I received this private message that got me thinking about what to write next.
“I hope for once, someone might be addressing the different ways people with paralysis are affected. I know, from my own perception before sci, I had no idea there were complete or incomplete injuries. No idea how painful sci could be and how many health issues (ex: AD, Hypotension, B&B problems, pressure sores) people with sci have to deal with. I thought, you couldn’t feel anything or move, period.” T.M. walking quad
Spinal cord injury has no barriers. It can select anyone, at any time and without warning. Suddenly, you find yourself a member of a club that you never expected to belong to nor wanted to join. Your life changes as does your family’s lives. For many in the “SCI Club” the only thing we have in common is our SCI or our connection to paralysis thru a family member. My paralysis does not define me yet it is a part of me. It is also how some folks choose to identify me.
Spinal cord injury is so much more than just using a wheelchair or not being able to walk or feel. The sensory and motor issues are just the tip of the iceberg. There are so many issues: the pain, bowel, bladder, pressure sores, and spasticity. Add autonomic dysreflexia, sexual issues and blood pressure dysfunction and spinal cord injury becomes so much more than not being able to walk. For me, if it was only about walking then my days would be easier.
No mans land---that is how I often describe being an incomplete walking quad. I am not able-bodied nor do I fit into the mold of a wheelchair user. When John Q Public thinks of spinal cord injury, they often think someone has zero motor or sensory below the level of injury. Complete SCIs often view walking quads and paras as having motor and sensory, just a step away from being able-bodied. In reality all SCIs are like snowflakes---no two are the same.
I never would have imagined 20 years ago, that someone with a spinal cord injury could feel. Even more surprising was the realization that what I felt, was often heightened and distorted compared to my pre-SCI days. One of my most vivid memories of my early days was the fact I did not have a clue that I had feet and legs, yet they screamed at me in fiery pain. Once, I took a stick and pounded on my numb foot, trying to see if I could feel the rhythmic hits. My feet refused to “talk to me” yet the burning, fire and itching sensations that plagued my legs stayed. Strange I thought, I have one type of sensation but not a clue that my lower extremities existed. Even more shocking was the discovery of the bruises that covered my feet. As I put my socks on several days later, I wondered where the deep purple and black and blue marks came from. When I realized it was from the stick, I was perplexed and left wondering, “It didn’t hurt, how can I be bruised?” Boy was I ever naïve but, then again I had no one to explain to me the ins and outs of my injury.
As I struggled to understand the changes in my body, my family struggled even more. When I would talk about the intense pain, they would reply, “You can’t feel, how can you possibly have pain?” I didn’t have an answer that made sense to them, so I learned to be silent. It was much easier than trying to explain something that even I did not fully comprehend. I grew weary of the perplexed looks and began to avoid conversations that involved anything about my SCI. I didn’t know anyone else with a spinal cord injury so my silent journey began.
I slowly started to get some motor function back, and found that others thought I was no longer paralyzed. In graduate school I used a power wheelchair to navigate the broad expanse of my California campus. The power wheelchair was provided by disabled students services because I could not self propel the hills and make it between classes in my manual wheelchair. My classmates became accustomed to me in a “power wheelchair” and accepted me as a person with a disability. One semester I arrived at a new classroom and had to use my crutches to get thru an inaccessible door. Suddenly I was viewed as “healed” by my fellow students. Any time after this event, if I used the power wheelchair to navigate the huge campus, my classmates asked why I had “given up.”
I was 5 years post injury when I first met another walking para. Diane was only 2 years post injury and neither of us had ever met another “walker”. We both had tons of questions so we talked and talked and talked. The relief of knowing I was not alone was both overwhelming and comforting. The feeling of being “different and isolated” disappeared when Diane and I talked. We knew the other understood without much explanation being needed. Even after I moved to another state, Diane and I continued our support of one another. The distance didn’t matter, just knowing we had a friend to listen and understand was all we cared about. It was my friendship and bond with Diane that started me on the road of Peer to Peer support.
Spinal cord injury and paralysis can be isolating and lonely but it doesn’t have to be. It doesn’t matter if you are a walker or a wheelchair user, there are others that “get it”. Same holds true for family and friends---there are others that understand. I challenge you to abandon your silent journey and to jump into the Reeve Community, ask questions, offer support, lend a shoulder. I am willing to wager that you will find yourself feeling less isolated and more engaged in life.
Please leave a comment about connections that you make here. Hopefully it will encourage others to do the same.