Lessons learned: adapting and evolving are necessities for a life with paralysis - Blog - Reeve Foundation

Living with paralysis is never easy. Each week, and sometimes each day, brings with it some new challenge that is not easy to deal with when paralyzed. One thing that has become clear to me during the past three decades is that we need to evolve in order to find solutions that will bring about the best outcomes possible to keep us healthy and active as long as possible.

One of my biggest challenges, identified about a month after my spinal cord injury, involved penmanship. We all have penmanship of some type and use it to communicate with others who might not be present for a face to face conversation. It is an important skill to have, and we are even graded on it during our early years in school; at least we were in the past. Our classrooms had a chart of the alphabet prominently displayed above the blackboard at the front of each room. For each letter there were examples printed in block style, small and large case, and in longhand; today, some call that cursive writing.

Having the ability to write in longhand in a manner that was legible to others meant that we could send letters and cards to friends and relatives who live far away. We used that writing for school assignments and even for term papers in college, as it was required. I learned how to write when young, used it often throughout my school days, and continued as an adult in the world of business and government.

After my cervical spinal cord injury, I found that the quadriplegia that resulted had impacted my ability to hold a writing utensil and I could no longer move my left arm and hand in a manner that would continue to allow me to write lefthanded. I won't say that this devastated me, because I had plenty of other problems to worry about at the time, but I had to do something about it right away because I felt it would help me in the future.

This was happening in a time before widespread use of cellphones or personal computers, and the single computer they had for use of patients in the rehab ward was not accessible with my power wheelchair. I pushed hard for the occupational therapist to help me learn to write again using my right hand, so I could practice writing the longhand alphabet on a yellow legal pad just as I had done in grade school. There was some resistance to the idea at first, because the OT wanted to continue having me use my limited hand function to pick small objects out of a big bowl of dried rice, but I prevailed.

The work paid off, and I was able to begin by strapping a splint to my hand that would hold a pen. I made the discovery that our signatures are a function of our brains and not the muscles themselves. My signature with my right hand was the same as my lefthanded signature had been for years. I used that 'regained' writing ability when taking notes after I returned to college and in careers after I graduated.

The whole process of learning to write again showed me the value of being able to adapt and evolve to changing situations in our lives and with the functioning of our bodies. My body is still changing and some of my earlier levels of strength and dexterity are diminished today. After I moved on from rehab I was able to hold a pen in my hand, as long as it had a larger rubberized grip. Now I only use a pen to sign checks or documents, and use a personal computer or smart phone with voice recognition to share my thoughts.

In the first few years after my spinal cord injury my clenched fists meant that I could hold eating utensils without any adaptive splints and use what was available wherever I happened to be eating; that is not the case today, as my grip has changed. In order to adapt, I just ordered some eating utensils with larger foam handles so that I could continue to feed myself despite not being able to hold most standard silverware without dropping it.

It is not easy to passively sit back and accept changes, even those caused by paralysis, so I will continue to adapt to whatever change comes next. After all, the only thing that I cannot change is the paralysis.

© 2018 Michael Collins