Monday, January 4, 2010

Disabled writer says, although others wrongly feel sorry for him, he's had a lucky life

Ben Mattlin (pictured) on NPR. He blogs here.


For me, this new year is as much about looking back as looking ahead.

I turned 47 in the past year. That in itself is miraculous. I was born with a neurological nuisance called spinal muscular atrophy. It gradually, relentlessly weakens muscles.

In my case, the weakening began at 6 months. About half of the babies with symptoms of SMA die before age 2. Their hearts and lungs become too weak to go on.

I was one of the lucky ones.

I've used a wheelchair my whole life. I no longer have the strength to hold a pencil. Am I still one of the lucky ones?

I believe I am. So, why do so many people feel sorry for me?

2009 wasn't anything special. The usual assortment of good and bad. But it was blessedly drama-free. And that was enough to make it a good year.

They don't know me, of course. They don't know that I grew up in a great family, graduated from Harvard, get my writing published, got married and fathered two terrific little girls. There are a lot of reasons why I consider myself lucky.

Still, people have said to me, "If I were like you, I'd kill myself."

This is supposed to be a compliment, I think. They mean to commend my perseverance. So how come I want to say back, "If I were like you, I'd want to kill myself, too!"

Yes, there are some people in terrible circumstances, with painful illnesses, who do want to die. But there are also many, many people living in conditions I don't envy — famine, war, abject poverty. People whose lives I wouldn't trade for my own. And they retain a stubborn sense of hope and struggle on.

It happens every day. Nothing all that extraordinary.

Don't get me wrong. I don't see myself as a modern-day Tiny Tim, cheering everybody up. No, thank you. I reject holding myself up as a triumph of the human spirit.

At home, I grouse and kvetch all the time. It runs in the family.

Plus, life is rough. Like two years ago. I spent most of 2008 in a hospital bed. An infection required emergency surgery. Then something went wrong under the knife. I nearly died.

But here I am to tell the tale. So yes, I do feel lucky. 2009 wasn't anything special. The usual assortment of good and bad. But it was blessedly drama-free. And that was enough to make it a good year.

Sure, I hope for better in the new year.

But even if I don't get that, I'll still say I'm lucky. Because sometimes, just normal is good enough.