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FARAFARA Cure FA

Beth Bax

BethI am a wife, a mother, a good friend. And an engineer for 40 hours a week. And, oh yeah, I have a disability too. I was diagnosed (when I was a newlywed!) in 1999 at age 30. It took me years to get the correct diagnosis because my symptoms weren’t very severe. My neurologist was happy we had a diagnosis; me, not so much! 

I try not to let FA define me. I am in a wheelchair full time; and when people first meet me, they doubt my abilities. And there are many things that I can’t do or that take a crazy amount of time for me to try to do. But I also work full time, go to the gym, bike, do laundry, and make toast (& order delivery pizza) as well as everybody else. And even though I have a slur, my kids seem to fully understand me when I start hollering about dirty laundry on the floor.

I think I am my own toughest critic and I wish I could be better, stronger, faster (like the Bionic Man) but I am starting to accept there are things I can’t do for myself and I need to ask for help. I believe in doing the best with the gifts God has given me and I hope I am.

I love being part of the FA community and having support from people who really understand what I am going through. And I probably couldn’t make it through a single day without the support of my friends, my husband, and my kids.

Since I have been diagnosed with FA, I have become a famous athlete. People I don’t even know email me and offer me gifts, like free life insurance, Christian dates, and the riches of Nigeria. OK, maybe that is all spam and I am exaggerating about being an athlete. But I have ridden in six bike rides to benefit FARA and have raised lots of money for research. (I would be in much better shape, but there is usually delicious Outback Steakhouse food that follows the biking!)

I was reading a travel guide about being handicapped and traveling in Paris (we went to Italy instead). The book said that to have a great time, you need to have a sense of humor and an extra pair of underwear (not a lot of public restrooms in Paris). I think it makes for good everyday life advice too. Ciao!

Beth

About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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