My name is Erica.  I have Friedreich’s Ataxia but that is not my only defining quality.  I am also married, thirty-one, and a mother to a five-year-old girl, four-year-old boy and one-year-old boy.  The path I have chosen in life is hard, but it is also rewarding.  I like to think that my diagnosis does not dictate my life.  In reality it has had a strong influence on the direction it has taken.

With each stage of progression, I have had a few options.  I chose what I felt would make me happiest.  I designed my life based on the options I had available, given my situation at the time.  I may not be living the life I thought I would, but I am living my best life.  And why shouldn’t I?

My childhood was like everybody else’s.  I was active, doing gymnastics, swimming and school plays every year.  I had an ear for music and could play a song on the piano just from hearing it.  And I had a lot of friends, I was very social.  I was a bit of an overachiever.  But in grade six, I begin having trouble.  I was losing my balance during my gymnastics routines, I was having trouble coordinating my arms when I swam, I was unable to keep my musical dance routines smooth, and I couldn’t keep up with my note taking in class because it hurt my hand.  At the time, my clumsiness was explained away by puberty, and that was that.

By grade eight, I was skipping school simply because the walk was tiring and the note taking was too painful.  It was a frustrating time for my parents and myself.  Finally, I was sent to see a wrist and hand specialist.  He had me write a five-word sentence and just from that, he immediately said it was neurological.  So, I was referred to see a neurologist.  I underwent test after test.  Ruling out the most common ones first.  I went on with my life, the best I could.  I owned my nickname “lil drunk” in high school, deciding that I’d rather be known as a troublemaker than an unexplained wierdo.  It was tough.  Knowing something was seriously wrong but having no explanation.  I stopped participating in school plays, gymnastics, even swimming.  I took up piano lessons but quickly ended them due to difficulty.  I stopped hanging out with my friends and preferred to be alone.

Shortly after I turned eighteen, we got the call to go in to see the neurologist.  I remember freaking out the night before, convinced that they’d have to operate on my brain.  Which meant shaving some of my hair, which was unimaginable at eighteen.  I was terrified, but I came to terms with it and thought I could handle it.  I never could have prepared for my diagnosis.

The doctor:  You have a rare, genetic disorder called Friedreich’s Ataxia.

Me:  Ok.  How do I fix it?

The doctor:  Unfortunately, it can not be treated or cured, and it is progressive.

Me:  –

I laughed.  Hard.  It was big nervous laughter that turned into uncontrollable sobs.  I don’t know how long I cried.  I don’t know if my mom cried.  I don’t know what the doctor told us after.  I just remember crying.  Feeling beyond devastated.

Although knowing was a relief, it didn’t make my situation any less awful.  As far as I was concerned, my life was over.  Telling my friends was absolute torture.  They cried and I tried to be strong for them even though I felt like my world was shattered.

After taking three years to adjust to my reality, I made a choice to do something with my life.  I went to college.  It was awkward, exhausting and paralyzing sometimes but I made friends.  They accepted me, disability and all, drunken appearance too.  I quit smoking, started working out and tried to take better care of myself.  I started to feel happy again.  I realized that I was still me, no matter what.  I started dating my now-husband, moved into an apartment with him, graduated college, had a baby and got engaged.  Then we bought a house, got married and I decided to go back to college, online though.  Since being disabled with a baby was tiring enough without travel.  It took me just about four years, taking two courses per semester, to finish and earn my accounting diploma.  In those four years, I had two more children, I began a French language program, and I self-published my first young-adult fiction novel.

I try not to use my diagnosis as a reason I can’t do something.  Keeping busy and having goals helps me to stay positive.  My accomplishments make me feel good about my life.  And I’m just getting started.  I’m writing more books, as I write this, and I’ll be finishing my French language program this year.  I also hope to find a job in accounting, as well as a tax business from home.  I wouldn’t be me without my disability.  But I wouldn’t be able to do the things I do without my friends, family and especially my husband.  They remind me that as the list for “I can’t” grows, so does my list for “I did”.

I want my kids to know that everyone is given obstacles in life, but how you handle them makes all the difference.  I chose to live my life.  And I wouldn’t change a thing about it!

Erica Richer