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.
Since I began my Friedreich’s ataxia (FA) journey in 2013, expectations have become a huge part of my life.
Before my diagnosis, I had never even heard of FA, let alone expected to engage in a lifelong battle against it. I felt anchorless in a raging sea of uncertainty. All of my plans and expectations went out the window, and I was suddenly on a mission to find a new anchor.
I was desperate for a doctor to give me a timeline of what I could expect with FA. When will I start falling regularly? Require a walker? Need to make my home accessible? Become dependent on a wheelchair? Develop cardiomyopathy?
I was convinced that if I had solid expectations, I could accept each new reality for what it was and continue living life to the fullest, knowing what was coming and when. Unfortunately, no one on earth has that knowledge.
One of the biggest lessons I’ve learned from living with FA is that no matter how much I plan, take precautions, and hope for a certain outcome, I need to expect the unexpected. Falls and injuries happen. Symptoms progress. New symptoms arise. My responsibility is to be aware of my new reality, adjust, and find a way forward.
A mentor of mine recently shared research and advice about self-awareness, what to do with that knowledge, and how to move forward with it. She said that if you’re struggling every single day, if you feel like you’re treading water and barely keeping your head above the surface, you’re not alone. You can make choices and take actions to manage your circumstances, because “treading water is not where you’re meant to live.”
After my diagnosis, I was treading water, desperately trying to cling to concrete expectations that I wanted a doctor to set for me. I unintentionally hit pause on my life because I was waiting for someone to tell me how to move forward. I let everything joyful shrink away because I had no self-awareness anymore. My identity had changed from a happy, healthy 25-year-old to a young adult facing a lifetime battle with a relentless progressive disease.
Now that I’ve lived with FA for nearly a decade, I have become more self-aware. I’ve noticed that when I’m afraid of a new symptom or obvious signs of progression, I tend to obsess. I talk with everyone I know about it. I pray, write, text, and constantly mull it over, as though I can think my way out of the problem.
When I am run down with fatigue or recovering from a fall, I have an incredibly short and harsh temper. When I get in my head and spiral into thoughts about how FA is too hard and life is unfair, I project my pain onto others and resent them for not walking a mile in my shoes.
All of these feelings are OK, but my reactions are not. It’s my responsibility to become aware of these tendencies and to try to move forward in a more productive, constructive, and kind way. We are all wonderfully complex — good, bad, and everything in between. We are meant to live full lives.
I believe that if I do the work to be self-aware, taking full responsibility for my actions and letting go of my desire for expectations, my life will be better, even with FA.