I was twenty-nine when the call came that they were removing my father’s feeding tube. I had visited him every time I came home, but it still managed to come as a shock. It had been years since he had been able to speak clearly, and longer still since he had walked. He was unable to feed himself, and the medical team at his hospital assured me there was nothing to gain by prolonging his life. Within a few days, he had passed away, and my girlfriend of two years traveled home with me to oversee his funeral, and inter him in the mausoleum with my baby brother.

The funeral was somber, but came with its own benefits. While I stood before my father’s family to say a few words, I looked out at my grandfather, my uncles, and all the other men who looked like me, not like my father when he was wasting away, and something dawned on me then. I had only ever seen the version of an older Candiano man who was dying, as I had lost touch with his side of the family. I didn’t get to see the men who reminded me of myself, men who were healthy in their forties and fifties. Upon seeing them, and the hope they gave me, I made a decision. After ten years of living with uncertainty, I would get tested.

Surprisingly, one of the thirteen centers in the country for Huntington’s that were operating at that time was located at USF, close to where I lived. After meeting with the doctors running the program, it was determined that I was a candidate for testing, but that I would have to submit to individual counseling and group therapy before I would receive my results. Two months later, in January, I had my blood drawn, and expected my results in a few weeks.

During the wait, my counselor Frank continued to ask me about issues that I didn’t think were relevant. What if I didn’t have the disease? Why had I waited so long to get tested? What finally sparked my desire to do it now? Every week I found myself wondering if we were going to get to the real issue, how to handle the bad news. Frank seemed more interested in what I would do if I did not have HD. For a few weeks I told him I didn’t know, I wasn’t sure. How could I know? I never allowed myself to think about that fifty percent chance, but I would think on it at home.

I didn’t get a chance to answer the question before I went in for my results. Unfortunately, the person in charge of deciding my readiness decided that I wasn’t there yet. They recommended another month or two of individual and group therapy, stating that I seemed to have high anxiety levels. They were not wrong, but my anxiety turned to rage as I left the office. I was furious. How else did they expect me to feel? I went home to think about how to better present myself next time, and returned to Frank the next day.

After venting my frustrations to Frank, I told him what I intended to do were I to get good news about my diagnosis. I was going to start a family, hopefully with my girlfriend. I was going to continue my career managing restaurants. I might even move back home to see more of my mother and sister. I wasn’t sure, but I would take everything day-to-day. Now, I asked, could we please discuss what I was supposed to do if my results were less than optimal?

Frank spent a long quiet moment looking at me then. I could tell he was waiting for me to speak, for me to put the pieces together. Nothing came. We spent the next few minutes waiting each other out, until he finally spoke.

“Nathan,” he said slowly, “you just told me what you should do if you do have Huntington’s.”