From the series, Polio Survivors Ask, by Nancy Baldwin Carter, B.A, M.Ed.Psych, from Omaha, Nebraska, is a polio survivor, a writer, and is founder and former director of Nebraska Polio Survivors Association.
Q: We have known about the late effects of polio for almost 30 years. I've gotten a lot of advice during that time and wonder about other polio survivors. What's the best post-polio advice you ever received?
A: I’ve always felt I got wonderful advice from Dr. Ann Bailey at Warm Springs. My body had hit a patch of frightening paralysis, and I called her to cry on her shoulder. After listening to my weeping and wailing for quite a while, she finally said, “Accept it, Nancy.” These simple words gave me the serenity I needed to go on. No amount of teeth gnashing could help me in the way that accepting the reality of the situation did. This is lasting help—I use her words of wisdom often.
But this is a question with a million answers. I wondered what others would say. Curiosity caused me to contact a number of polio friends around the country to get their responses.
From Illinois, Jan says, “Rest. Schedule it into your day. It's as important as anything else you may do and will possibly give you the oomph! to do what you must.”
“The best advice I’ve ever gotten is ‘walk the knife edge: too much exercise can hurt you and too little exercise can debilitate you,’” says Larry in Minnesota. “Just in case you’re interested, the second best advice was ‘take charge of your own health care.’ Certainly that does not mean ignore the advice of your health care professionals but it does mean make sure you understand their recommendations and that those recommendations fit with everything else you know. If they don’t, it is your responsibility to question the provider until you do understand.”
What popped into Becky’s mind in Texas is “PACE YOURSELF. Conserve energy—stop along the way when we need a rest from walking; stop to admire a rose halfway up the staircase. This reminds me of a favorite quote from Georgia O’Keeffe: ‘Nobody sees a flower really; it is so small. We haven't time, and to see takes time—like to have a friend takes time.’ I am encouraged to enjoy the precious things in life, and that doesn’t require physical energy.”
Richard, in California, tells us “You must acknowledge to yourself that you have a disabling condition. Don’t be consumed by that reality, but be honest with yourself. Ignoring or denying this reality leads to anger and frustration. It can also lead to counterproductive behaviors. When you make peace with your body you can begin to make appropriate adjustments. And, don’t be afraid of all the things available to assist you in life. These assistive devices can be your friends, not your enemies.”
“In looking back, the best advice I received was that when judging my activities and exercise, I should be aware that there is weakness from disuse as well as from overuse,” says Missouri’s Joan.
“Pace myself,” Peggy, another Missourian, replies. “I must be a hard learner, because on the good days, I find myself trying to do more to sort of catch up with things I was unable to do on the bad days. I call it ‘Hallelujah I’m healed’ syndrome, on the good days, and it drives my husband nuts! I try to be good, I really do. But there is a little voice inside that says ‘Go for it Peggy. You’ll be able to do all of it, and then rest.’ I can tell you with certainty that life at our house is not boring.”
Aren’t these terrific! Now I’m thinking many of you have gotten excellent post-polio advice, as well. Why not share these gems with us—send them to email@example.com and we will post them on www.post-polio.org.
Tagged as: attitudes , energy conservation , pacing , psychological health , self-help