What does it feel like not to feel?
I was speaking to a group of high school teens at a Catholic retreat when a shorthaired, freckle-faced student raised his hand to ask me one of the most difficult questions I’ve ever been asked since becoming a quadriplegic in 1998 while doing a stunt show at Sea World.
“What does it feel like not to feel?”
Up until that very moment, I had never really thought about how to describe what it’s like to not feel parts of your own body. So I had to really sit back and think about the feelings that come with NOT feeling, and even then, it's difficult to respond because being paralzyed is super-complex. So I said something vague like: “That’s a good question. There’s burning in my legs and lots of other sensations, but none that I could really describe right now.”
Since that moment, I’ve spent a fair bit of time thinking about what being paralyzed feels like. And I’m going to try to spell it out for those that are curious.
There’s burning and sometimes tingling in my legs. In the first few weeks of being in the hospital, I remember my legs burning profusely. I don’t know if that feeling ever went away or I just adapted to a new normal, because eventually I just stopped thinking about it. But every now and again, the burn returns and I’m stuck obsessing about it all day, all the while wondering what that sensation means. Some days are more annoying than others, and it feels like an itch you can’t scratch. Think of the first few seconds when you move your arm or leg after it’s fallen asleep - it’s that feeling, magnified times infinity.
My body feels heavy. As an able-bodied person I was weight conscious but never did I feel as heavy as I do now (and ironically I’m forty pounds lighter than I was pre-injury, weighing in at a whopping 105 pounds). When I'm lying in bed or at the end of a long day, my body feels bogged down, like there's an iron curtain lying upon me holding me back - it’s called gravity.
I can still feel some things. Every Spinal Cord Injury (SCI) is different. In my case, I have perfect sensation to about my nipples and then it gets a little tricky: The outsides of my arms and hands have imperfect sensation. For example, I can only feel temperature in my thumbs, so I have to ask my husband and friends when food, mugs, or water is too hot because I won’t know. (I've blistered my hands unknowingly too many times to count.) From my thumb moving outward toward my pinky, the sensation lessens. I pretty much can’t feel my pinky finger at all and must constantly watch it to make sure it’s not bending in ways it shouldn’t.
If you touched my stomach or kicked my leg I can tell by pressure, not skin-to-skin touch and mentally, it can be disturbing. I can watch a needle go into my leg and not feel a thing, yet if you grabbed my leg and squeezed, the change of blood flow would let me know which leg you touched. There are spots on the bottom of my feet that I can feel fairly well, and yet, I’ve watched my toe nail rip off, blood spurting everywhere, and stared in horror as I didn’t feel anything at all. The human body is so complex when it comes to nerves. Sometimes I think it’s a good thing not to feel some of my body parts because I’d probably be in a lot more pain thanks to the aches and pains that stem from not moving.
I'm prone to muscle spasms. My fingers and toes twitch, my legs occasionally bounce up and down like someone who is nervous, my lower back will suddenly throw me backwards and it will appear as if I’m flailing around. These are all involuntary movements and most SCIs take medicine to stop these movements because they can be painful. Mostly they’re just pesky, though. I take one muscle relaxer a day because my spasms aren't bad or bothersome, and I like to think that the movement, while jarring, is still some form of exercise. Other people have to be heavily medicated (and nearly sedated) to prevent them from being thrown out of their own wheelchair by their own non-cooperative body. And then there's the dry mouth that comes from taking the meds. It's awful.
Pressure sores are the WORST. In my 15 years of being paralyzed, I’ve had one pressure sore that was on my bum that was about the size of your fingernail. It took a very long 8 months of bedrest for my skin to heal completely. Now, even though it’s been five years, the scar tissue and skin is uber-sensitive and sometimes very uncomfortable. I’m also obsessively paranoid that I might scratch, tear or bruise that part of my body again because once skin breaks down it's prone to do so again and again. So all day I move and adjust - I probably come across antsy to those who aren't familiar - to make sure I'm not sitting in the same position too long. I'm also annoyingly careful and direct when being transferred from my wheelchair to bed or any other surface area. I'll do anything it takes not to have to be in bed rest, because then being disabled feels like torture.
There's this little thing called Dyserfelxia. Even though my body is technically broken, it tries to communicate when things go wrong. Dyserflexia is when the nerves race up and down your spinal cord in attempt to communicate to your brain that an issue needs attention (could be bladder, bowel, even an ingrown toe nail). Since the message can't make it past the level of injury and to the brain, it gets sent back down the spinal cord, only to get sent back up, and then down again, until eventually your blood pressure rises to dangerous levels. The symptoms of Dyserfelxia are as follows: a strange unexplainable eeriness (call it intuition), goosebumps visible on the arms and face, lots of uncomfortable pressure and muscle spasms, clamminess and sweating, an incredibly painful headache and, if untreated, a stroke. I’ve come dangerously close to having a stroke before due to a bladder issue, and I imagine it’s the feeling right before death. It’s incredibly painful and causes complete desperation. In regards to being paralyzed, having dyserflexia is the scariest moment because your life is literally in someone else’s hands (if you're like me and have hands that don't work) and it’s just a matter of problem solving - trying to define the issue and then resolve it before one comes close to having a stroke. With that being said, having Dyserflexia is also an amazing thing because it’s how your body tells you that something's wrong, even when it’s not supposed to be able to do so. So yeah, double-edged sword.
And then, there's all the emotions. In any given day, I can feel embarrassed, empowered, violated, patronized, frustrated, happy, sad, overwhelmed, helpful, helpless, belittled, strong, fearless, fearful, burdened and satisfied. Sometimes the emotions are directly related to wheelchair stuff, but most of the time they're not - they're the result of living the daily grind. All people - abled-body and otherwise - can relate to this.
DISCLAIMER: It should be noted that every spinal cord injury (SCI) is different and thus each experience is different. These thoughts are my personal testament and should not be mistaken for what exactly the paralyzed community feels as a whole.