(2005) by Naomi Weisstein — The first rule of a hospital is: don’t believe the patient, even if she’s shouting with pain. She may just be kidding.
The House of Love: or My two weeks in the hospital fighting to stay alive against the sexist, ageist, authoritarian, negligence of the hospital staff by Naomi Weisstein
(Editors Note: Naomi Weisstein was hospitalized and tells this story of our modern medical "system". Naomi isbattling Chronic Fatigue Syndrome, but is still an active feminist and does her best to keep up to date in her scientific field of psychology. Naomi is a former member of the Chicago Women's Liberation Union).
The first rule of a hospital is: don’t believe the patient, even if she’s shouting with pain. She may just be kidding. When I got there, on a Tuesday afternoon, I’d been throwing up for 3 days -- and throwing up clotted blood for 2 days. My stomach was so distended you could trace its hard outlines pushing out around my abdomen.
But on Thursday night, two days after I got to the emergency room, where it had been established that my stomach was paralyzed and nothing was passing through it, and hence, the head gastroenterologist had said I had to have an NG tube and a pump at all times, I was without the tube and screaming with pain again. My stomach was the size of a Macy’s Thanksgiving Day balloon.
An NG tube is a nasogastric tube that would be used to pump the accumulated blood and other fluids out of my stomach.
“You don’t need an NG tube, Mrs. Messtein” said the good-looking resident with a number 9 on his T-shirt, Dr. Ortiz. “I’ll give you a Tylenol suppository, honey, and you’ll be okay.”
“I won’t be okay. I need an NG tube.”
I was flabbergasted. Since Tuesday, it must’ve been all over my chart that I should be using a nasogastric tube and a stomach pump. Didn’t he read the notes? After hours of agony in the emergency room the day I got there writhing and moaning, a Chinese doctor entered the isolation room where I’d been placed, strode over to my stretcher and said in a high, shrill voice (the standard of beauty, I hear, for Asian women’s voices)
“Yes,” I groaned.
“I’m Dr. Lee. Please swallow this.”
She inserted the first of the many nasogastric – NG – tubes I was to receive. It was a rubber length of tubing that went in my right nostril and down my throat all the way into my stomach.
“Swallow. Swallow. Swallow. That’s good. Keep swallowing.
Great quantities of coagulated blood, “coffee grounds” came erupting out of the other end of the tube. Then she took a hand pump, and more quantities of coffee grounds came out.
“There!” said Dr. Lee, “You see? I’m the only good doctor here!”
“Thank you.” I whispered. The NG tube hurt my throat and my nose, but my stomach stopped threatening to explode.
“I’m the only doctor around here who knows what she’s doing.”
She left the room.
She had left instructions that, until my stomach started working, I should have an NG tube and a pump at all times except when they were doing procedures. The staff seemed to be following her instructions. The next day, after a procedure -- a CAT scan – where the NG tube had been removed, three floor doctors walked into my room unbidden by me or my nurse and reinserted the NG tube.
I gave the name Dr. “Parsnip,” to the head of the team, because although he was tall, he had a tiny head that hardly blossomed out of his neck. Dr. “Violin” was shorter, with cute curly wide lips that looked like the bridge of a violin. And poor Dr. “Junkie”, the lowest in the rank of the three and therefore, the one who was constantly deprived of sleep, was twitching like a heroin addict in a Raymond Chandler novel.
(The second rule of a hospital is that if you aren’t important in the status hierarchy, your sleep is not important either – not for the patients, not for the interns, not for the residents, -- at times, not even for the young attending physicians).
When Dr. Parsnip had inserted the tube in my nose and I had swallowed it, Dr. Violin took a hand pump, and pumped out more coagulated blood, like Dr. Lee had done the day before..
“We won’t attach the mechanical pump until the x-ray technician checks that it’s in your stomach.
“Too bad!” I said grinning. “I thought Dr. Violin was going to stay here all night and pump the stuff out.”
Dr. Violin came alive. His wide curly lips stretched into a movie star smile, and his cheeks colored.
“I could,” he said, flirting. “I’m on the floor all night.”
(And he did pop in later on. “Supersex!” he said, an old joke, to which I answered “thank you but right now, Dr. Violin, I think I prefer the soup.”)
And now here was Dr. Ortiz telling me I didn’t need a tube?
“Didn’t you read my chart? I asked.
“I read your chart”, said Dr. Ortiz.
“Dr. Lee said I should keep an NG tube in at all times.”
“Now look,” said Dr. Ortiz. “I have six patients on this floor that are in much worse shape than you.”
The third rule of a hospital is that yours is a trivial case and you shouldn’t be attended to until they deal with all the other really important medical emergencies there. Maybe in about 3 weeks they can get to you.
I was bellowing again with the pain.
“I don’t need this,” said Dr. Ortiz.
I stopped shouting. “Are you telling me - ?”
“I’ll give you Tylenol. Nurse!”
“Are you telling me –” I was trying not to howl. “Are you telling me I was ambulanced to the hospital, sirens wailing, my husband Jesse sobbing, and me trying to remember my bruchas, just to be told –
“I’ll get you Tylenol.”
I was shouting again. “Just to be told YOU DON’T NEED THIS?”
“I’ve had four patients who –“
“Look at my stomach. Look! Look! I need something to pump it out. I’m having Rosemary’s Baby!!”
Bad joke. Number one, he didn’t know who Rosemary’s Baby was. (He was 7 years old and still dressed in his little red velvet shorts suit when the movie about Rosemary having a monstrous baby after being raped by the devil was playing). Number two, if he’d had known who Rosemary’s baby was, it would have gendered me even further than did my age, small frame and obvious distress. I would have become some little old lady who might be psychotic – might actually think she was having the devil’s baby.
“You aren’t having a baby, honey. I’ll order some Tylenol.” He walked out of the room.
I took the Tylenol. The pain was intermittently awful, and a half-hour later I was screaming again.
The floor nurse came in. We had been joking about her childhood in Antigua before, and she was friendly.
“What’s the problem?”
“I need an NG tube like I had yesterday. The doctor took it out to do an endoscopy, and forgot to put it back in.”
“Doctor doesn’t forget things like that,” said the nurse, but she was feeling my huge protruding stomach with some concern. She adjusted her stethoscope and listened.
“There aren’t any bowel sounds,” she said.
“I know. My stomach is paralyzed. I’m not passing anything down to the gut. I need an NG tube to get these fluids out of me”, I moaned. Why was I having to act as my own medical spokesperson? What if I was too weak to talk? Who would be my advocate then?
“I’ll get the doctor.”
An hour and a half later, Dr. Ortiz came back with a little length of rubber in a plastic wrapping. The NG tube.
“Okay, Mrs. Murk, you know the drill.”
I opened my mouth and swallowed the tube. Then he hooked up my NG tube to the smooth sounding machine with tiny flashing red and white lights. Again, as in the past, quantities of coagulated blood came pouring out, and into a plastic tub that was placed on the floor, at the foot of the machine. The relief was instantaneous. I tried not to, but I thanked Dr. Ortiz anyway.
“Oh thank you Dr. Ortiz. Oh thank you. I feel so much better...”
“Why do you have that “nine” on your shirt?” I asked.
“You didn’t win it in LaCrosse? Field hockey?”
Dr. Ortiz had pretty black-circled green irises and long black lashes. Like most of the young residents at Lenox Hill, he had hard abs and prominent deltoids. He talked like he watched the television show “E.R.” devoutly -- half tough, (e.g. the “drill”) half-faux sensitive: (e.g. he probably thought I’d like his calling me “honey.”)
