The need to be connected, or the need to love and be loved, are among the most basic needs that exists for people. As children, we grow with a sense of belonging to family, friends, teammates, teachers, coaches and so on. Having a “tribe” gives meaning to our lives and tends to help make hardships easier to live through.
In many lives, that sense of belonging can be jeopardized or flat out removed by a hundred different things, commonly; divorce, loss of loved ones, relocating to new cities, not making the team and almost any diagnosis of a long-term health problem, to name a few.
The diagnosis of a disease is devastating, scary and leaves most people feeling alone, lost and defeated. When I was diagnosed with Friedreich’s Ataxia I wasn’t too worried at first. I had never heard those words and the first time I did hear them it was through a nonchalant conversation with a neurologist over the phone who seemed to deliver the news as if it were no big deal. She had scheduled an appointment for me with a Geneticist and Genetic Counselor who would explain things the following week. She didn’t sound too worried about things so I wasn’t too worried about things.
Of course, a week later, after sitting down with the genetic professionals, a fuller picture of the future was painted. Further, about 3 minutes on Google that night added to that painting in vivid details that were completely foreign and overwhelming. Thankfully, with the way my brain is wired, I would only spend about two weeks wrapping my head around this diagnosis and the new prognosis of my life before choosing to face this villain head on.
The people I have met, the friends I have made and the Tribe that I have found over the last eleven years has been the most rewarding, significant and influential elements of my life. My sense of connection is deeply rooted evenly amongst people I hang out with on the weekends and people I’ve only met virtually.
There are many things in my life that are less than ideal, especially the life-shortening condition of Friedreich’s Ataxia. However, I realize that if it weren’t for this thorn, life would be completely different and I wouldn’t have the tribe I have today.
With that said, I hate Friedreich's Ataxia. I hate disease in general. I hate the negative effects it has on my life and the lives of people I care about. I want Friedreich's Ataxia to be cured. However, I'm grateful that it is a part of my journey and I'm grateful for the sense of connection it allows me to hold. I believe connection is more powerful than the disease itself and I work hard to keep it that way.