As newborns, one of the first things we fixate on and discover is our hands. Parents of newborns watch in amazement as their young baby stares and explores their hands and fingers for hours. How can something so simple hold such amazement and interest? Hands, are amazing in all they can do; zipper your pants and button your shirt, hold your lover’s hand, carry a bag, turn the page of a book, hold a steaming cup of hot coffee first thing in the morning, and nurture your garden. What happens when your hands betray you, no longer cooperating and doing what you need and want them to do, what then?
When I transitioned from a walking para to a walking quad I realized just how much I had taken my hands for granted. I have central cord syndrome, so even with significant recovery, my hands and fingers continue to betray me, something that I am reminded of on a daily basis. I have dealt with severe neuropathic pain in my arms, hands and fingers that often prevent me from even wearing a long sleeve shirt, covering myself with a sheet or shaking someone’s hand using my right hand.
I worry about meeting someone new, that awkward moment of shaking hands. It is still a moment of fear for me. As I stretch out my left hand, how someone accommodates my outstretched hand tells me much about them. I remember going on my first job interview after I began to lose the use of my hands. As I was introduced to the man who would possibly be my new boss, I was hit with that feeling of dread. He extended his right arm reflexively but immediately countered with his left, maintaining eye contact the whole time. There was a flash of discomfort for a brief second but we both survived. At the end of my interview process, he came out to say good bye and extended his left hand before I could extend mine. I breathed a deep sigh and realized that I could fit into this company. Almost a decade later I am still there. I doubt my boss knows that it hinged on that first handshake. That handshake sealed my return to the work force.
I have significant contractures in my right hand from a crushed arm causing three of my fingers to be curled and my thumb to work poorly. The SCI doesn’t help either. I went thru intensive pain management and rehab to try to get my right hand to open up. My youngest child was almost 4 at the time and my hand perplexed and fascinated him. One night at bedtime as he conducted his nightly inspection of my hand, he asked me if the doctor could fix my hand so I could hold his hand. With that single question my heart broke. It didn’t matter to him that he could hold my left hand; he wanted access to both hands. My world changed at that moment. No longer was my grief over my hands just about me. I realized how much it affected my kids and partner as well. It became time for a new attitude.
Two things changed for me that night, my approach to finding new ways to do things with my hands and my attitude about my hands. I realized that if I was ashamed/ embarrassed of how my hand looks, I was teaching my kids to be embarrassed as well. I had set a tone of, “I can’t do this because of my arms/hands”, making excuses acceptable. I became ambidextrous out of necessity. I found tricks to get dressed more independently and began to push the limits of what I thought my hands would and could do. My teeth became my third hand when needed. I had always been a gadget person absolutely loving technology so I dug in deeper finding simple gadgets that made life easier. I also gave up on perfection in areas that it was not reasonable. Biggest change of all was delegating what needed to be delegated.
I think each of us can come up with pivotal points in our life with paralysis that were make- it or break- it moments. The key is to recognize these pivotal moments and act on them with change. They can be heart breaking moments, crushing in fact but it is possible to move past and thru these times.
Please share some of your pivotal moments……how you reacted and how it changed your life.
Next blog……some gadgets and tricks for limited hand function.
Thanks, WQ
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.
Thanks, WQ
Anyone who knows me very well, knows that cheesecake is my first dessert of choice. Not just any type, it has to be New York style cheesecake. Hard to believe that a simple but delicious piece of cheesecake could cause a spinal cord injury. It was my 33rd birthday and a small gathering of friends met at my best friend Stephanie’s house to celebrate over brunch and to chat, eat, drink and be merry. The highlight of the meal was a New York style cheesecake with a turtle topping—it was decadent. Even better, I was sent home with what remained of the cheesecake. The temptation of a second piece was simply too hard to resist so I went to get a late night snack. In the process of getting a plate, I took a seemingly benign fall on the kitchen floor, landing hard on the metal strip. As I tell everyone who looks at me with a perplexed expression—no I was not intoxicated. I simply fell less than 5 feet, landed perfectly and became an incomplete paraplegic.
Funny thing about spinal cord injury (SCI), it can happen to anyone, any time, any where. I drew a lucky card, I had a congenital spinal cord injury defect, totally unknown to me that resulted in a more complicated injury. Add the facts that I did not seek immediate care, I was uninsured and in big time denial, and you have the perfect recipe for paralysis. Diagnosis: T-12/ L1 contusion injury.
I was luckier than most, I spent 3 years using a manual chair and eventually was able to walk with platform crutches. The sage medical advice I received was, “You can walk, what more do you want?” I left that medical appointment and did not return to see a physiatrist for almost 11 years. I considered myself lucky and moved on with my life. I had married, finished graduate school, had two sons and life was good. Why see a doctor?
Fourteen years after my initial injury, reality came to roost again. I began losing function and could simply no longer deny what was going on. Walking became harder, my hands and arms didn’t want to work and I always seemed to be falling. I sucked it up and saw one of the best SCI doctors on the East coast. My ASIA scores showed that I was a quadriplegic with central cord syndrome but what was the cause? After many battles with my insurance company, tests were finally completed that showed spinal cord compression at C3/4 secondary to my initial spinal cord injury due to my walking.
Last week I celebrated my birthday along with the 20th anniversary of my SCI. Yes, I did say celebrate! Despite continued loss of function, Life Is Good. I have a job, a family and for the time being, I am still walking. I was injured the year and the month the ADA was signed into law and I have seen many changes. I have been fortunate to work in the disability community, met many great folks, including Christopher and Dana Reeve. I have learned a lot along the way and hope to share some of what I have learned thru my blog. I hope you will join me on this next phase of my journey.
Thanks, WQ