Underlying the arrogance, there was that faint whiff of ”I don’t know what the hell I’m doing.” If he knew, he would have at least listened for evidence that I had my bowel sounds before he told me I didn’t need an NG tube. He would have at least felt my stomach. For that matter, although it would have prolonged my suffering, he would have called in an x-ray technician to make sure the NG tube had landed in my stomach before he connected the pump. But I was so relieved. I fell asleep for the first time all night, at four in the morning. (It turned out, as I learned later, that I had already been identified as a “troublemaking old lady” when Dr. Ortiz came to see me. Apparently, this stereotype was sufficient information about my case for him to conclude that he didn’t need to read my chart, and thus he didn’t need to insert the NG tube and stomach pump that Dr. Lee had said I needed at all times. More about this later.)
“Good morning Dr. Weisstein”
I jumped awake. “Huh? Have I won the Nobel Prize?”
“I’m sorry. I don’t understand.”
“You called me by my actual name! I must have rocketed up in the hierarchy.”
It was my lovely private duty nurse, Anne St. George. I realized she was using a formal “Dr. Weisstein” because others were in the room, and she wanted the hierarchy-ridden Lenox Hill staff to have respect for me.
“You have to get ready, Dr. Weisstein. Transport will be here in five minutes to take you to your barium swallow. We have to find out why your stomach is paralyzed. You can’t have an NG tube in there forever.”
It was now Monday morning. They had been testing me since the previous Tuesday, -- almost a week ago -- when I had finally agreed to go to the hospital.
I’d been in bad shape when I went in. I had been throwing up anything that I put in my mouth for three days, even a sip of water. The vomit looked like fresh blood. Also, a series of blood tests given Tuesday morning, showed my white cell count was past critical – 40,000/ mm3. (I was usually below 10,000) My blood sugar was alarmingly high, 450 mg/ml (110 is considered normal). My heart rate was also dangerously high at 180 beats/sec – 60 is normal. One of my main doctors had pleaded over the phone with Anne: “she’ll die if she doesn’t get to the hospital right away. Please convince her to go.”
When I arrived they had flooded me with antibiotics and my white cell count was now down. They were giving me insulin twice a day, and my blood sugar was back below two hundred. They had done an electrocardiogram and a carotid artery scan to see if I was in danger of cardiac arrest. I wasn’t.
But my stomach refused to pass along its contents further down to my gut and all week long they had been testing me to find out why. While my stomach distention and pain had been greatly relieved by Dr. Lee’s NG tube, and the subsequent ones that Drs. Parsnip, Violin and Junkie and Dr. Ortiz had put in, everybody kept telling me, “You can’t keep an NG tube in there forever.” We had to keep exploring the mystery of my paralyzed stomach and get it to function again.
They were getting close to giving up on the tests they could do for what was wrong, though. They had already done a total body CAT Scan to see if there was an obstruction someplace in my GI tract. No blockage found. They had done an endoscopy to further check blockage in my stomach. Nothing there. They had done a gall bladder scan to see if the bile ducts were closed. No problem there. They’d given me some radioactive eggs and jelly, and I watched from my supine position underneath the digital camera in Nuclear Medicine as each successive one-minute computer picture of my stomach showed the equivalent of powdered radioactive eggs and jelly just sitting there, not moving (they pumped it out later in the day). No stomach motility, even though they couldn’t find any blockage.
What was wrong? That morning I was scheduled for a “barium swallow”, that would radioactively outline my entire G.I. tract and trace any obstruction, pathological narrowing, blocking mass and/or diverticuli that I might have.
“Are you ready for transport?” Anne asked when the team came in.
“I’m always ready for transport.” I answered.
Transport to my various tests down at Nuclear Medicine, and other places in the hospital had become one of the high points of my day. It didn’t have to be. It depended, first, on the transport staff available that particular time of the day. The initial transport team I had on Wednesday, when I was taken for my CAT Scan, was horrible. There was Vernon, who looked like a solid block of concrete from his (probably) ex-con’s head through his barrel chest to his huge feet. He was accompanied by an unnamed young man with a razor face and tattoos all over his arms and neck (“got ‘em in the military” he mumbled when asked. “Gulf War”). They made me think I’d descended to the 4th circle of hell. Vernon yanked the lavender goose down comforter I had brought from home off the stretcher where I was clutching it. Hospital temperatures were extremely cold, night and day, as I’d found out from previous stays. They were protecting the equipment and letting the patients go to hell.
“You can’t take that with you” he grunted.
“Why not?” said my angel nurse Anne. “She needs it.”
Vernon was not expecting opposition. He didn’t answer. Anne started placing it over me again.
“It’ll.... get ...uh ..[he thought hard] ... uh ... dirty!” said Vernon, and yanked it off again.
“She needs it” said Anne, and placed it on again.
The staff nurse intervened, being ranks above transport in the strict and strictly enforced, venomous hospital hierarchy. “She can take it.”
“Okay” said Vernon, flashing the nurse a murderous look. “Whatever.” Razor face joined in. “Whatever you say” he fumed.
“It’s not your job to decide”, snapped the nurse.
“It’s not your job to decide” mimicked razor face in a soft high falsetto.
The hatred was flying.
But transport got much better after that, and this following Monday for the Barium Swallow I had another, much more laid back team and as I found out later, an affectionate one as well: Carmelo and Sharon. They were gentle in transferring me from the bed to the transfer board and from the board to the stretcher. They asked me if I wanted to have my head up a little so that I could better see what was going on as they wheeled me down the corridors. They let me keep my lavender blankie.
When they started wheeling me along the corridors, I became, as usual, happy. Later on, I’ll talk about my twenty-two bedridden years lying in a mostly darkened room; for now, I’ll just say my exposure to all this brightly-lit activity was thrilling.
One has to imagine a music/computer sound track to accompany the wheeling. There are electronic beeps and small squawks, a speeding two-four drumbeat and a running rock bass. When you’re on the stretcher with your head raised high enough to observe what’s going on, it looks like frames of a movie just jump-cut fast enough so scenes fly by staccato. You see people being caught in mid-intention as they move to accomplish whatever it is they’re supposed to be doing.
The hospital is a honeycomb of job status, gender, race, class, good looks and experience. These form the six walls of the cell of peer interactions: the young Asian nurses’ aides; the Jamaican custodians; the Puerto Rican transport workers, the American black female administrators with their hair in drop-dead straight or balloon-frizzy weaves, the old white-haired Irish-American shipping and handling men; the young white female technicians with the just-washed bottled blond hair shine, the Jewish, East Indian and WASP doctors. Everybody on the staff probably recognizes everyone else, but their interactions are largely limited to their position in the hierarchy.
One’s particular cell of the honeycomb determines the appropriate salutation. Transport personnel greet each other with an almost surprised “hey!”, the vowel shortened like in Spanish, and modulated by how friendly the two people feel towards each other. (Unless they’re actually Hispanic, in which case they say “Esta?” or “Como esta?”)
There’s a longer “hey!” for a patient on a stretcher with an unusual appearance, in my case, a screaming lavender quilt so different from the white basket weave blankets usually inadequately covering the patient’s body.
“He-ey!” said the six Black custodians lounging on some dumpsters as I whizzed past. Three of them rose.
“I like your blanket”
“I want your blanket”
“Sharon, please hand me that pretty quilt.”
“Hey!” said Sharon, in standard shortened-vowel-transport-greeting.
I was rolled into a long, chilly corridor outside of the nuclear medicine testing suites, and parked along side three other supine patients on stretchers who had been waiting for godknowshow long. My fascination was replaced with boredom, cold and finally distress. The nurses hurried by, rubbing their arms from the chill. Mike, the head tech of radiology came out many times to assure all of us patients: “You’ll be next,” or in the case of female patients, “you’ll be next, sweetheart.”
When I was warehoused here in Nuclear Medicine on the first Thursday after I got to the hospital, waiting for my abdominal motility test, a stretchered patient ahead of me kept making jokes. Good ones, if familiar. We both were given radioactive eggs to eat. “I’ve always been known for my glowing personality” he said. And when they told him he’d be next: “Ready for my motility test, Mr. DeMille.” But after an hour of waiting, even he got cranky.
