The Glass Half Full
I have always tried to live my life seeing the glass as half full. Even being diagnosed with Friedreich’s Ataxia (FA) at age 14. I simply viewed it as a hurdle, not a death sentence.
Growing up in a fairly rural area meant that any exposure to other Ataxians was a very rare occurrence. My well intentioned mom took to the internet trying to find someone who I could relate to and help me understand my new life. To our amazement she found someone not much older than I was who only lived 20 minutes away.
After just one phone conversation with this kid, however, I informed my mom that I did not want to meet up with him. I decided this because it was so clear to me that he was definitely a half empty glass type person. I do realize that everyone has their own struggles that they are dealing with, but my life was going to be challenging with my new diagnosis, and having a total “Debbie Downer” of a guide would not help me.
Getting Used to My FA Diagnosis
Over the next few years I stumbled through my diagnosis (pun intended) on my own. I set little goals for myself. An example of a major goal was making sure I walked unaided across the stage at my high school graduation. When I reached that endeavor it gave me an awesome sense of accomplishment.
My freshman year of college was full of new experiences and challenges. I was clear across the state from my very supportive family, living in an apartment on my own, and at 19 years of age trying to make it seem normal to use a cane every day. Very frustrated at times, I continued trying to accomplish everything in my life with the misguided impression I was the only FAer to ever do this.
During my fourth year away from home there was to be an NAF meeting in SeaTac, Washington. I was very hesitant to attend anything Ataxia related because of that one kid who I talked to on the phone, and who totally freaked me out about my diagnosis. But as the convention was literally taking place in my backyard, I decided to give it a go.
A Turning Point
I don’t use the phrase life enhancing lightly. That’s exactly what it was! I was surrounded by hundreds of people in all age groups and of many different abilities dealing with the same challenges I have faced for the past decade by myself. I met many inspiring people such as Kyle Bryant, and many researchers, including Dr. David Lynch.
Attending that conference totally changed my life. It was there that I decided any research that I could help with in order to cure FA was going to happen.
Over the past 10 years, I have traveled all over the country participating in as many trials as I can, meeting many more people in our community along the way. The studies themselves have varied quite a bit in regards to the type as well as the results. I have filled out many questionnaires, been a Guinea pig for sample drugs and have taken the dreaded Peg test WAY too many times to count. As far as I am concerned though, it has been worth it.
This last research trial, in which I have been participating, is showing many positive results. Prior to this study, I had come to terms with the fact that all of these studies were not going to benefit me, but maybe, just maybe, the solution for many in our condition is getting closer and closer.
My initial goal was to be more than willing to participate in any kind of research in order to eradicate this horrible disorder from the face of the planet, and prevent future generations of having to fight something so dreadful. Today, however, even though I was diagnosed 20 years ago, there is finally a reason to see the glass as half full again!
About the Author:
Dirk Desserault is a 34 year old who has an associates degree and is an office clerk for a dairy company in south-central Washington State. He enjoys combining his love of baseball and travel.
Read Other Member Stories
Resources for Living with Ataxia
- Find an Ataxia support group on the NAF event calendar.
- Find research studies and clinical trials that are recruiting participants on NAF’s Help Develop New Treatments page.
- Watch Ataxia webinars hosted by experts.
- Read the latest Ataxia news on NAF’s blog.
- Find a neurologist or specialty clinic in your area.
- Support NAF’s work in your own way – visit our Ways to Give page for ideas.