Some of you may have read this post before – a few years ago I posted it on my Facebook but I figured it was relevant and a good way to start this blog.
Before my accident I’d obviously seen people in wheelchairs, but never knew what all it entailed. I always thought paralysis meant you couldn’t move your legs and that was it. Little did I know, speaking solely about my spinal cord injury (SCI), you can’t use your fingers, hands, or core either – just for me to sit up straight in my chair is a workout.
The thought of people not having any sensation in their bodies, but for some having terrible neuropathic pain was unknown to me. It’s shitty losing all sensation, but at the same time feeling like somebody is rubbing sandpaper on your skin, like you’re being stabbed by a million needles; once I heard somebody describe it like “you’re a frozen steak being thrown on the grill,” and I personally couldn’t put it in a more perfect way…and this pain is 24/7. For many this pain is so inhibiting they are unable to even get out of bed and on with their day. I have found that staying active and busy is a great distraction from my nerve pain, which works well for me since I’m on the go a lot and love having a packed schedule.
I had no idea it meant losing the function of your bladder and bowels. Let me tell you, having to wear a bag on my stomach to collect my pee is a pain – plus if I don’t empty it often enough (which I don’t) it gets too full and then I look fat… not flattering. And if that’s not enough to deal with, my bladder randomly spasms and I pee my pants. One time I peed ALL over a restaurant floor … actually that happened twice. The waitress looked appalled when I told her I peed all over the ground and she might want to grab a mop. It’s a good thing I don’t get embarrassed.
Then there’s my morning routine … I need help with my shower, my hair, getting dressed and thank God I relearned how to do my makeup – although, I have to give props to my mom, she had gotten quite good at it. I never thought at the age of 23 I would need the same help as a 2 year old. I didn’t want my mom being THAT involved in my life. I do have to say thanks to her though, she’s amazing, the absolute best, and I have no idea how she puts up with me sometimes.
I also need help getting in/out of bed, on/off furniture, and in/out of the car. Hopefully, fingers crossed, I’ll master transfers on my own soon and won’t need help getting in and out of my chair anymore. I’ve been working my butt off to be able to do it on my own and think I’ve almost got it down! This will be such a big accomplishment for me and give me so much of my independence back.
One of my least favorite things I have to deal with is the fact that I can no longer regulate my temperature. Since I live in cold, rainy Washington I’m almost always shivering, curled up in bed with hot blankets, a heating pad, layers of clothes, and hot water. This is why one day I’ll be living somewhere sunny and warm; plus, if you know me at all, you know I love sun tanning. But nowhere too hot because then the opposite will occur and I’ll overheat. Since I no longer sweat, my body has no way of cooling itself down and I’ll begin to turn splotchy red – a few summers ago in Miami my stomach turned purple, and I’m not being dramatic, it actually turned purple! To says the least, you’ll most likely see me out with a heating pack and hot water or on that rare, hot, sunny Seattle day l’ll have my water mister right by my side.
There is much more I deal with on a day to day basis. I have to worry about my circulation; my blood pressure runs low; my muscles are atrophying; my bone density is decreasing (I already have osteoporosis); pressure sores (this is what killed Christopher Reeves … Superman) from me not shifting my weight around. And this doesn’t even begin to touch what’s all involved with a spinal cord injury.
It might sound like I’m complaining and have a miserable life. That’s not the case at all. Life is just different for me now. I love my life. I’m the happiest I’ve been in quite some time if not ever – my family, friends, and boyfriend make up the greatest support team. I simply wanted to remind people you have no idea the life people are living, the things they’re dealing with, the struggles, challenges, and battles they’re fighting. Be more thoughtful, be more kind, be more caring. I have to remind myself of these things daily.
