Living With Polio
Polio and Me: An Inside Look
Nancy Baldwin Carter
One day I was running wild through the exhibits at the Thayer County Fair in Nebraska, a typical eleven-year-old shrieking uncontrollably as the Octopus ride tossed me hither and yon, winning a kewpie doll pitching plastic balls through embroidery hoops. The next, I was in bed with the “flu.”
I was soon to be rushed to the hospital a hundred miles away, cradled in my mother’s arms in the back seat of the car, struggling for breath. That’s the way it was in August 1948.
Someone deposited me into the polio isolation unit and left me there. Alone in a large, dark room, I was having trouble breathing. I discovered I could not move any part of my body, and in an attempt to cry for help, I learned my voice box didn’t work, either. I could not utter a sound. I was terrified. I listened to the wail of ambulances through the open hospital window near my bed, and soon I lost consciousness.
By the next August I had spent five months in the hospital, then seven at Warm Springs, had gone through all the therapies, been braced to the hilt, and was ready to rise from my wheelchair and dive back into life. It took another eight years to train my body to function without the brace—and until today to fully understand what I had gone through.
Life did go on. And I did all the stuff. Or nearly all of it. I went to school and ended with a masters degree. I began professionally as a high school English teacher and ended as an adult education administrator. I made friends, developed relationships, and ended with a super-boffo husband.
When post-polio issues entered the picture, I began working for the cause. I jumped into creating a state-wide polio survivor association that clicked. We were all caught up in a swirl of meaningful activity, carrying the message to thousands, shining light in the darkest corners. By the time I had to step down, I knew that Post-Polio Syndrome finally had me literally by the throat. Once again paralyzed, I started over, this time with extensive surgery, then bracing, a power chair, and using the ventilator.
It’s always hard to admit there are things I cannot do anymore. I don’t relish facing such changes. But I remember the “you’ll have to want what you have, not have what you want” admonition someone lectured me with years ago. As I age and my wasted body shrinks itself like a plum on its inevitable journey to prunedom, I recognize that more and more is quite truly out of my reach.
At first I had to move freely, as “normal” people do. I had worked so hard to get rid of my body/head brace in my college days; the last thing on earth I wanted was to start wearing one again. And I hoped never to possess another wheelchair. So I refused to wear the new brace and fooled around with a manual chair I couldn’t operate. I was miserable. Finally I had to face reality: I will never again be that other person, the one who walks two miles on the jogging path every day, who jumps into the car after a loaf of bread at the market, who pops in to see a friend and take her out to lunch. Perhaps I never was, I’m not sure. What I am sure of is that from the moment I sat in my new power chair with its unexpectedly magic joy stick, I had what I had longed for. I was lifted from the bonds of a stubbornly useless body by an ill-fitting brace and an unwieldy, jet-black chair. I am free. I can move. I can fly down the winding path next to the swans in the lagoon and bustle my way from store to store among the shoppers at the mall. I love it. And when the time comes for me to admit, “I cannot do this anymore” once again—well, I’ll deal with that when it happens. I’m doing this today, and today is what I have.
Polio left me with a lot of advantages. I learned not only to be independent, but to insist on it. I know what it takes to stand fast against the storm. I’m ready to fight for me.
I’ve had the best teachers—wonderful polio doctors, for example, who showed me the value of a hearty laugh and proved that we humans can be brilliant and compassionate at the same time. And all the while, showering me with words of independence.
But perhaps the most significant thing I’ve learned is a gift that came to me by chance. Pure luck. In 1984 I had returned to Warm Springs for a diagnosis of PPS. An exceptional doctor there spent a great deal of time with me, explaining my condition and educating me in the ways of post polio. Five years later, the overused muscles in my upper body gave out. I could not sit up or feed myself or control the movement of my head. There seemed to be no way out. I was scared to death. An orthopedist came to the house to examine me, and then a neurologist. Both said they could do nothing to help. I felt abandoned, drowning in despondency.
Then I remembered the Warm Springs doctor. I got her on the telephone and tearfully explained my situation. She spoke with me for a long time that day, and finally I heard her say in that soft, sweet Georgia accent of hers, “Accept it, Nancy.”
Suddenly a weight was lifted from that miserable body of mine. I was at peace. It was a powerful moment, a lesson I hope never to forget. All I have to do is be willing to accept my circumstances, and I get to feel serene and happy. The mind trumps the body. Even today when this body malfunctions, as it does far too often, I try to summon the willingness to “accept it.” This is never easy, but it is always the solution.
My ace in the hole is my husband. He indulges me. Pampers me. Laughs with me. Whatever I need, he’s here to help. He has rushed me to the emergency room; he has fed me when I can’t raise an arm. He bathes me, empties my commode, takes me out into the sunshine. Yet, it’s so much more than that. He loves me. Just as I am. And even though I’m not the, uh, ravishing beauty he married, this little particular doesn’t seem to matter; he sees the me inside. It’s not simply that he arranges the pillows that ease my pain; it’s that he arranges the pillows. And the task is done with sweetness, compassion, and genuine care. Who would I be without this amazing presence in my life? Would I be at all? I wonder. This is a very special man.
There seems to be no adequate way to paint the picture I’m attempting to. I’m shocked that, in order to describe how I handle aging, I want to talk about the toll taken when age and PPS conspire against me. I think of railing against the fates, of devising ways to triumph over the odds. Details, mere facts. Not the way I feel. In truth, my life is much simpler than that. I wake up in the morning. I do what I can. I deal with today. If I’m still here by bedtime, it’s been a good day. I am happy.
There’s a spiritual aspect to all of this that I don’t totally understand. I’m aware today as I never was before that I don’t get to have my way all the time and, significantly, this is a good thing. I don’t have God’s vision. I can’t begin to predict the ramifications of my will. I can’t see down the path; I don’t always know what’s best. As a result, I try to give up my headstrong mulishness and merely let the day happen. In many ways, it’s a relief not to have to shoulder the burden of my capricious life. I mean to open myself to the possibilities, to step back and allow the future to unfold.
Yet, I cannot lie. Sometimes I can’t stop fighting, and occasionally fear gnaws at the corners of my being. There are days when darkness enfolds me and I am alone in the certainty of this disability. For a moment I am lost in despair. Then I remember the hope of tomorrow. If I can get through today, I tell myself, by tomorrow the pain may be gone. It could happen, I say. It could happen. And frequently it does. It’s no longer in my hands. Even so, and perhaps this surprises even me, I like where I am and who I am. Maybe that’s the key. Yeah, I’m OK today.
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.