This frigid morning, however, nobody made jokes, even at first. A woman on a stretcher in front of me was near tears. “I can’t be left in the cold like this” she protested. “You know I’m still recovering from pneumonia.” “Oy vay,” I thought to myself. I’d contracted pneumonia once before in another hospital. I asked my nurse Anne to go over to her and see if she could help her.
“What can I do?”
“Who are you?”
“That patient’s private duty nurse”
“Get me out of here. I’m freezing”
Anne went to get Mike. “She’s next” said Mike.
Of course the fourth rule of the hospital is that patients must wait.
The patients must be awakened after nights of little sleep, rushed to Nuclear Medicine, or Endoscopy, or Gallbladder, or the Morgue, and there the patients must expect to wait. They must expect to wait on their stretchers interminably, warehoused up against other patients, with no nurses in attendance, shitting and peeing and groaning and shivering and sometimes shrieking for, literally, hours.
I myself had two urgent bowel movements, “bee-ems,” while I was on the stretcher, in public. Bedridden as I am, couldn’t walk off the stretcher and into one of the toilets on the corridors. So I shat to the accompaniment of the transport “heys!” and the scheduler’s “you’re next” and the headnodding doctors greeting each other in their honeycombed way: (Nodding one’s head is the shortened equivalent of “hello” in the doctor’s status cell of interaction) Dr. Wolf nods his head and says “Dr. Fox?” Dr. Fox nods back and says “Dr. Wolf?” A third doctor joins them. They both nod and say, “Dr. Budgerigar?”
When I was first brought to the Emergency Room, I waited on a stretcher for 10 hours before they wheeled me up to a room. (I was lucky enough to have a private duty nurse, so that I could shit and pee in a pan.)
First, I was put in an isolation room. But eventually they needed it for a much worse case, and I was wheeled out into the main “ER”, and jammed up right next to a teenage girl who was coughing great hacking coughs and who was said to have encephalitis. (There was a plaid curtain suspended from a track in the ceiling closing off her bed from mine, as if that visual barrier would have prevented the spread of anything.) In the ER, I had my NG tube in until I coughed and sneezed it out at about 11:30 P.M. Then they realized I wasn't supposed to have an NG tube there at all, because it meant that the contrast fluid I had ingested for easy identification of organ blockage for my CT scan had been pumped out. They had asked me if I would take more fluid, and wait another two hours until it seeped back into my major organs.
That would have made it two in the morning before the CT Scan would begin, and four in the morning before I got out. I said no. “But the CT Scan is very busy in the daytime, and it’s much less crowded at night. You’ll like it much better at night.”
I didn’t know about it then, but that was my first bad move in the hospital – even before I had made the joke about Rosemary’s baby that Dr. Ortiz didn’t understand. The word went up to the floor that I was scheduled for that I was a “troublemaking old lady”. (My private duty nurse, Carmen, adept at making friends, wormed this out of the nurses at the station later on in my stay). I myself had wondered at the initial hostility of the nurses when I got to my room.
“Now, I’m the head nurse here”, said the tall nurse with a thick Irish brogue, “and I don’t want any trouble from you.” At the time, I thought she said it to every patient, or at least every old, female patient. But I had been stigmatized.
This freezing morning, I waited for my Barium Swallow for 4 hours. But it wasn’t because I was a troublemaking old lady; everybody, as I said, was waiting.
How do you wait for four hours? First you don’t know it’s gonna be 4 hours. So you start to pass the ten minutes you think its going to take. I joked with husband Jesse and nurse Anne. Then Anne sat down some distance from me on a crate of empty enema receptacles that we overheard the white-haired Irish-American shipping-and-handling men say was going to be returned and Jesse went off to argue about the delay with all the relevant administrators in charge: nursing, transport and radiology.
I myself began that morning’s observation of the anthropology of the hospital, -- this time of the action outside the Nuclear Medicine administrative station. From having waited for a variety of tests, I was already familiar with the players there, so these were continuing stories. The priapic male who had made an appearance when I was waiting for my gallbladder scan was back again, flirting with the light skinned and well coifed (one would say she had “good hair”) black sub-administrator behind the wide counter that also held another, darker-skinned sub-administrator who was lean and tall and had on a soft-looking sweater that invited cuddling. The concupiscent man was rubbing his crotch against the counter while talking to “good hair.”
Then good hair got up and came around the divide for a short errand. Priapus turned his attention to cuddly sweater. They were almost out of earshot, but it seemed the dialog went something like this.
Priapus: “That’s a cool sweater. So soft.”
Cuddly Sweater: “Thank you.”
Priapus: “May I feel it?”
Cuddly Sweater holds out her arm.
Priapus: “No, not there. Hah Hah Hah
Hah Hah Hah Hah.”
Cuddly Sweater: “Hah Hah.”
In general, the hospital is a “hot” place for much of the staff. Nurses’ flirt with doctors; doctors, as I found out when Violin, Parsnip and Junkie inserted my NG tube, flirt with patients. Sub-administrators flirt with transport, transport flirts with everybody.
The flirting is mixed in seamlessly with ferocious prison guard behavior. While I was waiting the Thursday after my arrival for my stomach motility test, a Nuclear Medicine tech aide with hair the color of a can of lemon pledge got furious at Jesse and Anne for daring to try to visit with me after I had already been placed under the camera (but was waiting for the techs to get ready). She almost pulled out what I imagined was her tiny pearl-handed revolver that she might have carried inside her white tech coat. But as she was, I imagined, reaching for the gun, the head tech walked by smiling and she careened off into a hip swaying, jokey, sweet-faced giggly, wouldn’t-hurt-a-flea conversation with him.
She was present again this morning, making absolutely sure that Jesse didn’t use his cell phone (only permitted in the case of doctors and nurses. The cell phones were assumed to alter the functioning of the machines; (recently they found out that this isn’t true) but then why did the hospital permit doctors and nurses to yap away at their pleasure?)
I asked one of my other private duty nurses, Nicole, why she thought the hospital was such a hot place (when it wasn’t being such an angry place.)
“They get angry because they’re allowed to,” she answered. “And they flirt because everybody has a job.” I think in certain ways, she’s right, about the flirting. It’s a giant mixer where everybody in the hospital, at least on certain shifts, gets familiar with all the others working the place and they begin to look good to each other. And there is another reason for the heated up atmosphere of sexuality I think, having to do with the altruistic meta-purpose of a hospital, namely to heal the sick. Healing, altruism, selflessness may bring out the erotic in people. I’ll get back to that reason in more detail later on.
After the anthropology I started reading a trade magazine, half of which was devoted to reporting scams in the hospital biz, and half of which was devoted to sharp new schemes -- future scams -- that had turned specific hospitals around and made them profitable.
Then I closed my eyes and started reviewing my “case”.
I was sick long before my stomach seized up and I had to go to the hospital. I’ve been bedridden for twenty-three years with Chronic Fatigue Syndrome, more accurately called Myalgic Encephalitis and Chronic Fatigue and Immune Dysfunction Syndrome, ME/CFIDS. I have continual killer headaches that make migraines look like a picnic, photo-and audio sensitivity, hypersomnia alternating with frantic insomnia, constant fatigue so severe that even brushing my teeth is equivalent of a triathlon, and devastating vertigo. I can’t keep my eyes open or read for long, or I start clutching the bed to stop myself from imagining that I’m spinning off the surface. Then I close my eyes for a while, and take some dopamine eye drops, if it’s time (they have to be three hours apart) and if I’m lucky the spinning will stop. If I’m not lucky, on bad days, even with my eyes closed, the acute episodes alternate with the sensation that I am on a capsizing ferry steaming towards New Jersey.
The worst part of ME/CFIDS is what they call “Post-Exertional Malaise.” If you try to do more than your body can do, you get horribly sick, and the collapse can last for months if not years.
