What’s Wrong With You?

disabled-vector-sign_9124It’s the question I dread the most. It’s the question that I really don’t know how to answer. It’s the question that can get a bit nosey. It’s the question that can be a little embarrassing. It’s the question I really wish people wouldn’t ask. The question? “What’s wrong with you?”

I never know how to answer the question. Once upon a time the answer was multiple sclerosis. Then the answer was “They don’t know.” Then the answer was muscular dystrophy. Then the answer was Lou Gehrig’s disease. Then the answer was Charcot-Marie-Tooth. Then the answer was hereditary spastic paraplegia (for a host of reasons, I’m still not persuaded that hsp isn’t the answer). Now the answer is dystonia.

The problem is compounded by the fact that most “normal” people have never heard of these diseases. I had never heard of hsp or dystonia until the words came out of my neurologist’s mouth. I saw a cardiologist and I was asking him if my tachycardia could conceivably be caused by hsp, and he looked at me as if I had just asked him the proper trajectory to reach Mars in the next five minutes. Raise your hand if you’ve ever heard of Charcot-Marie-Tooth? Didn’t think so. Thus, not only do I need to answer the question, but I need to explain my answer and most people, quite honestly, aren’t interested in the full answer. That makes answering the question difficult.

It can get a little nosey. Some people won’t stop at the simple answer and they want to know every single symptom and every single problem and every single struggle. Don’t. No disrespect, but I don’t owe you – a stranger – a complete medical history, no matter how badly you want it (and, yes, people will come up to you in a store – people you’ve never seen before – and ask what’s wrong with a young man that’s he’s riding in a scooter or barely able to walk or seems to be in a great deal of pain).




But, I must admit that there are a host of things that are wrong with me. I have hair growing out of my ears (I try to keep it trimmed, but sometimes it just gets unruly). I have hair that’s bleached from the chlorine in the pool. I have vision that is growing worse year by year. I have a birthmark on the big toe on my left foot. I have a scar on my left hand because I was opening a Christmas gift with a sharp knife a few years ago.

There’s more: I have trouble getting up in the morning, I detest chicken (that’s a problem when you’re a preacher and you’re married to a woman who loves that foul bird [see what I did there?]), I love fish (that’s a problem when you’re married to a woman who is allergic to fish), my Southern accent has grown more pronounced over the years (I really can’t say “Christ” with one syllable no matter how hard I try), and I like to eat a little too much.

I have many other faults: Had I asked her, Tammy would have been more than happy to help me make a list. But, these are sufficient to let you know that I’m not perfect – in fact, I’m far from perfect. Yet, I’m more than my disorder. When people see me and ask what’s wrong with me, they want to know about my neurological issues, but I’m more of a person than that. My dystonia and hsp (I still think it’s hsp regardless of what the neuro says – that’s a story I’ll share some other day) are physical issues. I’m still a person. I’m still a whole person. Don’t look at me as a person who has problems because my brain wiring is off: someone who can’t walk right or who has a great deal of pain or who struggles with unwanted thoughts. Look at me as Justin, as a person, as a human being who is more than my health problems.




Go bless someone today!

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