FA is like being lost at sea alone on a sailboat, in the middle of a hurricane. That statement may seem overly dramatic to some people, but to those of us living with Friedreich’s Ataxia, it feels like an understatement.
Seventeen years ago I was anxious to leave for my freshmen year of college and really thrilled about my future. As captain of my own life, the beautiful, endless blue ocean was in front of me. I thought nothing could stop me, and I was ready to start my life.
The blue skies and tranquil water did not last, however. The black clouds started to roll in. On the day of my high school graduation, we were instructed to walk up three or four steps to the stage, to be photographed shaking our principal’s hand. A week or two later, my mother received those photos in the mail. The first comment she made was that I was not smiling. I responded, “I was too busy concentrating on not losing my balance and walking in a straight line to smile.”
For a few months prior to that day, people had been noticing that I would trip, miss stairs, or inexpiable lose my balance At first it was chalked up to not paying attention, but after that memorable day, it started to become clear there was something wrong.
Two weeks prior to leaving the state for college, I was diagnosed with FA, which I had never even heard of. Along with my towels and sheets, I was handed a four-page pamphlet describing the symptoms, causes, and possible physical effects. These effects would happen to me in an unknown span of time. I did not know exactly when the storm would hit and what damage it would cause, but the storm was inevitable.
So, I constantly feared the worst. I stopped living my life in the now. I was more focused on what I might not get to do later on. Somehow I had to complete everything I had once dreamed of doing, at breakneck speed—marriage, motherhood, etc.
I am now thirty-five years old. I have been a full-time wheelchair user for nine years. I no longer am able to transfer (to my bed, toilet, chair, shower, etc.) by myself. I do not walk or stand anymore.
Being in a wheelchair, believe it or not, is not the hardest part of FA. The changes in my voice strength, the continually worsening accuracy in my hands, and the increasing need to depend on others are only a few of the negatives I face on a daily basis. I am a smart, stubborn woman and being unable to properly express myself or even take care of simple daily tasks, like cutting my own food, is torture.
In addition, there is this recurring issue I am faced with, and that is being trapped. I am unable to drive; I voluntarily gave it up almost nine years ago. My reaction time was too slow for what I consider safe. So unless a PCA, family member, or friend is willing to drive me, I am able to go out very little. Not only do I require a ride to the store, but shopping also requires a companion to help me get and carry things, to help push my chair, and to help me in the bathroom.
Not only do I deal with being trapped within my home, but also within my body. I am not mentally disabled, as my body and voice would lead one to believe. My voice is quiet and sometimes unclear, which often leads to people misunderstand me or speak to me as though I am a child. I am a married mother of two strong, handsome boys, and I do not like being talked down to.
Medical trials and research into FA give me hope, like a land sighting when you thought you’d never see land again. The idea of land for me has changed so much—it is no longer necessarily walking; it is being able to fully complete my daily tasks independently. Daily tasks include showering, vacuuming, and carrying my own coffee. Although, walking again would be amazing!! I fully support any trials and choose to participate in them, in the hopes that at the very least I will be able to spare future generations of people with FA from this lonely and rocky journey.
Please feel free to visit the website about and for families and people with FA and see what is new in our world!