When I first got ME/CFIDS, I refused to admit that I had to slow down. But, as a CFIDS buddy keeps telling me “the disease is unforgiving. If you overdo it, you pay.” And I did pay: two years after I fell ill, I got so sick from overexertion, I couldn’t read, talk, listen, look, visit or get up from a supine position. I had to wear a light-blocking mask over my eyes in a darkened room at all times. Nurses had to feed me. They had to whisper if and when they talked to me. All I did was lay quietly as best as I could, -- interrupted by my moans of pain and screaming from the acute vertiginous spinning – all day long, and half the night (when insomnia attacked).
“Your wife’s a vegetable” one helpful doctor screamed at Jesse during this period. It wasn’t at all true – my mind kept racing and tumbling, and I wrote five novels in my head during the time I was so sick, just to keep myself from going crazy with the boredom and pain. But on the outside, I could have been mistaken for a head of broccoli. I was almost completely locked in.
At various times after that, a variety of neurological interventions and a transfusion of 12 pints of whole blood improved my condition, so I’m not as bad as I used to be. But no medical therapy works for very long. I develop tolerance to even the most effective of them. Additionally, if I am required to do more than I can muster the energy for – even as small a task as listening to someone with a loud voice, or listening to the radio for more than my allotted 5 minutes a day, I suffer horribly all the next day, or all the next week, or all the next month, depending on how serious the over-exertion is.
That is why I resisted going to the hospital so adamantly in the first place, even though it was clear to me that something was horribly wrong. Every interaction and procedure in a hospital is fraught with terror: will this be the final push over the brink of “post-exertional malaise,” back into the almost completely “locked in” state of former years? “Vegetable” on the outside, bored, pain-compounded frenzy inside my head.
When I open my eyes again, I concentrate on the two prints on the wall above my stretcher. Lenox Hill has prints on all the walls, beginning with the late 19th century impressionists, through fauves and modernists. It makes transport even more delightful.
I play Descartes with the prints. I call the game “Descartes” because I am trying to figure out why something is the way it is with out any help from the facts other than those immediately before me – the rest of figuring something out is only from, as Descartes said, the pure and direct light of reason. It’s an old game: I introduced it to Jesse a long time ago, when we began courting, and took a wild ride from New Haven to Chicago. Jesse drove with his pants off all across Ohio, while we commented Descartes-style, on everything by the roadside, and waited for the state troopers’ siren to tell him to pull over.
“Well you see officer, my elastic broke and then I had to pee and .....”
Now I turn my attention to the logistics of the prints. Who ordered these prints? Why these? Why no “old masters”? I decided that it was a package deal, -- 100 prints framed under glass for, oh, say $10,000. I hypothesize this on the grounds that nobody on the hospital staff has the time, patience, or expertise to choose these particular prints one at a time. Maybe in the seventies, when all services, even private hospitals, weren’t so starved for cash,(hadn’t yet gone into skimming and scamming schemes like managed care so only those on the very top profited from whatever revenue came in) they might have had an “environmental therapist” who chose prints for the walls. (And decided not to have any old masters because it would make patients think they had already died.) But not any more. These prints were from an outfit that specialized in medical, and maybe other “ambiences.” “For you, no old masters --- $7,500!”
After three hours of waiting, I also play Descartes with the particular prints I’m looking at – trying to concentrate hard enough on what the artist was trying to convey so that I won’t have another explosive, watery, embarrassing, messy “Bee-em” right in the hall with all the traffic spinning around me.
At noon, Mike came out and told me I couldn’t have the barium swallow anyway. They needed to do a more probing endoscopy – an “enderoscopy.” The waiting in the glacial corridor was in vain. They were sorry.
What was I to say? “But you didn’t consider my post-exertional malaise. You have to be careful with me. I can get sick as a dog at any time.” I was wheeled to the endoscopy section to wait another hour.
Jesse, who, after talking to some administrators about the wait had come back to keep me company took off again to argue with them about this latest muck-up. He was extremely angry. But they were waiting for him. They apologized, smiling, for the unfortunate scheduling “problem” with the barium swallow, and then they counter-attacked. Jesse, who had been posting bulletins via e-mail to my various listserves, friends and colleagues, described it this way:
Readers who see this on CVNet or the feminist psychology listserve will be interested in learning that, perhaps for the first time since the collapse of the USSR, a high administrator angrily tore down a posted copy of a Science reprint. To give Naomi a face in this depersonalizing situation, I posted on the door to her room a copy of her 1977 "Adventures of a Woman in Science," a copy of her "Neural Symbolic Activity: A Psychophysical Measure," (Science 1970); and a couple of supportive e-mails (with names and addresses rubbed out.)
Nurses had found these informative, and one spoke movingly of her daughter's attendance at a special science high school in Queens. These were all torn down while Naomi was waiting for the Barium Swallow by the hospital's Director of Nursing, probably because of content (one supportive letter had spoken of the writer's family's bad experiences at Lenox Hill); but, seeing that objection to content wasn't a very acceptable reason, various other contradictory rationales were offered, including vague "regulations" (which were never shown), and, from the hospital's legal department, reference to "infection control"! I took a picture.
Later, the hulking Director of Security and his assistant, two huge suits, came down the length of the seventh floor, in a High-Noonish scene, to threaten me for having taken a picture of the tearing down of the material on Naomi's door. One of Naomi's most admirable moments in all this was a rasping but eloquent speech delivered despite the NG tube to the Nursing Supervisor, in which Naomi offered her condemnation of the tearing down of her work, and objecting to the warehousing of herself and her fellow patients.
When I was wheeled out of the Barium Swallow holding area into the endoscopy suite, I asked, “When will Dr. Lee be here for the endoscopy?”
“She’s usually on time”, said Marie, “What a lovely purple quilt. My favorite color.”
“And mine” I said. “I hope she’s on time.”
Endoscopy was a suite with relatively young techs, and the young Dr. Lee whom I had already encountered in the ER. She was as thin as a paper clip, and dressed in suits so sleek and tailored, they were beyond what was worn on the TV show “ER” – arching over, perhaps, into “Law and Order?’
While we were waiting for Dr. Lee to arrive, the young techs played rock, from one of the amplifiers they had hooked up to a snazzy desk-top radio. You couldn’t fault Lenox Hill for technology, although they might’ve hired a good queuing theory tech to make a computer program of schedules that would minimize patient’s waiting.
As usual neither Jesse nor Anne was let into the endoscopy suite, although it had been their practice to accompany me every place I had to go, -- and to be shouted out of the rooms that I was in. Why did everybody get so angry?
When Dr. Lee arrived, my second endoscopy went as smoothly as my first, and as before, no obstruction or mass was found. The anesthesia I was given was superb. I remember the endoscopy I had had twenty years before, when I had been told to swallow an even thicker tube than the naso-gastric one, with a probe on the end. It was as if you were experimenting with a horrible new way of asphyxiating yourself. But here, from almost the minute Dr. Lee took out the NG tube and put in the endoscopic probe and told me to swallow, I remember nothing. The anesthesia was timed exactly -- a technological marvel: When Dr. Lee was done, she said “Okay? Okay!” I heard the first dimly; by the second I was wide awake. Technology! Don’t nobody ever knock it when it’s done in the service of the patient.
“You’re Sharon, I know” I said to the original transport team when they came to wheel me back, and the virtual movie soundtrack began again -- the two-four beat, the computer squeals, the “Hey!” and “Como esta?” to friends in the halls.
“How do you know that? You’re very observant”, she said.
“I heard somebody calling you that.”
“And you’re –“
“Carmelo” said the other transport worker, happy to be recognized.
I had concluded that patients rarely talk to transport, maybe adopting the poisonous hierarchy that you only talk to those of higher rank, or maybe because you are just too weak or sick or in pain to hold any kind of conversation except to those you actually have to talk to.
