Before I developed symptoms and then was diagnosed at 25 with Friedreich’s ataxia (FA), a progressive and degenerative disease, I was healthy, active, and able. Since my symptoms progressed, I no longer am “able,” at least not without assistance.
Being disabled was not part of my plans for the future. Disability caused by FA is a lifelong personal and emotional journey that no one can prepare you for.
I never expected pitying smiles when people watch me walk my kids to preschool. I never anticipated paralyzing fear when making my body perform relatively simple tasks. I never planned to desperately cling to a clinical trial for hope for survival. I never aimed to be “inspiring” by doing the things that all moms do, just because I’m not able-bodied.
Life with a progressive disease is full of struggle, sadness, fear, and the unknown. But it is also full of opportunities for growth, strength, and learning.
I have learned more about genetics than I ever anticipated. I have developed a strong awareness and compassion for my fellow members of the disabled community. I have made wonderful friends with people I never would have met without the FA community. I am learning how to use my voice as a force of light and strength. Because of these opportunities, I am thankful for FA.
What I want people to know about life with a rare disease, specifically FA, is that it’s complicated. Nothing in my life is simple. No task is mindless. Every task is taxing. FA has affected every area of my life.
Using an “assistive device” does not remove those complications, rather it aids my ability to cope with my symptoms and attempt to carry on as normally as possible. FA is always on my mind, and it is always trying to pull me into a dark, negative, and unproductive headspace. It is just as mentally exhausting to be me as it is physically exhausting.
I also want people to know that living with a progressive disease is a process. I have good and bad days. I have seasons of triumph and defeat just like everyone else. Sometimes, I am honored to be an inspiration, while other days I just want to be “normal.”
Everyone has a story. Everyone has complications in life. My life story happens to contain a cruel disease.
I am always willing to discuss my life and the adversity I face. I do not shy away from awkward or uncomfortable situations anymore. FA has taught me to become comfortable with the uncomfortable. It is OK to be curious about my disease. And it is OK to ask. Chances are I can see the concern in your eyes, so go ahead and ask.
Just like everyone, I crave companionship and friendship. I despise the fact that FA has tainted my ability to make and maintain friendships. My disease makes people shy away from asking me to join them for fear of making me feel uncomfortable or pressured. No one wants to make the “disabled girl” say, “No, I can’t do that. ”
When I’m not invited because people worry about how it will make me feel, I feel even worse and more disabled. I still want to come to game night, even though I may be unable to participate in goofy handstand contests. I still want to go to an event even though I’ll have to park in the handicapped spot and use the elevator. I would rather be given the opportunity to say “No, I can’t” than miss the chance to participate.
I often feel like my walker is a barrier between me and the able-bodied world, when really it is my attempt to be a part of that world. I am learning and exploring my ever-changing limits, and I appreciate the grace and space to adapt to this life that my friends and family have given me. I just want the world to know that my disability does not define me.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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