A Glimpse of My FA Story
On January 19th 2016, I was diagnosed with Friedreich’s Ataxia. I will never forget that day. I sat by my mom in the car in the parking lot of City Bites (a local sub shop) waiting for my dad to arrive with my brother. My dad called me and told me that he had been to the doctor’s office earlier where he had received the information that I had FA. “It’s called Friedreich’s Ataxia, Michael. Please don’t google it. I’ll tell you about it at dinner.” Well, of course, I googled it. The next amount of time (I don’t remember how long it was… between 10 and 45 minutes), I spent crying. I was terrified. I had just discovered that I had a disease that the doctors said would take most of the things I loved in life and then take my life as well. I sat through an agonizingly painful dinner, and I now don’t enjoy City Bites, which is a shame, as their cookies are delicious.
Friedreich’s Ataxia is genetically concealable, meaning that it is conceivable that the disease’s presence is not known. My parents, unknowing of the fact that they were carriers of a rare, progressive, and generally awful disease, met and had children. Each time carriers have a child, that child is at a one in four risk of having the disease. Also, there is a two in four chance that the child will be a carrier and a one in four chance that the child will be completely unaffected. My brother has been tested and is a carrier. I am the lucky one in four.
Knowing that you will lose things in life motivates you to focus on and take advantage of what you have. FA does not affect cognitive function. I have my brain. FA is trying its best to make my life hard, but I will continue to fight back. It’s a fight worth fighting.