How I process living with Friedreich’s ataxia in conversation
I share about my disease in many forums, but I'm less likely to talk about it
I’m not shy about my Friedreich’s ataxia (FA) diagnosis and how it’s affected my life. I share all of the twists and turns of my FA journey openly, all in the name of raising awareness, inspiring hope, and removing the feeling of isolation that so many people with disabilities feel.
Because of this inclination, I put undue pressure on myself and assume the role of a “disabled person.” I feel that people expect to see me get more disabled right before their very eyes or, conversely, to see me clearly improve, since I share all of my treatment efforts, such as taking Skyclarys (omaveloxolone) and having physical therapy, so publicly.
I feel like I rang all the alarms to get attention and assistance when I built Team Kendall in 2013, and everyone slowed down to look at the wreckage. Now, more than a decade later, I still face the constant threat of disastrous falls, injuries, and new symptoms with every move I make, but I’ve adapted to the chaos and built a beautiful life amid it all. I know how quickly things can go from fine to anything but fine with FA. Therefore, I revel in the “no news is good news” days.
Chances are that if you see me and ask how I’m doing, I’ll smile and talk about how happy and busy my life has been. I’ll dote on my children and ask how life is going for you. I prefer when small talk is centered around relatable topics and things that bring me joy, such as my family, a full social calendar, travel plans, or weekend schedules.
Talking about FA
Though FA is a huge part of my life and an impossible-to-miss visual distraction because of my dependence on assistive devices, I don’t spend much time talking about it. I’m intimately aware of how my FA is going, and I don’t enjoy making it the star subject of every social interaction. I’m always willing to talk about FA when other people bring it up, but I tend not to mention it unless I’m visibly recovering from an injury or adapting to a new assistive device.
I realize that can seem a little selfish. I share all of this information about FA, solicit donations for rideATAXIA, and request prayers and support for something that continually breaks my heart and, frankly, terrifies me. Yet I don’t talk about it in person. Why?
The answer is pretty simple: Life with FA is a process.
I’m constantly processing everything internally, especially my FA. “What is FA taking from me now?” “How is FA complicating this situation?” “Would my FA allow me to do that?” “How would this be different if I didn’t have FA?” And how do my answers to all of those queries make me feel? FA is a constant loop in my mind. I spend so much of my time thinking about, planning around, and cursing FA that I’m desperate for a distraction or a break from my disabilities.
I’d much rather smile and talk about things that bring me joy or hear about what’s going on with someone else than breathe more life into my disease by verbalizing my internal FA-focused dialogue.
FA is progressively degenerative. My abilities and disabilities change constantly. I’m constantly adapting to those changes. I’m constantly processing my feelings about those adaptations. So no matter how well or unwell I seem to be handling FA, just know that I’m in process. I’m doing the best I can, and I’m honored to share my journey with you.
Note: 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, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.