Coming out

The day-to-day trials of spinal cord injury are infinate and embarrassing. Most people with SCI never speak about those details except among ourselves. I have been one of them. In an effort to maintain what little is left of my dignity, I do not speak of these things publicly. And therein lies the rub. If we don't voice these indignities then we remain the "brave little angels" in the wheelchairs.

I may regret this later but I have decided to share those details in the hopes that a greater understanding of what we go through will help move others to act politically and finanically to help end paralysis. To that end, I share the following post from my spinal cord injury group. The days following this post are the closest I've come to suicide post-injury.

I have had a commitment on my calendar for about a month to go and speak at a local high school. Even though I’m still sick, I figure I can pull it together long enough to give a rousing speech. I love doing these events and I think I’m pretty good at them too.

I get there, still feeling a little weak but I know that adrenaline will carry me through the speech. I went to transfer from the drivers seat to my wheelchair and boffed the transfer and go down. I’m all crumpled up and stuck in the back of my van so I dial 911.

It’s not a total disaster yet, I’m partially bearing my weight with my arms but when they give, I’ll fall the rest of the way in this very odd position and break more bones. I get the most annoying dispatcher in the universe. I try to explain everything to her. I asked her to please call inside the school and get someone to come out and help me stay up. This is a huge high school.

Pretty soon the campus cop shows up and the principal and vice principal in a golf cart. They all sit there and look at me. I yell at them to come help me please, I’m falling, I’m breaking my legs, please just lift me under my arms and keep me from falling. “We’re not allowed to touch you.” I’m crying, I scream in frustration, pain, fear and rage.

Finally, EMS appears. They lift me into my driver’s seat and inspect me. Not too deformed. Do I want to go to the hospital? One of the guys says, “At the very least, we should check your colostomy.” I don’t have a colostomy. But, I did have an invol all over the back the van.

Total humiliation in front of 7 men. I say the principal. “I’m supposed to be your speaker today, I’m sorry this will have to be rescheduled.” So much for a professional encounter…

The EMS guys don’t want to let me go off myself. So they followed me home, went in the house and got my shower chair and lifted me into that and helped me into the house. I also missed my interview. I thought I had a job. I was going to show up so confident and together, instead I can’t go because I pooped my pants. I called my PCA and begged her to come back and help me clean up the van and such.

Don’t know yet what’s broken but I've reached a point in my bone density that every fall results in a fracture of something, if only a toe. I’ll wait until there’s enough swelling and bruising to pinpoint it. Otherwise I get x-rays from T-10 to my toes. Three times in the last year is enough radation for one body thank you. I have huge abrasions on my back and butt and hip that I have to watch until they heal and it looks like I have an apple sized bruise on my hip.

Why is it that once you’re down, everything piles on? My son still hasn’t bothered to call to see if I’m still alive. Right now, I want to go to sleep and just peacefully pass on. I’m tired of fighting. I’m tired of the everyday humiliations and I’m tired of hurting and being sick. I hate being alone. Right now I never want to leave my bed again.

Wasted an up-do on this day damn it! I’m going to park myself in a safe place and drink!