Extremely Abbreviated Description of One Female’s Pain

1

Last year, a doctor’s aide took my vitals. I sat at ease in a chair, until she told me matter-of-factly that my heart was beating fast enough to warrant a trip to the emergency room.

Had I exerted myself before going to the doctor, she wanted to know. I hadn’t. The hospital where this doctor was located was out of the way, inaccessible by public transit, so I’d taken an uber to the front door. I’d even taken the elevator to the neurology clinic, shamefully choosing not to walk the two flights of stairs from the main entrance.

“No,” I responded.

“You’re lucky we caught this. I’ll have the doctor talk to you right away.”

2

The only reason anyone caught my heart abnormality was because of my headaches. They’re migraines, technically. I’ve always gotten them, at least since I was a little kid. I’d long ago given up on doing anything about them. But after I had one so bad that I fainted and wound up in the hospital with a skull fracture, I was forced to go through the motions of seeking the cause of the pain. I soon gave up on finding the cause – rather, my doctors soon gave up. So I sought medications that might at least relieve the pain. That’s why I was at a neurology clinic getting my vitals checked.

It feels tired to write about being a woman with headaches, but that doesn’t make it any less true. And it is tiring to be a woman with headaches. I am tired of it.

3

I write too often about fracturing my skull. I reference it compulsively. Only when reading Leslie Jamison’s essay on female pain did I admit to myself why. Jamison quotes from a memoir by Lucy Grealy, a woman who had childhood cancer and whose face was disfigured by it, cause for the title of Grealy’s book: Autobiography of a Face. In it, Grealy writes, “I was excited by the idea that something really was wrong with me.”

“Grealy had been craving the identity-locus of damage even before it happened to her; and was happy, as a little girl, when trauma first arrived,” writes Jamison.

For the first few days in the hospital after fracturing my skull, I was torn between fear of dying and self-pity. These are related feelings: self-pity follows from awareness that one is too young to experience fear of dying, and this acknowledgement often strengthens that fear, goading a person to think of all that she will miss should she die.

For me, this manifested as yelling deliriously at a nurse. “You don’t understand, I can’t have a head injury!” I screamed, trying to keep her in my field of vision despite being strapped into a too large neckbrace, which forced me to look straight up at the white ceiling if I wanted to minimize the cutting pain the brace caused as it sliced into my too small, too thin collarbone.

“I finally have a job where I need my brain” I yelled, no longer able to see her.

When the nurse reappeared in my line of vision, I told her to let me check myself out of the emergency room. If I left, I reasoned, the injury would cease to exist. If I was someone not in a hospital, I would no longer be someone who needed to be in a hospital.

I lost consciousness before I could hear her response. Maybe she didn’t respond at all.

I soon acclimated to my new existence as someone confined to a hospital bed, someone who understood how to use a bedpan and who no longer cringed at the needle stuck into her arm every four hours by a blurry amalgam of nurses, made indistinguishable in the darkness of late sterile nights when she, or he, woke me from sleep to prick me for another blood sample. A new feeling came over me, not unconnected to fear or dying or self-pity, but distinct: I felt grateful. Something very bad had happened to me, something no one could deny was terrible. I had a traumatic brain injury. I might not recover. The doctors told me I had a brain hemorrhage. They told me that my spinal fluid could flood the space between my spinal cord and my skull, and that this could kill me.

I did not cease to fear for my life, or wish I hadn’t gotten hurt. But given that I had, I felt precisely what Grealy felt. I was excited by the idea that something really was wrong with me.

4

I know better than that. I know I should be what Jamison calls a “post-wounded” woman. “Post-wounded women know that postures of pain play into limited and outmoded conceptions of womanhood,” she writes, and it’s true.  I fear my parents will read this essay and misunderstand me. That they’ll be hurt, or horrified, because they haven’t read Jamison’s essay, or think my excitement about being an authentically unwell, tragic woman compares in magnitude to my resentment and self-pity about my health. It doesn’t.

And yet…

And yet, I have a new wound; one I could be accused of choosing to prolong for the sake of pity. Ever since fracturing my skull, I’ve become paralyzed at the thought of making an appointment with a new doctor, or keeping up with the old.

