by Cole Cohen
At work, I stay late and come in early; I make drafts and revisions, I take breaks from deadline projects when I get too tired to see them correctly, and eventually I start to feel less like the Trojan horse sent to inadvertently take down the tiny civilization of the UCSB Humanities Center.
This is the first job where I am transparent about my disability and where I feel supported enough to ask for accommodations. My boss knows that if she orders a pizza for the lunch meeting and asks me to pick it up, I will need the total of the order from her beforehand in order to precalculate the proper tip on my phone. I think this is a kernel of what it means to be an adult; understanding your limitations and discerning from experience when to push yourself and when not to.
Rilke says “learn to love the questions.” I love my litter of neurological questions fiercely, and like most things we love, I sometimes resent them because I have no choice other than to love them. There’s so little we know about the brain and even less about the mind. I tend to want to lean on the support of hard scientific facts about my brain, but in the end what I understand of my condition feels less medical and more like an alchemical blurring of philosophy and anatomy.
March 2012
Santa Barbara, California
In The Odyssey, the sea god Proteus punishes the king of Sparta for offending the gods by calming the winds that would carry the king’s ship home. Proteus’s daughter tells the king that if he can capture her father and hold on to him long enough, he will eventually tire and tell the king how to please the gods again, returning the wind to his sails. The king captures Proteus and holds on to him no matter what he changes into—a lion, a leopard, a pig, a serpent—until he finally becomes exhausted and relents. This is the name that Charles Proteus Steinmetz, the scientist with the twisted skeleton, chose for himself.
If I hold on tighter to the story that we are meant to be together, I am sure that it will become the truth. Charlie is shape-shifting as I clutch him, but my clasp only makes him thrash harder. Inevitably, I lose my grip.
Our therapist suggests that we should avoid all contact with each other for three months to a year; it takes us several failed attempts to actually stick to this. It feels like a performance piece. At CalArts, I read about the performance artist Marina Abramović and her lover, Ulay, who ended their relationship by starting out on opposite ends of the Great Wall of China and walking toward each other to meet in the center. Once they met in the center of the Great Wall, they each said good-bye to the other and finished their walks.
We decide that I should be the one to leave. In April, I move to a room in a creaky Victorian less than a mile away from our old place. Upstairs from me is home to a former used bookseller, a violin maker, a bartender, a grad student, an aged yellow cat named Leelo, and thirty thousand books neatly shelved in the attic. The collection of books is also housed in the common space and the garage. My room is downstairs, next to a room that is used as office space for a real estate business run by the landlords (a father approaching his nineties and his sixtysomething son). I’m assured by the former bookseller that the landlords are almost never there, and that he will be picking up our rent checks. Anyone not blinded by that particular blend of urgency and grief known to the newly former live-in significant other can see where this arrangement is headed.
The real estate agent landlords are there constantly and it turns out the guy who picks up our rent is charging each roommate differing amounts in accordance with his mood. The real estate agents treat the house more as their vacation retreat than an office space; the Victorian has been in their family for generations, and they feel perfectly at home enjoying their morning coffee in the kitchen and opening the double doors to their office to include the parlor common space. My main objection is that to get to the bathroom in the morning, I have the option of either dodging the geriatric landlords enjoying their morning paper and coffee in the kitchen or attempting to exchange morning pleasantries with them while in my bathrobe. When I gently confront the former bookseller about this awkward situation, he says that there’s nothing he can do about it. I’m out after a month and a half; most of my stuff is still at Charlie’s since I haven’t worked out a method to transport it all.
This time, my parents are driving down to help me. Charlie and I are only a couple of months into our latest attempt to avoid each other completely when we agree to meet at a posh bakery by his place to discuss logistics. It quickly spirals into a blowout fight, our biggest public argument ever, over whether my father can enter his house.
“I’m not comfortable with your father being in my house. This makes me really uncomfortable, the idea of him being in my house. I don’t want him seeing my things. What if he touches my things?”
I don’t know where the hell this is coming from. It’s not news to me that he’s particular about his possessions, but I never had any idea that Charlie was so intimidated by my dad. I forget that he has this effect on people outside of our family.
“If you’re not going to help me move and you’re not going to let him help me, how the hell am I supposed to get my stuff?”
I plead my case to our mutual therapist, who talks him down until he relents. It’s May; the UCSB students are preparing to leave for the summer. The apartment units by campus are lined with sagging couches. I pick up secondhand Ikea furniture from outside sorority houses; my dad helps me load a used particleboard wardrobe into the back of the family minivan.
This time I move into a small studio with a loft bed, in a craftsman-style house that was originally cut into apartments to create housing for the nuns in the service of the church down the street. This seems like a woefully fitting landing for me to begin my newly single life in a small town with very few people my age. I use Charlie and my boss as references on my application. When the landlady finds out that I am on disability for a neurological condition, she calls Charlie for reassurance about my ability to get up and down from the loft bed. My parents, who were originally planning to drive down from Portland for a week to help me load everything out of Charlie’s and into my new place, decide to stay for six weeks and sublet an apartment downtown. First, I load their minivan with the few boxes I had at the Victorian. “The feral cats here are actually very sweet,” my dad tells me, stooping down to pet Leelo, who is rubbing at his legs. “You know, it’s fine. Santa Barbara is fine. It’s plastic, but everyone needs plastic.” The first night alone in my new apartment, I discover that the previous occupant had stuck little glow-in-the-dark star stickers on the ceiling of the loft bed. It’s my own tiny galaxy.
