I was halfway through my book tour when the pain started. Sharp, but strangely light; like the nub of a feather lodged in my right side. Must be all that signing with my right hand, I joked to my husband, who was traveling with me, along with our two dogs. A six-week book tour of three coasts—East, Gulf, then West—can be lonely. This time, I wanted my family with me. And it might be, who knew, my very last long book tour. No one does big tours anymore. Especially since the pandemic. Writers chirp now from little cages on computer screens. Whistle coo, whistle chee, here I am in my naked tree. Will you buy a book from me?
Three weeks into the tour, in an unfamiliar suite in Houston, in a downy bed, I sweated through the night. I was so drenched, I left a puddle on the sheet. I got up and adjusted the air conditioning. It was the humidity, certainly. Plus these mad linens. Who needs a duvet in spring in Texas? But the reading had come off so beautifully. How wonderful it was, night after night, to see real people again, in cozy, yellow-lit rooms. The podium and microphone had been well placed. I was tired afterward, but then, it had already been three weeks.
And in addition to the bookshops and book clubs, we had to get out and walk the dogs as often as possible. The deepening pain in my right side was probably, actually, come to think of it now, dog-caused. I always keep a leash in my right hand. And what’s at the end of a tether can pull unexpectedly hard, hard enough so that you’re the one who feels led, even if by something you love. Pulled muscle, I told my husband. Feels sort of like a stitch, like I’ve been running with one hand out in front of me, which in a way I have. The nub was in deep now. It was more like a beak. Opening.
The best essay I have ever read on the subject of pain is Eula Biss’s “The Pain Scale.” Read it here. Read it, please. In it, she takes the common, hospital-setting ranking of physical pain—how bad are you feeling, 0 to 10?—and notes that the scale was primarily invented to protect medical staff from the swinging, emotional cutlass of another human being’s agony. Through her own (often excruciating) pain, Biss muses first on the number zero—is there such a thing as no pain?—and from there works her way along the scale, like a thumb pressing down, following a vein. It turns out there is a problem with the scale: many people, when pressed, will rate their pain as a “five.”
Five is a reasonable number, serious but neither hysterical nor presumptuous. Few of us, it turns out, want to claim we are in terrible, the very worst, pain. Like a bigot in a soup line, we keep our balance, our composure, by being certain there is a class of people somewhere else worse off.
Few of us, it turns out, want to claim we are in terrible, the very worst, pain.
The second day in Houston I rated my pain, in my head, a three. It wasn’t so bad. Of course it wasn’t getting better, and I had sweated through another night. But the reading club I met with was magnificent—such a joy being with people who still cared about stories and words, who knew books aren’t math, they’re spring-loaded skin; touch a page in any place, and it moans, Listen, listen to me. To the bookshops, to the clubs, I said nothing about how it was now hurting me to speak. You get one chance to launch a new book before it runs the risk of wilting and disappearing. You smile. You sign. You are grateful. There are worse ways to make a living.
In my family, we have not had, outside of childbirth, a great deal of acute physical pain. Emotional pain, yes. We’re immigrants and refugees. We came to America to escape shame, horror, and red, red work. Near his death, my father made a list of things he wished he’d written a book about, and hoped I would write for him, and showed me a yellow tablet he’d scribbled all over. I pointed to a line that read only, “Bloody shoe.” Ja, that was after a bomb, he said. He came out onto the street, and there was just that one shoe, lying there in the rubble. As a young man my father worked for a butcher, and hated it. He wanted to move to California, land of oranges and sunshine. My mother wanted to go, too. She jumps at sirens.
Apart from memory, we’ve been largely pain-free. Or at least stoic about pain. When later on my father, working as an executive in a high-rise in San Francisco, felt a crushing in his chest and started sweating profusely, he rode down an elevator, put his first heart attack in the car, and drove himself to the ER. My later widowed mother recently fell and broke her wrist so badly some of the small bones shattered; on the x-ray they look like scattered teeth after a fist fight. But she will never tell me how bad her pain is. “I have wide shoulders,” she will often say. (She does not. They’re a canary’s.)