I managed it for a year or two. I saw the neurologist, who gave me three different sets of pills for my headaches. I saw the ENT specialist, who explained to me that while I might never get my sense of smell back – a loss that came from a piece of my skull slicing through the nerve endings that translate odor into scent – I might. He wouldn’t say anything more definitive, surely fearing litigation. I saw a therapist, who saw a young woman so wounded as to be unfixable, so she gave me some pills, and I stopped seeing her.  I saw a specialist who was supposed to tell me why I felt dehydrated all the time, which, combined with the migraine, had caused me to faint in the first place. He cut open my lip and sewed it together again, testing for Sjogren’s Syndrome, an autoimmune disorder that was the only explanation he could think of for my dehydration. I can still feel the stitches through my face. When he told me I’d tested negative, I saw someone else, who gave me pills to take three times a day, pills meant to stimulate saliva so my teeth wouldn’t decay, the enamel eroding and rotting the bone at an accelerated rate. I saw a dentist, who saw a thin girl with no enamel left on her teeth. “Are you bulimic,” she asked, adding that repeated exposure to stomach acid erodes one’s teeth. Even when I explained my condition, she seemed to still see a bulimic. I saw my new primary care physician, who helped me coordinate all these doctors, until she didn’t.

So now, I see no one. For the most part, this is okay. But when it comes to the heart abnormality the neurologist found, I never saw a cardiologist. It was over a year ago. I can’t seem to make myself schedule an appointment. When an ex saw me continue putting off the call that could have gotten me an appointment, he first tried to help. Then he gave up. We broke up, with him telling me to “see the doctors already, I don’t understand what is so hard about that.” I told him I would.

When I told the guy I see – “I wouldn’t call us ‘dating,'” he once told me, so I don’t – that it’s been over a year since a nurse discovered my heart abnormality, he told me I should see the doctor. I didn’t respond.

Jamison would probably add me to her cases of women dwelling in woundedness. She would be right. But I’d add – and so would she – that it’s more complicated than that.


Note: I’ll incorporate this essay into a longer piece elsewhere, but I wanted to share it as is in the meantime.

 

My Neighbor

There’s a homeless encampment across the street from my apartment. It’s been expanding since I moved in. At first, it was a sleeping bag and a cardboard sign, hardly noticeable. It’s been accumulating stuff ever since: blankets, a sleeping pad, bags, trash. Stuff.

My room’s been accumulating stuff over the same period of time too: books, clothing, empty coffee cups, receipts, flyers for protests.

I walk past the encampment every day, watching it expand as my life expands here too. There’s hardly ever anyone there. Occasionally, mid-day, I see a rail-thin woman’s head peeking out from under the assorted blankets and sleeping bags. She’s always asleep. When I walk by late at night – 2, 3 am – she’s isn’t there.

I’ve never seen anyone talking to her, or touching any of the things. I live a block from a busy subway station, on the border of Brooklyn and Queens. But no one seems to mind the increasing space taken up by my neighbor’s belongings.

Occasionally kids marvel at the stuff as they walk by. There’s a school at the end of the block, so we get a lot of foot traffic. One time, a little girl stopped to look more closely at the pile of trash (I do not call it trash as a judgement, but merely to speak of what much of it consists of now, as it grows: plastic bags, food wrappers, empty cups). Her mom, or older sister, or whoever, tugged on the girl’s shirt, hurrying her along the way adults do when teaching a child how to behave in public. That was the closest I ever got to seeing someone acknowledge the encampment.

New York housing is a nightmare, which I sometimes think is why no one looks perturbed by the woman’s accumulating stuff. The inability to live, to pay rent so as to avoid sleeping outside, is a fear the majority of the city’s residents have, so we can relate. Rents continue to skyrocket, with people pushed further into the distant edges of boroughs. We all then commute in, creating a dilemma for our cities with their failing infrastructure.

Here, that dilemma is becoming a crisis. The MTA is ridden with dysfunction: trains shut down without notice, leading the agency to advise passengers to stop going to work entirely, promising to begin an ‘awareness campaign’ of emailing employers to encourage this ‘solution.’ A video went viral the other day of passengers trapped on the F train, the footage more evocative of a zombie thriller than real images from one of the world’s wealthiest cities. The Governor, Andrew Cuomo, refuses to address the issue, ignoring the thousands of “FIX THE SUBWAY” replies his voters leave to his every tweet. The post-industrial city suffers under its own contradictions: advertised as a post-material economy and under girded by austerity, the city still relies upon the ability of real people to travel through real, not cyber, space, to our real jobs.


