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Home / Features / SCI Questions and Answers / What is it like?

What is it like?

Written by Sean on Friday, June 20, 1997

Well! It’s frustrating, painful and degrading sometimes, most of the time it’s ok and some of the time it’s great.

I thought about your question today and I realized that after 12 years I had a problem relating my current situation to “normal” What do paralyzed legs feel like? Well you would think the answer is “They don’t!” but they are still attached so I do have to have some kind of relationship with them!

Have you ever woken in the night to find that your arm has totally gone to sleep and fells like someone else’s? You know the kind of thing you wonder who’s hand is on your face and it turns out to be yours? That is sort of like the way they feel. Other time they feel as if they’re burning or there is sand running down them. One of the hardest things to explain is how you don’t know where your own legs are until you look at them. You loose the sense of where your limbs are in space (this our true “sixth sense” and is called propioception) you get no feedback from your joints to tell you whether your knee is bent or straight etc. Also (although I assume you know this) any sexual pleasure you got from “pretending” you cannot get from the real thing :( (But more on the sex thing later)

Managing paraplegia is a hassle though.

My usual day begins about one and a half to two hours before I go to work. I wake up and take two painkillers and catheterize whilst still on the bed. Every second day I also insert two glycerin suppositories. I wait about 15 /20 minutes, if I’m lucky my wife will bring me tea. I transfer to my chair still naked and wheel to the bathroom. I transfer to the toilet and hope my bowels open as planned (not before !) Usually I need to check I’m clear using a gloved and lubricated finger. I transfer back to my chair and then transfer into the shower I can manage everything in the shower except my lower legs. Trying to handle a wet leg is like nailing Jell-O to the ceiling.

Transfer back to the chair (That’s six transfers so far) and then back onto the bed.

I dry off on the bed and dress this takes 20 minutes or so, much longer if I wear my braces. If I wear my braces then some times my wife helps, to save time. Once dressed I transfer back to the chair and leave for work. Transfer into the car, stow the chairs and drive to work. Transfer from car to chair and that’s me (I make that ten transfers).

My job requires me to drive a lot and visit lots of different clients each visit requires Getting the chair out transferring and vice versa. I need to cath about every 4 hours I try and find a washroom but often I just pull the car into a rest area and do it there.

The end of the day is pretty much the same. You can’t rush any of it or you will have problems. When things are going well I feel confident and happy as I now am. When things are not so good it is very frustrating.