Last summer, I was asked to show my support, along with other MDA families, at the finish line of the 2012 MDA Trans-NH Firefighter's bike ride. When it was announced at the end of the ride that the 2013 ride would be dedicated to me, two things raced through my mind. The first thing I thought of is how cool it would be to thank the MDA for their continued efforts in working with FARA to find a cure, and the second was that firefighters are usually good looking!

As the ride grew near, I was asked to give a speech at their banquet on the first night of the ride. I was excited; until I found out I was expected to speak for 15 minutes! I had no idea where to even begin. I have only spoken or been seen as a representative at FARA fundraisers and events, so I was out of my comfort zone.

When the day of my speech approached, I had a short list of notes to help me during the banquet; I was very nervous and felt unprepared. I was afraid to spend too much time talking about FARA because that is what I'm used to :) When I was introduced and handed the microphone, I looked out at all of the sweaty and tired riders and suddenly I wasn't so nervous and the words started to flow.

In high school, I was a pretty normal teenager. I worked hard to get my driver's license at 16, and restored a Mustang GT with my dad. I traveled, and have been to many states, both coasts, and several different countries.

During college, I really focused on maintaining a 4.0 GPA. After my freshman year, my balance deteriorated to the point I could no longer walk. I decided to try stem cell therapy, and gained significant muscle mass, with improved tone and control.

I feel each day we hear of yet another breakthrough. We are coming closer and closer to the cure. As I wait, I do all I can to help FARA keep going by fundraising and raising awareness.

On Tuesday night, I had a "Flatbread & Fishermans fundraiser for FARA". Flatbread restaurant, which serves organic brickoven pizza, has a weekly charity night. A portion from the sale of pizza goes to FARA. A friend of mine donated a keg of "Fisherman's brew" which the entire proceeds from that sale also go to FARA. My uncles played some great tunes and my aunt belted out a few songs. I was rolling around from table to table checking out everyone’s pizza!

Throughout the night I saw a lot of family and friends, a lot of coworkers and neighbors, and a lot of other families affected by FA. As always it was a great time.

This is something I have been thinking of a lot lately. They are going to find a cure for FA. Of course, it can never be soon enough, but it will come. When they do I am going to be as ready as I can be emotionally, physically and spiritually. I eagerly anticipate a cure and try to do what I can to make it happen. I think it is going to be harder than I guess/anticipate.
For 30 years I have known I had a chronic disease. For twentyish years I have identified with and identified myself as a person with a physical disability. Chronic disease, disability, Jean Walsh [yes talking about myself in the third person ;)] are so inextricably intertwined right now. I am not my disease, but it is complicated. My sense of identity is, right now, married to chronic disease and disability. While disease and disability do not run my life, they are facts of my life. And to me, disease and disability have given me opportunities to be strong, pursue happiness and be giving that I might not have had otherwise. I feel like I am a better version of me because I have FA. Maybe I would be the resilient person I think I am now if I didn’t have FA ... something I’ll never know and is not, to me, worth much thought.