By Gene Veritas
The threat of Huntington’s disease in a gene-positive person’s life cuts down
many hopes and dreams, including the drive for professional success.
In
the ten years since I tested positive for the genetic defect, I have steadily
diminished both my considerable career ambitions and my commitment to my
profession, which requires substantial intellectual commitment.
I joined
the board of HDSA-San Diego in 1998. From 2001 to 2007 I researched, wrote, edited, and laid
out our tri-annual newsletter.
On average I spent about six weeks a year
working on the three issues. I interviewed many people in the local HD community
and encouraged others to write about their stories. The most intensive period of
work would start on a Friday evening and extend through twelve-hour Saturdays
and Sundays, during which I came out of my home office only to eat or briefly
say hello to my wife and daughter.
Friday night folding
parties
Many a time I drove the diskette or CD to the printer,
troubleshot last-minute problems, and drove around with boxes of newsletters in
the trunk of my car. In the early years, before we employed a print shop that
automatically folded the newsletters, our board held Friday night “folding
parties.”
We’d sit or stand around a table and fold the 1,500 or so
copies. Then we had to stick address labels on them and sort them into boxes by
zip code so that the post office would give us the non-profit bulk
rate.
My wife helped out, as did our toddler daughter. I remember her
sitting on the floor with newsletters in front of her. It was one of her first
experiences of contact with people outside the immediate family. I was proud of
her, and I always felt happy and relieved to know that she had tested negative
for HD while in the womb.
Running the website
I
designed and implemented our very first website in early 2002, a do-it-yourself
project on Tripod.com. Shortly thereafter a local company, Lawinfo.com,
generously donated the services of a professional designer, and we were off and
running with online communications.
That site soon needed a serious
revamping and, in late 2007 we haltingly began the project. The work became
intense in the second half of 2008, when another board member and I researched
companies and interviewed their representatives. Thanks to my board colleague,
who had extensive experience in website oversight and content management, the
process went smoothly.
After we selected Regency Web Services of Irvine,
California, the highly intensive, detail-oriented work of design and
construction began. In February, I spent a day in Irvine learning the custom
content management system. Our new site
– the one your are viewing
– finally went live in April.
Two
jobs
Throughout this entire period of writing newsletters and
managing the website, I also attended monthly board meetings, helped with and
reported on fundraising events, participated in HD support group meetings, and
became deeply involved in HD advocacy, especially in the area of stem-cell
research. I have also monitored the chapter’s e-mail inbox.
All this work
is like having two jobs.
The more time, thought, and energy that I
dedicated to HDSA, the less I concentrated on reaching the upper echelons of my
field.
In 2007, I had a job offer that would have positioned me quite
well for the move to the top (
click here to read more). It included a very substantial raise, greater
responsibility, and the chance to work with some of the most accomplished and
most ambitious people in my field.
But I turned it down. If my wife had
taken a job in her field in that town, she would have seen her salary and
benefits drop dramatically, thus diminishing many of the gains on my side of the
family income equation.
If it weren't for HD, we likely would have made
the move. However, my mother started showing symptoms of HD in her late 40s,
and, as I am about to turn 50 very soon, I too could start losing my capacity to
walk, talk, and think. We simply could not risk a situation in which my wife
would have to support both me and our daughter on a severely reduced salary and
with inadequate benefits.
My new companion
Since
the inauguration of our family’s new pool in July, I have been swimming at least
a few times per week for the first time in a many years. The pool has a
Fastlane, which creates a powerful current, converting a small pool into a
virtual lap pool. My wife and I researched the Fastlane very meticulously, as I
wanted to use the pool as part of my program to attempt to prevent the onset of
HD.
The Fastlane is my new companion in the fight against HD. Not only
does it make exercise both highly challenging and convenient; I also get a
psychological boost from the exercise and from knowing that I am doing something
good for my body.
One of my heroes growing up was Mark Spitz, the winner
of multiple gold medals as an Olympic swimmer. I remember him explaining once
how he got through the long and difficult training sessions. He said that, as he
swam, he would think of all of his old girlfriends.
