On my curious malady

It’s something I always ignored.

“Oh, it didn’t affect me. I wasn’t bullied. I had lots of friends.”

And no, I wasn’t bullied. And yes, I had lots of friends.

But to pretend that my curious malady had no effect on my is the mere sticking my head in the sand and ignoring my history.

What’s this malady? Why, it’s what denied me insurance as a “pre-existing condition” before Obamacare: my stutter.

I can’t remember a time when I didn’t stutter. As long as I can recall speaking, I stuttered.

And we’re not talking about a cute little stammering hesitation. We’re talking about gut-wrenching, running out of breath blocks, where I just couldn’t get the words out, couldn’t make myself heard, face contorted, body twisting just to force out the words. I can just imagine what my face looked like, wracked with the effort of mere speech, speech which came as easily as walking to anyone else.

No, I don’t recall being bullied. And I don’t recall being mocked as a child. But perhaps that’s just my gauzy wistful memory of a perfect childhood. And even if my peers at school didn’t mock me, that doesn’t detract from the shame I felt.

“Why me,” I would ask myself. This was an obstacle for which I didn’t ask. And it was an obstacle.

Until I found a doctor who could treat me successfully, my life choices were constrained by my disability. I couldn’t take a job where I had to talk a lot. I eschewed several career options out of a fear of speaking. I stayed in jobs long after I had tired of them because, hey, it was a paycheck, and someone with my malady would be hard pressed to find anything else. I constricted myself into a tight reality, buffering myself from the pain of rejection and ridicule.

And yes, it was a disability. How else can one describe it? The supreme faculty of the human being, the ability to speak, was stunted in me. No speech therapy ever helped me. All speech therapists somehow made me feel like it was my fault that I couldn’t improve my speech. Every setback reinforced the sense of failure and wanting in me. I hid it all with insouciant bravado; but I knew that I was missing out on the fullness of life, trapped behind this speechless scrim.

In 2003 I found Dr. Gerald Maguire, who was experimenting with the medical treatment of stuttering. By this point I was desperate. I hated my career, such as it was. I wanted to do something different. But this malady was the anchor around my neck.

Upon beginning therapy with him, I noticed an almost immediate improvement. And 12 years later I’m still on the drug therapy. And, I read stories to children every week, something I could never have imagined before. I know that I’m blessed.

Too many of my fellow sufferers are still mired in their disability. And all I can say is to have hope. You are not your stutter. You are yourself, wonderful, special, a child of God. I responded well to the drugs. You might as well. Or you might have another path. But don’t surrender. You are not your malady, but surpass it. Take it from someone who has been in the darkness, and has seen a bit of light.

If you are alive, you are a hero. Remember that, for it’s what makes us human.

 

One thought on “On my curious malady

  1. I’m so glad you found something that helped, and encourage others to seek out ways that might help them.

    When I was around nine I had Encephalitis from a case of Chicken Pox. I remember not being able to talk right. I was terrified. My mother saw that was something wrong. I was having a seizure. I was in the hospital for a week, but I had to stay home from school for the rest of the year. I had to go to speech therapy for a while, because I still had trouble pronouncing some sounds. I can imagine how frustrating it was to not being able to get the words out.

    Like

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