The Polio Paradox: A Book Review
A Book Review by Laura Vittorioso
I just finished reading Dr. Richard Bruno’s book, “The Polio Paradox.” I learned so much about polio that I never knew. Did the medical professionals fully understand this disease back in the 50’s when I contracted polio? I was told that the motor neurons that control muscle movement were damaged or destroyed and that was all. I contracted polio at twenty months which left me a paraplegic. I have since walked with braces and crutches.
I didn’t realize that polio is a disease of the brain and spinal cord. Many of the “ailments” I’ve been dealing with for the past twenty years, I attributed to “getting older with polio.” My primary care doctors didn’t seem to understand my symptoms either, often sending me for repeat sessions of physical therapy for the purpose of muscle “strengthening” to build up my weakening muscles. PT always left me feeling more fatigued and “spent.” Instinctively I’ve realized over the years that I can no longer do what I used to do; that I need to slow down because of the muscle pain and fatigue. But this is difficult for us who have built our lives on over doing to compensate for our disability. In fact I was told as a young child by the physical therapists that I would have to work harder and be better, than those who were not disabled. “The world doesn’t owe you a living” I was told. It was an either/or situation. You either worked hard to achieve some type of normalcy or you were left behind to stay at home and not participate in society.
I never wanted to be my disability; I wanted to be like everyone else. I went about my life as if I wasn’t disabled; however, it would trip me up every so often as a reminder. Now in my 70s it is a constant reminder. I have to make decisions every day about what I can and cannot take on. For example, Sunday has always been my cleaning and laundry day as I have always worked full time. I can no longer vacuum, do the laundry, change the bed and cook food for the week in one day. I may be able to get the laundry done and change the bed, but that is about it. It’s hard for me to see the things I want and need to get done (being the Type A that I guess we all are) and not do it. I’m trying to listen to my body, but it’s difficult as I’ve always pushed through pain and fatigue.
I got involved with adaptive sports in my early 50’s. I wish we had adaptive sports when we were growing up. I purchased a used handcycle. It’s a three wheel bike that you motorize with your arms. It’s been an activity that I have so enjoyed. I’ve been able to get out in nature, on wooded paths and ocean boulevards. I would go out with organized groups so there was help in getting the bike out of my car and assembled. We would ride for 5-10 miles. Once I did a 20-mile ride. Now I take short rides around my development. If I want to do a bike ride I have to give up something else, like doing laundry or changing the bed. It’s trying to figure out how to hang on to the activities I enjoy without totally tiring myself (or as I’ve learned causes further damage) that is so hard.
As Polio survivors we’ve had to figure things out. When I had my first child I had to figure out how would I carry the baby? How would I get him into the car for a doctor’s visit when my husband was at work? Somehow I figured it out and raised two sons.
The late effects of polio can be difficult to understand – not just for me but for my family and friends who have never considered me disabled. This book is well-written and easily read. Dr. Bruno’s detailed diagrams enable one to understand what is going on in the brain and spinal column. The case studies were very interesting and some were a sad reminder of the abandonment and loneliness we experienced as young children. As a result, I understand not only what happened to me when I was a child but perhaps of greater importance, I understand what is happening to me now. Since reading the book I am trying to make conscious decisions about: reducing my work load, taking more rest breaks and transitioning to more wheelchair time. It’s yet another challenge to be figured out. I now have a better understanding of Dr. Bruno’s primary advice, “conserve to preserve.”
The Polio Paradox is easily available through Amazon and Barnes & Noble