* * *
Aside from glimpsing him at a distance in his car, I don’t see Charlie all year, even though my new place is one mile away from the cottage we shared. I stay on the humanities side of campus; he stays on the science side. Since I avoid the places where we used to go to together, I have no way of knowing if he is doing the same. It’s 2012, the year when a few fringe believers are making noises about the apocalypse, as predicted by an ancient Mayan calendar. If the world came crashing down that year, I wouldn’t have noticed.
During the beginning of our separation, I filled out a questionnaire that’s supposed to help me get some distance from my emotions.
If your feelings were a color, what color would they be?
Purple.
If your feelings had a shape, what shape would they be?
Egg.
A purple egg. A real shiner.
On the bus to work, every so often a driver will ask me for my Medicare card. I use a “mobility” card, a card for disabled riders that you can only purchase by flashing your Medicare card and twenty dollars to a local transit authority worker who sits in a little booth in the transit office downtown. It would take a lot of effort to get a fake card, but this isn’t about that; this is about a little game where the driver feels big and I feel small. I can’t really explain why, even after I show him my card, I feel embarrassed. This small accusation that I’m not really the way that I am jus
t hits too close to home for me.
Going to the grocery store is still my biggest hurdle. I try to go at off-hours when the store is the least crowded, and I remind myself to take my time, that no one cares how long it takes me to find the peanut butter. One afternoon while I’m running errands after work, the woman in front of me in line at the drugstore turns around to smile hesitantly at me, as if she wants to ask a question. I take my headphones off. “Are you from around here?” she asks. I smile and shake my head, the same answer that I give wherever I am.
She steps out of line to ask a clerk, I see the hand waving, hear her ask, “On the other side of the highway? Left? Are you sure?”
This will be my first full year of living independently without assistance from my parents, a boyfriend, or friends.
May 2013
Portland, Oregon
I’m back in town for a wedding. I make an appointment with Dr. Z, whom I haven’t seen since I graduated from CalArts. His practice has grown to include another neurological chiropractor, a physical therapist, and an intern. The intern looks the same age that I was when I first saw Dr. Z, in his midtwenties. He sits in the back of the exam room and watches as Dr. Z runs me through some exercises.
“OK, walk down the hall and say the alphabet backward.”
Trying to do both at once, I accompany each letter with a stiff galloping step, and I get tripped up by the letter G.
“OK, OK, back up. OK. This goes in your left hand now.”
He places a small hand massager, green polka-dotted and shaped like a toy frog, in my hand and turns it on; it trembles.
“Now start over. Walk down the hall, alphabet backward.”
I walk smoothly and recite the alphabet backward in its entirety.
“There you go. We just needed to juice up your brain a bit.”
The intern cracks, “You’re going to have to keep that frog in your hand forever now.”
What does it mean for me to know that if you place a hand massager in my left hand I can walk down a hall and recite the alphabet backward at the same time, whereas I could not before? It means that there’s still more to my brain than I understand, that I’ve witnessed undeniable change.
“We’re going to have to get you down here more often,” he says. “You just have such a damn cool brain.”
In July, I’m back in my apartment in Santa Barbara when I break down crying after reading that Alan Turing, the engineer who Charlie told me killed himself by eating a chemical-laced apple, was posthumously pardoned by the UK parliament for the crime of homosexual activity. The feeling of being so deeply connected (to the passage of time, to Charlie, to powerful gestures that come too little too late) and so alone overwhelms me.
September 2013
Santa Barbara, California
A year and five months after we broke up, Charlie and I agree to meet over coffee in a park with a lake full of ducks and turtles, like the lake by his old apartment in Seattle. He tells me, “I know that I have a certain special insight into what’s difficult for you,” and I wince. I tell him that even if he’s right, I would like some space now to also be a person whom he just met; that I’ll try to do the same for him. I also want to tell him that I haven’t forgotten the tone in his voice that means that he’s in pain and doesn’t want to talk about it. We were never very good at figuring out the difference between having an insight and applying one.
In November, I start going back to the bar that I avoided for a year for fear of running into Charlie. I meet a graduate student in history who collects orchids. I bluff my way through a conversation about different varieties; the Latin names feel both ancient and familiar coming out of my mouth, like a prayer or a spell. Phalaenopsis, Cymbidium, Dendrobium. I give him my card and tell him that he should get in touch with me if he wants his students to receive extra credit for attending the lecture series at the humanities center.