We don’t make a big deal out of physical pain. As though it were a kind of sin. And we don’t stop working because of pain. My father went back to the office and had three more heart attacks. My mother worked in a department store when he could work no more. At the end, my father’s heart was so damaged he felt, I believe, less pain, although I’m not certain. About the paramedic leaning over him he said, “This man smells of cigarettes.” His last words. An observation, but not of himself. I cried uncontrollably at his death. That kind of pain we allow. It’s over someone else. It isn’t bone, muscle, organ, nerve. It is loss. It is theft. The house robbed.
The worst pain I had ever felt, before this year, was laughable and bizarre. My husband and I have for many years kept a rough-planked hideaway in the canyon country of southern Utah. I go there to write; he goes to ride his bike; we both go to feel strong and vigorous, clambering over the desert’s rifts and plateaus. We aren’t young anymore, so the hikes are getting harder, the miles longer.
After one walk, a few years ago, in late spring when the smallest desert flowers and insects are coming to life, we came home, tired, to a cloud of gnats outside and inside our door. One buzzed near my left ear. I waved lazily at it. Then shouted. Then screamed. And screamed more. And more. And louder. The inside of my head, my brain, was being attacked by a tiny, rapidly pulsing machine gun, darts of red hot piercing fire, whirring, not stopping. I thought I would go mad. I lost all self-control. I threw myself on the floor. My husband brought olive oil and Q-tips. We couldn’t get the damn thing out. Both of us embarrassed, he drove me to the small ER in our area, well set up to handle biking and climbing accidents.
There a kindly doctor explained I had made things worse by jabbing a Q-tip in my ear. The ear canal is very sensitive, he said, and the bug had fled to its rawest, most responsive point. He went to work with flushes and pincers, and finally showed me the drowned speck. My embarrassment deepened. “Oh it isn’t the size,” the doctor assured me. “It’s the position.” But it didn’t matter to me. I had prostrated myself over a gnat. I had screamed worse than I had wailed at my father’s death. Who does that? Where was the proportion? The restraint?
The Texas leg of the book tour over, we headed, as we had planned, to the desert for a break before continuing to readings in Colorado and California. I didn’t say much to my husband about the pain under my right ribcage, now so pronounced I could no longer lie or rest easily on that side. The ache in fact had spread from my ribs into my shoulders, maybe even, at moments, into my neck. That must have been some nasty leash-pull, I thought. But we are at an age where we can crack a rib cracking an egg.
Even between people who love each other, it is hard to communicate the nature and degree of our pain.
When I was upright, the pain wasn’t so bad. When I sat or lay down, it was surprisingly pointed. Pain that is relieved when you move isn’t serious, I remembered. And I still had bookstores and book clubs in the Rockies and on one more coast, waiting for me. Just adjust your position. The show must go on.
A pulmonary embolism is a blood clot that develops in the calf or groin. It sometimes forms in response to long, stationary postures during periods of travel, and then itself travels the canals of the body, looking for a place to rest and grow. It’s a flourishing entity without a reason; a systemic mistake; a product of constriction and confusion. It’s also an overachiever. Like an employee who shows up early and leaves late for no purpose other than to look good for a CEO who isn’t there and doesn’t know about it, a clot imagines it is doing something important and necessary, saving the entire company, even.
Our blood thickens when it senses a damaged vessel or open wound. Platelets rush to fill the breach, and call in sticky proteins to finish the job. When the danger is past, and the job complete, the cells know to relax, break up the session, stop working. Usually.
