I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
Friedreich’s ataxia is a daunting, life-altering diagnosis. It changes every aspect of your life, especially as your disease progresses. It changes your ability to do the things that once came easily, and takes away your ability to do the things your peers can do without thinking twice. I have learned that FA doesn’t just change the physical aspects of my life, but my emotional and philosophical outlook as well.
Processing a progressive disease like FA is constant, all-consuming, and hard. There is no handbook for handling this kind of life change. Everyone experiences FA differently and everyone handles those experiences differently.
One thing I have found to be pretty universal in the rare disease world is this: no matter how brave, joyful, motivated, determined, optimistic, or hopeful we seem, our disease scares us and we want a cure. I am no different.
My future with FA terrifies me and I strive for a cure daily. I raise awareness and funding for medical research, I go to physical therapy regularly, and I use all spotlight opportunities to help my fellow FA community. My fear is a driving motivator. However, I choose to spread hope and light while I do whatever I can to help bring a cure to my community despite those fears. I choose to have and share a positive outlook. When FA gets me down, frustrated, and scared, I choose to focus on the good in my life and to look forward to what’s ahead.
FA is a relentless disease and it can swallow up all hope if you let it. My choice to remain positive does not diminish the reality of living with this disease. I work daily to acknowledge the dark before focusing on the light. Some days are harder than others. Some days, FA’s darkness wins out and eclipses the good. The unfairness and heaviness of life with a progressive disease gets too hard to overcome with sheer determination.
I wish there was a fix for those days. But in my seven years of experience with FA, all I know is that those days end and you get another chance to try again.
Accepting FA and its impact on my life doesn’t diminish my desperate desire for a cure. I have accepted that I have this disease and that it is changing my body and my personality. I certainly don’t like most of the changes. However, fighting reality will get me stuck, when productive forward motion is my goal. Accepting reality and learning how to move forward will keep my life going in the direction I want.
A great reminder from one of my mentors, Julie Richard: “You can feel fearful and still act fearless.” This is my choice. This is the choice of a lot of my friends in the FA community. Don’t let our fearless act fool you into thinking we aren’t passionately pursuing a cure for Friedreich’s ataxia. We are just trying to get all the happiness out of life while we wait for that day when we finally find a cure.