A while back, I wrote an entry about finding a message board that I hoped would connect me with other people who have the same neurological problems I have, and how disappointed I was when I discovered that type of tethering covered addressed there is very different than the type that affects me. At that point in time, this disappointment about not finding my peer group (even if it is just one other person) left me feeling alone, again.
I could not have been more wrong.
Even after finding out that the site wasn’t going to be able to answer my questions about my tethering problem, I continued to stay and read. And in doing so, I discovered that the people who participated in the discussions were, to various extents, living my life -- they shared many of my symptoms, had the same hopes and frustrations, and could empathize, not just sympathize, with what it was like to go through life as me. It’s not the shared medical condition that makes someone my peer -- it’s the shared experiences.
And as it turns out, the folks on this message board share a lot of my experiences. I’ve found people who have had myelograms, people living in chronic pain and done battle to get the pain meds they need, and far too many people who have been told their problems are “all in your head” before their actual disease was discovered. There are wheelchair users, people who’ve had spinal fluid leaks, and even one young man who has a Baclofen pump. There aren’t words that will do justice to the feelings that come from being able to talk with people who really get it.
I knew I could learn things from these folks -- after all, they have conditions with which I’m less than familiar -- and I have. But what I didn’t expect is how much I’d be able to offer, and how satisfying it would be to be able to be helpful. My involvement on the site is the first time since I had to stop working in which I honestly feel like I am being useful. I’ve always been big about give back something to the world as a way of showing my gratitude for the good fortune I have -- be9ng active on this site has been a surprising way for me to do that.
I can’t believe how short-sighted I was to believe that I had little to gain from participating there. And I’m so grateful I figured out my mistakes before I walked away for good.