When I was first diagnosed with Friedreich’s Ataxia in 2019 at the age of 22, I felt such an impending sense of doom. Like my life was about to be over, and I wouldn’t be able to participate in all the joyful experiences in life I had expected to.
Over the years, I’ve had so many opportunities and experiences that have consistently proved that inner belief to be all wrong. When I look back, I realize that many of those opportunities happened because of my FA. In a lot of ways, I am so grateful to be part of this community.
Of course, the realities of life with FA bring plenty of times of struggle, grief, frustration, confusion, and pain. You really can’t have one without the other. But I decided to sit down and make a running list of past experiences I’ve had, all thanks to FA. If I’m having a bad day, at least I can reflect on times where I’ve been grateful for my condition.
1. Sharing my life with a disability
I’ve gotten a lot more comfortable sharing my life with FA to others than I used to be. Since becoming disabled, I’ve felt really passionate about educating others on the importance of accessibility. I’m no expert by any means, but I do enjoy sharing my perspectives both in real life and on social media.
2. Speaking about my experiences
In the past, one of my greatest fears was public speaking. Now, I do it as part of my self-employment. I get to speak to other FAers and their loved ones about FA, which is honestly pretty healing for me. I’ve gotten to speak on panels both in-person and virtually to researchers.
I actually would like to do some public speaking outside of the FA community. Sometimes, I can hardly believe it myself. FA helped me face a huge fear of mine!
3. Participating in research studies
So far, I have participated in FA research studies in Iowa City, Minneapolis and Chicago. Not only is it a chance to play an important role in research for the future of FA, it’s also an excuse to visit these cities that I love!
4. Creative endeavors
I absolutely love using my skills as a graphic designer to pour into the FA/disabled community. A few projects I’ve completed include: tshirt designs for FARA fundraising, a custom reserved parking sign for myself and friends, a custom skirt for my power chair (made with lots of help from a talented friend!), branding for a disability advocacy group, and so on. Combining creativity with advocacy is for sure my cup of tea.
5. Once-in-a-lifetime opportunities
I’ve been so lucky to have been able to participate in a few marketing campaigns for the medication I take for my FA. Most recently, I got to travel to Los Angeles for a shoot and it was an absolute blast. I never could have dreamed not only of a treatment for FA, but that I would get to be a spokesperson for it!
6. New friends, new perspectives
Perhaps the most uplifting and meaningful part of being an FAer for me has been the deep sense of belonging I feel within the FA community. I’ve made lifelong friends from all over the world, who live with Friedreich ataxia, just like me.
Community resources like PatientsLikeMe and social media have been so pivotal for me.
Thanks to other brave FAers sharing their unique stories have given me such a strong sense of pride, strength, and resilience. I am so lucky to be a part of such an amazing community.
These are the main experiences I’ve had that come to mind when I think about FA. There are certainly more, and there’s plenty more to come! Taking time to reflect like this always helps me to feel gratitude. I encourage you to make a list like this of your own, in whatever capacity that means for you. You may be surprised by what comes up!
Living with Friedreich’s Ataxia, I have always found it really helpful to see how other people navigate the challenges that I have also faced. That’s why I’m so excited to be a part of the PatientsLikeMe community! If you are a member of the FA community, I recommend checking it out.
If you join, let me know! I would love to connect with you there.
