Misconceptions & Staring Problems

It’s no big lie that most of us are naive to people with disabilities. I know that I certainly was no exception. There are a lot of misconceptions regarding paralysis. Granted I can only attest for my own personal experiences and from the experiences of a few others that I have met. Here is my crash course in what I have noticed and experienced. 

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If I saw someone in a wheelchair prior to my injury, I would always tell myself not to stare and I would take some uncomfortable side glances instead. Believe me, we notice and you would probably be better off staring that way I won’t feel bad for calling you out on it 🤷‍♂️. Early on in my injury it used to infuriate me when I would catch someone looking at me. I would always say that ‘everyone sees the wheelchair first and me second’. If I caught someone staring, I would yell and try to pick a fight. It must have been quite the sight because I had no voice and could only move my head 🤦‍♂️. One of my first outings from the hospital was a trip down the road to a Dunkin’ Donuts. There was an older couple sitting down eating while I waited in line. I could feel them staring through me and as I turned to the man to pick a fight that I would have lost, he asked “where did you get your tattoos done ?”. They had been sitting there talking about how awesome my half sleeve was...and I was too uncomfortable with myself to realize that they didn’t give a rat’s turd that I was in a wheelchair. Obviously, staring in general is rude but I have come to terms with the fact that seeing my wheelchair isn’t the norm. Not because I am paralyzed but because I have decked it out in flame decals and military stickers. Why would I want to be normal anyway? Stare all you want. 

One of the biggest misconceptions is that I can’t feel anything. I still have feelings, you know? 😭. Just kidding...I’m dead inside (also a joke). All joking aside I do have feeling, some good and some bad. I won’t get into crazy detail about which nerves do what but in general, I am numb from my lower chest - down. That’s right, I am impervious to nipple cripplers and titty twisters (hey look another silver lining). I am also numb from my arm pit down to my pinky finger but this feels more like novocaine in the sense that I can feel pressure but not sensation. How does that song by ‘Three Days Grace’ go again? “I’d rather feel pain than nothing at all”, right? Well nerve pain is quite possibly the worst thing that I have ever felt. My hands feel like they are constantly being lit on fire while simultaneously being frozen. The only analogy that I can attempt is to how I would imagine being killed by that ‘White-Walker dragon’ from ‘Game of Thrones’ would feel. I also get shocks of what feels like cold lightning through my knees into my feet. I get pins and needles in my feet and bum ‘if’ I think about them and try to make a movement. As constant as these are and as much as these hurt, these are good signs to me. I started out feeling nothing and who knows, maybe these misfiring nerve impulses will lead to a controlled movement? Fingers crossed. If something stimulates a part of my body that I cannot feel, I get what is called Autonomic Dysreflexia. Please google this if you’re curious because describing it would take forever but essentially I get the goosebumps and the chills which tells me something is going on where I cannot feel.

This leads into my next misconception. I can’t move anything. That’s what paralysis is right? Well if you ask anyone that has had to fix my foot when it tries to jump off of my wheelchair then you will probably hear a different story. Spasms are incredibly common with spinal injuries and different people have different levels of severity with their spasms. Truthfully mine aren’t bad at all considering how high my level of injury is. A muscle spasm is essentially caused when something stimulates a paralyzed muscle and the signals can’t reach the brain properly (nerve signals are carried up the spine for those who didn’t know). It is basically a muscle freak out and they do actually have a lot of benefits. I won’t get into all of them but my point is that I’m still moving. So if you see my leg kick when I am around you, just know that your presence didn’t cure my paralysis. Something is probably just pissing off my body. On a side note, I am sorry if I have ever kicked you... I can honestly say that it wasn’t my fault. 

My final misconception is that therapy and working out is a cure all. The most common topic that comes up during small talk is therapy. Everyone always asks me how therapy is going and how my recovery is going. Truthfully, formal therapy from my team of Physical Therapists and Occupational Therapists ended almost 6 months ago. My new therapy has been at home for the most part. Easy things are now my workouts. Simply standing in a Standing Frame is a workout for me. I pedal an arm and leg bike that uses electric stimulation through pads to flex my muscles in a certain order so I can pedal. My FES Bike is pretty awesome and it helps me continue with therapy on my own. Working out is obviously a good thing for my health, both physical and mental, but it doesn’t mean that I will be walking around because of it (although I don’t doubt that it will help). There are a lot of clinical trials and a lot of research regarding spinal cord injuries, so I have high hopes that I will be walking eventually, but as of yet there are no cures for SCI. I have accepted that and I continue to pray for miracles and for breakthrough advances in the research. I could use more prayers if you are looking for something to pray about! 

I hope that this post wasn’t too dry and I hope that it educated just a little bit. A good take away from this is that you never really know what someone is going through. There is so much more to my injury and I will definitely elaborate in due time but my goal was to hit on the big three misconceptions that I have noticed. I hope that it helps you all understand me just a bit better!

God Bless!