I have a friend, Cinjun, who understands that some illnesses might end, but they never go away. That’s why, almost two years after my stroke, he asked me what my “new least favorite thing” was. This, by the way, is the best question you can ask someone who is Big Sick. Forever Sick. The stroke was a symptom of Ehler’s Danlos Syndrome, which means all the collagen in my body is coded wrong— as poorly as I did in biology, even I know that means it’s useless.
Without blinking, I said, “Andy— my husband— he has to wash my hair. My right shoulder is in a permanent brace because it keeps falling out of socket. There’s no connective tissue in there.”
For a moment, Cinjun studied me. And there is a lot to study. I’m one affectation away from being one of Royal Tenenbaum’s children: I have a cane I spray painted with purple glitter where I wrote, “THIS MACHINE KILLS FASCISTS” on the side; I’m in a shoulder, knee, and ankle brace, pretty much always; I have silver figure eight rings on six of my fingers to keep them from breaking and dislocating (especially when I turn the steering wheel); and I have brown tinted lenses in my glasses. My left eye droops. I have a bluebird tattoo on one wrist (for David Bowie’s “Lazarus”) and his Blackstar album artwork on my other. Now you know, too.
“Last time I saw you, you didn’t have any of these things,” he said, motioning.
“It was my eye. It was still bleeding,” I said. “That was my worst thing then.”
He nodded. “But you said it’s your hair.” He looked thoughtful for a moment, even more so than usual, and then in a moment I won’t forget, he said, “We ask the wrong question when we get married, don’t we? Because we ask if we’d take care of this person if they got sick and of course, of course we would, or we wouldn’t be with them. But we should ask ourselves if we’re willing to be vulnerable enough to let this person take care of me.” He leaned a little closer and said, “Andy does it because he loves you. Don’t take that away from him.”
I didn’t explain to him, fully, why the process is so frustrating— honestly, at that moment, the little indignities of the act seemed to disappear. Sure, it’s really hard to give up control of something that seems as simple as washing my hair. Showers, though, are a two-pronged assault for me. Even before the stroke, my routine was so prescribed as to be the most obvious manifestation of my obsessive compulsive disorder. I have a formerly very complex order and timing on every product, down to ten minute conditioner and a cold rinse.
I could teach Andy those things, but it became immediately clear my order, timing, and regiment was completely unnecessary. It took me a while to acknowledge, even to myself...that wasn’t the real problem. It’s the “eye thing.” When it’s raining outside, I use my hand as a visor to cover my eyes. In the shower, I spend every moment trying to make sure water doesn’t get in my eyes. Now, I sit in a shower chair and guard my eyes, even though this complicates dodging the water. I cannot have anything in my eyes.
I have a clause in every syllabus for every class I teach that says, “If you have pink eye, STAY HOME. I don’t do eye drops.”
Having Andy wash my hair is a litany of tiny moments that remind me I’m sick. I constantly feel like I’m drowning. I can’t control where the water touches. I can’t brace for what drop might hit my face.
Besides, my hair goes halfway down my back. I’m 33. You don’t keep it that length unless you’ve got a “thing” about it. I’m not vain, but my hair has been long for over a decade. When I told my doctor I couldn’t wash it anymore, he suggested that I might be young and pretty enough to pull off the Sinead O’Connor look. I think it was the first time he saw me cry.
I’ve always had what my friend Tiffany coined the “eye thing.” My dad would vouch that as a toddler, I would put a washcloth over my face for him to pour water on my hair. (This sounds like waterboarding now, which still sounds better than a drop of water in my face.) I’ve just always had the eye thing.
It’s not just water. Altered eyes bother me. Movies where aliens have goat-eyes, pupils straight across. Women who wear cat-eye contacts. If eyes are the windows to the soul, what is so wrong with a person’s soul that they mask it? It’s one thing to be covered in tattoos. Covering up your eyes… that’s suspicious.
The “eye thing” manifested especially and maybe most profoundly in 1998, as my favorite thing to do by then was walk around record stores for hours. Sometimes this meant my dad would take me downtown to huge Dallas warehouses full of CDs and vinyl; sometimes this meant I got a huge rush out of being left alone to explore Sam Goody (formerly Blockbuster Music, eventually FYE) by myself at the mall. In mid-September 1998, Marilyn Manson’s Mechanical Animals was released, and the advertisement, instead of a poster, was a life-sized cardboard picture of him, naked but encased in a blue-tinged Photoshop of a doll-like body— no genitalia, but the implications of completely subsuming both masculine and feminine qualities— and with bright red contacts that matched his fire-engine-red streaked hair. I was twelve— almost thirteen— and I wish I could tell this story without admitting that the picture scared me.
