My partner of 16 years, Ben Trust and I figured we would live a long life together. We were both healthy, regulars at the gym, and also loved to hike. We ate the right things and used sunscreen. As with many in the gay community, the way we looked was important. Then, slowly, I began to have cramping in my legs and abs, and twitching in my arms and legs. I thought nothing of it until after two days of hiking and bike riding, I collapsed when I got off my bike.
Several visits to neurologists, including two visits to the Mayo clinic, revealed the truth we were dreading – I was diagnosed with ALS. Ben and I were devastated. In an instant everything changed and little made sense. We didn’t know much about the disease, just as most people prior to the phenomenon of social media ice bucket challenges didn’t. Quickly, we learned it leads to death, on average, in three to five years.
ALS has no real treatment, and no cure. There is not even a definitive test for it. While research has continued and some progress has been made, 75 years after the death of the baseball player that bears its name, Lou Gehrig’s Disease continues to be a killer.
It attacks the nervous system and kills the motor neurons – the nerve cells that connect the brain and spinal cord with muscles. It robs the ability to walk, grasp, talk, swallow and, eventually, breathe. That is what kills you – the inability to breathe. Most people spend the last part of their lives as quadriplegics, needing a machine to breathe and being fed through a tube. It is not pretty.
Not unlike HIV/AIDS, ALS is seen by most as something that happens to other people. Unlike AIDS, ALS is NOT contagious. That is not the scary part. What should scare us all is that it affects anyone without regard to age, race, gender, sexuality or anything else. It is an indiscriminant killer. Only 20% of the time the cause is hereditary. The rest, as in my case, is sporadic. It just happens and we don’t know why.
Some see the diagnosis as a death sentence, others as a challenge. A doctor friend who was on the forefront of the AIDS epidemic, told Ben and me that many of those to whom he delivered the AIDS diagnosis, but chose to fight, are still with us today. Ben and I chose, not only to fight, but also to actively become involved in education and research. If possible, I would volunteer for any trial that would help find a solution.
My future can’t be the one Ben and I imagined before all of this. And so we chose to fight like hell to find a solution. Frankly, it’s the only thing that makes sense now and my reason for being. We are thankful for the gift of time, as I am lucky to have a slowly progressing form of ALS.
Ben and I looked for groups at the global forefront of research to find treatments and a cure. We found the non-profit biotech, ALS Therapy Development Institute in Cambridge, Mass. The dedicated professionals there have a single-focus goal they keep with an incredible sense of urgency: to find treatments for people living with ALS today. In essence, in our lifetime – the abbreviated lifetime of those of us living with ALS. They also have incredible compassion and support of gay men and women, and their partners, living with ALS.
As with HIV/AIDS, the idea is to get people to live longer, with a better quality of life while work continues on a cure. It may come in the form of a cocktail of drugs and supplements. As Rob Goldstein, the openly gay Vice President of Marketing, Communications & Development at ALS TDI told me, “It is not that there will be no cure, it is that we don’t know it yet. It has happened before with many other diseases.”
Ben and I enjoy every day now like we never did before. We love each other more, and spend as much time together as we can. We hold each other often and look for the day when we will be beyond ALS.
José Cofiño and his partner Ben Trust founded BeyondALS to raise awareness about ALS and funding for research to find a solution for it. http://www.BeyondALS.org