When I think about my motivations for embarking on this journey, I often minimize this part of my story. But we all have these stories, in one form or another. They are the experiences that build our foundation, shape our character, guide our philosophy. This journal is a personal story as much as it is a story of our travels. This is part of my story.
The summer of my 16th birthday I learned I had a 50% chance of inheriting a neurological disease that would rob me of all my faculties and leave me for dead as a young adult. Heavy sh*t for a teenager to process.
I still remember that cool summer morning, sitting at our kitchen table, the view of the Green Mountains out the bay window. Time stood still as Mom told me Dad had been diagnosed with something called Huntington’s Disease. I had no idea what she was talking about but I could sense it was worse than she was letting on. There was a reluctance in her speech, as if with every breath she took her words back, protecting me from their weight, but her eyes betrayed her, heavy from years of uncertainty, her greatest fears now realized. She would watch her husband slowly deteriorate to his death, knowing all her children were at-risk for the same fate.
From this point everything changed, nothing for me or our family would ever be the same. During a time when life is typically marked by feelings of immortality, I was trying to make sense of the situation, the injustice, realizing the hard truth that life promised nothing. I matured quickly. The usual teenage drama, now seemed so insignificant. Huntington’s Disease tends to strike earlier when passed from the father, with some developing symptoms before college graduation.
But on the outside, I looked like a regular young adult, I tried to pretend it wasn’t there. I went to college, where I was on the pre-med route. But I took a hiatus my senior year and studied abroad for a semester in Kenya. I did quite a bit of thinking in Kenya, a come-to-Jesus of sorts with myself.
I realized that I could not pretend it wasn’t there. If luck did not go my way, I had already lived over half my life. I began to seriously question the status quo. I returned from Kenya with the decision that I did not have the time nor the inclination to spend the next several years going to school only to come out with a mountain of debt that would take my remaining years to repay, during which I would have to devote every waking moment to my career. I began to seriously consider and appreciate the importance of a work-life balance.
My love affair with travel began in Kenya. I returned with a restless urgency that I needed to travel and explore. And I needed to do it now, while I still could. This is about when I decided to ride a bike across the USA. I don’t know how I originally came up with this idea. Perhaps I knew my Chevy Cavalier was not up to the challenge of a cross-country road trip, and being a bit strapped for cash maybe a bike was the next logical choice. At the time, it seemed like a crazy idea. I didn’t even own a bike. But if I didn’t do it now, maybe I wouldn’t have the opportunity to later. I had a 50/50 chance I wouldn’t see middle age or retirement. Carpe diem.
Fast forward thirteen years and many adventures later, I had yet to outrun it. In fact, a day hadn’t gone by that I didn’t think about it. Every day I wondered if the symptoms were starting, if my time was up. It had a way of creeping unwelcomed into my consciousness. I finally worked up the courage to take the genetic test that would unveil my fate.
A bit fatalistic, I had prepared for the worst. I convinced myself that it was better to bear the burden of knowing the truth, than continue to carry the weight of uncertainty.
And after all that time, I was told the one thing I wanted to hear, I did not inherit the faulty gene, I would not develop Huntington’s Disease. And with that I was set free.
This experience is part of me and I’d be naïve to think it has nothing to do with how I approach life. If nothing else, it instilled a keen awareness of time and my own mortality. I lived for thirteen years knowing I had a very real possibility of not seeing my 40th birthday with my faculties still intact. This affected how I prioritized my life. It also scared the sh*t out of me.
But the truth is, we all have a possibility of having fewer birthdays than we expect. My advice: If you have a dream, live it, time is a luxury you may not have.
“Tell me, what is it you plan to do with your one wild and precious life?” Mary Oliver