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More Than Just Story Telling
I can't think of anything intelligent to write about and sometimes I can't think of any relevant to write about. Sometimes, I just can't think period and that's when I usually bore you with one of my 'stories.' Well, you're safe this issue .. not one word will be coming out of my computer about the birds or the squirrels or even the new puppy. Well, not unless HE chews through the power cord (like he does everything else in the house) and then I'll have to write a letter of apology for the delay in getting the issue out. This time I have something relevant to write about, now let's just hope I can do it with some intelligence.
Peer support .. boy, is that a misunderstood word or what? It's not just the word but the activity that's misunderstood. What is it? What should it be? Why does it go wrong?
I get my peer support, normally, from just a few people. Not a lot, not a group .. just a few people who share similar experiences and feelings. It doesn't hurt that we're compatible and complimentary in our personalities. When it comes to my art, it's the same thing. Just a few. They are quality so I don't need to fill in the gaps with quantity. It's just a few but without them I would wither and be blown away by the winds of my life. They tether me to themselves and give me strength when I'm feeling shaky. That tether also binds us together when we laugh or fight or admire each other.
Recently, a member of the mail list that I run left the group. I was absolutely floored by her reasons for leaving. Apparently her psychologist told her that she needed to break off all ties to the brain injured community because that connection was encouraging her to make herself more brain injured and more disabled than she really was. I'm not sure what bothered me more .. that a professional would ask a survivor to walk away cold-turkey from an entire system of support, both electronic and in the flesh, that had been part of that survivor's being since her injury .. or that this professional thinks so little of peer support that she thinks all we do is sit in circles, holding hands, singing Kumbaya and swapping our poor little ol' me stories.
Granted, there's a lot of that going on out there. Of course, it's a problem but to strike us all down with the same sword seems so ... so ... so .. stupid, bigoted, ignorant, oblivious. There is a stirring out there in our community - yes, we're starting to wake up and say, Hey, the old formula just isn't working. Let's do something about it.
I'm in the enjoyable position of seeing and hearing a lot of what is going on across the country in terms of peer support. Survivors are defining what it is that they need .. not just in the support they get but the support they give. Rocky Rothrock, a survivor here in Georgia, has done an incredible job as has his wife, Pam, in building their support group to a group that is far reaching in scope. The only singing you'll hear connected with them is at their two annual fund-raisers when singing groups from all over come together to raise the roof, raise spirits and raise awareness. I'd dare anyone to find the littlest bit of self-pity or self-coddling in that group. Sure, they address the problems but they do it with the objective of finding solutions.
If I'd drop a microphone in the vicinity of Keith Russell in Australia, all I'd hear would be the sounds of the earth moving. No .. not earthquakes but survivors shaking the dust of inactivity off themselves and moving forward as they develop and expand S.A.B.I., a group that is reaching out to survivors and family members and surrounding communities.
Tom and Marie Williams of Maine hold hands but that's because they're married. They don't have time to waste crying and moaning .. they are making a difference .. they are shaping the perspective of the community around them and their momentum pulls others with them.
Neville Breaux of Louisiana might be putting chairs in a circle but that's because many of the forums he plays in are 'in the round.' He doesn't tell his story with a whimper or reciting a long list of deficits and problems .. he tells it with humor in a play he has written.
There's a group in Louisville, Kentucky that wouldn't be too happy to think someone thought their monthly outings were anything other than the opportunity to socialize and laugh.
These accomplishments don't happen because a pixie flies by and sprinkles magic dust. Elves don't come in the night and do it. It's a group effort .. a peer group effort .. an effort made by people sharing similar experience and interest and bound by a common goal.
Support is not just received by the things we get. Oh, yes .. that ear, that shoulder, that advice, that kick in the butt is absolutely essential. Without it, we mire down into that bog of self-loathing. Support is also the sense of pride and self-worth we develop when given the opportunity to teach and to share our knowledge.
We all need to be a part of the solution. The professionals must absolutely see the benefit of developing and funding support groups that do more than meet to exchange stories. Encouraging and facilitating groups that encourage community activity, related and unrelated to brain injury, is just as therapeutic as any that require only passive involvement. The family members and caregivers must get involved as well. If you sit and listen to a sad song long enough, you're going to cry. The same is true for conditions .. if you hear only the problems, you'll never see the survivors as anything but their limitations. You'll only see the weight you're carrying and not all those gifts and talents you have to offer.
And, survivors .. well, you know what I'm going to say .. don't you!! Yep .. you're right!! There is a great big world out there and we can't wait for the problems to go away before we start living again in some capacity. If we limit our vision, it isn't surprising that we go blind. If there isn't a group near you, start one. If there is one and it's floundering .. get involved and see what you can do to help. Then, stay involved even when you feel you've outgrown it, help it evolve. We are what we act and take action on.
So now .. what were the words to that song .. Someone's singing, Lord .. Kumbaya. Someone's singing, Lord .. Kumba Hey!! .. where's everyone going? Wait for me!!!
Survive with Pride!
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