Norman: Yeah, it’s a strange time. . .I’m not sure I feel like I am surviving. The last few weeks I’ve found it progressively harder to work in every sense. I should consider myself lucky, I have a manuscript due to the publisher in one month, and therefore there’s always at least a small chunk of my day that MUST be devoted to that and nothing else (i.e. news twitter). For me, there’s always the physical factor because I’m ill, and that I’m used to. I’m not used to being, like, spiritually exhausted. I’m used to wanting to work and finding it challenging because of illness. I’m not used to the feeling of just. . .not wanting to do it in the first place. I don’t know if it’s coming from a place of futility, or exhaustion, or both.
So, I find myself taking my dog for longer walks. Which is probably good for both of us. I live on the Maine coast so we can spend a lot of quiet time in nature which I’ve found particularly helpful. I’ve found myself harkening back to what made me happy as a kid, too: new books that aren’t work related, watching The X-Files before bed, dance lessons. I do ballroom and had gotten to the point over the last few months where I really couldn’t afford it anymore. After the New Year I finally said, you know, fuck it. I’ll find the money. Because I can’t give this up. It’s literally the only non-work related thing I have. It’s physically good for me. And it’s fun. And I’m good at it. It’s not something I show up at and fail at, which is probably a good confidence boost. It’s not like waking up and getting on the internet and having people call me a feminist slut and telling me to kill myself before 9 AM, you know?
garcia: Would you like to talk about your illness? I don’t want to push you to reveal anything you may be uncomfortable sharing.
I understand that feeling of futility and spiritual exhaustion quite well, I think. Lately, I think I’ve become more fatalistic. I think to myself: we will survive, because we must, or we will die, because we will. It’s made me feel like I have less to lose, and thus I feel more open about how I’m feeling and what changes I want in this dumb world. I’m not sure if that attitude is exactly survival, but it’s something.
I’m glad to hear, though, that you have small pockets of self-care. It’s strange what a radical act self-care has become. What books are you reading? What made you interested in ballroom? Where are you in the X-Files (like what season)?
I think there’s been such a strange attitude lately–mostly of people in positions of privilege–of being consolatory toward folks who would literally tell you to kill yourself. But fuck those people. Fuck anyone who would say such vile things to you. You’re better than them, infinitely, and you can take some satisfaction in knowing that their pathetic lives will be spent rotting neck-deep in the viscous garbage that is their own opinions. I would like to place those people on a bicycle, push the bicycle into a lake, and then hurl the lake into an active volcano. I don’t like them.
That’s probably little comfort, of course, but I do hope at the very least you know that you have a supporter in me, and that I will personally challenge anyone who is mean to you to a fist fight.
Norman: Well, I’ve practically built my career on being transparent about my myriad health problems, which were initially of repro nature. I was diagnosed (rather: fought to have the diagnosis I determined confirmed by doctors who thought I was hysteric) with endometriosis several years ago. That’s the subject of my book. Over the last year or so, after struggling with it for about six years, I’d finally started to feel as though I had a handle on it. Then I got shingles, which really fucked me up for a few months. After that, in the spring of this last year, I started having trouble thinking/speaking. My left side went numb. I was terrified I’d had a stroke, which can sometimes happen after you’ve had shingles. Long story short, 9 months worth of testing, and the doctors I’ve seen think its MS. I have some shit going on with my spine that looks freaky as hell, but of course no one has taken the time to explain it other than to call it demyelination. Naturally, being a writer with a proclivity for investigating things at 2 AM, I’ve been spending a lot of time in the Annals of Radiology trying to disprove their theory, but also not liking the looks of the alternatives.
How this shakes out in my day to day life is that I’m very tired and in a lot of pain most days. While the numbness resolved over the course of a few months and is now intermittent rather than constant, I’ve still struggled with certain neurological quirks that’s really given me a crisis of self. I’ve always heavily identified with my intellect, particularly as it pertains to my ability to write and speak. Having that be so imminently threatened has depressed me beyond measure. Imagining that I will soon likely lose my insurance, and no longer be able to experiment with medications that have given my glimpses of normalcy and relief, is beyond depressing. It’s put some of that fatalism in me, too.
But, so too has it put a fearlessness in me. I haven’t got anything to lose except everything. My quality of life, first and foremost. The course of the disease is unpredictable and there’s no way to know, for sure, what particular iteration of it I’ll have or not have. I’ve been told by one specialist that I likely won’t know anything about its progression for at least ten years, because it’s all assessed retrospectively. So, I figure I can’t count on anything. But y’know, no one can really. I guess I just have a more deliberate framework of uncertainty in which to operate.
Self care has always been somewhat radical for me, I think, because it often is for women. I’ve always felt guilty about it. Now it’s just more en vogue to feel guilty about it. As sick as I am, I still feel guilty about even doing things that are arguably quite necessary to my well-being, to my ability to function day in and day out. I often think I’m making things worse by trying to “hold out” and “grin and bear it” as long as possible. I think prevention and proactivity has been cross-wired with indulgence somehow.