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.
I greatly admire people with an optimistic outlook on life, those who see the best possible outcome in all situations, point out silver linings during hard times, and encourage disheartened or apprehensive people.
I used to be an optimist. Before I had any real hardship in my life, I didn’t understand people who couldn’t see the bright side of things. It baffled me when people couldn’t see positive solutions and feel energized to overcome challenges.
I thought everyone was either an optimist or a pessimist, a glass-half-full person or a glass-half-empty one. There didn’t seem to be any middle ground.
When I was diagnosed with Friedreich’s ataxia (FA) at the age of 25, I was still an optimist. But this new life sentence threw my world into a tailspin. I couldn’t reconcile my new reality. I couldn’t wrap my mind around a lifelong, progressively degenerative diagnosis like FA.
This traumatic change in circumstance forced me into a pessimistic mindset. Being new to this lifestyle, I didn’t adjust well. I was now living the “worst-case scenario” and didn’t know where to go from there. I just felt depressed.
So, I began to shift again. Now, I fall into a third category of “realist.” A realist is someone who accepts a situation as it is and is prepared to deal with it accordingly. I hope for the best, but prepare for the worst.
I also participate in fundraising, clinical trials, and research studies, I exercise, and I go to physical therapy. I do everything in my power to fight my disease, all while telling myself there might be treatments or a cure in my lifetime.
But there also might not be. So, armed with all of the knowledge and the advice I can gather from my doctors and medical professionals, I do what I can to safely live my life with FA as best I can.
Part of that means I use a walker full time, which allows me to safely maintain my independence as I continue going about my day.
My walker opens me up to a lot of curiosity from others. While some just stare or flash me a polite smile, others boldly approach, as if my walker were an invitation for me to discuss my health with perfect strangers.
I am relatively young, so people often assume I am recovering from an injury or a surgery, and they’ll usually lead with that line of questioning. I’ll smile and say, “Oh, no, I’m OK. I’m not injured, I have a genetic neurological disease, and this walker helps me walk safely.”
The most common response to that is, “I’m so sorry.” Occasionally, some people will press for more information.
Because it is difficult and heavy to explain the degenerative, relentless, far-reaching progression of a smart, devastating, and intricate disease like FA in a quick and polite conversation, I often provide a high-level description along the lines of: “My DNA causes a buildup in my central nervous system, and this blocks effective communication with my body. So, I am slowly losing coordination and my ability to walk and talk.”
Optimists usually respond to that with, “Well my friend that has MS goes into remission, so hopefully, you will, too, and then you will be fine again!” Or, “Well, I’m sure they will find a cure soon!” Or, in the most common scenario, they’ll advise me about an exercise regimen, a certain vitamin, or an idea, like extremely hot baths.
I just smile and say, “Thank you,” because I don’t want to counter their optimism with negativity and science talk. I don’t want to embody bitterness and coldness, which wouldn’t accomplish anything productive.
Pessimists usually respond with things like, “Bless your heart,” “That must be awful,” or “Isn’t there any medication you can take?” I try to maintain a smile and say things like, “Aw, well, it’s not so bad, I can still do most things if I have assistance,” in an effort to avoid getting sucked into a doom-and-gloom headspace.
Occasionally, I’ll encounter a like-minded realist who usually offers sympathy and asks what they can do. A realist will want to read more about FA later, or take the pragmatic approach of helping me load my walker into the car.
It’s hard to gauge what type of response I’ll get when I open up about FA. But I have learned that how I respond to people’s gut reactions is just as important. I try to remain neutral. I don’t want to sugarcoat my reality, nor do I want to leave people with the impression that I am on my deathbed. My goal is to raise awareness and shine through it. I think that is the realist in me, with a background in optimism.
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