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Monthly Archives: October 2012

Looking Forward

After what I’m officially calling a summer¬†hiatus, I figured it was time to bring this blog, and The Great Exchange, back from the dead. I’d rather move things at an embarrassingly slow pace than not move them at all, and it’s oddly comforting that after four months of inactivity this little corner of the internet still gets about 30 unique views a day. Not much, but I’m frankly surprised we’re still seeing any traffic at all, and it shows that people are still interested in the cause.

My original goal for this blog was to keep it hyper-focused on nonprofit and disability-related material, but the fact is, the narrative spills over into my life all the time, given the personal nature of The Great Exchange. So on a personal level, I’ve been diagnosed with my own completely fascinating brain disorder. It’s called a chiari malformation, and the pressure it’s putting on my brainstem is the reason for my central sleep apnea. I also have syringomyelia, but if you ask me about that last one and I’m not around a computer to look up the name, I’m hopeless. And I’m having partial seizures, but they feel like nothing.

Surgery is sort of a “when, not if” thing, but it will be at least a year before the insurance company arbitrarily decides that I’ve paid them long enough for them to tend to my pre-existing condition. Still, I go to bed every night now with my arms wrapped around the comforting promise of a cure, and that feels great. Lack of sleep continues to be the most difficult thing I deal with, but it’s not really an excuse for failing to move forward with The Great Exchange.

So why am I moving forward with it again? Because it seems more important than ever. Because it still affects me far too deeply to go out to brunch with friends and see one man, clearly disabled, eating alone. Because the word “retarded,” even when it’s spoken with no malicious intent, still hits me in a primal and painful place. All of that.

And on an even more personal level, because I derive meaning from helping people, not making money; and until I can start doing that, I’m just going to feel like I’m spinning my wheels. It’s honestly a little depressing not to have anyone to help. I’m not trying to create a false dichotomy here, but it really seems like people are drawn to one thing or the other: financial impact, or social. And I actually don’t value one type of person over the other; but I do think it’s an important part of seeking happiness to determine which type of person you are.

So where does this go from here? Baby steps. The tiniest baby steps. And it’s hard to me to admit that, especially on a public forum, because it feels a lot like riding a bike up a hill in front of a bunch of other bike riders and finally acknowledging that you need to get off the bike and walk. Especially since my nonprofit friends are still reading this, and my writing friends too, and a lot of people who have made it very far – objectively speaking, farther than me – through pitch-perfect focus.

What I can do, this week, is clean up the internal pages of The Great Exchange’s site; and make phone calls and send emails until we have our first team assembled. The team doesn’t have to be big. I’d settle for ten Core Members and a couple of Allies who are particularly tenacious about getting through any nascent first-time confusion. And I think I can have an inaugural meeting within a month. And I think I can write one or two blog posts a week until it happens. And I think all of this is completely doable.

So, happy Fall, and here’s to a slew of meetings that get off the ground and a future that’s brighter than ever!