I always describe my life in 3 parts. The first, from my birth until I was about 10 years old, was spent travelling all over the world, living in 4 countries before my 10th birthday, and experiencing and seeing more of the world as a child than most do in their lifetimes. I was truly blessed to be given every opportunity to learn, to thrive, and to grow into somebody whom my parents believed would make a difference. The second part of my life began at 11, when Mom was diagnosed with Huntington’s. It was during this time than I learned the value of family, of loyalty, of standing by your guns and giving what you can to those who have given their all to you. The third part started on April 20th, 2007, I was 18 years old. This time period has taught me countless things about being strong, about who you really are when the chips are stacked against you. How, when you are at your lowest point, the indelible spirit a human can possess. How far you can carry yourself if you believe. My story, like most HD stories, begins with my family.
My mother was an amazing woman, a gifted educator, and an entirely selfless person. From the moment I was born until the day she passed away, every action she took was for the betterment of my life, and to ensure that I knew how to find best possible path to adulthood. The day she was diagnosed I didn’t quite grasp the concept of the disease. I didn’t know yet how the fear of deteriorating crippled most, long before symptoms actually set in. I had never seen my mother so upset, so withdrawn, and so fragile. I would come to realize as I grew, and learned more about the disease, that ultimately the disease took from my mother what she loved the most about herself. Her independence, her knowledge, her vocabulary, her humor, her lust for life. As I came into my teenage years, I became my mother’s son, and knew that these were the things that I valued most about myself as well. I began to read any and all materials I could find about Huntington’s, how to combat symptoms, how to be a good caregiver, how to maintain resilience in the face of certain demise. My life during that time was defined by my desire to help my mother face this disease, to give to her whatever I could, and repay her for the years of her own life that she had given me. It was the least I could do; to give the woman who had made my life possible the little I could offer. However, as I grew older, I noticed that the focus of HD slowly began to turn to me, and what decisions I would make regarding my own future.
I remember vividly the day I decided to get tested for the gene. It was at the HDSA National Convention in St Louis. I was 16 years old. If you are unfamiliar with the Conventions, on the last night, we raise candles in salute of all those whom have fought the disease to the bitter end, call them our angels, and say a silent prayer for them to watch over us as we continue our fight against this monster. As the names of those who had fallen to HD were read, I felt that if I was to become one of those names someday, I wanted to fight, to fight so hard that when my name was read, people would turn to each other and nod, silently acknowledging that I had given my all, and had not succumbed to the disease, but been dragged, kicking and fighting and cursing Huntington’s until my final breath. I was going to become an HD Warrior.
The day after my 18th birthday, a small, nondescript white van pulled up outside of my parent’s modest one story brick house in the comfortable neighborhoods in northern Austin, Texas. Into my house walked a stocky, bald man, who smiled big and told me not to worry, that it would be quick and painless, over before I could blink. So with my Mother beside me, and my father looking on with the most concerned look I have ever seen on his face, my blood was drawn for my genetic test. For those who have taken the test, you know that the next 6 weeks were ones of anxiety, of perpetual fear and loneliness, as very few know the feeling of learning your test results. I liken it to a convicted man learning his sentencing from a judge, the best you can do is plead, and hope that there is a lenient ruling in your favor.
Suddenly, the day came. April 20th, 2007, exactly one month before I was set to graduate from high school. My neurologist, Dr Ashizawa, is a small Japanese man who has the maddening ability to bring calm to any high-tension situation. I decided to get my results by myself, and when my name was called I stood up, hugged my father, and kissed my mother and told her I loved her. The walk back to the consult room was roughly 20 feet, but it felt like a marathon of steps. I entered that room with the carefree buoyancy of an 18-year-old boy, and walked out with the greatest burden a man can bear, that of a positive genetic test and the fear and uncertainty that comes with it.
I spent the next 6 years fighting, sometimes against myself, sometimes against my family, sometimes against HD. I had to keep going, constantly give my mind and body goals to accomplish and work to do, to find a way to live my life that wasn’t ruled by the monster. Until 14 months ago, when my mother passed away. She fought with reckless abandon, and lived the most incredible life I have ever heard of, bar none. At a certain point comes acceptance that HD will take you, but accepting that HD will take those you love is, for some reason, so much harder to process. The dealing with the death of my Mother is so difficult, because the pain of loss is unbearable, but knowing that she is at peace, that nothing can hurt her anymore, and that her pain is over, gives such a sense of comfort after 14 years of watching her battle the disease.
After her passing I took a Sabbatical, from life, from HD, from adulthood, and I travelled the world in search of my dreams, in search of a reason to fight on, in search of meaning to a life that had been defined in so many ways by the things that have tried to bring me down and not by those things that have brought me joy. I realized that fighting just to fight doesn’t help, that you have to choose the battles that you engage in, and find allies in those battles. Nobody can fight alone.
Huntington’s Disease is an unbelievable curse, yet, in a certain way, a blessing. It leaves you with crippling uncertainty about your future, yet an incredible clarity as to what you need to do, to fight, to keep your mind and body sharp, to prevent and delay as long and as well as you can. I have fallen to the lowest lows, and have ridden the highest highs in my journey as an HD Warrior, but I always have had the drive to survive at all costs, to hope for the best, for a cure, but prepare for the worst. As an HD patient, your life becomes so narrowly focused, all you can see is the disease, the doctors visits, the medications, the medical trials, but I hope my story will help those who read it to see the bigger picture, that HD gives you the opportunity to focus on what you really want from life, and go for it. Love deeply, laugh hysterically, travel frequently, and always, always be a fighter. I may have HD, but HD does not have me. My name is Jordan Brown, and I am a Face of Huntington’s Disease.