life with a chronic illness

In case you aren’t spending the summer in NYC, you might not be aware that it’s been really hot here. Really hot.

Oh indulge me please for a tangent. During a board meeting at my first grown-up job in New York one of the board members asked me where I was planning to “summer.” I was a bit taken aback for two reasons: one, I was “summering” in my fourth floor walk-up in Brooklyn (does that count?), and two, I didn’t know until that moment that summer could be used as a verb.

Here I still am, yet another year of summering in Brooklyn, and perhaps for the first time ever I found myself saying – god I wish this summer was over. This is no small thing; normally I love the summer. Hell I picked my college (University of California, Santa Barbara) in large part because my friend’s older brother sent her a postcard from there that said writing this while studying on the beach. But up until a few days ago we had unrelenting heat for over two weeks, the kind of heat that doesn’t even give you a break in the early morning hours. And for those of us with neurological illnesses, the heat is even harder to bear, turning the intensity of those symptoms up another notch or two. So my love of the summer might end up being the latest thing that I’ve had to give up to Parkinson’s disease. (As a friend, who has Multiple Sclerosis, says thank you MS!) Thank you PD! And when you’re dealing with a degenerative disease, it seems kind of stupid to wish for time to advance any faster than it already is.

One night near the end of the heat wave, not even dunking my feet in the kiddy pool down the block at Vox Pop was enough to cheer me up. It was way too hot, I was way too done in, and I found myself asking – just what is it that I’m doing here? Here being New York, but here also being this lifetime. One never knows when existential questions will decide to say hello. What am I doing here, how much do I have left in me, what is the point of everything? Okay, time to fess up here, because I’m still not very good at admitting this on paper – my real question was – What is it that You want me to do? And it wasn’t a question, it was a prayer.

What is it that you want me to do? Because, honestly, I’m done in. Here’s the thing though with throwing that stuff up to God, because suddenly I go well, yeah I’m really tired then I think, look who I’m talking to. “I’m really tired.” Poor me and my tired old self, while people are dealing with all kinds of stuff I can’t even imagine. Here’s the other thing though, I don’t think it matters so much what you’re praying about – it’s not a suffering contest after all – it’s the fact that you’re having the conversation in the first place and the fact that you’re asking the question – What is it that You want me to do? Because when you frame it that way, it becomes less about you. Think about it, the most likely answer you’re going to get is, I want you to help your brothers and your sisters. Maybe I’m not framing the question in the right way, because so far I’ve never heard anything remotely like – rob a bank (you deserve that money just as much as the next guy!), and hop a plane to Mexico or wherever you can go that serves Margaritas and doesn’t have an extradition agreement with the U.S. (time for a little R&R!).

Hopefully I will at some point get that beach vacation. In the meantime, here’s my best guess (I’m not a perfect listener yet) as to what it is that I’m supposed to do:

Working for Your Life, Managing to Work While Managing a Chronic Illness or Disability, 90 Minute Documentary, By Franklyn Strachan and Angela Welch.

Anyone who has tried to maneuver a middle ground between working full-time in a “traditional” job and complete dependence on public assistance knows that a willingness to work means risking losing all benefits.

More to follow and I do hope you’ll stay tuned.

P.S. Check out (and join!) the FaceBook page for the documentary – Working for Your Life.

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This blog post was going to be titled, Despair, because I’m feeling it, and it seems that a lot of other people are feeling it too. The past couple of weeks have been really difficult – the little voice in my head that sends messages along the lines of “things aren’t going to get any better, this is somehow all your fault, life really is ‘nasty, brutish and short’.” Those fun voices, the ones that are so sneaky and insidious, the ones that usually make their presence known around 2 or 3 in the morning, but now are quite regularly making an appearance in the daylight hours as well. It’s understandable, because as much as you tell yourself that the economy isn’t your fault, that there are millions of others going through the same thing, that you are working as hard as you possibly can to cobble some kind of a living together, that little voice doesn’t quite believe it.

And there are other voices as well, voices of the “experts,” the politicians, telling you to work a little harder, be willing to settle for any type of work, that unemployment is just making you lazy and dependent. Uh huh. My neighborhood, as I’ve mentioned in previous posts, is full of freelancers, consultants and such. I’m not sure where the folks who make these generalizations about the unemployed are hanging out, but it isn’t here. The people I know are hanging by a thread. They aren’t banking those unemployment checks, because they’re spending that money on luxury items such as food, rent and perhaps prescription medications. And they are all working hard. I think one of the things that the powers that be, the ones who refuse to vote to approve the extension of emergency unemployment benefits for example, don’t understand is the fear that we are living with every day.

Last night two friends who moved to Florida last fall were in town and holding court in the bar where the male half of the couple had worked before the move. (He also proposed yesterday to the female half of the couple – congrats! On the Brooklyn Bridge – how romantic is that?) I wasn’t going to go, too much to do and I just wasn’t feeling up to it, despair looming large and all. At the last minute though I decided I needed to at least drop in to say hello. There was a great band playing and many of my other friends from the neighborhood were of course there too. The last song of the night was a cover of the Stones’ “You Can’t Always Get What You Want.” Well, that song struck a nerve, and almost everyone who hadn’t been dancing jumped up and hit the dance floor.

“You can’t always get what you want.”

I hope you’ll understand what I mean when I say; I think we all recognized that it was one of those moments. One of those moments when, in the middle of all the “stuff” we all are burdened with, that you’ve just received a little taste of joy, and you look out and you realize that you love these people. Maybe you don’t like some of them so much, maybe you don’t even know some of them very well, but suddenly you see them for who they are. They are your brothers, they are your sisters. They are your family. And I wished that we could somehow bottle that feeling, then we could take it out when we needed to see that the only way we are going to survive is to recognize that we are all family.

“But if you try sometimes, you might find, you get what you need.”

And just for the few moments of that song, you hear another voice, a voice that whispers instead of shouts, because this voice knows that there isn’t any point in shouting, knows that it could shout as loud as possible and you just wouldn’t hear it unless you were ready, that you won’t hear it unless you are paying careful attention.

And this voice says well done, have fun, dance, and let’s just see what happens tomorrow.

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