I was diagnosed with a very rare form of muscular dystrophy (MD) when I was only 2 years old. Doctors told me I would never be able to walk on my own. But by the time pre-school came around, after some intensive physical therapy, there I was, walking on my own. Because I walk on my own, people often think I’m not actually disabled (I do have a very visible limp though) or they’re very curious to learn about my particular disability. I’ve gotten a lot of great questions over the years which I’m always more than willing to talk about and someone actually asked me a really great question recently. She asked me if, when describing my MD, I ever told people I “suffered” from muscular dystrophy. I’ve spent a lot of time analyzing my MD over the years and have a thought a lot about the questions people have asked me but this was one thing I’d never been asked or had really thought about before though.
The short answer is no. I’ve never used that exact word when telling people about my MD. I usually just say I “have” muscular dystrophy. Then I began to think about the idea of suffering. Would I qualify myself as someone who suffers from my disability? The not so short answer to that is the majority of the suffering I’ve endured because of my disability has been my own doing. The sadness, the isolation, the beating myself up for being different…that was all self-inflicted suffering. It’s a tough thing to deal with, there’s no way around that, and I was just dealing with it the only way I knew how to in my youth. I hadn’t gotten to the point of being able to accept it even a little bit yet so I suffered a lot.
But in terms of the physical, I really suffer very little, and for that I’m very lucky. I have pain after I fall and my back bothers me every now and then (especially when I’ve had to bend over too much or stand for too long) but I don’t have the extreme pain other people have. I don’t have the muscle degeneration. I’m able to live pretty much fully independently. So I definitely wouldn’t say I physically suffer.
As for the emotional suffering, it all lies in perspective. How I choose to look at the cards I’ve been dealt. How I choose to respond to being different or have different abilities than other people. My mind can be own prison sometimes so it’s a matter of breaking out of that and not letting myself suffer. That’s not to say never feeling sorry for myself again or getting upset at my MD from time to time; those are just normal human emotions when it comes to this type of thing. But I don’t have to let the suffering get so great that I let my MD define my life or let my attitude tear me down.
I’m just a person living with MD and doing my best to make the most of that life. Thanks for the question Lindsay 🙂