Story Thirty-Five

That time I finally told the truth.

Do you know the word for that thing that transports you from one room to another? It has two different states of being, unless it’s in the middle. It can stop people or let anyone get anywhere. It’s like a portal but with fewer magical or scientific combinations. In Latin it would be ostium depending on where it was, in Dutch it’s deur. It’s that wood bit in-between the rooms, with the handle on it that sometimes locks? It’s not a portal, or a transporter. It isn’t an egress, excepting when it is, but that has the wrong inferences.

Door. It’s a fucking door. And I will sit there for twenty minutes staring at the goddamned thing, trying to figure out how to recall this word that I’ve known since I was perhaps three. You know the frustrating thing? It’s my job to know words. Still, when I need to know the simple word “door,” sometimes all my injured brain gives me is eight different languages that I am not looking for; the language part of my brain is fucked.

Sometimes I feel like myself, and sometimes I’m proud of Overcoming It All like a good girl, and sometimes I just want to throw myself off a bridge before I can get my hands on the next passerby and do something that they don’t deserve. Because this isn’t fucking fair.

The one thing I’ve got, the one thing I’m good at, the one thing people have always noticed me in a positive way for is my faculty with language.

You know when I realized that I’d lost that? It was earlier this year, I don’t recall when, maybe it was last year. But it was after Russia attacked Ukraine and I went with my best mate and professional partner of nearly a decade to Germany and the whole trip turned on the fact that I’m fluent in German, and then I realized the only German I could speak was the words I’d written in advance or knew to my bones, the way I can swear fluently but forget the word for door.

I can still access my language when I’m angry for some reason that escapes me, so arguing with an editor or saying “I’ll be there Thursday” or “you owe me a hundred bucks” is fine but we got off the plane and I couldn’t order a taxi because the driver was fucking Austrian and I got flustered, not angry. I’d lost my walker, and I hadn’t spoken German in years, and I don’t have the accent I once had, and it was 2 AM and this man was (in the brusque way that most middle Europeans are) impatient with the fact that I was pronouncing Weitz more like Weiss, and also he didn’t know the street and I didn’t know the neighborhood, so he started speaking quickly just to ascertain where the fuck I wanted to go, and the lights were bright and my brain was telling me that the lights and the smell were wrong and I’d never been to Berlin and I couldn’t cry because I had to be the one who spoke German at that hour to get us home.

I realized in that taxi that I can see German. I can still write it, and when I’d been speaking to people and lost a word everyone just wrote it off as me not being a native speaker instead of thinking “wow, she doesn’t even know how to spell Tür.” I can’t usefully speak it anymore, and I was in a foreign country and I couldn’t handle an Austrian accent and there were cobblestones that broke my walker.

It’s fucking terrifying, being disabled. But nobody talks about that, because the people who already understand that don’t need to be told and the people who don’t either don’t care or would care too much: how am I supposed to tell my family that sometimes I can’t bear to hear them because apparently I have misophonia now? My youngest kid picks at things mindlessly, just spends the whole day finding chairs that squeak, and she loooves slurping pasta. My firstborn has this constant audible narration which is only because she’s autistic but sometimes I want to shake her and tell her that mommy has a fucking headache and I can’t be alert, all the time, could we just please all have ten minutes of quiet, but then if I ever said that I’d be stomping on her joy, and how does one express that to a middle schooler?

And their dad, dear LORD, I want to kill him most days because he has this unconscious habit of swirling spit around his mouth and you can hear it in the next room. I can’t even watch a kissing scene on a shitty TV show these days because it’s too much noise, too much spit, too much everything. I haven’t watched porn in years if I’m quite honest. It doesn’t quite turn my stomach (the medications do that quite well on their own) but it makes me recoil in a way that’s hard to explain because I literally fucked that guy and childbirth ain’t not audible and they are my whole heart.

What I do is I recoil. I spend most hours of the day and night in headphones, which has lead me to a few just adorable ear infections. It’s not like I’m at my least repulsive either these days. It’s just that I’m so fucked up and it’s not the kid’s or their dad’s fault and I’d rather lie to them and say that I just can’t handle sudden noises than I would tell them that they’re using their mouths wrong. Because they’re not. They’re not the fucked up ones, I am. I was pretty fucked up before 2329 CST on May 29, 2020, but I even know the minute that I became this avoidant.

Most people who become disabled in a second don’t even get the luxury of knowing what happened to them and when. I have time stamped photos. 

