Hi, I am Jean. I am 50 and was diagnosed with FA about 30 years ago.
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.
Obviously there are a host of things about FA I do not want including and especially having people I love have it. What happens to my sense of self when I don’t have FA? Don’t get me wrong I am looking forward to this challenge, but I do think it will be a challenge. And what about our caretakers? They spend a great portion of their lives taking care of and/or worrying about us. How will they meet the challenge of not having to have such a fixation on our well-being? Nice problems to have, I am not complaining at all, just happily and honestly looking forward to the challenges that I think lie ahead.