Reeve Foundation Paralysis Community

I just finished reading " Letters to Sam" and I found many wonderful insights, wisdoms and chapters to share with others. Your candor and sensitivity are refreshing.

I found myself wondering how you have managed the changes that come with having an SCI for so many years. I am 18 years post and have enjoyed relative good health. Just yesterday I was chatting with a friend who is also a quad and they commented that it isn't all about the "not walking" but everything else that goes with it. I find this a common subject amonst the 10+ year folks.  All of a sudden, what did once work, starts to break down, function less smoothly, etc.

My friend and I were talking about how we are  incredibly tired, and weary of our bodies. It colors the world at times.  Suggestions, ideas on how to deal with this? Getting old isn't for sissys.

Thanks for what you do here for the community.

Dear Bernadette,
your request brings me honor as you have invited me to talk about how the relationship between my body mind has developed other over the years.

At the time of my injury at age 33, I was a young viral independent young man. I was furious at my body. Not only would he not do what I wanted it to do, I was ashamed of the way I looked. I hate it myself when I had accidents and I would often pound my legs out of anger. Hatred, pure white hatred.

About 10 years later I said on a radio interview that my body acted like a terrorist but I had to treat it like a fickle lover. And that was true, we all know about sudden fevers and spasms accidents and dysreflexia.

About five years after that, I had a very bad skin breakdown and I was in bed for the better part of 18 months. During that time, everything inside me became quiet. The rage and the shame and might need to accomplish great things and my wish for the past and longing for things I could not have all went away. And there I was and open and peaceful. Every day I watch nature for hours and when I had a visitor or even a patient (yes, I saw patients while I was laying in bed -- a reverse psychoanalysis!) When someone entered that room, my heart open and I felt love. As you know, I described that in my book. Something profound change in me when my ego was quiet.

About 10 years ago, I came close to death and since then, it has happened several times. And coincidentally, last year I was interviewed on fresh air when Terry Gross asked me the same question about my relationship with my body. I told her essentially what I just said above. But then I said that my body is tired as it has worked very hard for these last 33 years enabling me to maintain the life I have. I feel great compassion for my body fatigue, gratitude for what my body has done for me and great love for this body I used to hate. Because I know that one day, before I am ready, my body will wear out and I have a feeling we will both be very sad.

Please take care and thank you for this gift

Dan