Defeating Scoliosis,
Living With Autism

Defeating Scoliosis, Living With Autism
By Wanda Brown

"I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!"
~ Dr. Seuss

Today is the worst day of my life. The top half of my spine is curving. The bottom half curves the other way. On an x-ray my spine looks like the letter S, only backwards.

© Copyright 2007 - Wanda Brown All Rights Reserved

What is Scoliosis?

Scoliosis is a progressive condition causing the spine to curve or twist into a "C" or "S" shape. There are many different types of scoliosis. Patients with scoliosis are usually asymptomatic. Scoliosis appears most often in adolescent girls and may run in families. 80-85% of scoliosis cases are diagnosed as idiopathic, meaning there is no underlying condition or cause for the spine deformity. Scoliosis does not result from carrying heavy items, athletic activity, sleeping/standing postures, or minor lower limb length discrepancies.Scoliosis is reported to affect two to three percent of school age children in the U.S. and costs an estimated several billion dollars in surgical treatment each year. National Institute of Health, Texas Scottish Rite Hospital for Children
Dr. Roye says my curves are getting worse each month. He says this disease is called scoliosis. My ribs are starting to slide towards the other side of my body. My right lung is now smaller than my left one. When I play basketball, I get tired and need to rest more. And I'm beginning to lean to the side when I sit, stand up or walk, so I look a little crooked.

I've thought about this all night. Scoliosis is evil! And it's destroying my life. When my mom, dad and I saw Dr. Roye to talk about my MRI test results and my bending films, he said "we don't know why your curve is progressing so rapidly." That's why my condition is called "idiopathic scoliosis."

I am autistic. A good thing about my autism is I like to know details about my special interests. Dr. Roye says my spine should be much straighter. Like the spine model in his office. Then he drops a bombshell on me. "Your curve is getting bigger, and is still progressing, which can become a problem in the long term. We need to stop the progression." He says he can do an operation called a "spinal fusion with instrumentation" to fix it.

Dr. Roye asks me if I have any questions. I can only think of one. I ask him "Will I live or die?" He looks me dead in the eye and says, "You're going to live, MJ." So I said, "Okay, you can do the operation." Mom and dad look relieved. I like Dr. Roye. He's cool.

But now that the day is here, I'm scared. And I'm angry! I know exactly what will happen to me. My mom asked to see how my spine might look after surgery. That's when Dr. Roye shows us the most horrible thing I've ever seen, an x-ray of a creepy looking spine. The spine was straighter. But there's a metal rod on both sides of it, attached by ten long screws that go through the boney parts. And each screw points in the opposite direction. What does Dr. Roye plan to turn me into -- a Frankenstein?

I don't want my back cut open below my neck to the top of my behind, like a can of sardines. And how will Dr. Roye get all those screws into my spine bones anyway? He will use a drill and a screwdriver, that's how!

The clock is moving fast, it's almost 6 o'clock. Mom and dad are ready to leave the hotel to bring me to the hospital. My sister Crystal is on vacation this week. She's still in bed -- sleeping like a baby! I really wish I were her right now.

We leave the building, cross a busy New York City street, walk into these wide revolving doors, and take an escalator up to the second floor. The man behind the desk is wearing a blue uniform. He gives my mom this small black gadget. Like the one you get sometimes at the Olive Garden while waiting for a table. Before we can get to those empty chairs in the corner, it vibrates and lights up. We both jump, startled by it, as we all head over to an empty registration booth.

The lady begins asking me lots of questions."What's your name, young man? Address? Date of birth?" I choose not to answer them. A good thing about my autism is I can talk when I want to, and won't talk when I don't! No, wait. I don't want to make these people here mad at me. So I say "I'm feeling a little nervous right now," and pull my hood up over my head to hide. My mom takes my hand and answers the questions for me.

Things are moving way too fast. Now I'm wearing a plastic bracelet with my name and Dr. Roye's name on it. Dad stands up, puts his hand on my shoulder and says "Okay, Buddy. It's time to change out of your street clothes and into a hospital gown." I know the deal. I went on the hospital tour, and watched the movie. Once I put on that hospital gown and shower cap, I am one step away from the knife!

When I get to the holding room, I look up and see Crystal is here. "What's up?" she says and stands beside me at the examining table. She's the closest thing I have to a big brother. We're both Leo's. I'm glad she's here. Only one family member can go with me inside the operating room until I'm put to sleep. I think I'll choose her to go in with me.

Oh, no! The operating room! I can't get these thoughts of surgeons wearing scary masks holding knives, drills and screwdrivers out of my head. Matt, my counselor at school, calls when I do this "perseverating." Sometimes certain words, phrases or my thoughts get stuck in my head like an old scratched record.

"I can't take it anymore Mommy! I can't stand hearing those loud drills. And using screwdrivers to turn those screws inside my spine has got to hurt! Ow... Ow!" She gets up from the chair, reaches into her bag, and hands me the self-portrait I asked my friend Joe to draw for me, "MJ Defeats Dr. Scoliosis." The drawing is inside a plastic sheet cover. I can hear my tears hit the page as they fall.

"MJ, going through this process and having surgery is the only way we know how to defeat scoliosis. I know you are scared. We are too. You will need to be brave and strong in order to fight this disease. I promise we won't leave you here alone. We'll be here day and night to help you get through this."

Staring at my picture a while, thinking about what my mom says makes me feel calm. I love my cartoon! I am kicking the evil Dr. Scoliosis' butt, with his crooked spine. He runs away in pain, defeated. And I am back to my normal self again.

© Copyright 2007 - Wanda Brown All Rights Reserved

Surgery is the only way to defeat my scoliosis. And the time is now. I'm ready for battle. I look down at my picture. "You might have me down right now. But I'm not out, man."

© Copyright 2007-2009 – Wanda Brown. All Rights Reserved

Article Continues... Part Two

Defeating Scoliosis, Living With Autism - Part 2

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