Back to Work!

I said “fuck you” to God last night.

Yes, I did and I know that some of you will think “you did what?” picturing hailstones and locusts, while others will think “eh’, so what?”

But I was raised Lutheran, and in spite of growing up in California there has never been any doubt in my mind that I come from Midwest stock, and we simply don’t say “fuck you” to God. So the California Berkeley-ish part of me and the Norwegian, German, Midwestern part of me are currently engaged in an epic battle over the severity of this infraction. While they duke it out (and don’t worry about who wins, I’ll most definitely keep you apprised), why don’t I tell you the reason I told God to fuck off last night.

Here’s the rub; first I have to give you a bit of back story. Nine years ago I walked into Beth Israel Medical Center in Manhattan as Angela, and walked out a couple of hours later as Angela who has Parkinson’s disease. I was 39. You may be thinking, ah, there’s the reason she said fuck you to God last night. But it has never occurred to me to blame God for this. I never think, why me, because, well why not me? And, in the greater scheme of things, the fact that I have Parkinson’s disease does not come anywhere close to the top ten of really bad things in the world. That, of course, doesn’t mean that in my little world, it isn’t a big deal, because it most assuredly is.

So, let’s keep this narrative moving. I get this diagnosis of Parkinson's disease and suddenly I am different; my old life is over and the course of my new life is quite uncertain. Fast forward to nine years later I finally have to accept the reality that I am no longer capable of keeping a traditional full-time job, complete with all of the stressful things that come with it. So, I make the decision that it's time for me to leave. The decision itself is actually not all that difficult, because really it has already been made for me. The real issue is facing and accepting the reality of my situation. (Still not the part where I say fuck you to God.) But facing that reality isn’t even the hardest thing either. Because the work that I was doing in my previous life was never my passion. And even though there are obviously plenty of reasons to be upset about my situation, I actually feel blessed. Because there is something that I am truly passionate about. You see, the thing that I most love to do, the thing that I feel called to do, is to write. And now, I obviously have plenty of free time available. Ha.

Leaving for a moment the Hallmark portion of our heroine’s story, we come to the place where the rubber meets the road. Because now I’m trying to figure out a way to make this work financially. Good luck right? I have depleted most of my savings during my last foray into the world of freelancing, I don’t live with a partner, our government in all its wisdom tells folks that they’re on their own in the health insurance department, and let’s not even go to the worst economy in God’s own age. I tell you these things not for sympathy and I certainly am well aware that I am far from the only person struggling with these issues. The reason I tell you these things is that we are now getting very close to the part where I say fuck you to God.

I have been writing, but not as much as I want to and need to, and more importantly, I have studiously been avoiding writing about having a chronic illness. And this is horribly unacceptable to me. Because I have a book that I need to write and I’m not writing it. An artist friend said to me last night that between his art, his family obligations, and the work he does to pay the bills, he has very little extra time to spare. So he is very particular about who and what he is willing to spend that time on. He said that every moment he hears the clock ticking. I told him that I needed to take a lesson from him and buy a louder clock.

So last night, I’m thinking about the future. Notice the use of the word “the” and not “my” future. One very valuable personality trait I have is that I don’t look terribly far into the future, nice when you have a degenerative chronic illness. But last night I started trying to picture a cool little future for myself and as I broke into sobs, I realized that yes I am good at not looking too far in the future, so good in fact that unbeknownst to me (why should I tell me of all people) I had not only shut that door on the future but sealed it, piled a bunch of boulders in front of it, and just for good measure, dumped a nice layer of cement on top. That was the moment that it hit me that I don’t believe that I have a future, or rather I don’t have a future that includes anything to write home about.

Well, so the tears are flowing and you know that is always a good time to root around even deeper in those painful areas that we normally like to keep locked away in a safe place. And, to keep you up-to-date on the whole “fuck you to god” thing, we are very close.

So yes, here I am veering perilously close to the edge of what I like to call my downward spiral of doom. And while I do my best to stay very far from that place, sometimes you just gotta go there. So I start thinking about my scary financial situation, and I send out this thought to God (see I don’t do the traditional prayer thing, I prefer conversations) asking, okay, if this is indeed what I am called to do, then why am I living so close to the edge of financial doom? And my buddy God says to me, loud and clear – you need to write. And, seeing as how you’re so good at putting off the painful things, perhaps you need a little more fire under your ass (my God also has no problems using the vernacular).

Okay, I reply, but I am doing that. Writing. And God says, yes that’s all well and good, and good job by the way on that last story you wrote, (in my experience God’s a pretty decent kind of person), BUT.

Why does there always have to be a but?

But, you are not writing about what you need to be writing. You need to do that, you want to do that and you will do that. Take as much time as you need, seeing as how you’ve got all of this money in the bank and the luxury of time (my God is also a bit of a smart-ass).

And this, dear reader, this is where I told God to fuck off. So far I haven’t been smoted. But I do hate it when he’s right. And he is right, because what I need to do is becoming clearer to me. I don’t know exactly how it will manifest, but I know that I need to be a voice in and for the body of souls out there who are dealing with chronic illness and realizing how fucking difficult it is to manage and also how it also brings these amazing blessings. What an incredibly lengthy way to make my announcement that this will be the focus of my blog from now on. Yes, the joys of living with a chronic illness. I hope that you, dear reader will join me for the ride.

P.S. As God and I finished our conversation last night, he said, no worries about the fuck you, I’ve heard a lot worse.