What it's like to live with a progressive neuromuscular disease

Wednesday, July 6, 2011

Just ask me.

A couple of days ago, I asked my four year old son if he wanted to come change his baby brother’s diaper with me. As I slowly made my way over to the changing table, he ran (as he often does, because everything seems to be a competition these days) and arrived there first, stating, “I won Mommy! I’m faster than you. You’re slow. You wear leg braces.”

As I carefully placed the baby on the table, I was surprised by how little his statement bothered me. I didn’t burst into tears. I didn’t feel hurt. Nor did I feel angry. But why not?

Maybe because what he said was not a judgment, not a criticism, and not mean-spirited in any way. It was simply a descriptive, factual statement. He was merely commenting on what he has observed in his most innocent, untainted four-year old way.

It’s been said plenty of times before- children bring a fresh, unfiltered honest perspective to our reality. They have not yet been influenced by the stigmas that seem to plague our culture and society. After I was diagnosed with HIBM, one of the many thoughts that kept recurring in my mind was the impact my disease would have on my future children and/ or on my relationship with them. I imagined angry outbursts on their behalf, “Why can’t you just be like all the other moms?” Or sad moments, “I wish you could come ______ing with us (insert your favorite family fun sport- skiing, playing tennis, hiking). Or most devastating, “I’m embarrassed.” Let’s face it, kids don’t like to be different. But where did that come from? Why is it that having a disability often provokes embarrassment, shame and a desire to hide? I should re-frame that. Why is it that I felt such feelings when I was diagnosed?

I suppose it’s no surprise, for in my culture, disabilities, weaknesses, diseases and defects of any kind are considered taboo. But it’s not just within the Persian community. Based on my personal experience, it seems quite pervasive. People are so uncomfortable around those of us who are different in this way. In the beginning, it took me a while to “come out.” I went from keeping my HIBM diagnosis a secret from most to now wearing my AFO’s (lower leg braces) out in public with a dress and sneakers for the world to see.

It continually surprises me how comfortable people are to stare at me or rather, to try not to stare at me, and yet how uncomfortable they are to ask me about my braces for example. There’s a natural curiosity to their stares. And I get it. And that’s okay. So just ask me. Ask me what they’re for, how they work, what they feel like, etc. It’s as if asking me about them or what’s going on with me will somehow be upsetting to me or “make me feel bad” about it. But I am living it every day. It’s already upsetting at times, whether we talk about it or not. It’s when people don’t ask, that it can feel hard. It can feel lonely. It feels as if it’s too much for other people to hear, to take on. That’s when it feels like it actually is a bad thing, something that shouldn’t be discussed and something that I should try to hide.

Life can be difficult and challenging at times, but it doesn’t have to be bad. We don’t have to be afraid of the hard stuff. Sharing experiences and trying to understand what it’s like to walk in someone else’s shoes is what brings people closer and ultimately what fosters acceptance.

I happened to have been born with a certain genetic mutation that caused certain symptoms in my body. That’s all. I have accepted that. I have made peace with it (or at least I try to most of the time). I wish that others could more easily accept it too. And not be afraid to look, to ask and to try to understand…

Please visit the NDF website for more information about HIBM and how you can help fund a cure

Neuromuscular Disease Foundation

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