History

In 1978, when I was 8 years old, I was in a car crash. Back then, seatbelts were often not worn. I was riding in the back of a station wagon and was not wearing a seatbelt. We were in rural Wisconsin and we slowed down for a stop sign. The drunk driver behind us didn't slow down. I flew out of the car and must have landed on my back, probably on the road. Athough I have absolutely no recollection of the crash or of anything that happened until the next day, the paramedic reports say that I was conscious and walking. It is my understanding that the next day I was in the hospital still and I told the nurse that my legs felt funny. She told the doctor and the doctor just sort of blew me off. I can imagine him patting me on the head and saying, "You are just an 8 year old kid who has been through a major trauma (two of my friends were killed in the crash) and there is nothing wrong with your legs". I guess later that day I couldn't move or feel my legs. That is when they transferred me from the hospital in the small town to a big city hospital 1.5 hours away. The doctor at the new hospital did exploratory surgery and found out that I had broken my spine at T4/5. The broken bones caused swelling and the swelling crushed my spinal cord. Again, this is just my understanding of what happened. I don't remember it. It's just the bits and pieces I've collected over the years.

I do know that I am a T4/5 complete paraplegic. I do know that no matter how hard I try, it is impossible for me to stand, wiggle my toes, or feel it if you pinch my leg or tickle my feet. I guess you could say that my legs aren't totally dead though. They kind of have a mind of their own at times. I remember an unfortunate kicking incident from long ago. I was in high school. My boyfriend was sitting on a step and I was sitting in my chair facing him. He was "tickling" my foot when I had a spasm. My leg shot out and I got him right where no guy wants to be kicked. It was horrifying and hilarious at the same time. 20+ years later and I still laugh about it. I don't know if he shares the same feelings.

I've been sitting for 31 years now. I use a wheelchair to get around. For the first 29 years, I used a manual chair. 2 years ago I got lucky and purchased a slighty used and greatly reduced in price iBOT...
Click here to go to WheelchairRevolution. I continue to use my manual chair around the house, but usually use the BOT outside of home. It makes life much easier and better. Unfortunatly, only about 1,000 people are using this life changing wheelchair, and production of the IBOT stopped last December due to low sales. The low sales are not because it's a bad product. The low sales are because they couldn't sell enough because Medicare says it's a "luxury" and most insurance companies follow Medicare's guidelines. That means most insurance companies wouldn't cover any part of the cost, and not many people have an extra $26,000 laying around. I do not know how much longer my iBOT will live, but I fear my future without it. I'm hoping that something even better will come out in the near future, but I can't think of any companies who would want to take on a huge money losing endeaver. There are some people working to get Medicare to change their guidelines... Click here to go to Alan Brown Foundation. If they are successful, the iBOT may go back into production.

In 1983, my doctor decided that due to a lack of muscles to support my spine, my spine was curving too much and surgery needed to be done. In the summer between 7th and 8th grade, I had surgery to put Harrington rods in. It was a pretty major surgery. I don't remember a whole lot of it, but I think I was in the hospital for 2 or 3 weeks. For the next year I had to wear the most awful brace. Being 13 was hard. Being 13 and in a wheelchair was harder. Being 13, in a wheelchair, and having a brace like that was hell. It was definitely the worst year of my life. My brace looked something like this:

Click here for a photo of the brace similar to the one I had to wear.
Click here for a drawing of someone wearing a brace.

Up until very recently, I thought I was done with back surgeries. The rods were supposed to last a lifetime. About 10 months ago I started hearing cracking and popping in my back. I tried to ignore it at first because usually ignoring things like that makes it go away, right? Right! I talked to my doc about it briefly and she wasn't concerned. Over the past few months, it's been getting worse and worse. If you are next to me and I move, you can hear me cracking. About a month ago I told my doctor about it again. She said I should get an x-ray just to make sure everything was okay. The next day my doctor called and said that the radiologist read my x-ray and said that I have a break in my rods which has caused vertebrae slippage and that he was concerned my spine is unstable.

I saw an orthopedic surgeon last week. He looked at my CT scan and said that it was beyond what he felt comfortable dealing with. He referred me to the doctor he studied under. He also told me that I would most likely need to have surgery to fix the broken rods because if I didn't, I risked further slippage which could result in puncturing my aorta.

Today I saw the doctor that I was referred to. He isn't sure at this point if I will need surgery. He said it is possible that we can monitor it every six months or so. He told me to get an MRI so he can get a better look at what is going on. I see him again in two weeks. I think surgery is inevitable. I'd like to just do it now and get it over with. I hate being constantly worried about it, the cracking and popping is annoying, and the pain is getting worse. He said I'll probably be in the hospital for about a week, they probably won't have to open up my entire back like before, and I won't have to wear a brace after the surgery.