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.
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.
A clear purpose
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
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.)