Living With Polio
Nancy Baldwin Carter, Omaha, Nebraska
QUESTION: “We have a number of new members as a result of the publicity our group got through the WE’RE STILL HERE! campaign. Several of the people who called expressed their fears, which I think we all have. How can we help members address their fears in a meaningful way?”
ANSWER: Fear. So many people have fears of so many kinds. Unfortunately, some of us imagine we’re the only ones who do. We might look around, thinking everyone in sight appears to be strong and happy. We don’t want them to see us looking wimpy and scared, so we keep a lid on our secret fears, put on our best brave smile, and set out to fool those around us. What if everybody’s doing that? What if everybody’s running around smiling, thinking theirs must be the only fear in all the world?
That scenario could happen in support groups, without the right leadership. On the other hand, a support group can be the perfect place for individuals to express their fears and begin to deal with them. Take a look at a few examples from the wide ranging fears members at polio support group meetings might be harboring:
Some of us simply feel uneasy around new people. The thought of thrusting ourselves into a room of polio survivors we don’t know terrifies us. Will a friendly greeting and another’s effort to include us in the proceedings quickly put us at ease?
It’s different for each of us. Perhaps as polio children we learned to tuck away our fears in the darkest corner of our souls. The traumatizing experience of working our way through a mysterious and foreign polio maze may have left us too apprehensive to whisper our fears even to ourselves. Will the group hear us, permit us to say the words we’ve needed to say for so long?
Many of us were blind-sided by post-polio. We felt betrayed by the very bodies we had spent years befriending. We felt humiliated and angry that we could no longer do what we used to do, be who we used to be. And suddenly we were afraid. Can we talk about this with the group?
Fear of the unknown is huge. What lies in our futures? What if we get worse? What if we can’t find the medical help we need? What if we run out of money or our insurance coverage turns sour? What if we’re left alone, our loved ones and beloved caretakers gone before us? How will the group find ways to support our need for hope and compassion? How can we understand the worth of staying in today instead of projecting ourselves into a fearsome future?
Fear isn’t easy without someone to discuss it with. It’s like a kid alone in his room at night. It’s dark. He hears the monster in the closet. The longer he lies there, filled with the dread of the hideous beast about to jump out and devour him, the more frightened he becomes. Soon he is nearly paralyzed with fear. Then, if he’s lucky, his mom cracks open the door and switches on the light. She moves to his bed, wipes his tears, and comforts him as she listens to his terrifying tale. Soon he has no problem closing his eyes, falling to sleep.
We need to be able to shed light on our fears—and we need to be heard as we talk about them in meetings. Leaders can work with the group to set up guidelines. These should create a safe, nonthreatening meeting environment where members can express themselves freely, comfortable in the feeling of support and encouragement from other members.
A few tips:
- Learn to listen. Let the member speaking speak without interruption. Know that when your turn comes, you will be treated with the same courtesy.
- Avoid giving advice. Let members say whatever they want to say without being told what they should or should not do about their situation. Understand that what is right for one person may not be right for someone else.
- Refrain from asking personal questions. Simply wanting to know is not a good enough reason for individuals to poke their noses into a person’s life. If members want others to know details, they will talk about them without being prompted.
- Stick with your own story. Suzie can describe her fears and how they make her feel. Jack can get into his fears and what that means to him. But Suzie must stay out of Jack’s business and vice versa.
- Empathize in a healthy way. Most members are made uncomfortable by overly solicitous expressions of concern. Watching people fawn all over members who are discussing difficult experiences in their private lives may cause other individuals to choose not to share their thoughts with the group at all.
- Give people space. Remember that expressing our fears and emotions after years of not acknowledging them to others may be frightening in itself. Let members do this entirely in their own way, without our causing unpleasant consequences.
Leaders should make this process as easy as possible for members. Have the room set up so that individuals can sit in small, intimate circles—the entire group doesn’t need to hear everyone speak. Maintain rather flexible time limits if possible, so that various members will have the opportunity to express themselves, rather than allowing one person to dominate the entire meeting.
We all know this is a polio support group, not a therapy session. There may be many issues without answers here, but often positive feelings emerge when we begin to let go of our fears. We may learn that getting rid of fears doesn’t mean we’re losing a part of US, but rather it brings us the gift of freedom to move forward with our lives.
Let’s talk about it!