Secrets for survival -- mining the wealth from peer contacts

Posted by Michael Collins in Life After Paralysis on April 25, 2018 # Health

Some people may think that 30 years is a long time to survive and remain relatively healthy after onset of a significant disability that results in some level of paralysis; I know that I do. When I joined the "fraternity of the paralyzed" three decades ago, one of my greatest needs was to meet someone of advanced age who had survived and prospered despite the quadriplegia that was immobilizing me.

I am happy to report that I was successful in my search. Not only have I met people of my current age and condition who dealt successfully with all of the issues that paralysis brings, but I now know many more people who are older than me and have been dealing with this throughout their lives. No matter whether they are good friends, casual acquaintances or somebody who keeps in contact on the internet, they are all a wealth of information about the paralysis that serves as a link between all of us.

My search for answers about the long-term impacts of the paralysis brought about by my newly acquired quadriplegia began not long after I started emerging from the fog that seemed to envelop my brain during those first few days in the Sacred Heart Medical Center rehab ward. While I now believe that was simply a reaction to the sudden onset of such a devastating injury, it was probably just shock in the process of trying to accept the fact that much of my body would no longer respond to my wishes or commands.

As one of the older rehab patients, I had plenty of questions about the impact of my spinal cord injury on my body--and life--as I aged. My doctors, nurses and therapists soon tired of my questions and referred me to the hospital administrator, as I had requested something they had not made available in the past.

I wanted to meet some past rehab "graduates" who were now living in the community to ask them about life on the outside after we somehow became rehabilitated. To accomplish that, I felt that it would be helpful to host a meeting or social hour in the evening and have some light refreshments available to entice people to come and talk with us. He agreed, and the therapists contacted past patients to invite them to our first meeting.

I don't know what we called those gatherings, but they were interesting and well attended. Many of our questions and concerns were answered or explained in more detail and we invited medical professionals and therapists to make presentations about subjects of greatest concern; those included bowel and bladder management, sexuality, driving, finding and employing caregivers, employment, housing and what benefit programs might be available to help us survive in the community.

Those types of meetings, whether called peer support, spinal cord injury forums or as part of the programs supported by organizations that focus on specific types of paralysis such as spinal cord injury, brain injury, multiple sclerosis or muscular dystrophy are a "godsend" for those living with paralysis, from whatever cause. In all of them, some of the most informative discussion originates from our peers who deal with paralysis as a part of their daily lives.

Before being released from the rehab ward I benefited from a couple of individuals who had already returned home to resume their lives in the community but were willing to invest more of their time in returning to the hospital to meet with us individually and discuss our concerns in greater detail. A few years later I had the opportunity to serve in a similar role as part of a volunteer peer mentor program coordinated through our Regional Spinal Cord Injury System. It involved meeting with newly injured patients who shared a similar level of spinal cord injury in order to let them know what might lie ahead.

I can only hope that the information I shared was as valuable to them as what my peers have been sharing with me for these past three decades. In those early years the internet was in its infancy, and it is gratifying to know that dozens if not thousands of resources are immediately available to people around the world today so that they can remain as healthy and independent as possible.

© 2018 Michael Collins

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.