An embolism gets this wrong on every level. In some instances, it forms for a good reason (you are, say, having knee surgery and need to stop bleeding), but then, its work finished, instead of dissolving, it unmoors itself and goes AWOL toward the heart, lungs, or brain. In other instances, blood thickens where a pathway that should be open somehow isn’t open enough (your legs, say, cramped for hours in an airplane or car). The sluggish, pooling blood triggers an alarm—let’s go! there must be something wrong there, fellas!—and more cells heed the call and rush to do what merely seems familiar and right to them.
The body isn’t in need, though. The body deplanes, and this manic, overzealous glob without any goal finds itself wandering the vascular terminal. It will settle somewhere at last, and keep calling more help to it. It doesn’t know when to quit.
No matter your blood type, that of a clot is Type A.
I thought about getting my pain checked out, but there were still so many books to sell and readings to do and groups to have dinner with, and I recoiled at the thought of canceling anything or letting anyone down. You just don’t do that. You keep working. It was only pain, after all. I didn’t have a fever. The night sweats had stopped. I was taking Covid tests regularly, to be safe. Negative, every time. My head was clear. My breathing was fine. The first night back in the desert, I did notice that it now hurt to lie on my left side, too, so I dutifully put my glasses on in bed and Googled—Mama raised me both stoic and shortsighted—and I had none of the reliable symptoms (which I knew) of a heart attack. Or infection. Or gallstones. Or appendicitis. Or kidney stones.
The worst suffering my husband has ever experienced was due to kidney stones. He has no trouble letting me know when he’s hurting, but with kidney stones it doesn’t matter anyway, because you know, because a stone in a kidney is like childbirth without the decent payoff, and after it was over he told me the pain had to be near the limit of the scale, please, it had to be near it, because anything worse was unthinkable. I already understood it must be bad. I had watched, stricken, as his skin turned white, then green. How he’d curled into himself on the gurney, like he was trying to find an exit, a hole in the fabric of time. And ER doctors don’t hand out Dilaudid—morphine—for fives.
But here’s the thing: even between people who love each other, it is hard to communicate the nature and degree of our pain. Hence the pain scale. Hence the tortured metaphors. It isn’t that, or at least it isn’t only that, pain is unique, or private. Or even that it is beyond language (though it can be). It’s that we don’t receive any training on how to talk about it or manage it. We are born, we are human, we are going to feel pain, but though we are given driving lessons and geography tests and gun permits no one tells us what to expect about pain, or how to respond to it, or understand that we or someone else might end up curled into a ball, vomiting from pain, eyes begging, trying to write the book of it. We are given no instruction, and so we learn (some of us more painfully than others) on the fly, interpreting what is happening to us as best we can, reacting within whatever guidance or parameters we are given, from our families, from our cultures (from no pain no gain to Here’s some Oxy, no problem), our wallets (may I see your insurance card?), our jobs (any sick days left?), our gender, our immigration status (ah, better to just ignore this stabbing ache).
I am a lucky human being. I have medical insurance. I had options. I could have simply canceled or delayed the rest of the book tour. I chose not to. I decided I would wait until after it was over to find out what was wrong with me. It was only a few more weeks, anyhow.
I thought, before I passed out, that in the morning I would text my publicist and tell her to cancel the rest of the tour.
That was my quiet plan, until after another night in the desert the pain grew so intense, so everywhere, so all over me, I couldn’t sleep; no matter where I moved there were knives in my back, in my chest, in my neck, until at four a.m. I realized I was now breathing shallowly because to fill my lungs normally was impossible.
I woke my husband. “Something is wrong.”
It’s a small hospital and ER we have there, set up for broken collarbones, Life Flight at the ready for anything more complicated. The doctor recognized me. Or at least his chart did.
“Bug in your ear.”
“So what’s going on?”
“I’m on a book tour, for my new novel. I need to know what this is and if I can keep going.”
