|This one is for Ashley and Dan, in gratitude. Dave and I love you both.|
It's a small thing, a scheduling error, but it leaves me crying over the sink, rotating the sponge in circles on the plate like a record player. I am a record player, my chip of diamond catching in the groove and repeating, repeating, repeating.
We do something wrong, my husband and I, we forget about a work obligation and so we have to cancel the weekend plans. It is nothing, nothing out of the ordinary, but just enough to splinter the thin exterior gloss that we skate on every day, and we fall through. For a moment we are suspended in that bleak space below the surface, acutely aware that since we cancelled the weekend plans, it means I will have been almost completely homebound for three weeks. David has done nothing but go to work and come home and I have done nothing but the dishes, the dog's daily walk, the shuffle of pills from orange bottles to plastic squares to my own throat, morning and night, a glass of water. Repeat. Repeat. Repeat.
We have come to understand, by now, that things are decidedly more complicated than we thought they would be. We like to tell ourselves that we are moving forward, a slow yet gradual climb but really, time inches forward in a tedious spiral. We move in these slow circles and after completing each rotation we get a little bit further from where we started, yes- progress!- and yet our life is still composed of circles. Over time, the looping makes us feel a little bit insane.
I am not in remission. I have a good week but then I catch a virus, just a little virus with a fever and swollen glands, how quaint. But while I wait for it to pass I have to pause my other medication and that is the very last thing I want to do. I do not want to stop this train, I want to run it off of the cliff and be done with it.
While we wait, we baby my liver with Milk Thistle and Glutathione. We're keeping close tabs on my liver with CBCs, but my eyeballs remain stubbornly bloodshot and opaque. What is it, the Bartonella, or the medication that we use to combat the Bartonella? Do we tiptoe backwards, carefully and apologetically or do we keep plunging ahead? That's not a question I'm asking you to answer. I just need you to know the type of thought that consumes me on the days when you don't hear from me. Please try and trust my team of doctors. Please try and understand how tricky this is.
But that's not real. Not to me. It is cheap for me to say that because that is not how I feel.
But here is the one thing that I have realized: it does not matter how I feel about my circumstances. Whether or not I feel satisfied by what constitutes my days- it does not matter because I am not entitled to anything more. I did not move willingly from the world of the healthy to the world of the sick, but then again, nobody does. Any moment of grace or joy that I find here is treasure, and I have found more of that than most people because I have been absurdly, obscenely lucky.
I thought I was owed more. My life until now has been so clear and carefree that it was easy to imagine that it would all continue to roll forward like that. I thought I was entitled to so many things, my health included, simply because I wanted them. But I was wrong. Thank god I'm finally beginning to understand that.
If you're interested in helping me get better, here is how, here is why, and here is how I'm going to say thank you.