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.

 

imagination is in short supply these days

Imagination is in short supply these days.

Reality may be more wide open to possibilities we never imagined – a bumbling reality television star is President! – but it feels more constrained than ever.

Which isn’t to say I’m calling for the left to create a blueprint of what the vision we’re fighting for will look like. Marx hardly ever went much further than the following:

“In communist society, where no­body has one exclusive sphere of activity but each can become accom­plished in any branch he wishes, society regulates the general pro­duction and thus makes it possible for me to do one thing today and another tomorrow, to hunt in the morning, fish in the afternoon, rear cattle in the evening, criticize after dinner, just as I have a mind, with­out ever becoming hunter, fisherman, shepherd or critic.”

That’s about as far as I dare to dream too, and it’s not a bad foundation.

But I’ve been reading Robin D.G. Kelley’s Freedom Dreams, and it’s brought into focus how threadbare our current visions are by contrast. Kelley recounts the dreams of black radicals throughout history, detailing their visions even while acknowledging their flaws. Marcus Garvey dreamed of an Africa that had never existed, but it pushed himself and his peers forward into improvements in the here and now. Askia Muhammed Toure spoke of black R&B artists as “poet philosophers,” their music a weapon in the struggle for black freedom. Aimé Césaire, too, spoke of “poetic knowledge,” which accesses truths otherwise obscured by the grinding oppression of our daily lives.

So maybe those of us without creative talents have always had trouble holding to the utopian visions that drive our daily efforts.  But these days, it feels as if more and more of us are allowing our view of the possible to become unduly narrow. Women’s liberation becomes individual empowerment. Radical debate becomes making fun of the columnist dunces of mainstream liberalism.

I fall victim to it too. As we come up against an increasingly powerful right-wing – one aided and abetted by the center, a Democratic Party that can only ever be structurally responsive to its donor class – the impulse to restrict our horizons is strong. We can barely access reproductive rights in the country’s middle, but we can embarrass the hell out of people online for being sexist. We can’t reverse the trend of ballooning police department budgets, but we can get Good Allies to donate to our pet projects. And so our goals narrow, allowing us to feel victorious without achieving anything.

And I don’t mean to single out the easiest targets among the left. I write mostly about labor, and there’s a dire scarcity of imagination there too. Unions face existential threats: federal right-to-work laws, for instance. But instead of changing their approach: moving to democratize their unions, aid in the sustainability of locals by transferring organizing skills from staffers to the rank-and-file and increasing their organizing budgets for new campaigns, most unions are doing the opposite. They’re slashing their budgets, firing young staffers, tailing Trump’s xenophobic and anti-environment rhetoric, or even worse, endorsing it entirely.

This is how a movement shrivels and dies. Not just the labor movement (although definitely the labor movement) but the left as a whole, all our movements that share an interest in improving the lot of the majority. We reduce socialism to ‘populism.’ We reduce liberation to equality. We trade-in redistribution for equity. Just as the Democrats fail to achieve their political aims by tacking to the right from the start, “negotiating” by ceding ground to their purported conservative opponents, the left undermines ourselves by lowering our horizons. If we allow ourselves to get sucked into what those at the top deem acceptable over what we know is necessary, be it when it comes to taking action on climate change, unions, or fighting racism, we resign ourselves to failure from the start.

More than anyone else, we know we can’t afford that. Carbon taxes aren’t enough to resuscitate our dying planet. Body cameras won’t prevent the police from killing our neighbors. The ACA isn’t adequate to the task of getting millions of the uninsured poor access to health care.

I don’t have answers, and this is not an argument against fighting for reforms. But what I do have is the experience of what it feels like to witness what you thought only the day before was impossible, and how important it is to help people experience that for themselves if we want to keep radical imagination alive.

It’s what Keeanga-Yamahtta Taylor describes in From #BlackLivesMatter to Black Liberation. She writes,

“It is impossible to answer, and perhaps futile to ask, the question “why Ferguson?” just as it’s impossible to ever accurately calculate when “enough is enough.” The transformation of Mike Brown’s murder from a police killing certainly tipped the scales.”

When Ferguson police officers left Mike Brown’s body on the street for four hours, they pushed the city’s residents over the edge and into an uprising. While that uprising didn’t achieve all its aims, many of the people who participated in it were transformed. The streets became theirs, their friends became comrades, and their dreams of freedom broadened as they experienced what it is to demand change.

The journalist Ryszard Kapuściński describes this process as so powerful that it can set off a revolution. Describing a police officer shouting at a protester to disperse in revolutionary Tehran at the start of the Iranian Revolution, he writes:

“The policeman shouts, but the man doesn’t run. He just stands there, looking at the policeman. It’s a cautious look, still tinged with fear, but at the same time tough and insolent. So that’s the way it is! The man on the edge of the crowd is looking insolently at uniformed authority. He doesn’t budge. He glances around and sees the same look on other faces. Like his, their faces are watchful, still a bit fearful, but already firm and unrelenting. Nobody runs though the policeman has gone on shouting; at last he stops. There is a moment of silence.

We don’t know whether the policeman and the man on the edge of the crowd already realize what has happened. The man has stopped being afraid – and this is precisely the beginning of the revolution. Here it starts.”

This is what happened in Ferguson, and in so many other cities across the country where we refused to follow orders from police forces that are fundamentally unjust. It’s what I felt during Occupy Wall Street, when ordinary people decided for ourselves what justice meant and in doing so, set ourselves on a path that permanently reoriented our lives toward achieving those aims.

It’s hard to access such visions without involvement in a movement or campaign. To paraphrase poet Keorapetse Kgositsile, it’s only when the clouds clear that we can know the color of the sky, and it’s only by achieving collective gains that we learn what power feels like. But we need not be in Kapuściński’s revolutionary moment to glimpse the possibilities we’re fighting for.

Take the following story of a union victory recounted by R.L. Stephens:

In the end, the workers won. As the campaign victories were listed, the excitement in the room was overwhelming, a type of energy that I’d only ever felt at a particularly intense church service or while attending a high-stakes game in a packed stadium. The organizer announced that healthcare had been won. We clapped. We celebrated as the wage increases were added up. But when the organizer revealed that the contract guaranteed the right to speak non-English languages in the workplace, the room erupted. The Black workers were palpably just as invested as the Chinese workers, and everyone was ecstatic.

That feeling of winning against the boss, of wresting power from those you previously thought invulnerable? That’s how our vision for the future stays alive. Become too removed from day-to-day struggles and it’s easy to  retreat into a pessimism that takes reality as it exists and reifies it into the only possible reality that could exist, seeing racism, sexism, homophobia, inequality as inexorable, without an alternative.

It’s why I tell people to get involved in organizing, even in a minor way. It’s through the experience of power, not just by talking and writing about it, that we gain access to the knowledge Cesaire thought might be restricted to poets. It’s why radicals celebrated the mass Women’s March, the airport protests, the BLM rallies. Feeling power in a collective, experiencing the moment of refusal in the face of police orders, demanding a fair share in the face of the boss? That’s the basis for radical imagination.

It’s hard – impossible, even – to hold onto that from behind a computer screen. But we shouldn’t let our visions narrow just because events of the day feel so bleak. Odds have always been against us on the left: that doesn’t mean we should restrict our visions to the possible, rather than the necessary. Don’t forget that, no matter how many people try to tell you otherwise.