A common misconception about having a disability is that the person must be suffering. It’s a term that gets (carelessly) tossed around in regards to life as a person with a disability.
What They Say
“Oh, you must be miserable having to deal with all that!”
“I feel so sorry for you; you must really suffer.”
What I Feel
Yeah, I mean, I wouldn’t say that having my disability (Spinal Muscular Atrophy, or SMA) is a cake walk. I wouldn’t say I’d wish it upon anyone, either. Having a disability means that you’ll have to experience some things that many people could never imagine. Intense surgeries, lengthy illnesses, complicated medical treatment, lack of empathy from others, access barriers, higher cost of living, and even co-morbid disorders.
To be quite honest, though, the bureaucratic issues are probably the most frustrating to handle. Things like insurance battles, equipment malfunctions, lack of available equipment and services and fighting with unsympathetic (and even sometimes cruel) caseworkers just to get the care we deserve.
Weaker or Stronger?
Having lived my entire life as a woman with a disability, many things that come easily to most have been harder or more challenging for me to achieve. Having said that, it doesn’t mean I don’t reach my ultimate goal(s); it just means I have to take a few detours along the way. Because many things don’t come easily for me, when I DO reach my goals, I think it gives me a greater sense of appreciation. SMA, by definition, is supposed to make those affected weaker. In a physical sense, it has. I have lost some abilities over the years. But, in many other ways, it has made me so much stronger.
As with most things in my life, I have found that facing my disability with a fiercely positive outlook has made a world of difference.
A quote I came across years ago spoke to me on a profound level. It states, “Happiness… It’s a decision I make every morning when I wake up. I have a choice: I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do. Each day is a gift, and as long as my eyes open I’ll focus on the new day and all the happy memories I’ve stored away.”
To me, that’s saying that sure, my legs are essentially wet noodles, and my lungs kinda suck at being lungs—but, I’m alive. And my mind is still sharp. Well, less sharp after having two babies, but still… I get to wake up and spend my days with my two beautiful babies. I get to enjoy my relationship with my wonderful husband. This gorgeous state? I get to explore it. I get to taste delicious food. And I get to play with our two hilarious doggies.
I cannot sit here and say that I don’t live a blessed life because I absolutely do.
I endure the surgeries and the illnesses and the bureaucratic challenges because after all, pain is temporary. But the love and light I experience every single day? That’s forever.