Tuesday, October 13, 2009

My new profession: HD activist

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 the San Diego chapter of the Huntington’s Disease Society of America (HDSA) 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 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.


Anonymous said...

I am in my email and I see you have a new blog entry. I cannot open it up and start to read like any other email. I go to your blog, I read it's title and then find myself getting up from my PC and taking a minute to prepare for whatever I am about to read. While growing up and during most of my adult life, HD has been a secret. Even among my family members who were already exhibiting symptoms. Who were we fooling. That elephant has never left the room. I read, I shed tears, I smile, I nod in agreement. No one in my family has ever been tested. I have never been tested. Think I have made it Gene. I am consumed with guilt that I think I have survived. I am now an advocate for HD. I am trying so hard not to allow all the pain in the past and pain yet to come, to paralyze me again. I again am overwhelmed by your strength and your courage. Thank you for writing.

Alyson said...

Thank you for this blog. I had never heard of Huntington's disease until 3 weeks ago when my mother was diagnosed. I was not told about the testing because they really thought she had parkinsons and they did not want to worry me unecessarily. I am overwhelmed by all the websites and the reality of this disease not for myself, but my little boy. I have a question as I debate this choice in my head. Do you ever regret being genetically tested? My husband and I both feel that I should do the test. Living with a 50% chance will make me live with the disease anyways and I feel it will drive me slowly insane, but I have been advised to not do it. My other issue is having more children and getting myself into research studies now, so that if I have this and do not have a chance perhaps I can contribute to my son or other people's children. Again, thank you for writing this blog and being so honest. I am going to use it as a tool to prevent a breakdown in relations with my brother and other family members as we inform them about this disease. You write about your father being your Huntingtons warrior, well with this blog and your honesty, you are my warrior.

Gene Veritas said...


I have never regretted getting tested!

There is no rush to test. Discuss it. See a psychologist or counselor. Make sure you get tested at an official HDSA testing center such as a Center of Excellence.

Good luck and keep me posted!


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