Sarah, who was only 8 months old when she had polio, has been told that she was in isolation at the hospital for 10 days. John, who had polio at age 1, was in the Sister Kinney Institute for 6 months and saw little of his family. At these early ages, they do not remember much as they were too young to put words onto what was happening to them. What they share with others, who had polio at a very young age, is an underlying sense of isolation and a fear of being abandoned.
These feelings stayed with them in one form or another throughout their lives, playing a role in shaping their personalities. Both Sarah and John talk of having “emotional memories”- of feeling helpless and defenseless, of being afraid to make attachments to others for fear of rejection and abandonment. They were often left alone without the nurturance of a close family, and did not learn how to relate to others, except perhaps to teach themselves not to make trouble and try to fit in. But there were others who did just the opposite, who tried to draw attention to themselves, so they would not be so isolated or left alone.
And there was Karen, who was 5 years old when she contracted polio. She remembers being in the hospital initially and then again when she had her surgeries. Later, when she was at the convalescent home, her mother rarely visited her. Karen thought that her mother was ill or had died. She reacted by becoming a “trouble maker’, refusing to do what she was told, bothering other children and even trying to run away. When they threatened that they would send her home if she didn’t behave, she acted out even more. Gong home was what she wanted. She wanted to see her mother, to find out if she was alive. Today, she too is left with the underlying fear of abandonment. In her case she goes from wanting to be invisible and left alone to making waves so others will give her the care and attention that she feels she needs.
One result of coping with the Post Polio Syndrome (PPS) is that people are reflecting on those early years and are looking at their lives in a different light. They are now beginning to understand the impact of polio on their sense of self.
Sarah describes an underlying anxiety that people will leave her, that she will be isolated and left alone. When under stress, she finds herself re-experiencing the sense of abandonment, often reacting inappropriately to situations as though she were that child again: frightened and angry. Today she is consumed with the fear that her husband, who is older than she, will die and thus abandon her. Although she knows intellectually that she can get along on her own and has supportive people around her, she continues to feel very insecure, as if whatever she depends on will be pulled out from under her.
From the fear of abandonment comes the sense of not being able to take care of oneself, of being at the mercy of others. To survive, people develop personalities where they try to be over-accommodating, over-helpful and over-generous: anything so others will like them and be there for them.
Paulo remembers that when he went back to grade school after being in the hospital, he did not want to use any crutches or his wheelchair. He wanted to fit in with his little playmates. Now he says that he will do “almost anything” for people, so that they will accept him. This has caused him to by very sensitive to others’ needs and reactions. As a defense, he tends to isolate himself and has become a very private person.
Despite having grown up to be quite a successful person, Bob had incorporated the sense of being useless into his personality. He was always afraid of being rebuffed, and therefore never tried to help others, as he felt the best thing he could do was just to stay out of the way. As a result people thought of him as cold and unfriendly.
Gloria tried not to draw attention to herself by staying “invisible” all these years. She says it is because she does not want people to see her as “different.” Thus, Gloria is always surprised when someone calls her by name. “They remember me!” she finds herself thinking in disbelief.
Many who have physical disabilities try not to draw attention to themselves, so others cannot hurt them emotionally or physically. Fran, who had achieved a position of some stature where she worked, hated being late to meetings. She did not want her colleagues “staring at me in my wheelchair.” Rather than going in late, she would not go at all, which of course brought a different kind of attention--and not necessarily a good kind.
Paul complains that he has a hard time believing that anyone could like him. When he was growing up he felt this was because he was “a cripple”: a word that some of his schoolmates used when teasing him. Who would be there for him? Who would understand? Whom could he trust? He admits to having developed an “obnoxious personality”, looking confident and in control, but he recognizes that this is a way of keeping others at bay, rejecting them before they can reject him.
To some extent or other polio has impacted on your life and affects your sense of self. How do you deal with those parts of your personality that you would want to change? For a starter, to make changes in your life-- in the way you feel and in the way you live-- you must want to change. Once you make that decision, how can you take charge and make changes in your life?
Allow yourself to recognize what you went through. Think about what you did as a child to survive having had polio. Don’t expect yourself to have acted or felt as you might now that you are mature. Think about children you know who are the same age that you were when you had polio. See how they respond and see the world. You don’t expect them to act like adults. So when you look back on your life, try to understand it through the eyes of the child.
Don’t spend too much time alone. Keep active, intellectually and socially. If you get an invitation, although it may be easier in the short run to just to turn it down, that will only lead to more isolation and depression. Be with others. Share their lives and let them share yours.
Remember, you can’t change your history but you can change the way you re-experience it. You will have reactions to your life experiences, but by
you can help yourself gain understanding and control over your life. Talking out loud and hearing what you say is quite a different experience than just going over and over things in your head.
If bad feelings come back, try not to act on them. Know what triggers them and try to avoid getting into such states or situations. Minimize stress. Exercise to whatever extent you can. Get enough sleep, keep caffeine and alcohol intake to a minimum.
Tell yourself that you are OK. Focus on your accomplishments. Although you may have an obvious disability, remember that others have their trials and tribulations too; you may just not be able to see them. If you accept yourself and learn to like yourself more, you will convey this to others, and they will act in kind.
Margaret E. Backman, Ph.D. is a Clinical Psychologist in New York City, specializing in Health Psychology. In addition to her private psychotherapy practice, she is an adjunct assistant professor at the New York University Medical School. Dr. Backman has been working with those who have post-polio syndrome for many years.
Reprinted with permission.