Not because of the nudity. Not because the look on his face was menacing or even because he looked as though he might pop out of the advertisement at any time. Because those red contacts spoke of something in the uncanny valley; Manson had achieved something that looked almost human. Of course that was the point. The album was literally titled Mechanical Animals. Red eyes straight from hell.
Years later, I’d find solace in that record, especially in the mostly-acoustic, David-Bowie-in-space “The Speed of Pain,” the satirical “The Dope Show,” the tremolo-drenched and still distant coldness of “Dissociative,” and the funk bassline in “I Don’t Like the Drugs (But The Drugs Like Me).” Again— that was later. I wonder sometimes why that was the first record of his that I bought. I held that CD, a decade after it was easy to find a CD store at a mall, muttering to myself the whole way to the cash register, “The eyes don’t scare me, the eyes don’t scare me.”
When I first started having the stroke, I didn’t know I was having a stroke. I thought I was having a migraine. I get cold so easily, but that January morning, the slurry-side-street-snow seemed to be giving off heat waves. When I finally finished the dizzy trip in to work, I called Tiffany and asked her to take over my first class, because “I would be fine by the second class.” She found me in the passenger seat of my own car with all of my top layers of clothes peeled off, holding my undershirt up to my bra line. She cancelled my classes and drove me home.
I was just so dizzy. It felt like an arrow had been jammed— not shot— through my left eye socket. Why are the migraines always in the eye? I hated myself. I do not call in sick for a migraine. Or I didn’t. Maybe I still don’t. I am still working out what I am OK with in terms of my body and how much I allow it to interfere with what I want to do; my body is still working out what it is OK with in terms of how much it wants me to do.
I slept it off. But I kept waking up dizzy— no big deal. Pop a few more Excedrin Migraine and Benadryl, put some ice on the back of my neck. Always works.
It never works. But if I say it always works, then sometimes I’m able to psych my brain out and tell it we are not in pain. Did you see the switch there to a plural? Good God, is that intentional. It has been me vs. my body since as long as I can remember. The part of me that is writing this essay is at war with the body, even though it needs the body to be honest with you— with me.
The brain doesn’t want me to tell you about this kind of weakness. I’m watching my chipped black fingernails clack an existence I lie about into being. This is what happened. Sometimes I can’t even believe my crooked fingers will type it out. So when I tell you it works— no, it doesn’t— that’s because that’s how I’ve had to talk to myself for most of my life. Maybe the inverse.
No, it doesn’t.
I will not give you a parenthetical on this, even though I’m obviously fond of trying to bury information. You know what I mean because there’s something you lie to yourself about, too, but it talks to you at night. But my body and brain still know when they ought to stick together.
The day after the migraine started, I’d promised to help paint sets at my stepdaughter’s school. I’d been a theatre geek, and it was nice to be back onstage— any stage, doing anything— just for a little while. But I immediately went in the bathroom to throw up in the too-close-to-the-ground toilets and look in the too small mirrors at my suddenly blurry face (most middle schoolers are taller than me: why was the bathroom set up like that? Maybe it wasn’t. Here is where I become a very unreliable narrator). I figured the paint fumes were getting to me, but my face seemed so pale. I threw up again for good measure and then told them I I had to go home.
The worst part? I met a friend Ashley for lunch after that because I’d cancelled on her a few times too many. After I threw up in the Mexican restaurant’s normal-sized toilet and picked my stepdaughter up from school, I decided to try my migraine cure that always never works again.
I guess it was four hours later when everything fell apart. Fell down? The left side of my face fell completely, and I looked in the mirror (between throwing up) and knew what was happening. Thank God my husband was on night shift— they mobilized. My poor stepdaughter. She was as calm as you could expect a barely 12-year-old girl to be. I think.
There are a bunch of redacted scenes here. Not because I don’t want to embarrass myself: I did that when I described my current hair-washing routine. I just don’t remember. I do remember hearing my husband intimate we didn’t have enough time to wait for an ambulance… “We don’t have time for that.” But I don’t know if he said it or not. Sometimes, Andy and I have moments of telepathy. I’m not sure which one of us was thinking that the hardest.
What I do remember is when I woke up in Neuro ICU, I wasn’t spinning anymore. The world was finally still. But when I opened my eyes, I had what I called “spider eyes.” I’m not sure now if I meant it seemed like I was looking through a spider’s web or eyes with a million tiny refractions like a fly. Does it matter? Both work. I might not have been dead on the money, but I was pretty close. I remember saying, “I can see too many.”
Whatever had happened to my eyes, they were going to have me see a neuro-ophthalmologist. They don’t usually visit ICU, so I had that to look forward to during my stay at PT rehab. (I never knew there was any question as to whether I’d make it to the rehab center until I started writing this essay and asked Andy for a timeline. He protected me in ways I am still learning.) I wanted so badly to watch TV or read something, just anything to get my mind off the pain. Sometimes Andy read to me. Tiffany’s husband Rob, who has been family since I’ve known him, brought me a Bluetooth speaker, and that helped. I began playing David Bowie around the clock, 24/7. I loved his later work and industrial phase in a new way. I wasn’t just hearing the gears grinding and the clocks ticking: I was hearing the space between the noise, the first thing that seemed melodic in a long time.