I don’t have a favorite novel about pain. Most novels are about pain, of one kind of another, greater or lesser. Recently I was rereading Mary Shelley’s Frankenstein and had completely forgotten that after finishing his creation, ready to trumpet it to the world, Victor Frankenstein instead falls “down in a fit…the commencement of a nervous fever…I was in reality very ill; and surely nothing but the unbounded and unremitting attentions of my friend could have restored me to life.” Victor’s basically out of it for months and lets his creation wander around doing God knows what while he rests and recovers. And we all know how that turns out.
This doctor listened attentively to my symptoms. He ordered an ECG and bloodwork. There were no other patients in that early morning. He came back to the exam room quickly, looking grave. One of the tests he had ordered for me was called a D-dimer. The D-dimer registers if your clotting function has run, like a monster, amok. He said my numbers were through the roof. I tried to process this. My husband had gone out to park the car and meet a friend who might be able to take care of the dogs.
“I’m sending you over for a CT Scan with contrast right away.” For a moment the doctor’s grave face dropped, was almost excited. “It’s a brand new machine. We’re very lucky to have it. Best in the West!”
I’d never had a CT scan before. I am a lucky human being. I’d never been past the first room, the first level in an ER. The scan was quick, the dye running through my blood strange, a hot, lightning-fast rush that tasted like an auto shop in my mouth.
Back to the exam room. Waiting alone. The doctor returned looking positively morose.
“It’s as I thought. You have a blood clot. A very large clot, in your right lung. It is life-threatening. I want to admit you, okay?”
He kept staring at me. As though he expected me to do something. Wail. Buckle. Plead.
We don’t do that. We’re not brave. We just haven’t had enough practice.
He told me that two weeks before, he’d had a Mixed Martial Artist in this same room, huge guy, same diagnosis, and he’d starting crying like a baby. (Does HIPAA allow you to say that, I wondered?). I’m not saying this physician was disappointed in me, but he decided to take me into another room where he could show me my scan on a computer. On the black-and-white screen, my chest had been sliced like deli ham. The clot in one slice started as a small, pale bloom. Going deeper, it ballooned into a gray mushroom cloud. The matter was both size and position.
Again I was lucky; it had not gone to my heart or brain but instead to the “end of the line,” as the doctor put it, the bottom of the pulmonary artery. Unfortunately, there it had cut off circulation, so there was infarction. I knew the word from my father’s heart attacks. The tissue, with no blood to feed it, starves and dies. The doctor estimated I had already lost five percent of that lung’s function.
The book industry, after all, like so many industries, is a highly competitive one. Success is tenuous. Failure looms. Get back on that horse.
I looked on flatly, emotionless, dully curious, as my husband found us, was instantly horrified by the diagnosis, and bluntly asked if I needed to go to a bigger hospital.
“You can,” the doctor said, unoffended, “but any hospital is going to do the same thing. Heavy dose of blood thinners. Starting right now.”
Another doctor came in. A shift change. Another somber face, words repeated. ”Life-threatening.” “You can die of this.” “Thirty percent mortality rate if untreated.” But I was going to be treated, so…
“So I hear you’re a writer.”
“What kinds of books do you write?”
“Gothic novels.” Breathe. Shallow. “You know, people die. But they don’t really die.”
“That’s fiction.” (I couldn’t tell if this was a question.)
Later, alone in a hospital room after I’d sent my husband away, I cried and cried. I uncurled, uncongealed, let go. I was, at last, scared—but I was also immensely relieved. I was being advised to stop. There was nowhere I could go now. There was nothing to do, I decided. Except stay here. I was fed the thinning drug Eliquis. I was given painkillers, regularly. (Nurse: what would you say your pain level is?” Me :“Six?”) The nurse tried mild doses in my IV at first, but they didn’t work. So they ordered stronger ones. I could finally lie back. I adjusted the hospital bed. I started to doze. I felt how a well-loved infant must feel, blank and attended to. I thought, before I passed out, that in the morning I would text my publicist and tell her to cancel the rest of the tour. This was so nice. The end of the line.