I found the various kinds of hospital workers below the status of nurse friendly and happy – sometimes even thrilled to have a patient actually talk to them. And, of course, given my twenty-three years of painful isolation I was thrilled to talk to them. My Jamaican greyhound-hipped custodian had said “You know who I am” with delight, when we had exchanged pleasantries about our earrings. Carmelo was even more forthcoming. Back in my room when I was transferred from the stretcher to the board, and the board to my bed, he noticed I was wearing socks with black and white blotches on them. Carmen, my night nurse had given them to me as a birthday present.
“Mooz socks” he said in his lilting Puerto Rican accent. (He had already described the history of his travels back and forth between the U.S. and the pearl of the Antilles, as we were riding in the elevator.), “Ooh! Ooh!” He closed his eyes and pretended to swoon. “She’s wearing Mooz socks!” (Moo socks). We both laughed. (Nicole later told me not to get too cozy with the hospital personnel. She’d also picked up on the sexual overtones radiating in all directions like fireworks – the kind that form a sphere of radial spokes – and she was worried that some “angel of death” orderly would sneak into my room in the middle of the night and lethally inject some air into my veins.)
Endoscopy had found no masses or obstructions. But my stomach was distending again, since I had been without the NG tube for a couple of hours by this time. Anne found Dr. Geller, another sleep-deprived resident whose eyes were permanently pasted open so that the pupils were whittled down to tiny points.
Dr. Geller didn’t give me a hard time about the NG tube. “Which nostril?” asked Dr. Geller.
“You’re not going to be able to have an NG tube forever,” he said, as he made me swallow.
“I know.” I said, “I’ve been lecturing my stomach.”
I swallowed and swallowed.
“There. I’ll get an x-ray technician to come in and see it’s in the right place. Then we’ll start the pump.”
“Thank you .....Hey! Didn’t you used to be on TV levitating trays and bending spoons?”
“That was Uri Geller. I’m Dr. Ari Geller.”
“Oh .....but why did you go to all that trouble to change your name?”
Geller laughed, but when I saw him next, rollicking along on my transport movie, on the way to the next Barium Swallow, I said “Ari!” and he stiffened and said, “Dr. Geller to you.”
“Dr. Weisstein to you” I said back. “And a happy birthday to you as well!” I added, hoping that it would be the beginning of a musical number, orderlies and nurses flinging off their uniforms to reveal gold-sequined short shorts and Zircon-encrusted sweetheart bustiers as they tap-danced to the virtual music. And I would be the center of it, on my stretcher, because I was still wearing my Mooz socks.
I slept for a while after Ari – Dr. Geller to you – put in the NG tube. Apparently, the anesthesia I took for the endoscopy hadn’t worn off as effectively as I had thought earlier.
I woke up to a full house. Staff nurses, as usual, were poking and pricking: blood sugar, blood for pathology, new veins for IV antibiotics, NG tube contents to empty, nasal cannula for oxygen in place; and Anne was making sure I was getting my standard CFS meds.
When she saw I was fully awake, she asked
“Are you comfortable?”
“I make a living” I answered back, showing her I was awake, and repeating a standing joke between us.
Jesse who was at the hospital every day, had made himself comfortable, in a corner of my room, typing on his laptop, the new newspapers, books, and e-mails he brought for me piled precipitously on the desk next to him. He had pushed some of `the profusion of flowers over to make room. He told me that there was also a pile of e-mail to me on the floor.
The attending doctor walked in. Dr. Jemail was a somewhat authoritarian, somewhat irritable critical care and pulmonary medicine specialist, who seemed to have a good nature underneath, and also seemed genuinely to care that I recover. He was good looking in the style of French movie star who plays sensitive, laid-back, a bit feminized non-tough-guy heroes, like the sensitive laid-back, a bit feminized racing car driver of “A Man and a Woman,” (if one can conflate race-car and sensitive in the same description). He was Lebanese-Christian, had done his training in France, wore playfully dressy clothes like plaid shirts and suspenders beneath his White Doctors Coat, and had enormous blue eyes.
He seemed faintly to vibe a European male fussy fastidiousness.
“How are you?” he asked.
“Better,” I answered. “I was down in Nuclear Medicine waiting for four-“
“I know.” He cut me off. “Jesse already told me.” He looked at the oxygen delivery. “You’re still taking oxygen.”
“it helps with the vertigo” I said.
“Okay” he said. None of the doctors knew what to permit for my underlying CFS condition, and what not. He was liberal in what he okayed, like the Procrit, B12, and Dopamine and Adenosine drops Anne administered.
“Dr.Lee says she couldn’t find anything wrong in the enderoscopy.”
“So can I go home now?”
Jesse and Anne laughed. Dr. Jemail didn’t.
“We have to find out what’s wrong. You can’t use an NG tube forever.”
I changed tones, got serious.
“Tell me again what it could be.”
Dr. Jemail went through the possibilities: A blockage we haven’t found yet; a mass; a cancer that has destroyed some of the stomach muscle (unlikely); a “lazy stomach” from lying supine for 23 years or from diabetes, or both (I myself thought both of these unlikely because I had neither reflux nor nausea in the days preceding my attack of gastritis).
“Would you have to operate to bypass the stomach that wasn’t working?” I asked.
“It’s too soon to think of that yet” (i.e. “Yes”).
“Why are there always coffee grounds in my stomach fluid?”
“Possibly because of your previous vomiting.”
“Oh,” I said ...“Then here’s my hypothesis:,” I began. “I ate take-out Thai food, and caught a virus that 2/3 of New York is having – the Norwalk virus. It closed down my stomach, irritated it so it bled, made my diabetes and immune system go kablooey and now I’m slowly recovering.”
“Then why is your stomach passing nothing?’
“That’s a problem” I conceded.
“Naomi is a scientist, you know,” said Jesse.
“She’s probably right,” said Jesse.
Jemail left, and I worried. Then I fell asleep again – soldier’s sleep. You get it on the run in the hospital. Then I woke up and scratched at a rash that was developing on my left shoulder. Then I read and reread the e-mails from my friends.
A nurse came in and did bloods and IV’s and NG tube measurements. I still couldn’t take anything into my stomach except ice chips. “And don’t go crazy with them,” Dr. Geller had warned sternly. “Just a few at a time!” Jesse left. Carmen, my super-competent night nurse came on, and we talked for awhile. I thanked her for my Mooz’ socks. Then she turned the lights out. Time to try to sleep.
But I stayed up worrying all night about what was going to happen to me.
“Patient agitated,” it says on the nurse’s notes for Monday night, that night.
Carmen had closed the curtains in my large corner room with the huge TV that we refused the fee to get it to turn on (I couldn’t watch anyway due to the vertigo TV always induces). My flowers smelled fresh and like earth and grass, still blooming in profusion on the windowsill. The red and white lights of the NG pump shone bright in the dark.
What if I had to have an operation even just to find out what it is in there? I’d never survive.
I asked Carmen to open the curtains and lift the blinds. Unlike the foggy, streaked glass in the windows of my bedroom at home, these windows shone with a lapidary brilliance. (There was a special custodian who came around to wash the windows every other day) It was still early night outside, and the lights of my city of diamonds were blazing, like glowing dominoes stacked in regular patterns up to the sky. My room was facing Park Avenue, and impressive, lighted architectural spandrels seemed to tumble over each other. A brilliant verdigris tower stood above the rest.
An orderly came in to monitor my blood sugar. She started to close the drapes.
“She wants them open.”
“She won’t get no sleep that way.” All three of us laughed. As if patients ever get sleep in a hospital, what with the continual blood drawings and temperature readings and IV adjustments.
But I figured I should at least try to doze off so I asked Carmen to close the blinds and windows, and I started my calming-the-insomnia procedures. I played Descartes: Q: Why were some of the sheets imprinted “Oceanside Linens” and others “Mt Sinai hospital” A: Oceanside was the service, and they mixed up sheets from their various clients all the time. Q: Why did the buildings across the street on Park Avenue look so close to my window? There was a median strip with plantings – flowers in the spring – between the two sides of the street. A: There were no perspective clues between my room and what was across the street, because, from my bed, I couldn’t see the median strip, so the two structures looked nearer.
