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.
As my Friedreich’s ataxia (FA) has progressed, I’ve had to make adjustments to accommodate new symptoms. Since my 2013 diagnosis, I’ve had to intentionally account for countless modifications every day — step by step and movement by movement.
As part of my duties as an FA patient, I go to physical therapy every week. We start each session by discussing any falls and injuries, and any other major complaints caused by my FA symptoms. My physical therapist helps me notice trends and risk factors, and we work on solutions to either overcome, compensate for, or avoid them. I have noticed that nearly every time we discuss coping methods, the word “intentional” is used.
To avoid falls, extra exertion, injury, or faster symptom progression, I must be intentional. I can’t mindlessly do anything. Every move I make must be carefully premeditated and well-planned.
For example, my balance has become so poor that I rely on full-time assistance from a mobility aid. My peripheral neuropathy has advanced to the point that I must wear special shoes and socks 24/7. Even the way I sleep, get out of bed, shower, get dressed, cook, and do chores around the house has been adjusted to intentionally accommodate my progressive FA symptoms.
I can’t feel my feet, so I have to watch them when I walk so that I don’t take a misstep. When I sit down to write a column or watch a movie, I have to intentionally place my feet in a way that allows for good circulation and proper warmth. When I am walking, I have to mentally map out a path wide enough to fit my walker and adjust for any steep grades or uneven terrains.
I have to weigh the pros and cons before moving: Is it safe for me to attempt to get there? If not, what can I do to make it safe? Is it worth the risk?
Most people wouldn’t think twice about hopping up to snap an action shot of their son high-fiving his teammates after driving in a run during his baseball game. Most people would be able to skirt around someone obliviously parked in the middle of the produce section at the grocery store to grab a bunch of bananas. Most people can quickly get up from the ground where they were playing dolls with their daughter to answer the front door.
Unfortunately, I can’t. At least not mindlessly, quickly, or without great effort. Thanks to my mobility aid and the occasional helping hand, I can do all of those things, but only if I move slowly, intentionally, and cautiously.
Accommodating my FA symptoms takes a lot of the fun, spontaneity, and enthusiasm out of things. Many actions that most people don’t think twice about have become too difficult and tedious for me. Because of this, I feel like I miss out on a lot.
I have recently been dealing with painful cricks in my neck. Another problematic symptom that is common among FA patients is scoliosis. Though my doctors don’t foresee my spine curvature becoming so problematic that I require corrective surgery, it is becoming a more noticeable annoyance. If I roll into a strange position while sleeping, work out with the wrong form, or turn my head too quickly, I will develop a crick in my neck.
While my physical therapist was manipulating and adjusting my neck to make it better, we discussed how to prevent a recurrence. Again, the word intentional was used. I am already so intentional about navigating so many situations in my life, I became annoyed that FA was, once again, dictating another one of my abilities.
I never dreamed that I would long for the ability to be mindless and fluid, but being so intentional in everything I do just to remain a poorly functioning disabled person is exhausting, both mentally and physically. It seems as though doing what I want or need to do has become overly complicated by my efforts to avoid the inevitable hazards of my FA symptoms.
Of course, I will keep moving forward with intentionality, purpose, and hope, despite the struggle. As the great Martin Luther King Jr. said, “If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”