Wednesday, April 18, 2012
My top ten most annoying things about being paralyzed... that have nothing to do with walking:
1) never ending nerve pain- I feel as though I have been at battle, my whole lower body was blown up or nawed raw by a ferocious animal.
2) loss of bowel an bladder control- didn't I go through potty training to avoid these kinds of things? SUre...it's gotten more manageable but still.....Come Onnnnn. UGH.
3) loss of sexual function- though I keep being reminded that I can still bear children, and asked if I may be pregnant....I want to scream..."for real?! I'm so not even there! the idea is super challenging!...give me some time!"....geeeezzzz.....yea not exciting.
4) bumpy, crackly, uneven sidewalks or even better.... No sidewalks.... Sometimes I feel forgotten about and angry at the whole community for not thinking about how difficult this is. With every freakin bump, my feet fly off the foot plate and I have to pull them back in while trying to wheel. So. Annoying.
5) stores and restaurants without handicap access.... yea..like locating the bathroom up or downstairs or not having a ramp to get inside....also love when the curb doesn't have a cut out to get up on the sidewalk in front of a building....super fun. Coming down off curbs and wheeling full speed towards a curb to try jumping up? Terrifying.
6) people who ask me annoying questions like..."well, what the hell were you doing in a tree??" - if I had gotten in a car accident and suffered the same, would people be asking me what I was doing behind the wheel of a car? No. My answer is I was just living a moment of my life... And I happen to be in a tree at that moment.
7) kitchens- the sink, the cabinets, everything is so far away and having to adapt an entire kitchen means compromising with normal standing comfort and also takes muulahhh, moneyyy! I guess it doesn't help that I need assistance to get to the kitchen in my house since it's not on the ground level...
8) people who talk down to me- sometimes I struggle with feelings of inferiority and whether I am creating that feeling myself or actually being treated that way. I also struggle with whether I appreciate people who stoop down to talk to me eye to eye....the change of perspective has definitely altered my psyche.
9) Insurance companies, medical equipment companies, blah blah. I've spent hours and hours on the phone and going back and forth. Not my favorite. Super frustrating....though it's something I have gained a lot of empathy from....as well as developing my assertion. (did i say that right? hm..)
10) Loss of sensation. I feel more at a loss right now that I can't feel...more so than not walking. I want to know when my feet are on the floor....when a spider crawls up my ankle...when a child rests their hand on my knee or climbs on my lap...when the hot water touches my skin.... I miss feeling and this is a huge part of my grief. I cry more when I touch my own legs or look at my feet on the ground.
Yea....loss of movement and motor function sucks. Spinal Cord Injury is like losing a part of myself. I battle with what feels like a death sentence..."Your chances of recovery are slim" "You may never walk again"... I feel as though I've been told I'm half dead. It's incredibly strange, incredibly painful, and incredibly difficult in so many ways.
I wanted to write this blog because I am often found reading "top ten" lists that have to do with things that are healthy for you or things to avoid, so on and so forth. I figured, hey....lately life has presented many many challenges that make me pretty PO-ed!!! I find myself angry that people just don't understand...and I know that the truth is that they couldn't possibly understand....because they just don't know.
Well perhaps now you know a little bit more about life with SCI.....
From a Pissed Off Paraplegic =) hah. But seriously......