The time that I begin to spend with the grad student contains some kind of nutrient that I didn’t know I’d been starving for; still, I can’t stand to put my lot in with his. We’ve both broken up long-term relationships around the same time, and both feel ambivalent about starting anything new; now that I’ve lived on my own in Santa Barbara for the past year, this common anxiety feels heightened for me. The list of people who weren’t sure that I’d be able to live independently includes my parents, Charlie, my therapist, my neurologist. My freedom is hard won and always at risk of receding; anything that threatens my solitude feels as if it also threatens my independence. The more whole I begin to feel on my own, the more mistrustful I’ve become of any of the traditional promises about what makes someone feel complete, especially in relationships. Learning to value my independence was a painful lesson, one that I’m scared of forgetting and even more frightened of having to learn all over again.
On one night he spends at my place he wakes me at 3:00 a.m., screaming “OhGodPleaseNoHelpMePleaseNoGod!” at the top of his lungs. My gut instinct is to put my hand against his chest to feel for blood. I can make out that his hands are in the air, but it’s too dark for me to tell if he’s guarding his face or about to throw a punch. I cautiously place my hand on his chest and find no blood anywhere, so I grab his arms by the wrists and shake him. “Are you all right? Are you all right?” I yell over and over. I’m so scared that I’ve forgotten his name. I finally shake him awake, and he turns his back to me and says quietly to the wall, “No.”
I don’t know if I should comfort him or leave him be. I honestly don’t know if it’s any of my business at all except that he happens to be in my bed. After watching someone whom I’m just starting to know and care for in so much pain, I feel terrified and helpless. I think that this must be how Charlie felt watching me, and I feel sick. At the time, I couldn’t help any of it any more than if I had been asleep.
I know the shame and embarrassment of your wildest self witnessed by someone you care for, and after being woken up by someone else’s nightmare, I understand more deeply how it feels to be on the other end of things—when your care can’t dampen someone else’s pain.
After spending a year living alone, I have finally learned how to read my own vulnerabilities and address them. The space has allowed me very slowly to find gentleness toward the intensity of my own feelings instead of trying to violently expel them from my body. During this year, I have untangled my desires and resentments from Charlie’s, slowly extricating what he actually felt from what I wished he felt. In my time alone, I’ve read books and listened to music made by artists who also feel deeply, and they have made me feel less alone and helped me find the courage to risk really knowing someone again.
In the morning, I don’t ask him what the dream was about. I’m not ready to know, and some dark and ugly-feeling part of me resents him for breaking our contract—for not being someone “easy to be with” as he had offered to be months earlier, an agreement that given enough time I wouldn’t have been able to keep either. I wonder if anyone could, and for how long.
Instead, I tell him that I used to have a recurring dream about the apocalypse. In the dream I know that it is the apocalypse because fire is creeping up streets from the burning buildings on the horizon. The only way to escape my dream apocalypse is to drive out of the dream city, so I get into the driver’s seat of a car and strap on the seat belt. The dream ends the same way, every time. I crash my car and die before I get a block down the street.
When she was little, my friend Solen used to have a terrifying recurring nightmare in which her only escape from torture was to conjure a tall building to jump off of. Now she’s an architect.
* * *
Everyone has a labyrinthine brain with a Minotaur at the center: a memory, an illness, a heartache, a deep frustration. Shake hooves with your Minotaur; invite your Minotaur to coffee. Your Minotaur is lonely and hungry and thus, understandably, not in the best of moods. No one understands what it’s like to be a Minotaur; this is why he is writing a memoir. He says testimony, he says wi
tness, and he speaks of his responsibility to the Minotaur community. You are not sure that the world really needs another memoir by a mythological being, one more man-beast identity crisis to stack on the pile, but you try to be supportive because he is the only Minotaur you have. You’ve heard of and seen people who claim to have slain their Minotaurs with trips to rehab or years of therapy, and while you admire them, it’s also still a little sad. Maybe because when people are defined so long by struggle and battle, it’s tough to know who they are once they’ve won. Once you get to the center of a labyrinth, you still have to find your way back out. You can’t see anyone from where you’re standing, but still you hope that there’s someone listening through the other paper cup at the end of your twine, waiting by the exit sign. You hope that someone wants to know what’s been taking so long. “Why the holdup?” You hope at least that someone noticed that you were gone.
The kicker here is that the person at the other end of the labyrinth, the person who you hope is waiting for you, cannot help you through. That person cannot guide you, tell you “No, your other left.” All that the person at the end has signed up for is to wait for you; all that you can promise is to move forward. Waiting is enough; moving forward is enough.
Isn’t what we all want, and what we’re all terrified of, is for someone to see us for our truest selves? As someone who relies on others, I have a physiological stake in empathy, and still I have to work hard to find it in myself for the same people whom I rely on. It’s so hard to remember that while my perception is unique, my pain is not. In therapy, in relationships, in my writing, I’ve been looking for a map out of the pain of being human, but the word atlas means “to endure.” No one is born with a map of life in hand. Just when we think that we know where we’re headed, that’s when the real trouble starts; the unforeseen circumstances, the self-sabotaging, the oasis on the horizon that melts into a mirage. The brain is often an unreliable narrator. It tells you go left, go right, trust this person, don’t trust that one, you are weak, you are strong. You alone decide when to listen.