I did type a text in the morning. But I erased it. I was starting to feel better! With less pain, I thought, could I still make those Colorado dates?
A week later I was in front of audiences again. The book industry, after all, like so many industries, is a highly competitive one. Success is tenuous. Failure looms. Get back on that horse. I told the readers I met (at two different bookshops, a private book club, and a convention of Western booksellers) nothing, of course, about the clot, the infarc, the ongoing drugs. I just gave my performance, went back to the hotel, and slept for 12 hours straight, because each appearance took everything I had out of me. (Don’t blame my husband, by the way. Nothing, nobody, no one but me decides what to do with my body. Got that?) The embolism by then was breaking up.
Occasionally I was coughing up little dime-sized nuggets of red-black sludge. The last doctor had told me about this. She called it debris. Debris was a good sign so long as it was in small bits, and not often, she said. My body was cleaning house. (Just to be safe, though, I had checked, and all my remaining hotels were close to ERs.)
Only one more reading to go. Months earlier, arranging the tour, my publicist had given me a choice of several bookstores in the San Francisco area. One was a store on the east side of the bay, and she was surprised I chose it instead of another one, better known. I had chosen the smaller store because it was in the neighborhood my family, when I was small, had emigrated to when we came to America.
I wanted to go back to where it all started. I hadn’t told my mother (or anyone) overly much about the clot, but I did tell her about this bookstore, and gave her the address, and she thought for a moment and said it was only a few blocks from where my father had worked for a short stint as a butcher’s assistant, and where she had worked in a deli, thinly slicing meat. They had both hated those jobs. All they had wanted to do was move up, up, up to the next level of the scale. It was California. And so full of promise.
They rose and rose, from small apartments to large houses. After each of my father’s heart attacks my mother made him a photo album of happy, inspiring pictures and words, glowing articles about him in the trade papers and the San Francisco Chronicle, to help him get back on his feet. She called these his “feel good” books. Don’t blame her. My father didn’t need much nudging. After his second heart attack I had called him, begging him to rest, please rest. “But if I am not doing something I start thinking,” he’d said.
I had always thought of myself as so healthy. Didn’t that matter? Didn’t clots happen to a different kind of person, more sedentary, unmoving, not like me at all?
He didn’t live to see any of my books published, including the one with a bloody shoe in it.
The tour finally done, I and my husband and the dogs returned to the Pacific Northwest, that upper right lung of the nation, full of rainforests and high concentrations of oxygen. It felt good. I still got winded and couldn’t hike or walk very far, but I could breathe in deeply. I was still on blood thinners yet continued to improve. The stabbing pain in my side was less obvious. There were follow-up appointments to check on my heart, an echocardiogram to make sure its valves and chambers weren’t damaged, lung function tests inside sealed plastic chambers, searching stethoscopes to assess for pulmonary hypertension, a form of high blood pressure in the chest. All was well.
I fell into a depression. I had always thought of myself as so healthy. Didn’t that matter? Didn’t clots happen to a different kind of person, more sedentary, unmoving, not like me at all?
Maybe I should take at least a year off to rest, I thought. Maybe not write or sell any writing at all. Just hang out with my family. See what that does.
That was six months ago, and here I am at my laptop. Every hour or so I get up from my desk and walk around a bit, shaking, stirring my blood like salad dressing. In the end, my doctors concluded that, because of my overall good health, my body “had tolerated the clot well.”
Not long ago I listened to an interview with a tech guru, one of the giants, one of those who makes it possible for us to see each other now through these screens, and he commented that he thought the younger generation, the one just coming up, might turn out to be a truly great generation, because unlike my parents’ generation, or my own, they were challenging the idea that we should sacrifice wellbeing for work and success, and were actively (or actually in a rather relaxed sort of way) refusing to define themselves by any sort of climb, while imagining there must be better forms of measurement, a different kind of yardstick, in life.
In other words, they are not going to just tolerate it.
And I’m pulling for them.