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.
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.