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 (FA) is a cruel diagnosis in several ways, and those ways seem to frequently morph, multiply, and momentarily take over my life.
When I first started to learn about FA and my particular prognosis as a late-onset patient, I concentrated on the disruption to my walking ability and increasing dependence on mobility assistance. I thought that of all symptoms, this would have the greatest impact on my future, so it deserved the most attention.
What I have learned in my nearly nine years with FA is that I severely underestimated the reach of this condition. I thought that I would just figure out a way forward with whatever symptoms presented, rerouting my path of life. But thinking and doing are two completely different things.
Doctors described the loss of balance and coordination to me, and I even witnessed it by seeing fellow FA patients walk in person or on video. However, setting your expectations based on research and what the doctors guesstimate is in no way comparable with actually experiencing it. I was completely unprepared for how overwhelming and all-consuming this symptom truly is.
This truth becomes more apparent every day as I struggle with the ever-present, conflicting thought patterns of acceptance, fight, hope, and fear. My mobility’s visibility multiplies its effect on my life. Whether people watch me slowly struggle to reach my destination, stumble and fall, or cling to my mobility aids, it is obvious that I have a disability.
The other symptom that seems to highlight that “Kendall has a disability” is my speech. It is slow and slurred, but still understandable. I’ve been told that my speech has the cadence of a sleepy person who is slightly intoxicated. While this symptom isn’t dangerous or disruptive to my way of life, it’s still an obvious way to measure the impact that FA has had on my body.
Then there is the symptom of fatigue. In my experience discussing FA with others, people can relate to that symptom more easily than balance because everyone experiences tiredness or even situational fatigue from time to time. Yet FA-caused fatigue is uniquely debilitating. This symptom has completely changed my personality, abilities, goals, expectations, and way of life. The more exaggerated my fatigue becomes, the worse my balance and speech are, making fatigue the most important symptom to manage.
I consider those to be my main symptoms. Peripheral neuropathy made that list for a while, but as I have learned how to successfully manage that symptom and keep it unproblematic, it has fallen off my list.
Little did I know that I was harboring another debilitating, sleeping giant: scoliosis.
Since grade school health checks, I’ve always had a noteworthy but unproblematic slight curvature in my spine. I guess you could say that scoliosis was my first FA symptom, only I didn’t know it at the time. Over the years, my curvature has become slightly more dramatic and, therefore, more problematic.
My scoliosis is in my midback, causing my right shoulder to be higher and lean forward more than my left. This results in near-constant discomfort and frequently painful cricks in my neck. The base of my curvature is on the left-hand side of my midback, and because those muscles are so tight, I frequently tweak my back.
I naively had no idea that scoliosis could cause chronic back pain, but here I am, experiencing it. That is why scoliosis is now on my main list of FA symptoms. It’s becoming an increasingly visible FA symptom, too, but the pain it causes is invisible, just like my fatigue. It has been difficult to wrap my head around the fact that yet another problem is slowly happening to my body, and I have no control over it.
I know that I can and will adapt to this symptom, just as I constantly do with the other symptoms; I just need to be patient with myself.
“We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.” — Romans 5:3-5, New Living Translation Bible