So if you haven’t seen it yet, I made a pretty enormous announcement over on the shop blog. Some of you don’t even know there is a shop blog, so hey, it’s cool if you didn’t know.
Bodies suck, folks.
Right. Right: I’m still kind of stuck on that last sentence: bodies suck. Bodies suck, bodies suck, bodies suck suck suck suck suck, goddamnit, I knew this would be hard, so hard, and even still: oh, to hell with this forever. As hard as I try, as much as I want to be kind and forgiving to this body, as much as I want it to be about this disease and not this body, I am so full of rage and loathing today.
Today I admitted there was a thing I could not do because of my disease.
That’s not exactly true, because in actuality I admitted that a few weeks back, when we started Doing All Of The Things: this is a process, of course. Today I just started telling the world at large. It was actually harder to tell a few close friends, studio people, industry folks & family.
I hate this.
About a year ago- almost on the dot- I changed out my primary disease modifying medication from Copaxone to Gilenya in the hope that I might feel better overall and cut out my annual relapses. (I was also totally over shots, no lie.) I managed to avoid my annual relapse, but I didn’t get any better, which was disappointing. I had thought, last summer, that I had maybe another two years of dyeing in me, at most, so we began trying to adjust things in the business; moving to a more wholesale- based model and leaning more toward teaching. By early winter, though, it was becoming pretty clear that I wasn’t going to get that much time.
I don’t know. I hunted down every option I could: I soft- fired my neuro, switched up a metric ton of meds, took on two different physical therapists, got in with the pain clinic (and god, I’ve been afraid of that forever), met with a bunch of new doctors, all trying to scare up some magical… something that would make my work possible. It seemed everyone I met with asked me the same set of questions, though.
“Are you still working?”
“What do you do?”
And then I’d explain it to them, because almost no one does this work, and they’d look horrified, and we’d discuss Uhthoff’s Phenomenon, as though I didn’t know what that was, as though I hadn’t known what it was since I was diagnosed, which, incidentally, was right after I’d decided to open a business as a dyer. Because you know, life is funny that way.
I was holding out, really, on meeting with my new neuro at the Hopkins MS Center. Surely they’d have my magical miracle. If there was pixie dust to be found, some sort of sciencey- wish- come- true potion, they’d have it, a combination of physical therapy, diet, drugs and mindset that could make this body just up and Do The Damn Thing, already.
I spent about twenty minutes sobbing in my car after that appointment, obviously. It was over.
I grew up in a blue- collar family in New England. We saw the doctor once a year, unless one of us did something awful to ourselves, because doctors are expensive and there were four kids in our family. If we got a cold, or were otherwise unwell, my mother used a home remedy on us, or we were told to suck it up and move on. Rub some dirt in it, that sort of thing. This is pretty typical for folks who grew up in my socio- economic set: my husband grew up the same way, as did many of my friends at the time. I don’t subscribe to that theory these days, but I’ve also lucked into really, really good health insurance. That’s how it was, and given the circumstances? It made sense.
I was the oldest, so I was also free labor a lot of the time. That’s also pretty normal for the oldest kid— Oldest Kids, chime in with me here: I’m not alone on this, right? I remember cutting back rosebushes, helping with the garden, painting fences, that sort of thing. You just help out, because you’re the biggest and you have the strongest back.
Here’s the thing, though, about being broke and being free labor: sometimes, you felt like crap and you had to do things. Hard things. There wasn’t any option. Sometimes, your folks had just taken on this new place they were renting and it needed all this work before they could move in and you and your step- dad really needed to sand the floors and paint stuff and whatever and if you felt like hammered hell? Too bad, so sad. There wasn’t any money for a doctor and stuff just had to get done, so you just did it, and it got done. You had already learned not to even ask for a doctor. You just got up and did the thing. Broke folks all over the country are doing things like this- and a lot harder- every day.
When I was out in the world, I joined the service, and that’s a bit of a trip, too. If you’re in the military, there’s an assumption that if you’re in and you’re not on a pregnancy profile or 2 years away from retirement then you’re either perfectly capable to do any physical task assigned to you— you got into the service, after all!— or you must just not have enough drive to accomplish the task. Now, maybe it was a personal goal, like running a 5k; that’s a personal failing. No big, you’re just lazy. If it’s a professional goal, though, like meeting physical fitness standards, you’re a giant screw- up and it can impact your career; people would blow out knees over that sort of thing, sometimes because they came from backgrounds like mine.
Between those two spaces, I picked up this idea that really, I could push this body to do just about anything I wanted it to if I only had enough desire, enough drive, enough want. I just needed determination and discipline; anything less was a personal failure. In actuality, it’s shocking what I have been able to bully this body into doing; equally shocking, of course, is the toll it has taken. I am falling apart, coming loose at the seams, and no one on my medical team is at all surprised, which is of course embarrassing as hell. I am not, it turns out, capable of bullying myself into submission forever. My body has turned on me, rebellious and angry; fair, as I’m angry at it for not playing the game I’d wanted, too. Are we at war now? I think it’ll win, which means no, not a war, or more accurately: perhaps we’ve been at war for years, I just didn’t consciously admit it, and now I’m waving the white flag.
I’ve been bullishly pushing for so long, too long, and I need to stop. I don’t have much of a choice, which… hell. There is that. I don’t know what to do with that. I’ll just live with it, because it is unavoidable.
I don’t know what comes next. I have a plan, a small one, because I can’t seem to get my head too far around a life that doesn’t include this space, these people. I won’t be leaving the life (I think of it as The Life, for crying out loud): I’ll be doing some work for Cooperative Press, which is lovely, and bless them forever for taking me in. I’ll be writing patterns, too, of course. Just plain writing, I think: I see a lot of that. Narration, that’s in my future; I’ve done some commercials, a few small audiobooks, one so OMG terri-bad that I don’t even want to talk about it (except I kind of do, it’s hilarious and I’m really enjoying the superawful ones) and I’m in the middle of one now that’s pretty alright. That work is not only enjoyable but seems so funny to me after years of jokes from friends: “Sarah, do you know what you should do?” Yeah, well- Jason, I’m doing it now. Meditation is probably an avenue for me, I think; I’m trained, and after over 20 years, I know a little about that, too.
Rest, though, first. It’s a strange idea. I don’t know how to do that; I’ve never been any good at it. Even in the middle of relapses, Sam’s always needed to hide my laptop and devices from me; I am not good at not working. I want to create a Plan For How To Rest, that’s where I am with the idea of resting. I want a limitation on how long I rest, too; I’ve written my neuro, He Of The Diet Mountain Dew, to ask him how long of a recovery period he thinks I really, actually, seriously need. I am actually that idiotic, you guys. Here’s hoping I’ve learned a little, and can do better.
Tonight, I’m going to curl up on my couch with my tiny dog, my giant dog, some tea, a giant piece of chocolate cake and my laptop and scroll through pictures of the last 2.5 years in the studio. Oh, we built a really amazing thing. I’m just not ready to stop being in this place, doing this thing with these people every damn day. I know it’s killing me and some days I just don’t care: I love it so damned much. I am going to miss this with every bit of my broken heart.