Mistakes were made

Posted by Kristin Beale in Life After Paralysis on December 30, 2019 # Mobility, Lifestyle

There’s nothing innate about disability -- it requires a complete rerouting of our habits, lifestyle, and interactions with people. In my case, I lived 14 years as an able-bodied kid before I was in an accident that left me paralyzed and in a wheelchair. As a high school freshman, I was forced to erase 14 years’ worth of livelihood at the same time my peers were learning new skills for a new chapter in their lives: high school.

I had to relearn expected skills like how to sit in my wheelchair for hours at a time and roll through the grass, yes, but I also had to learn how to pop wheelies, assimilate into social crowds by seeming as “normal” as I could pull off, and improvise accessibility in an inaccessible world. Living with a disability brings on an excess of unforeseen complications to tackle on a daily basis and, if you want to be successful, you’ve gotta stay pliable.

That being said, I’m a human and I make mistakes. But there are some mistakes, several that I still make, that are sillier and more detrimental than others.

The first on my list of “duh” mistakes is using my lap as a hot plate. In fact, I’m the proud owner of a plate-shaped scar on my thigh from a burger I heated up in the microwave last month. I’ve learned this lesson over and over and, for whatever reason, I continue to disregard it: just because the plate doesn’t feel hot on my hand, doesn’t mean it won’t do damage to the skin on my lap.

Due to the nature of my paralysis, my brain signals don’t fire and reflect in the way they do on an able-bodied person. For me, that looks like: spasms in my hips when my bladder is full, spasms in my legs when my body is in pain, tingles in my abdomen when I’m too cold, and discomfort in my butt when I need to relieve pressure. I realize how fortunate I am to have a body that has found ways to communicate with me, but sometimes I ignore its messages in the same way I would ignore a sibling getting on my nerves. The consequence of my neglect is: bladder infections from not emptying, delayed care for wounds and injury, loss of color in ice-cold limbs, and pressure sores -- lots of pressure sores.

It took many years to learn the language of my disability and I know I shouldn’t ever dismiss the messages my body sends to me. To be honest, it’s hard to care all the time and sometimes it’s inconvenient to stop what I’m doing and listen to my body’s ambiguity. But I have to. That’s the first condition on the Disability Contract I was forced into signing so many years ago.

The internal messages my body sends are the trickiest ones to pay attention to. In my defense, they’re more inconspicuous by nature, so they’re easier to ignore. In my offense, paying attention should be second nature by now.

Drinking water, for example, has always been a struggle for me. At some point I got it in my head that “I only need to drink water when I’m thirsty.” No surprise to anyone, that confidence led me to countless infections and, eventually, cost me my right kidney. My monthly visits to the urologist generated into a fairly close friendship with my doctor, but we’re still not friendly enough to make it worth it. Lesson learned, the hard way.

Normal people have the subconscious instinct to move around, unweight, and readjust when pressure is applied to the skin for extended periods of time, therefore evading skin breakdown and wound development. My body, with its distorted brain signals and perpetual ambiguity, is not privileged to those subconscious messages. I have to be one step ahead of this issue at all times by constantly moving around, unweighting my body for a pressure relief, and getting out of my chair as often as possible. I have the fortune of being able to feel pressure, translated into uncomfortable tingling when I’m sitting still for too long, but I sometimes treat it like that same annoying sibling.

Kristin BealeEating enough protein is the last thing on the top of my [kinda long] list of Unlearned Lessons, and that’s nothing new. In middle school, I went to a John Mayer concert in Virginia Beach, Va. In the amphitheater while we waited for the concert to start, a representative from PETA talked to my friend and I about the adorable cows, showed us gory pictures of “the same cows” being butchered, and gave me a pen to sign my name away to the PETA movement. For a solid six days after that concert, please believe I was a vegetarian; I ate a few vegetables, many spoonfuls of peanut butter, and maybe two servings of black beans to replace meat portions. Whether it was my mother’s insistence or my own self-awareness (likely the former), I retired my membership to PETA. I’m simply not responsible enough about eating protein, especially while avoiding meat.

While I do seek out and eat meat now, not much has changed with regard to that deficiency in my diet. I’m better about following a balanced diet because I know to make a conscious effort and there’s more at stake now, but it’s a battle I haven’t figured out how to comfortably stay out of. Especially with my lifestyle that welcomes open wounds and skin breakdown, eating enough protein is paramount.

On a sillier note, I still make the mistake of getting in the shower with my socks or underwear on. For my particular disability, I don’t have feeling below my T8 vertebrae, or mid-torso, so I can’t feel temperature below my level. More specifically, I can’t feel the difference between clothed and naked.

Not once, but many times, I’ve transferred into my shower, turned on the water, and not noticed until minutes pass that I’m still wearing my socks, underwear, or an equally not-suited-for-shower article. Socks are most common, but underwear isn’t far behind. The moral of that story is: slow down and look down.

Disability has a learning curve for everyone. I’ve been in this for more than a decade and I’m still not above making those mistakes, in this case over and over. Some people ride that curve to figure out accessibility in their house, some use it to assimilate into social crowds, and some, like me, are trying to remember to take their underwear off.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.