I lied. I am vain. I want my hair long. I want it long forever. I want it long so much that I will risk feeling guilty or humiliated or little or sick. Do you know how pathetic that sounds to me? Even with my own justifications? But damn if it’s not true.
I made up a hundred tiny events it needed to be long for, but they’ve all passed. I can’t pull the trigger. Maybe it’s the whisper of Cinjun, the conversation still living somewhere in New York: Let him love you. Don’t take this away from him. It is probably something more selfish than that.
Amy, my close friend, owns a hair salon. She has allowed me to have some fun with all this length while I’ve mourned that I’ll need it short eventually. We both know it’s a little bit of a time bomb. Last time I went in, I told her I wanted Tori Amos red from the early ‘90s. In almost every light, that’s how it looks, and it’s magnificent. In other lights? It’s almost better. Fire-engine-red. I hate looking in the mirror— my left eye still droops. I guess that’s it’s own “eye thing”— they won’t ever match again. People closest to me say they can’t tell, but I’ve had strangers ask me what happened, so that is a pretty good indicator. It also dilates differently than my right eye. They look wrong. But now the fire red hair… it seems right that they’re a mess. Or at least that it doesn’t matter.
Let’s go to the rehab center: I promised you I’d show you that. I had a brain stem stroke, so the right side of my body was affected: I have full right-side neuropathy. But the left side of my face was also affected. Sometimes it feels nothing, sometimes it feels like ants are crawling on its dry surface. The eye doesn’t self-lubricate. I have to use eye drops constantly, more than once a day. I usually have to choke back vomit, but no one has to sit on my chest anymore.
Eventually, my eye was so annoying, I didn’t even try to escape when it was time for me to meet with my most dreaded doctor: the neuro-opthamologist. I was immediately suspicious, just because he chose to work with eyes as his profession. I feel like that says something about a person.
My mom flew in with my dad when they heard I’d “gotten sick” (this is what we still say so we don’t have to say ‘stroke’). She wheeled me down to his office, and upon seeing my face react to the fluorescent lights in the ceiling, the doctor turned them off and turned on a yellow-brown light on his desk.
“Hello Katie,” he probably said. There were probably other niceties. I’m bad at small talk, but I remember with absolute clarity when he said, “We’re going to have to use eye drops to dilate your eyes.”
“My right side doesn’t function as well,” I said.
“It says your left eye is affected.”
“That’s true. I was just going to tell you to stand on my right side. That way I can’t kick you.”
I’m sure my mom said, “Katie!” But whether she did or not, he took the advice, which was good, because these drops actually stung. Usually I just hate the sensation. But I couldn’t feel it on my left side— until it was like throwing a match on it.
“This is actually pretty cool,” he said. “You might like this.”
I decided not to like whatever came next.
But then he shot light into my pupil and told me to look at the ceiling with my good eye. “What do you see?”
I felt stupid to say it, but I said trees. And he was right: it was cool.
“Very good,” he said. “That’s what it’s supposed to look like. Those are blood vessels reflecting back on the ceiling. Let’s try the left eye.”
Ghosts, I said with certainty. There are ghosts in the trees.
He shook his head and wrote some things down. I was going to need glasses, which meant more eye drops, which eventually meant Andy helped me pick out frames that looked like Daria’s. Later, when they needed to be tinted and those frames were agitating my tear duct into bleeding, he helped me find frames that masked the brown a little and sat a little softer. Because these aren’t normal glasses: they’re layered. I can see better without them. But one coat on my left eye is a Prism lens and holds my pupil in place. The brown makes it to where backlit screens don’t make me throw up. There are a lot of factors.
I have green eyes. Good luck seeing them.
“I’ve got my stupid tinted glasses,” I announced to a class my first semester back in the classroom. “If you’d like a chance to make fun of them, now’s your shot. Whoever has the best joke wins.” I often create arbitrary contests with no prize.
“Oh,” said one of my closest students. Their voice was full of a pathos usually reserved for people less precious about illness than me. “I’m so sorry. It’s OK, though. My dad has tinted glasses.”
“Really?” I asked. “Well… thanks. That makes me feel a little better.”
Then they smiled and I knew I was sunk: they were about to win. “Yeah, but he’s almost seventy, and he’s an asshole.” Everyone in the room, including me, fell into laughter.
This is why you should pit your students against each other. Weirdly, it always creates camaraderie. Well. In writing. In undergrad. Thank God that’s what I teach, right?