And how am I meant to tell a stranger on the bus or in a shop that I’m not trying to hold them up, I’ve just temporarily forgotten how to pay for things and if we can all bear with me for just a second I’ll remember both the word for the colorful thing I have in the leather thing and also where I keep it, and I’ll just hand it to the nice person at the register and they will make this all go for us all? 

I know what I look like. I got a couple good years in there, where I got to be pretty and not some kind of freak show, but now I make jokes about how I look like a pirate and they are honestly funny but also there’s so much mourning I have to hide when I’m speaking to someone who doesn’t know. I spend my days making sure that other people are comfortable with my living among them, apologizing reflexively to them when they run into me while I am sitting still, simply below their eyeline and I know that if I dare buck up about this I’ll get the same kind of shit I did when I dared say that I wouldn’t make way for men on the sidewalk any more than they chose to act politely to me.

I know that this is all a bit maudlin, and I hope that you have seen that I toss in some jokes to make it not too uncomfortable for you, because that is what I’m supposed to do. It’s my job to make strangers connect to me, to make them look at the world a bit differently. So here’s what brain damage looks like— I’ve been lying to everyone important in this story. It’s relevant that they all know it, and have been quite kind. The silver lining of disability, if you’re lucky, is that people just sort of never want to say out loud that they’re mad that you fucked up, it’s just a thing we don’t talk about. Sometimes I fuck up on the very most important things and the thing that people feel about it is mild-to-moderate annoyance, but mostly pity, which is why we simply never speak of it. How would you even?

But here’s the story:

My mentor, honestly my favorite person in the world besides my kids, was Barbara Ehrenreich. She was a writer who was just fucking curious, man. And she wasn’t just a writer, she was a scholar and a journalist and despite the damage she carried (because nobody just goes undercover as a minimum wage worker or delves into the notion of happiness as both a spiritual and neurological state if they’re quite well-adjusted) she was one of my favorite humans.

I think Barbara knew how I was going to live my life when I wrote my book. I know her because she called me once and asked me if she could write the foreword, and obviously I was honored. And from there, she was my rock. I’m not even sure if my own mother knew when my book was published, but I know that when internet trolls sent me the very worst things it was Barbara who taught me how to deal with it. I know that she made sure I wasn’t taken advantage of, that the very act of attaching her name to my work assured that very few people would fuck with me.

One time I was speaking at a literary conference. I can’t tell you how fresh I was, I’d never been to any kind of conference and I thought being a speaker was just what happened when you had a couple pages in the fall catalogue from Penguin, so I got out my highlighter and packed my schedule but I was afraid of being too bold because these were educated people and I was just me.

Barbara sneaks into the back and finds me and tells me to keep my fucking mouth shut and put my hand under the table. Not two weeks earlier a man about her age had said the same, well before #metoo so you can imagine what it meant to be with someone who could use those words differently, and I thought it must be chocolate or something. It was not chocolate.

She had three carefully-wrapped joints that she’d personally flown into Texas because, and I quote, “TSA never looks in an old lady’s pack of cigarettes too closely, and you never know how good the weed will be at these things.”

I will always cherish the trust she showed and the lessons I learned in that instant about what she wanted me to hold on to. She wanted me to keep the weed under the table, but keep on being me. Marijuana dries out your mucous membranes, which fucks with my bad eye, but damned if I don’t occasionally have a joint even if it hurts just to remember what love tastes like.

Before she died, she went downhill. I spoke to her, but it was difficult because I was recovering and only forty and she knew she was degenerative. Sometimes I’d call her when I didn’t mean to because I just needed help, and she’d answer because she was in and out at the end but she knew me, and we’d chat for ten minutes about colors. We talked about dying a lot. I’d somehow escaped it, and she couldn’t, and we already had a weird gallows humor because we only ever talked to people about the worst things in their lives. And yet she had this insouciance until the end, even at the last when she was just exhausted. The last call I had with her was maybe five minutes long. She was clearly wasted, barely knew who I was, and if you know me you know I made fun of her for that. And she came around for a bare second really, and she told me not to fuck it up. And then she said she was tired, and then she died a few weeks after.

I was supposed to go speak at her memorial, along with luminaries like Cornel West. But I’d been shot a few years ago and I couldn’t do details or even answer the phone for a few weeks and so the organizers and family decided to replace me as the speaker. Barbara is, if there is a somewhere, smoking a joint and laughing.

But that was a woman I desperately wanted to honor, and being honest I could not have physically managed the trip even if my brain had been able to handle emails.

That is disability.

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