"Hope is the thing with feathers"
- Emily Dickinson
A while back, I wrote about being angry at my body and struggling to find a way to appreciate what it gives me instead of berating it for not doing what I want. I’ve been thinking a lot about that lately and might be closer to figuring out the next step. But there’s a problem.
When I sat down to write about it, the first three paragraphs were about how angry I was. In some detail. That is, if by ‘some detail’, you read ‘extended and excrutiating close-ups’. I’m still more than pissed and it occurred to me that maybe, I should take a closer look at the angry, as it’s clearly blocking my way.
I re-read the post from about a month ago and was struck by the image of waiting for the universe to stop harassing me. I realized that I feel an immense sense of being ripped off. Apparently, some part of me have always believed that the universe wouldn’t be so mean that it’d give a 4-year-old a disease that would intermittently and regularly ravage her body for decades, without there being some sort of implied deal that it wouldn’t be for life. Turns out that in my head, 40 years is a long enough sentence for whatever karmic debt I incurred in my last life and now that I am in my 40th year of sharing my body with the arthritis, I somehow expected to be released. Except so far, my letter from the universal Department of Corrections has not arrived and the Enbrel, on which I have placed all my hopes, has, due to side effects, not measured up to expectations. Don't get me wrong, I am better than I was before I started it, but I seem to have stalled out on the progress. And that makes me angry. As well as – let’s be honest here - making me very sad.
So I started looking at the possibility that perhaps this was as good as it gets (which took a lot of deep breathing). That maybe my task was to accept where I'm at. I thought about how there is a fine line between opening up to possibility and waiting so hard for a future that you forget to notice the now. That getting caught up in what could have been, what should be, what isn't fair, in railing against the loss of yet another ability is counterproductive. That only being happy when my body cooperates is a recipe for being unhappy much of the time. And finally – and I have a feeling I’ll be working on this one for some time - that the arthritis isn't a punishment that will be over if I just stick it out long enough, that there is no purpose to it. That it just is.
The problem is this: I don't know the difference between acceptance and giving up. I am afraid of letting go of the anger - in some ways I think it is what fuels my fight, that going on, getting back up after another metaphorical fall is rooted in the anger. That hope - of all things - is related to my anger and if I let go of the rage, I will not just lose my feathers, I will give them up.
That was where my post was going to end, but then three things happened on Saturday. First, in my haze of sadness, I remembered that being on antibiotics for 2 weeks or more makes me weepy and depressed. I’ve been trying to carpetbomb the neverending sinus infection, in the hope that it’d go away. Regardless of whether it has, I have stopped taking the meds. Second, I watched Brokeback Mountain, which made me even more sad and in doing so, somehow accessed a truth. When I’m upset, having a peptalk doesn’t help without first being allowed to express my pain – the upset blocks forward motion and only when it has been expressed, can I see the path clearly. I thought again of how I expect my body to take it on the chin and only say nasty things to it when it hurts. I've started to, when I remember, thank my body, but this weekend, I tried something new: I gave my body the compassion I would want and listened to it express its pain and frustration and when I did, the muscles in my shoulders relaxed.
The third thing that happened was that I noticed the side effects to the increased dose of Enbrel I started a few weeks ago had likewise increased. Mostly, othe rthan the sinus issues, I noticed that I've lost weight again. At first, I was feeling pissy about it, but then I remembered that, in me at least, Enbrel seems to eat calories. Then I realized that in the last few days, I haven't been taking as many painkillers as before and that when I hurt, instead of taking a pill, changing what I do often decreases the pain. And that's when I realized that maybe, just maybe, this means that the Enbrel is blocking a little bit more of the arthritis.
So I think I may have sprouted a wee bit of feathers again. Perhaps it will be enough to get me to the next step.