Tiffany’s birthday was last week. We went to see Marilyn Manson and Rob Zombie. I first learned how to love hardcore and industrial when she was my boss in the college writing center. Now I teach with her. (That transition was weirdly smooth.)
Manson gave up shock rock long ago, you know? Mechanical Animals was actually a turning point in his career. The singles delivered classic Manson sound, but it’s a much more melodic record than it gets credit for. I think this is because people do not actually listen to Marilyn Manson: they see full-sized cardboard cut-outs and it scares them. Is it the eyes? It will always be the eyes for me.
Before the concert, I was braiding my red hair and just realized, the unnatural tinge, the brightness, the fierceness that I was hoping said, “Stay away from me, I am a dangerous creature”— it was the exact same color as his was on that album cover, years ago. (Manson’s switched to a respectable punk black.) I was trying to draw the eyeliner straight enough on my right eye that it looked like they were both the same size, and it was growing more and more frustrating. Finally, the record clipped over to “The Speed of Pain”: “I wanna outrace the speed of pain/ For another day…Lie with me, die with me, give to me, I would keep your secrets/ Wrapped in dead hair for always.” It’s always the eyes and hair. Well— I’ve told you my secrets now, haven’t I? What more do I have to do to redeem myself to you? You know that I got lucky and survived something I shouldn’t have, and still, my New Worst Things are that I want my long hair to stay like it always was and I miss my stupid green eyes.
One of the strangest behaviors I picked up while I was sick was being more honest on Twitter than I was in person. That way, I could be vulnerable and anonymous. I wasn’t a real person: I was a list of symptoms and a few punchlines strung together. One of my favorites was during a particularly bad eye bleed:
@kwdarby: Between the oddities of my conditions & the blood thinners, there is enough blood coming out of my eye/nose to be an @andrewwk album cover.
12:25 AM, 6/30/2017
He responded with the shocked emoji and a heart— a strange enough reaction from a stranger who literally had someone break his nose for his first record cover, I wasn’t sure if I’d somehow concerned Andrew W.K., or if I’d made a good enough joke that he wanted in on it. Who knows. I still don’t.
Andy does a good job with my hair. What, you didn’t think this was some essay that was going to end with me defiantly taking control, maybe cutting it all off myself? “She got better at eye drops,” you might think. “This was misleading. I thought she’d realize what a waste of time it all is.” Hell, I started by referring the Royal Tenenbaums— there’s a pretty memorable haircut scored by the seething Elliott Smith track “Needle in the Hay.” Her poor husband. Go on. Think it. I have to fight myself not to think it every time I ask for help.
Know this: by now, I was supposed to have cut it off. I didn’t mean to set up a scenario where there was catharsis at the end— I was supposed to be writing this with my hair barely grazing my shoulders, not bright red and longer than it was when I started the year. I didn’t mean to lie. I don’t know if I’m apologizing to you or to myself.
Staring at my eye and hair in the mirror I hate so much now, I think about how fast pain moves, how my body and the brain disagree on it. What is pain but a receptor in my brain lighting up? And if that’s all it is, then why can’t I tell myself it doesn’t hurt?
What is an eye except something that takes the world and flips it, first upside down and then right side up, another thing lighting the brain? My eyes exist to communicate information to my brain about my surroundings.
But what is my brain if not unreliable? Do you know how hard it was to find every tiny lie in this essay, to tell you the truth? And who do you tell about every little development in pain? No one. You can’t. It’s too heavy. You spread the information around. Sometimes you tell strangers on Twitter. Sometimes you tell Andrew W.K. None of these parts function without the others— so if the mainframe of the brain breaks down, then what?
Sometimes you shut up and let your husband love you, even when it makes you hate your own vanity. Like he always says: you didn’t choose this. It’s a situation. What’s to judge? (I try never to give myself that open ended question for fear of the list I’d come up with.)
For a moment tonight, towel drying hair so bright that even the water doesn’t darken it, I wanted to have just one person and place to keep pain secret for me, wrapped in dead hair for always so that I could always find it in the same person’s memory.
That’s the hell of the whole thing, isn’t it? All hair is dead. Every single strand. I’m fighting every day to keep something dead hanging in my eyes, which I also hate: my dead vanity vs. my eye thing, every waking minute. Every single strand has some story of pain written on it. This hair has been in hospitals and classrooms, rehab and home: it has hung in my dry eye when I couldn’t feel it and it has crept through my eyelashes when it felt like ants. I’m just not ready to leave all those moments on the floor. Not yet. If someone else can’t hide these secrets and pain, I have to take some responsibility: I have to learn who I am in the shadow of my features, and I have to be able to allow myself to “see” myself some other way. Through too many images. Through strands that seem like dense trees in the woods, too bright to be ghosts.
Not until I know these pieces of myself by name and don’t have to fight myself to tell you the truth, the first time.