fully ‘me,’”
I wrote to one work colleague, who first learned of my story with the
publication of my article in The Chronicle of Higher Education on November 4.
I also feel closer to everybody – from my wife and daughter to
all of the people at work I had kept in the dark about my risk for HD and my work
as Gene Veritas.
Gene Veritas, aka Kenneth Serbin (photo by Bianca Serbin)
In
my corner
The feeling of lightness grows when I
think of the immense emotion and support my story stirred among friends and
professional colleagues.
“Only now do I believe the social and
political climate in America have evolved to the point where I can reveal my
journey living with the gene for Huntington’s disease,” I wrote in an e-mail
notifying my work colleagues about the article. “Please know that what will
most certainly come as a shock to you is something that I have come to terms
with over the past 17 years. I am also happy to report that I received a clean
bill of neurological health at my most recent checkup on October 30.”
Most were stunned to learn that I had
tested positive for HD and, together with my wife Regina, faced the travails of
leading a double life, testing our daughter Bianca for HD in the womb, and
witnessing my mother’s demise.
The very first comment, and perhaps the
most significant, came from the person whose reaction I worried about the most,
my dean (and, essentially, boss) at the University of San Diego, Dr. Mary Boyd.
I was immensely relieved and deeply
moved to read her e-mail: “Thank you for your courage in sharing your story.
You are a true inspiration and I am so proud that you are my colleague.”
“Thanks for your kind words of
support,” I responded. “It means the world to me that you are in my corner.”
Dr. Boyd, who sent news of my article to her Twitter followers, later asked if I would grant
an interview for a feature article on the university website. On November 20, I
gave the interview and did a photo shoot with Regina and Bianca. The article
and a video will appear soon.
Sources
of strength
Several colleagues were, not
surprisingly, a bit hurt that I hadn’t confided in them sooner. Still, they
understood when I explained that I couldn’t risk harming my career and by
extension my family.
A number of colleagues had never heard
of HD or had little knowledge of it. One actually knows a local family facing
the disease and promised to put them in touch with me. Along with her husband,
another responded immediately by donating to HDSA.
Others recalled their own families’
struggles with neurological disorders. One colleague at risk for Parkinson’s
revealed how her father had died of a combination of Parkinson’s and Lewy body disease.
Another, whose sister had just died
after a long bout with cancer, began reading this blog after seeing the Chronicle article. “It’s a little hard
for me hearing so many voices of people in pain given my recent loss,” he
wrote, “but at the same time, I have to tell you, it has been therapeutic in
spite of the fact that we are looking at different conditions, … because the
family dynamics of people who have to go through this are so similar.”
More than a dozen people left comments
on The Chronicle website. “I
am also at-risk for HD, and I'm also a budding humanities scholar (recipe
for disaster, eh?),” wrote one person. “Your article was very moving, and I am
so relieved that your good works will make it easier for the rest of us to live
with HD more openly. The stigma can be just as debilitating as
the disease. I’m also sending you an email, and I would love to help
with advocacy and awareness.”
Such comments, e-mails, and my
colleagues’ gestures, including some very special hugs, provided me with
incalculable strength to carry on the fight against Huntington’s.
Doing
our jobs
“Yes, I am feeling much lightness, one
the one hand, but, on the other, an even greater responsibility and
determination in carrying this fight forward,” I wrote one friend and former
San Diego colleague.
To another fellow professor, I expanded
on the idea of responsibility: “We all must be leaders – in our families, our
jobs, our churches, our communities. I am simply doing the job that we are all
cut out to do in life.”
People sensed that I don’t dwell on the
negatives of my predicament. Like all of us, they proceeded with their own
challenges. Hardly missing a beat, I maintained my own routine at home and at
work.
However, I also renewed my commitment
to defeat HD.
On Friday, November 16, I helped out at
HDSA-San Diego’s 12th annual Celebration of Hope Gala. Afterwards, I
pulled an all-nighter to post an article about the gala and efforts by the
honored company, Isis Pharmaceuticals, Inc., to set up a clinical trial of a
potential drug for attacking HD at its genetic roots.
I arranged for a Portuguese translation
of my Chronicle article to appear in
one of Brazil’s most prestigious newspapers, the Folha de S. Paulo, later this month. (My academic specialty is
Brazil, and I speak Portuguese.) In September 2013, Rio de Janeiro will host
the World Congress on Huntington’s Disease, which I plan to attend. The
Southern Alberta Chapter of the Huntington Society of Canada will also
republish the article.
With the family holiday greetings cards
I mailed last week, I included a slip of paper with the HDSA Snowflake of Hope
and Help and a reminder to keep the organization in mind for year-end
charitable giving.
I’m going to start wearing my blue HDSA
“Care2Cure” bracelet, and I’m going to set up my e-mail program to include a
tagline with information about HD and my advocacy in every message I send.
Gene
Veritas – again
Each day I am reminded that people are
suffering and dying from Huntington’s disease.
In exiting the Huntington’s
closet, I want to combat the stigma and fear surrounding HD and galvanize
increased support for brain research. This is my job as a public advocate.
However, I’ve also done something to and
for my private self. By publicly sharing my gene-positive status, I am assuming
it for myself fully for the first time.
All the years of anonymity allowed me
to deny that I could get symptoms. As terrible and lonely as the HD closet was, I felt safe inside.
More than ever before, I am Gene
Veritas, the truth in my undeniable genes, which include the debilitating and
deadly mutation that causes Huntington’s disease. Gene Veritas is also Kenneth
Serbin, professor, HD community advocate, husband, and father.
The responsibility is enormous: I must work, in concert with other advocates, to save myself and my family from the
ravages of HD.
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