I started this essay a few days ago, intending to make it some meditation on public transit or housing. But this evening, on my way home from dinner, I walked by the part of the sidewalk where the encampment should have been. The sidewalk was immaculate; my neighbor’s stuff nowhere to be seen. I stopped walking, with no idea what to do. Had the woman moved on of her own accord? Had someone – the city? a business? a vigilante? one of my other neighbors? – thrown it all away while the woman wasn’t there? I looked around, but no one else seemed perturbed. No one else was even looking in my direction, the foot traffic as steady as ever. There wasn’t a trace of the stuff left. There was nothing I could do. So I crossed the street, put the entry code into my apartment building, and walked inside.

The First Week

I feel like I’ve hardly had time to breathe this week. I don’t even get out of bed sometimes: upon waking, I open my laptop and start responding to emails, DMs, slack channels, facebook messenger. The sun goes up and then down again as I sit, hunched, glued to the screen.

Just in my tiny slice of the world, Trump’s impact is already being felt. Unions are pulling out of organizing campaigns. Colleagues who have been helping organize our union may be stuck in Iran. Friends are losing their jobs, their research funding, their confidence that any of our work matters.
 
And they’re right to be afraid! It’s scary to imagine the damage this administration will inflict in lives lost, progress undone, bonds of solidarity disentangled. Yet if we give up, the disasters will only multiply.
 
As for how Trump is impacting our movements, I can only speak about labor. In the face of will be a multi-pronged attack – mass privatizations, federal right-to-work laws, and the loss of the NLRB – what’s becoming clear is how little leadership union “leaders” offer us. In the face of attacks the likes of which we haven’t seen in nearly a century, leaders are huddling together, turning inward when we need precisely the opposite.

So, what does that mean for the grassroots? It means that at the end of the day, we only have each other and the camaraderie and strength we’ve built as workers to think on our feet even as institutions and laws dissolve around us. If unions care about the labor movement, they’ll transfer organizing skills as quickly as possible to workers, they’ll admit new ways of thinking into their ranks. And if not? Well, we’ve been here before, before we built unions and pushed for legal protections and all the rest; we can do it again.
 
I’m confident the same can be said for the feminist movement, the anti-police brutality movement, the environmental movement, and every other social movement that’s been under siege this week. Established institutions, be they the Democratic Party, unions, or non-profits, will try to accommodate the new administration as best they can, throwing those of us who can’t fit into the administration’s deeply limited bounds of acceptability under the bus. And we’ll have to be distinct from these backroom deals: more mobilized than ever, more democratic than ever, if we actually want to build a resistance that can force concessions and reversals from this administration. We’ll have to welcome in the flood of people who want to fight the agenda on offer because after all, the only way any of us learned anything was through struggle, so we can’t expect the thousands flooding into our movements to be any different.

No matter what those at the top do – and all indications that the Democrats are the worst of the worst when it comes to spineless collaboration with the right – we can’t forget that we, the people on the ground and in the street and the workplace and the clinic, are the ones who built each and every worthwhile institution in this country. We forced labor protections into law. We created underground abortion networks until we freed up enough room for above ground clinics to operate. We welcomed refugees with open arms.

It’s scary to consider how much today feels like what I hoped was a long-gone era of reaction. But now more than ever, we need to remember our history. When it comes to everything Trump and his ghastly bands of ghouls are hellbent on destroying, we built it all in the first place. If need be, we can build it back up again. That may not be the sexiest message on offer, but it’s the truth.

being watched

I woke up on the cold concrete floor of the coffee shop. It was May 2, 2014. A wave of weakness had overtaken me as I moved through the line of customers moments earlier. When I reached the register, my vision narrowed to a pinhole, then faded to black.  Now, looking up from the floor, I saw an old man – the cashier who was handing me my change when I fainted. His eyes were on me, his hand doing the sign of the cross over my body.