I recited my special calming poems: “Death be not proud”; “Jesse is my shepherd” (I added verses and rewrote some of what was the 23rd psalm); “The owl and the pussycat.”
When I get sleepy, unfamiliar images crowd into my mind – women in harem costumes doing belly dances; iridescent rabbits with huge purple teeth. It’s called “hypnogogic imagery” and it means I’m going under. I tried to summon these images, but they wouldn’t come.
“What if cancer has already eaten half my stomach away? ...Well, there are a lot more tests, they’re going to do.”
I can’t meditate. I think it may be because, bedridden and unable to read, talk or watch TV for a good deal of my waking hours, I get so little stimulation ordinarily my brain is in no mood to shut out even more stimulation. A former graduate student used to tell me that when he tried to meditate, his teeth would start to grind, he’d get so on edge. He was a pretty wired person anyway, but then, so am I.
If it were cancer, wouldn’t I have felt it for months now? Well...my appetite has been bad for a while...
The orderlies came back for 6:00 AM bloods. I was wide awake..
“Your eyes are all red. You been awake?”
When they left, I asked Carmen to open the curtains and blinds again, and I watched the turning earth lighten the sky. Pretty soon, windows flared red in the beginning streaks of sun.
Time to start another hospital day.
“Dr. Weisstein” It was Anne.
“Have I won the Nobel Prize?”
“Are you comfortable?”
“I make a living.”
“Wake up sweetie, you’re going back to the Barium Swallow in ten minutes.”
“I’m up. Two Swallows do not a diagnosis make. My stomach is paralyzed.”
“Oh, Naomi! They’ll figure it out.”
But they didn’t figure it out. At least, not that Tuesday morning. I couldn’t manage to swallow all the white chalky radioactive barium they put before me, even though the helpful intern working in radiology that day cut the solution with sweetener. But my stomach just ballooned up, and no more would go in. They started some pictures but it was obvious nothing was moving. So they sent me back to my room.
Around 2:30 Tuesday afternoon, as I was bee-eming, explosively, as usual, Anne noticed a white streak in the stool.
“Barium?” we shouted almost simultaneously.
“That’s what it looks like” said Anne. “It’s traveling from your stomach to your intestines.”
“Let’s call Nuclear Medicine and tell them the good news. That means my stomach’s working again.”
“You’re supposed to go back there in a half hour. We’ll tell them then.”
Sure enough, my stomach had cleared its contents in the interim. They took another couple of pictures, but again they stopped, because there was nothing to image. The barium was all gone, my stomach was empty.
Empty! I could go home now.
But, it turned out, not that fast. While I was waiting for transport – again a wait, after all their promises, and after the speedy morning and afternoon appointments, I broke out in large, thick demonically itchy hives all over my chest. We told the head of radiology, showed them to her.
“Take her up yourselves,” she said quickly. It was a desperate decision. Hospitals are very strict about transport. The liability to the hospital of non-transport workers moving a totally supine patient must have been quite dizzying. Jesse and Anne and I played a little Descartes, and decided that she was afraid I would develop anaphylactic shock, -- my lungs would close down – right there in the corridor on her turf. This was a greater risk than liability. She wanted me out of there fast.
“She’s got hives the size of strawberries” Anne announced to the nursing station as we hurried by.
The nurses moved fast this time. I had been transported with my left and right arm antibiotic IVs still chugging away. They turned them off. They substituted Benadryl to the right arm. They interrogated me – was I short of breath? No. Was I wheezing? No. They stethoscoped my lungs. Dr. Jemail was informed.
I was delivered from the emergency of stomach paralysis into a nightmare of itching. I tore at my skin on my knees, legs and chest, scratching wildly and trying not to for the remaining 8 days I was in the hospital. Dr. Jemail cancelled some tests for subsequent days because the rash was so intense. Some remaining tests required drinking contrast fluid that might have induced an allergic reaction, and we couldn’t risk it. But the crisis was over, although why my stomach had closed down was still a mystery. They probably wouldn’t have to operate, I probably didn’t have GI cancer, and I wasn’t going to die. Phew!
Things were lightening up all around. I was out of danger. The staff had become progressively friendlier to me, the longer I stayed. They were getting to know me, and Jesse’s campaign with the flowers and the writings on the door, especially my autobiographical “How can a little girl like you teach a great big class of men ....” turned female nurses who were initially hostile to the “troublemaking old lady” into friends. People stood at the door reading it, page by page. Almost all of them had experienced some sort of discrimination or their daughters were experiencing it now. And just as long as you don’t say the word “feminism,” its analysis and critique is still dimly in the air. The women medical students responded even more enthusiastically. They were all over my room asking me questions about my experiences in graduate school and as a professor and even about some issues in neuroscience, my field.
Even Pauline, the Irish nurse came in, although she’d been transferred to another part of the floor, to tell me how wonderful the article had been, and to recount a couple of horror stories of the discriminatory hard times she’d gone through herself.
But then, Monday night, just before I was scheduled for my last test, a colonoscopy, with the discharge date set for Wednesday, a run-in with two residents reminded me of just how scary, potentially dangerous, nasty and irrational the hospital could become at any time.
The laxative I was supposed to take to completely clear my colon for the colonoscopy seemed to consist entirely of highly concentrated, foul-tasting salt solution. I got through one dose, and couldn’t take the second one. I became extremely nauseated. Carmen begged and cajoled me, and I began on the second one. And then I started to throw up. Not only that, but my stomach blew up again to twice its size, and became rigid, reminiscent of when I was first ambulanced to the hospital. It had clearly closed down again.
We tried to call Dr. Jemail to tell him my stomach closed down again, and I needed another NG tube. Also I needed to stop the laxative, at least for the time being, until my system was a little recovered from what had just been going on with it – which was still a mystery. My pain was growing by the minute.
But we had misplaced the phone number that Jemail had left us. He had explicitly told us to call whenever we needed to after we had recounted the difficulties I had had with Dr. Ortiz. “Anytime,” he had said.
Carmen walked down the corridor to the nurse’s station, and asked for his number. They were unwilling to give it out. Would they call? No. There was no way they were going to call to “bother” the doctor for a non-emergency.
“It may be an emergency”
“Doesn’t sound like one.”
“Could the resident on-duty come and see what she thinks?
“She’s very busy.”
Back to square one, I waited an hour and a half, beginning to moan again, and to wonder all over again about what dire things might be happening. Maybe I did have cancer after all.
“I’ll give you Milk-of-Magnesia” said that night’s on-duty resident, Dr. Dev, when she finally showed up.
“Don’t you think you should listen to my stomach first” I gasped. “Or at least feel it?”
“You’re getting a colonoscopy tomorrow. That will be soon enough to find out what’s wrong,” Dr. Dev spit out. She was having none of me; and any sister feminist feeling I had detected in the other female staff was missing from her. I wondered later whether the staff had told her I was a Harvard Ph.D. neuroscientist, and fearing a potential challenge to her authority she was determined to put me in my place. Or maybe it was still the “troublemaking old lady” that she was reacting to.
“I’m putting the colonoscopy off. I’m not going to take it tomorrow.”
“You can’t do that.”
Dr. Dev was East Indian, with extremely wide set eyes and a large mouth. She looked like she could have posed for the picture of the beauty for whom that rich Rajah built the Taj Mahal. Why were they all so good-looking at Lenox Hill? Was that one of the criteria for employment?
“Please feel my stomach. It’s distended and rigid. Please call Dr. Jemail. He especially left instructions with me to call him if anything like this happened.”
“Are you refusing the Milk of Magnesia? Stop scratching!”
“If it were appropriate in this circumstance, why wouldn’t Dr. Lee have given it to me last week when my stomach wasn’t passing anything?”
The question set her off. Her luminous Taj Mahal eyes narrowed.
“They told me you were a troublemaker,” she said. “Are you aware that the stomach and the bowel are one and the same organ?
