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: I am 58 years old and I attended a support group meeting recently. I will never go back.
The members were friendly enough, but the message I heard over and over again was this: "You look good now, but just wait. I used to walk, too." I suppose they mean well, and I could attend and learn what I can from them, but I haven't because I can't get past their feelings of resentment. Can you alert the groups that this is a problem?
A: Whoa! What on Earth. . .!
Surely these polio survivors know that nobody can predict with any certainty what will happen to any other polio survivor. They can’t actually make more than a wild guess about their own prognosis. Our original polio was different in as many ways as there were people who contracted it. Post-polio is the same. It’s nonsense to pretend otherwise.
Frankly, I don’t think it would improve the situation for anyone to notify this group that there’s a problem. If their leaders haven’t figured that out by now, hearing it from someone else won’t change their minds. How many polio survivors does it take to pass through the revolving door of poor meetings before someone catches on? People have been offering ways to avoid the pitfalls of such meetings for years. Groups either stop the foolishness or they don’t. Simply put, this group likes what they are doing; if they had wanted to change, they would have.
There has to be a different answer—and I think I know what it is. A little over twenty-five years ago, I telephoned Gini Laurie, the legendary founder of what is now PHI. I had never heard of a post-polio support group; indeed, I had never heard of post-polio. I knew nothing. But I was seeking help that I desperately needed. We talked for quite a while, and then she said to me, “Why don’t you start a Nebraska post-polio support group, Nancy?”
It’s as simple as that! You want a good post-polio support group? Start one yourself!
You don’t have to be a veteran of the post-polio wars. All that’s required is the determination to have quality meetings. Get started: get the word out. There are plenty of places to post free notices for such an organization. Polio survivors turned off by meetings like the one you describe will be waiting in line. And there will be others, too, to get some new blood flowing. It only takes a few members to have a top-notch meeting.
Truly excellent information abounds these days. Start with this outstanding PHI link: What Is a Support Group? Spend time with the PHI website. Read everything they have regarding developing healthy, helpful meetings. Check out Lauro Halstead, MD’s book Managing Post-Polio, Second Edition, and absorb the ideas about support groups in chapter 9. PHI’s directory may help identify medical experts as speakers. More leads will materialize out of the blue.
Sit down with the other polio survivors and talk through what you all want for this group. What kind of meeting does it take to make members feel better when they leave than when they went in?
Most of us have learned that talking endlessly about the problem never produces a solution. And trying to one-up each other’s horror stories is nothing but self-defeating. Is this what polio survivors look for?
Worthwhile support groups offer the kind of information and emotional support it takes to weather the storm. Members listen thoughtfully—and encourage one another to express themselves. We let our empathy show our loving, human, and yes, even fun sides. We discover that the support we give others is a gift to ourselves. That’s what keeps us coming back.
Source: Post-Polio Health International (www.post-polio.org)
Tagged as: attitudes , communication , relationships , support groups