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.