When I’m out there
with the Fastlane, I’m often thinking about the increased flow of blood and
oxygen to my brain. I think about BDNF, brain-derived neurotrophic factor, a
substance produced by exercise that is very good for the brain. Researchers, in
fact, are looking for ways to increase BDNF in the brains of HD
patients.
Turning point in the pool
On September
23 I took an especially vigorous swim. Like many people, I also use exercise as
a moment to blow off steam or to mull over problems. On this day I thought
through all of the many changes in my life resulting from the knowledge of my
gene-positive status and my HDSA activism.
Then, as I increased my pace
and moved ever closer to the Fastlane, it suddenly hit me that I had become a
very different person. I had given over to my HD activism all of the ambition
and energy that had once driven me professionally.
“You are no longer
that professional,” I told myself several times as I worked against the
current.
Coming to terms
After swimming, I wrote
down some of my random feelings:
“We live in a society obsessed with
success and celebrity. I’ve given up on success. I’ve undergone a career switch.
My regular job is my paycheck. This is a process that I’ve been going through
since I found out about Mom’s diagnosis for HD and especially after my positive
test. Success is not money or fame or a career but a cure of the disease and
living to a normal, healthy old age.
“I could get sanctimonious about
success, but I won’t. Where would I be if HD had not hit me? I’d like to think
that having a family and aging and maturing would make me more sensitive to
these issues and also to other people and their issues. But I think HD has
definitely played a role in this.”
A bit later I wrote an e-mail to one
of the great friends I have made through the publication of this blog: “I just
have to be careful not to let all of this HD advocacy work, blogging, HDSA
volunteering, etc., consume me. It sometimes borders on an obsession, which is
natural when you’re fighting for your life.”
Everything pales in
comparison to HD
My dad, the Huntington’s disease warrior who
cared for my mother for fifteen years until she died in February 2006, had died
on September 25, two days after my revelatory swim. In the weeks leading up to
his death and in the aftermath, I struggled with a hurricane of emotions
involving his health, the strained relations with family members who are in
denial about HD, and my deepening fears about the possible start of my own
symptoms.
On October 6 – two days after we held a memorial service for my
father – I added one more follow-up item to my swimming notes: “Everything
except family pales in comparison to this battle against HD.”
An
unenthusiastic interview
I’ve written this blog entry while
riding home on a long flight back from another job interview. I applied for this
job because it matched well with my qualifications and would offer the chance of
another substantial raise. Obviously a part of me still strives for some
professional achievement, although I had mixed feelings about making the trip,
especially so soon after my father’s death.
As in 2007, it was exciting
to meet new people in the profession, and it was deeply gratifying to see how
excited they were to meet me and discuss my accomplishments. Nobody, however,
had the slightest idea of how I spent so much of my time.
And, with my
father’s death and the many preoccupations of recent weeks, I did not have time
to prepare adequately. I did not perform as well as I could have.
My
heart was not truly in the interview, and I knew it. We all frequently mask our
true emotions with a smile, a gesture, or a comment. I have become an expert at
this after keeping my gene-positive status secret for so long – precisely
because I don’t want to jeopardize my professional opportunities.
I put
on this performance once again during the interview, but this time it was not
very easy. Perfectionist that I am, I became frustrated with the way the interview went. I was sad
and exhausted at the end of the interview and simply stared out the window at
the dreary fall evening as I rode to the airport.
Back home at
Job One
After the 2007 offer, I decided that I would hunker down
in San Diego for the long-term battle against HD. If I get an offer this time, I
will certainly be tempted to take it, because it could be even better than what
I was offered in 2007.
But we will once again face the same big question:
will my wife’s less secure situation in a new job be good for the family as a
whole if I become symptomatic?
Sadly, once again the best I may be able
to do is use a potential offer as leverage for a counteroffer with my current
employer.
When I get off the plane, it’ll be time to get back to Job One:
remaining secure in my current job, staying healthy, dealing with the emotional
fallout of my father’s death, loving my family, and keeping alive the flame of
hope for treatments and a cure for Huntington’s disease.
Tags: Huntington's disease, Huntington's, gene-positive, tested positive, HDSA-San Diego, daughter, mother, father, wife, symptoms, fundraising, stem-cell, research, BDNF, patient, success, disease, advocacy, cure