As I propped myself up on my elbows, lifting my head off the floor, he told me not to move. It was only in retrospect, weeks later, that I realized he’d been doing a stroke test, hoping my eyes would follow his finger as it moved before my face. I wonder if he told the paramedics I’d had a stroke.

Everyone else in the cafe was watching me, and watching him watching me. It was the closest I’d been to being on stage since my years as a gymnast. Back then, as a kid, the force of eyes on my body was grounding. Balance beam was my best event, and it was in arenas where the crowd was on all sides that I excelled. I’d imagine their eyes gluing me to the four inch wide surface, the force of so many gazes powerful enough to defy any of my wobbles or slipups.

After I recovered enough from my fall in the coffee shop to leave the house by myself – one, maybe two months later – I tried to walk to a nearby park. It was summer in Boston. As I walked, dressed in black jeans and a tank top, my usual modest outfit despite the relentless heat, I felt the eyes of each man I passed flicker over my body, resting on my eyes, my lips, my collarbone, my chest. I’d forgotten what it was like to exist in public. Fifteen minutes into the walk, I could no longer breathe. I changed my route, heading instead to the nearest store that sold sunglasses. Maybe that would stop me from feeling the pressure of these men’s eyes on me, allow me at least the appearance of refusing eye contact.

I wore the sunglasses every time I stepped outside after that, only retiring them when winter came.

Monkeys at the zoo get stressed out by the presence of visitors. Until recently we didn’t know why, but experts from the University of Melbourne found that it’s the presence of eyes on them that is the source of anxiety. Researchers placed five monkeys in an enclosure with a one-way screen that prevented them from seeing visitors, while the other half remained in their regular unmodified enclosure. The screened-off monkeys were 68% less likely to display aggression. Concentrations of chemicals linked to stress were a third lower in this group than among the monkeys that could see people watching them.

Summarizing the theory behind a panopticon, a design principle created by Jeremy Bentham as a cost-effective way to structure prisons that involves placing all cells in sight of a central guard tower, Michel Foucault writes “”He who is subjected to a field of visibility, and who knows it, assumes responsibility for the constraints of power; he makes them play spontaneously upon himself; he inscribes in himself the power relation in which he simultaneously plays both roles; he becomes the principle of his own subjection.”

In the panopticon, the prisoner becomes the guard, so much so that the actual presence or absence of guards becomes irrelevant, so long as the belief in the guard is instilled in the captive.

When he sent me the email about why he was killing himself, Kevin said he saw himself as he existed in my eyes, or at least, how he imagined I saw him: bloodstained from his tours in Iraq and Afghanistan. “I can’t live as a monster,” he wrote. If he’d given me the chance, I’d have told him I didn’t see him that way. But maybe it was enough that he’d started looking that way to himself.

That was New Year’s morning, 2014. He hit the send button at 2am, four months, one day, and ten hours before I fainted.

These days, I don’t wear my glasses when I’m out in public. I cannot see much beyond three or four feet in front of me. I can see the world, but it’s out of focus. I can’t make out faces, recognize friends. Most importantly, I can’t tell where anyone is looking. If men’s eyes consume me, I’d rather not know.

I am writing this essay in O’Hare, my laptop balanced awkwardly on my knees. After starting to write, I run out of complimentary wifi, so I give up and turn back to the book I have with me. It’s Notes from No Man’s Land by Eula Biss. In an essay on life in the Midwest, Biss writes, “Another friend of mine, a black woman, once described to me her experience of walking through a Wal-Mart in rural Iowa, where she was stared at until she could not bear the attention anymore. Her husband suggested that she take off her glasses so that she could not see the stares, and that, she said, had helped.”

Tonight, from the plane, the city lights below look like tinsel for a Christmas tree, strands of yellow-orange and white winking at me. Without my glasses, I can’t see anything but the tinsel.

looking for recommendations

When I got involved in politics as a teenager, I was less knowledgeable and younger than everyone I hung around with, so I decided I’d voraciously study as much as I could to catch up. Five years later, I finally feel I’ve done enough studying to cut back a bit and read fiction (and literary non-fiction, if it’s good).

But having tuned out all mention of these genres for years, I don’t know where to begin. So, you, my cultured friends, should recommend your favorites, particularly work that’s come out in the past 10-15 years since I think the most recent fiction I’ve read was The Corrections (which wasn’t bad, even if Jonathan Franzen is terrible).

