My Hell, Friedreich’s Ataxia

I am what most people (including me) would refer to as, a control freak, a micromanager, or neurotic. It is kind of a twist of fate that 19 yrs ago I was told I had a diagnosis of Fredrich’s Ataxia (FA), a neuromuscular progressive degenerative genetic disorder. Basically, I was told my body would deteriorate at an unknown rate of time, and it did not really matter what I did because it was going to happen anyway. An extremely hard future for anyone to be told, nevermind someone like me, fact-oriented and deadline weary.

One of my strengths or some may say downfalls is I am really good at staying busy (some might say too busy). I tend to keep busy, creating a constant distraction for myself. In the past 19 yrs, I have…..

  • moved 17 times
  • had 3 pregnancy
  • had 2 sons
  • 20+ different PCAs (personal care attendants)
  • walked without medical aids
  • been a single mom
  • walked with a walker
  • became a wheelchair user
  • went to 3 different colleges full-time
  • had multiple engagements to be married
  • help plan a few weddings, including my own
  • got married
  • and so much more!!

Yet despite all these distractions (life events), I still have FA. Even though, I have not let that “rule” my life. It has always been in control behind the scenes. My disease has progressed and that f***ing sucks. I know there are better, more poetic was to say that, but sometimes it is the most fitting. I have heard many people and I have personally, debated whether it is better to die suddenly or to know in advance that your health is failing. I still do not know my answer, even though I live everyday haunted by my future. I have heard every line in the book “anyone could be hit by a bus tomorrow,” is my personal favorite to hate. Yea, I know, so……….? I then wonder if I am somehow being overdramatic? But I am pretty sure that most people do not live in fear of that impending bus.

Living with a disease that has no set prognosis is hell. I wonder quite regularly if this fall will be my last, or if this will be the virus that I can not recover from. That is a truly horrible existence. I have not been given a prognosis. Sometimes the unknown is harder to deal with. It is also extremely hard to get people to find you any kind of priority when you are not dying, but are beyond repair. Instead, I feel doomed to go through life collecting numerous afflictions (gestational diabetes, hearing loss, high cholesterol). In and of themselves these afflictions are very minor, and you might be able to treat them, but they all seem to increases one’s chances for other, more dangerous complications. I, of course, am thankful every time I dodge a bullet, which is funny because people with FA do not have reflexes, but I still feel like a waiting time bomb on wheels.

When I am not amidst of one my setbacks (a broken nose, concussion, debilitating virus), I am doing my very best to live a “normal life”. Which consists of kids, school, dinners, the gym, eating right, cleaning, bill paying, nevermind trying to find room for self-care. I not only try to live a “normal life”, but an exceptional one. I do not allow myself any ‘time off’ for fear that I will have my qualifications and right to be a mother questioned. As a mother with a disability, I have been questioned for 18 years about my choice to have children, continuing right through my pregnancies and as they continue to grow. How can your child learn physical activities? Are they safe alone with you? Will your speech pattern negatively affect theirs? Do you ask too much of them? These are some questions I have been asked, and some that are implied constantly through strangers’ disbelieving stares. For those very reasons, I put so much effort into blowing people’s expectations of me as a mother out of the water. I sometimes wonder if people get so caught up with what I can not do, they miss what I have done and still am able to do as a mother. I am really resourceful, organized, smart, an excellent listener, loyal, honest, responsible, dependable and more. All of which I have taught and am teaching my sons. Not to mention passing on my good looks, which is just a bonus for them.

Why then do I continue to fight a battle doomed to fail from the beginning? Somedays, and even more recently, I find myself asking myself the same question. Of course, there are days that are much more difficult than others to get up and fight another day, especially while maintaining a smile. The short answer and also my go-to one is my sons. I chose to bring them into this world, they are my responsibility and they need me. At least that is what I have been told. True, I agree to a certain extent, losing a parent at any age is devastating. The reality is I need my sons as much as they need me. No, I don’t mean physically. They are my motivation behind everything I do (the fire under my ass). I want to be there as they complete all of life’s milestones. I look forward to every time the world sees how amazing and capable they are. Making them proud of me and my efforts are one of my major goals.

My second motivation is to be able to share my story and experiences with others. No, I do not have life all figured out. I am not some wheelchair-using life guru, or because I did it right. In fact, I am hoping I am able to share my experiences both past and present to help people gain knowledge. My goal is to raise awareness about disability ( in particular Fredrich’s Ataxia), but even more than that I want to be able to my connections with people on so many levels and to express how multidimensional we all are. Maybe what I have experienced is helpful for someone else to hear and know.

I know people’s hurdles in life may be similar or very different. Therefore people are motivated by a multitude of goals. Children are not a motivator for some people, nor is the thought of sharing their stories. The point is to find whatever motivates you, set your sights on that goal and fight like hell. Do not let the monsters win. I truly believe life is about attitude. I always want to be remembered smiling. What motivates you? Don’t forget, it takes all of us a Village to navigate life.