“Then why was my stomach paralyzed but my gut was working fine?”
“Your stomach wasn’t paralyzed.” Another resident who hadn’t read my chart.
“What I give you will help clear the stomach.”
“Then they would have given it to me before if that were the case. Please help me. I need an NG tube. The laxatives I just took brought on the stomach problem again, so I definitely shouldn’t be taking any more of them now.”
She left the room without another word to me.
I started to scream in pain. Carmen hurried down the hall to tell the nurses.
Two residents came in the room this time. Now it was Dr. Dev with another woman introduced as the head resident.
“What is all the ruckus about?” asked the head resident, just in case I thought I might be getting a sympathetic advocate.
“My stomach has gone into paresis again” I said. “I need an NG tube.”
“Take the Milk of Magnesia” said the head resident.
“I don’t think __”
“ You won’t be able to take the colonoscopy tomorrow if you don’t take that now. And stop scratching!”
It was obvious that they weren’t worried about what was happening to me that moment, and were only concerned that if I kept “making trouble”, I wouldn’t be able to meet the schedule for the colonoscopy in the morning.
“I’m not taking it.”
“Then we can’t help you.”
“Call Dr. Jemail. He specifically instructed me to get in touch with him if anything went wrong.”
“If we have time.”
I moaned. I asked Carmen to call Jesse. It was 3:00 in the morning. He didn’t have Dr. Jemail’s number. Carmen looked all over the hospital room again. I asked her to go back down to the nurse’s station and get one of the staff nurse to come feel my stomach. She demurred, wisely. It wouldn’t be good to so antagonize everybody down there that even if I ruptured my stomach they wouldn’t come to help me.
Then at about 4:40 AM, just as suddenly as the attack came on, it went away. You could almost see my stomach going down, like time-lapse photography. The nausea and pain diminished. I started breathing regularly.
“Should I go tell them not to call the Doctor?” asked Carmen. “Stop scratching.”
“Let’s just not mess with them anymore. They had had no intentions of calling Dr. Jemail anyway. They just wanted me to take the damn laxative. All they could think about was, how dare I put off the colonoscopy?
Later that morning, Dr. Lee, the thin-as-a-paper-clip gastroenterologist visited. She agreed that I better put off the colonoscopy for a while. I could come back to the hospital and get the test as an outpatient, when my GI system was no longer so reactive. But I should stay in the hospital an extra day, just in case my stomach blew up again. No, she still didn’t know what had happened. Maybe the colonoscopy would have the answer.
Dr. Jemail visited still later, and he agreed also. He was more and more happy with the hypothesis I’d put forward that the whole episode was started by a virus picked up from take-out food that had secondarily affected my immune response and my diabetes, which closed down my stomach. As long as we were careful with the stresses I put on my stomach, the paresis probably wouldn’t recur. Nobody wanted to get alarmed about last night’s attack – maybe the harsh laxative had paradoxically set it off; it wouldn’t happen again; blah blah blah. That was fine with me. I was ready to go home.
“No Thai food,” Dr. Jemail said. I laughed.
“Naomi was right then!” said Jesse.
“Oh she was perfect” said Dr. Jemail, picking up on the generally silly interplay between me and Jesse. “Perfect! See. I’m getting it right between you two, aren’t I” We all laughed.
We were in a celebratory mood when the ambulance drivers came to get me. (Recall, I’m flat on my back, bedridden and wouldn’t have been able to make it out of Lenox Hill on my own two legs, or even on one of those pre-industrial looking wheelchairs.) As usual with the side of health care that involved muscle – the transport workers, security, paramedics – they were huge burly men. Also, they were sporting the fashionable facial hair of the day. They had on working-class goatees; a mustache continuing around the outside of their mouths and down to their chins, making them look like their mouths were permanently open wide in astonishment. On the cleft between lower lip and chin, they also had a little stubble of hair.
They asked me if I wanted to take off my nasal cannula delivering oxygen.
“No,” I said “I’m making a fashion statement.”
They liked that.
Then Jesse said “You’re not going home, you know, Naomi. You’re going to the mental hospital.”
They roared with laughter.
“Oh, goody! With all the trees and grass?” I went along.
In the old days, when we used to make comical faces at each other just for fun, Jesse used to do a southern sheriff act that was downright scary, as mean as it could be. He’s short, but stocky, and when he wants to simulate being a member of the macho club, he’s generally quite successful. (My lawyer father used to do an obnoxious version of such a simulation by referring to my mother as “the wife”, as in “the wife, she wants the flowers planted over there.” But Jesse doesn’t go over the top – I always know he’s still on my side.)
“You’re using the Miller board” he announced to the paramedics as they transferred me on the surfboard–looking device that takes patients from bed to stretcher.
Stunned, the EMS man, with the more pronounced goatee said, “You’re Mr. Miller, aren’t you?”
“No. I have nothing to do with the Miller Company” said Jesse, failing to add “I’m a professor of history.”
“Come on, Jesse,” said Bob, the black paramedic with the just-beginning goatee. “Don’t pretend.” (Later, playing Descartes, we decided that the head of the company was widely known as a scrappy Jew from Brooklyn who started out in linen supplies, but had made an empire out of hospital paraphernalia by sharping out the opposition.)
The air was cold and crisp outside, a sunny New York February day. The small trees stood naked in their circular iron fences, as if the fences were preventing them from running away, like the siderails in the hospital beds. The Park Avenue traffic wheezed and rumbled. I was out of the hospital.
The ride home was lovely.
When I was ambulanced into Lenox Hill, it was a frightening, jerky, pot holey, careening ride that terribly exacerbated my vertigo. This time we asked the driver to be especially gentle, and the ride home didn’t bump at all. It might have been a macho turn, showing “Mr. Miller (Jesse)” how well he could drive, but I didn’t mind one bit.
Jesse shot some pictures of me just as I landed on my home bed. I’m still wearing the oxygen delivery cannula in my nose so I look like a patient. But I’m also wearing a parka and blue jeans, that we had me get into for the ride home, and my expression is one of pure bliss. Hence, maybe I also look like an Everest climber resting in base camp before tackling the final reaches of the North Face. The oxygen is necessary, of course, because the atmosphere is so thin up where I am.
I got home at around 4:30, blissful. But by 9:00 that night, I was worried. I was still itching and scratching. I had a terrible irritation around my rectum from laxatives I had taken for the colonoscopy. The laxative effect wasn’t going away, and my explosive evacuation was threatening to turn the rectal area into bed sores unless I rested on a special pad that Jesse’s health-care sister brought over. The pad was difficult to place correctly beneath me. I was back on a whole-foods diet for just a day or two, and I didn’t want to eat much of anything. But mainly I was worried that my stomach would blow up again. Nobody knew why it stopped functioning, so nobody could predict when it might stop again. I kept feeling it to make sure it was still soft and at its regular size.
When I worry, it tends to escalate from the small to the large. So next, I turned my attention to my fragility. I had been in bed 22 years, and my body was deteriorating. Lenox Hill had done an MRI scan, and the results indicated both an atrophy in the right frontal lobe, and multiple small scars, “foci”, in the visual areas. The ME/CFIDS was taking its toll; and there were no known remedies for my condition.
And I had diabetes, so whereas other New Yorkers threw up for a couple of days from Norwalk Virus, (which I was sure I caught) my diabetes interacted with the virus and paralyzed my stomach, so I was throwing up for a week.
What else would diabetes do to me in the months and years to come?
And “post-exertional malaise” sometimes takes a week to appear, so I wasn’t at all sure that I’d survived the hospital stresses without significant ill effects. I might turn into a vegetable tomorrow.
And, and, and........ Even if there was no “post-exertional” reaction to the hospital ordeal, I wasn’t any better. I didn’t die, yes, but what did I come home to? Bedridden, 24/7 nursing, hardly able to speak or read or listen or write, few visitors, severe headaches and vertigo, endless empty painful hours. I would have to re-exert the strict mind discipline, that I had dropped somewhat in the hospital, that told me all this was where I was in my life at present –a phase, a thing that I could get through calmly and with cheer, or not get through at all. Remember the discipline, Naomi: This is the way you live now, and, anyway, you’re lucky that you aren’t any worse.
