Yeah, my birthday’s coming up. Not the one in the photo – I’m turning 101100.
Why binary code all of a sudden? Because this birthday, all my birthdays from here on out, are anything but binary.
For some context, please take a moment to read this excellent op-ed piece by Adam Baer in the LA Times, on the nature of chronic illness today, and the feeling some people dealing with illness have – namely, the need to keep a positive outlook, sound strong at all times, and resolute in their determination to “beat this thing.”
My friend T sent the piece to me, for which I was grateful, but of course it made me stop to think. Am I also complicit in being perky-positive, in making things sound like they will be just fine? I certainly haven’t told anyone I am going to beat this thing. I know, as Mary Elizabeth Williams does, that our odds are… well, odd. Yes, I did wear a KILLIN’ IT t-shirt to radiation over a year ago. Was that wrong? It felt right, then.
I don’t feel like wearing the same shirt these days when I go in for checkups. There’s a reason for it, though – my treatment doesn’t feel much like treatment these days. It feels like a lifestyle. Which is precisely the point of Adam’s piece:
Chronic illness is normal. We have to get cozy with that notion and keep the medically stained from feeling cast out from society, left to wince and wonder in private until they’re ready for some grand reemergence.
I think more than anything, I’ve tried to present my situation, my very frustrating and very changeable situation, with mordant (and sometimes very dark) humor. Humor is what sustains me. Is that weird? Am I being insincere? I’ve been in the care of a therapist since July, and according to her, I seem to be doing pretty well. I sleep well and without anxiety (off steroids, that is – and I continue to taper off those).
So perhaps in my case, laughter is the best medicine? One of the hundreds of supportive messages I got on Facebook when I was first diagnosed with melanoma was something like, “Melanoma hates sarcasm – deride it, Deborah!” Indeed, that is precisely what I have tried to do.
But I get serious/sappy/sweet too. It’s pretty hard not to. I love this world, as fucked up as it may be, and the idea that I might wind up leaving it even half an hour before I was meant to does not sit well with me. So I’ve tried to leave a fossil record, here on the blog, of how much love I am fortunate to have in my life. How much love, affection, understanding, support. How many people who have been there when it was needed, sometimes in ways they could not even have anticipated as being important.
I’m looking forward to this year. I applied for a job today, and another one last week. My brain still works, my body is reasonably healthy. This is how to count your blessings when you have a chronic illness. You don’t skip over the basics. So the whole thing can take a while. But when you have a chronic illness, you have the time for that sort of thing.
PS I showed up for my checkup with Dr P yesterday and found an empty waiting room.
It felt miraculous. For a moment I convinced myself that a great miracle had happened here, that all had been cured and I would soon be leaving as well. I even showed the photo to Dr P, who laughed with me. It was magical thinking, or it was a joke, or maybe a bit of both. Either way, it helped.