I'm Already Here

by: PerfectStormer

Sat Nov 01, 2008 at 10:57:03 AM EDT

But you know something? I'm already here.

"It's a boy!"

But there was a problem. The baby (me) had severe birth defects. Spina bifida results when the neural tube surrounding the spinal cord fails to close completely, resulting in exposed nerves and varying degrees of nerve damage. In the early 80s, most kids with spina bifida didn't stand a chance. Those that survived are confined to wheelchairs. Spina bifida is often accompanied by moderate-to-severe hydrocephalus, which can result in mental retardation. In a lot of ways, a baby with spina bifida born in 1982 was a lost cause.

Immediately after I was born I was transferred from Hackley to Butterworth Hospital in Grand Rapids. I was left in the capable hands of Dr. Vicente Gracias and Dr. Brian Roelof, my saviors. It's fitting that Dr. Gracias's last name is Spanish for "thank you," as everything I have in my life is thanks to him. I was rushed into surgery, and Dr. Gracias did what he could to put me back together. Dr. Roelof tinkered around and did what he could to make sense of my bizarre urinary tract.

The next two years were a slog for my parents. The thought of having another child never crossed their minds. Would I ever lead any sort of productive life, or would I be essentially a human house plant? At two years old, a miracle happened: I walked. They took me to my next appointment with Dr. Gracias, and I went into his office and walked. Dr. Gracias was stunned. I still see Dr. Roelof once a year, and he's always amazed at everything I've been through and how successful I've been. He's in his late 50s or early 60s now, and at some point he's going to retire, which is going to crush me. We've been through everything together.

In a lot of ways I was a miracle baby. But life hasn't been easy. I can't walk more than about 200-300 feet without wanting to fall over and die, and as a consequence I'm significantly overweight. I have braces on my legs and a shunt in my head. I have scars all over my body. I have special relationships with my doctors because I see them all the time. Without insurance my medical bills would be the end of me.

But it's more than that. It's knowing that I can't go to events at large public places (like political rallies) because I can't physically do it. It's knowing that when I walk in a room, they see a man with a cane, not a man with a brain and a heart and so much to offer. It's knowing that I'll never see Rome or Paris or Istanbul because I can't physically do it. It's having waitresses ignore me because they assume I'm not capable of ordering for myself. Meeting someone who will fall in love with me? Forget it...it's not in the cards for me. It's having assholes park in the handicapped spots because "they're just running in to grab something" while I park in the hinterlands. It's being a hermit from November-March because I simply can't walk on ice. It's beating my head against the wall because interior designers don't understand that for people like me, terrazzo and hardwood floors are death traps. It's having to admit defeat and ask for a wheelchair in an airport. It's life...but it's missing out on real life.

Yes, I was a miracle baby. But I'm tired of being a miracle baby. It's too hard. Stem cell research carries possibilities for cures for all the miracle babies out there. When you vote on Proposal 2 next week, do it for the babies--the miracle babies, because we're already here.