It's hard to know where and how to reach people who might be interested in my musings and ramblings. Maybe it's time to get a video camera and do a spot or two on YouTube? Or maybe podcasting is about to explode, and I should get with that aspect of online life.
The original flatback forum that eight of us established 15 years ago (after Listserv-type scoliosis groups gave us perpetual grief about mentioning or discussing flatback syndrome in public--a moderator or two went so far as to censor any any post on the subject) seems to fall into periodic disuse, even though loyal old-timers still urge me not to drop it. I do believe the "Feisty Forum" was a helpful resource to its members over the years, but right now things aren't exactly hopping over there. We got lots of requests to move to Facebook, and we tried very hard to oblige, but our satellite Facebook group attracted some real attention-hoggers. One member in particular wanted only to rant about the evil acts and foul intentions of spinal surgeons -- ALL spinal surgeons -- and the Facebook format made it very difficult for anyone else to get a word in edgewise. Eventually we decided to return most of our energies to our Yahoo Groups site. Some of us aren't too happy with Yahoo's new "neo" format, but so far no viable alternative comes to mind.
I was moved to write a Thanksgiving post to the Yahoo Group yesterday, but then I thought better of publishing it, at least at that site. Rather than letting it languish in my Drafts folder, I'll reproduce it here:
Hope you're having a restful, celebratory day.
The group has been pretty quiet again lately. How about sending us a post to let us know what's happening with you? (I know, bad idea, posting a post like this one. Who ever was inspired to get n touch by being nagged? In this group of well over 900 intrepid individuals, I bet there are one or two who are old enough to remember Fritz Perls and Gestalt therapy. In the sixties they used to sell this giant poster of Fritz, with a quote he was known for: "Don't push the river, it flows by itself." And here I go pushing again anyway.) I do realize that in a way this group serves two rather different purposes and constituencies, so to speak. What I mean is, there are two principal subgroups in this group, and conceivably each might benefit from a group of its own. That's something we might want to discuss at some point. (1) Some members are beginning to consider having flatback revision surgery. This is a major life decision and possibly the hardest you will ever make. We want to help you in any way possible as you research surgeons and consider your situation with respect to potential surgery. We want to provide a free space where you can vent and worry and wonder and doubt and whatever you need to do. Dismal experiences with certain surgeons, sudden frightening memories of everything you went through at age 13 or 15, questions about how it will be different this time or whether it will be just as bad . . . concerns about clothing to fit your skewed body contours . . . concerns about relationships that fit your former life but seem to be filled with stress and tension as you stand on the precipice of a whole new existence . . . practical questions about health insurance coverage, disability compensation, keeping up your house or apartment when you're in this much pain, walking down the street to the store when you're not sure you can keep holding your torso up, going to sleep when you can no longer lie in your bed . . . Where can you buy the best reacher or grabber? Is it time to consider a walker? Will your neck ever be the same again? How can you get more specialized and attentive pain management? What can you do about problems of loneliness and isolation? Who will walk the dog today? Can your marriage weather this load of horribleness and uncertainty? Should it?
You may be weepy and grief-stricken at the
realization that you can no longer lift up your three-year-old in your
arms. You wonder if she can forgive you (she can and will), if she will
be scarred for life (she won't-- in fact, she has a good chance of
growing into an unusually compassionate adult).
We may not have any definitive answers for you, but we sure do want to hear about your questions and worries and try to lend a helping hand. We know you'd do the same for us. (2) The rest of us, the Feisty members in the second subgroup, have undergone at least one flatback revision procedure. For the most part, I expect, this subgroup is concerned with questions of how to live the best lives we can despite certain limitations and changes that have radically changed our daily activities, our family constellation, our commitments to paid or volunteer work, our dream of traveling around the world, our expectation of what things will be like at breakfast tomorrow.. It's taking us so very l-o-o-o-n-g just to accept this rotten hand we've been dealt! It seems like some kind of surreal nightmare. Like, where did our REAL lives go, the ones we planned and studied and worked like hell to create? Where did WE go, the people we used to be? What will we be, what can we be, instead? Maybe you are still very close to a recent revision surgery. You can be incredibly proud of yourself for going through with it, for having done it -- we all know this surgery is absolutely terrifying and doesn't seem like something any reasonable human would consent to. But now that you're a little beyond it, you're facing one, two, even three years of ongoing changes. You may think, say at some point next October, that you've hit a plateau -- hit a wall -- only to experience a sudden awesome improvement in functioning The recuperation from this kind of major messing with your spine is never easy or predictable. If you had the whole deal, the posterior-anterior-posterior extravaganza, with tricky osteotomies and massive blood loss and internal instrumentation that makes your latest X-rays look like something out of Stephen King's imagination -- if you were fused, this last time, all the way to S-1, the sacrum, the end of the road -- you may have mostly pragmatic, straightforward sorts of questions, e.g.,"Will I ever be able to tie my own shoes again?" We want to help subgroup #2, the revision-surgery graduates, as much as we want to be there for subgroup #1, the folks just starting out on this odyssey. We aim to supply you with all the support and encouragement we can, as you continue to adapt to this massive, tumultuous event of having had your spine surgically remade. Whatever your concerns may be, we urge you to share them with the rest of us. We want to know about your discouraged times; we also want to celebrate your times of progress and achievement, your insights and breakthroughs, the growth-spurts in your adult development. We're here to help and support each other with everything from pain management to choice of surgeon to the hassle of encountering so many ignorant folks who are sure you'd be fine if you'd just consult their chiropractor or try an obscure new nutritional supplement promoted by their particular fringe-organization. Please . . . don't be shy or reticent or mysterious. Don't (as my dad used to say) keep us in suspenders! Take a few minutes to catch us up.
Dash off a couple
lines on your laptop or smartphone; give us a hint of what's happening
-- in your body, in your mind, in your life. We really, really want to
know. C'mon, send us a post already!
As ever, Elizabeth
The same goes for anyone reading this blog. Revisionary Woman is open for comments 24-7. And not just comments from fellow "spine" people -- I've defined this space as a resource for any woman in the midst of a major life-upheaval, medical or otherwise.
What are you dealing with? How are you dealing? What have you learned from the experience?
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