Posted by Dr. Dan Gottlieb in Life After Paralysis on July 11, 2017 # Mobility

Our recent July 4 celebration had me wondering about what independence really means.

About 10 years ago I wrote a best-selling book to my grandson called: “Letters to Sam: a Grandfather’s Lessons on Loss, Love and the Gifts of Life”. Essentially it was a book from a 63-year-old man in the last chapters of his life to his four-year-old grandson just starting his life.

Fast forward to last month when it was Sam’s 17th birthday and he got his driver’s license. When I called to congratulate him, he told me he was so happy to have his independence so he could get away from his parents whenever he wanted! Spoken like a true 17-year-old. I remember when I got my license all those years ago and I felt the same way; free at last!

Independence. That’s what we want from the time a three-year-old proclaims “I do it” until we fight for whatever independence we can muster during the last days of life. That’s the word we heard every day during our rehab. Like most, I felt despair about how dependent I felt on my wife and nurses. And then a couple of years later, I learned to drive. And I remember the day, the moment I got behind the wheel with no one else in the van and drove away to where ever I wanted to go. I don’t know where I went because it didn’t matter. I felt the same sense of independence that Sam feels today.

Several months later, we concocted a way to put a pipe cleaner around my wallet so that I could hook my thumb through it and pull it out of my pouch. One day after that I had a sore throat and I drove myself to the pharmacy, picked up some cough drops and paid for by getting my wallet out and pulling a credit card out with my teeth. When I got back into my van I felt that I had achieved a level of independence I never thought possible.

Over the last few years, my startle reflex (A symptom of PTSD) has gotten much worse as it was taking much less stimulus to startle me. A natural response to startle is to move your arms towards your chest for protection. This is not a good development when driving hand controls! Because of that, I decided to give up my license-a good bit of independence. And around that time, the tendon in my thumb stretched so much that it has become very difficult to use that pipe cleaner. More loss of independence. As Sam gains his, I lose mine.

I know, I can almost hear the Lion King singing “Circle of Life". Predictably I felt some self-pity and sadness initially. But I am so fortunate to have nurses to drive me where I want to go. I lose some privacy, but my quality of life remains the same. And, at this stage of life the idea of someone getting my wallet out for me doesn’t bother me like it would have 35 years ago.

Finally, after all of these years I am no longer embarrassed about being dependent. What a relief!

Several years ago, I had a conversation with Lillian, one of my high school friends mother and a woman I love dearly. I have known her since I was 15 years old and whenever I am in town, I visit. Lillian is now 88 years old and severely arthritic. She gets around very slowly in her walker. The last time I visited her apartment, she was bent over on her walker in visible pain. She told me that she stayed in her apartment most days, watching TV and getting visits from friends in the apartment building. Every now and then a friend would take her out for groceries or to get her hair done. And that was the gist of her life. But as she told the story, she had a bit of a gleam in her eye when she said: “you know Danny, who would have guessed that at this stage in my life I would be so comfortable inside my skin.”

And that woman represents the epitome of independence: being comfortable inside your skin whether you are on a walker or in a wheelchair. Being comfortable inside your skin whether you are in pain or dependent. Finding comfort inside your own skin is not just the epitome of independence, it’s the very definition of well-being.

I wish that for all of us.

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.