Also, what publications and sites do you follow to find good new work? That way I can start keeping up with this stuff on my own.

I’m sure this post will elicit an onslaught of well intentioned but entirely not-what-I-was-looking for input, but I suppose that’s life on the internet.

personal note

 

These days, it’s rare I write about myself for the hell of it, but an uncharacteristically-sincere feeling of gratitude leaves me wanting to share an update.

I start my third year of my PhD program this week. Despite being unwaveringly a words, not numbers, person, I’m taking quantitative methods classes in hopes of maybe being employable someday. That means I’ll be spending a lot of time learning R and GIS along with TA’ing a statistics class. None of this is what I do for my own research, and none of it comes easy, so it’ll be a tough few months.

I’m doing political work too! It takes up a lot of energy and is an insane time commitment. But it’s good work, the slow and methodical type that stays after you leave and teaches you a lot in the process. I’m thrilled to be doing it.

I also just moved into a new apartment. After years of relying on buses, I feel like I won the lottery. There’s good mexican food and a coffee shop and bars, all nearby! I can walk places, and it’s a quick train ride to work. While I’m still poor as hell, my quality of life has gone way up and it’s hard to believe life can be so good.

Finally, it’s been a year since I decided to Figure Out How to Write. And man, if I’m being honest, I hustled: despite being in grad school and having all the commitments that come with that, I’ve gotten published a few places, learned how to pitch and write stories – unevenly, but apparently well enough – and became colleagues and friends with some great writers.

The political work is time-consuming enough to necessitate I take a break from non-academic writing (at least in theory; we’ll see if I stick to that), so bear with me if I write less.

It may sound melodramatic, but my life’s better than anything I could have hoped for, or even imagined, a few years ago. After years spent studying all sorts of subjects on my own – seriously, that’s why my library’s so sprawling – in an attempt to feel confident enough to hold onto my own opinions, I’m finally starting to feel sure of myself. I’ve got more friends and support than I know what to do with. Some of you are intimidatingly brilliant and inspiring. And I’d like to think that I’m slowly starting to pull my weight.

We’re All Poor So Let’s At Least Make Health Care a Right

healthcare

This is the bill for my hospital stay after I fractured my skull two years ago. Had I not had been young enough to be covered by my parent’s health insurance, I’d have been responsible for nearly $40k – and that’s ignoring other bills, like the $2k charge for the fifteen minute ambulance ride to the hospital.

In the two weeks since I wrote about the aftermath of that injury, one of my doctors caught a new problem: a fucking heart problem, of all things.

He added one more prescription to the eight on file for me at CVS. The pills stack up on the bureau in my room. They stack up because I don’t take them as consistently as I’m supposed to. Because some of them have weird side effects. Because a dozen pills a day is a lot to remember.

Most of the prescriptions have a minor price tag, a few dollars mysteriously not covered by my health insurance. $5, $10, $15. Nothing outlandish, but it adds up.

It’s lucky this doctor caught the heart problem. A tell tale sign showed up when his assistant took my vitals. I’d never have brought it up otherwise – the occasional racing heart, shortness of breath, full body weakness. It’s the least of my problems.

Before I left, I had my co-pay – $40 this time – for seeing this doctor, one of the best neurologists in one of the best medical systems in the country. $40 might seem like nothing in comparison to all that…and yet, I have health insurance. In the context of monthly visits to specialists, co-pays compete with groceries. And that’s with health insurance.

Without it? Who knows what these dozen daily pills cost. And were I still making as little as I used to, I doubt I’d have made that $40 appointment. On minimum wage, no one would have caught my heart problem.

We need to demand a system of health care that won’t force me and millions of others facing the same grinding combination of poverty and a failing body to cold quit prescriptions and avoid doctors as soon as we find ourselves without decent health insurance and maybe even when we have it. To those who mealy-mouth responses about realism and earning what should be a right, people like Hillary Clinton among others, I’d like to force them to watch millions of lives fall apart in the absence of free access to doctors.

And if we don’t make health care a right? Well, maybe I should hold onto those extra pills accumulating in my room – consider it a stockpile for a darker future.