I was also troubled about the hospital. The hospital was part happy times, part ordeal. The happy times: I’d been bedridden and isolated so long that just the sheer volume of new faces in so many different roles was thrilling. But the bad taste in my mouth from the hospital’s abuses wouldn’t go away. The random sadism, power plays on sick patients who can’t fight back, refusal to pay attention to what the patient is telling you, breakdown of ordinary hospital functioning (such as the 10 hour warehousing in corridors of bedridden patients scheduled for tests) was appalling. At least I had a private duty nurse cleaning up my various messes. What of the patients who didn’t have a person in attendance when they had to void or evacuate? I remember seventeen years ago, when I was hospitalized at St. Vincent’s for an esophageal hemorrhage, and I couldn’t stop peeing all over the bed when the staff nurses didn’t show for a while after I called. It was an awful feeling. Going-to-hell-in-a-basket.
And this time, I’d been at Lenox Hill, supposedly one of the “better” hospitals in New York.
Why are hospitals such nightmares? Partially for economic reasons. Even at the “best hospitals,” managed care has done its depredations in the name of “efficiency” and profit. They fired so many nurses in the quest for dollars that now there’s a critical nursing shortage. The nurses that remain are so unconscionably overworked and stressed out, it’s hard for them to be pleasant. It’s also hard for them to stay on the job, contributing to a further reduction in staff.
But, economic reasons aside, hospitals are sinks of abuse, anyway. As I’ve just described for myself, the patient is on bottom. Friends and relatives are next. From the sub-administrators screaming at Jesse to put away his cell phone, the nurses shouting at Jesse to leave the room when they were doing a “procedure” (blood pressure; bed pan) to them shooing Anne and Jesse out of testing sites where it made absolutely no difference to the test whether or not they were present, and I was captive there for hours with nothing to distract me; to the meta-administrators tearing my scientific and biographical writings off the hospital door so nobody would be able to get to know the person beyond the patient -- the hospital resembles boot camp with a malevolent sergeant bellowing orders designed to humiliate you. They’re going to put you in your place or this ain’t Uncle Sam’s hospital.
This grotesque abuse is part of the hospital culture; we must view hospitals in the light of a deeply hierarchical and sadistic culture originally modeled on military organization (as hospitals were). Then the warehousing of patients, groaning and sometimes even screaming with no one to attend to them; their interminable waiting in cold and drafty halls is part of what the hospitals want, because a scared and abused population is easier to control. They identify the “troublemakers” in that population, and are especially abusive to them. Women and old people are targeted for especially contemptuous treatment, because that’s what a militaristic, macho culture brings out in folks. Sleeplessness is also promoted, not only for the patients but for the jittery interns and out-of-their-minds-exhausted residents, even though medicine certainly knows better than to deprive their caregivers of sleep. Like the Ph.D. oral exams that some of my colleagues made as ugly as possible, just to savor that last twist and screw of power before they had to relinquish it and greet the new Ph.D.’s as colleagues, these unnecessary rules and rituals stay in place to reinforce the power differentials among the various actors, and keep everybody submissively doing their thing.
One might argue that none of this “psychological” abuse is particularly relevant to the real business of the hospital; that ministering to the organic needs of the patients. I doubt this argument will hold up. I think pretty soon they’ll do a study comparing two types of hospital culture – a sadistic one, as is ordinary and the new type of “compassionate” “palliative” care and they’ll find that, relative to the new compassionate one, patients die like flies in the ordinary type of hospital culture. Psychology matters.
But suppose I’m wrong and psychology doesn’t matter. The problem is that the “psychology” spreads over into the physiology. The personnel in the hospital do the wrong thing because they’re just too status-ridden, and pissed-off, and sleepless and sadistic to do otherwise. Corners are cut; stereotypes like “troublemaking old lady” stand in for accurate information.
Some of the doctors and residents were caring or concerned, even when they weren’t particular friendly and/or were careful to emphasize their high position in the hierarchy compared to my low one (e.g. Dr.-Geller-to-you).
But some of the doctors made the wrong calls. They didn’t read the history; they didn’t consult with the attending doctor or the specialist; they just acted out of sloth, spite, prejudice, ageism or sexism. Dr. Ortiz was wrong not to consult with Dr. Jemail and not to listen to my stomach; Dr. Dev was wrong to try to force Milk of Magnesia down my GI tract when it was obvious that laxatives had brought on another stomach paralysis.
I would argue that it was the standing culture of the hospital – hierarchical, nasty, sadistic and spiteful, that led to these potentially dangerous calls by the residents. The psychology and the physiology merge: The hierarchical and sadistic hospital culture is ubiquitous in America. And it makes them dangerous places.
It’s not just Lenox Hill. The day I got home, I heard on the CBS News that a woman with breast cancer was suing the University of Michigan Hospital for removing the wrong breast. The e-mails sent to me when I was in the hospital were full of stories like that. The husband of a friend was not fully under anesthesia when he heard the doctors arguing about whether to leave his leg intact, in which case he’d die, or whether to amputate the leg. Arguing about it!
“Remove the leg” said the husband.
“Who said that?” one of the doctors demanded angrily.
The daughter of my angel nurse, Anne, recently died from a heart attack in the emergency room. In the emergency room! Isn’t the emergency room where you go so you don’t die when you have a heart attack?
When I finally got to sleep that night, I dreamed that Dr. Violin was making love to me. There he was, his face blurred with sex, smiling up at me with sticky cheeks from between my legs. But he wasn’t alone. The two other floor physicians – the parsnip -- and the junkie -- are there with him and they’re helping him give me pleasure. They have vibrators for my clitoris and labia, their own hard silky penises to rub gently on my body, their hot hands stroking my belly.
While they’re making love to me, they’re also monitoring my vital signs and changing I.V.’s and plumping my pillow, with the utmost tenderness and care. After my fifth orgasm, Dr. Parsnip tells me gently and regretfully that we have to stop now, because they don’t want me to get too tired.
“One more?” says Dr. Violin.
“Okay one more” says Dr. Parsnip. We all start laughing.
I wake up in the middle of the night, happy and nodding.
“Get it?” I eventually say out loud to the billowing curtains and the dark furniture, “Get it, Naomi?”
I had been dreaming of sex, yes, but also I was dreaming of a ceremony of healing. I had been dreaming of the way a hospital should be. The sex was a metaphor for the hospital as a place of giving one one’s life back.
That is what I suddenly understand.
Like the Kung San! Bushmen of the South African Kalihari desert, where the whole band is collected together, led by the healer, to sing and dance all night and fall into trances to cure the sick tribe member, the hospital could be a utopia of altruism and fellow feeling. That is, after all, its metafunction, from the ambulance drivers, to the transport workers, to the orderlies, to the nurses, to the technicians, to the physicians. Nominally, they’re all there to help you recover. They attend to you, their concern is you, they try to help you. They give you pain killers and adjust your pillows so you’ll be more comfortable. They even bring in the vibrators so you’ll have pleasure despite the pain.
They do this, or they should do this. The hospital should be a utopia of concern and compassion. A place of love.
Sometimes, when I was there, I even felt that – hence the dream. The good doctors who weren’t so worried that I call them by their proper titles. The nurses who read my article and realized I was a person behind the patient. The transport worker who liked my Mooz socks. The orderlies who knew how to insert the IV’s without pain or blood. And even all the flirtation going on within the honeycombs.
But, Americans don’t believe in altruism, even though its presence is everywhere, in nature, in human society. From elephants and mongeese to associations of patent lawyers, creatures take care of each other. Only a sick culture, a militaristic, corporate-driven, competitive, violent, abandoning, sink-or-swim, paddle-your-own-canoe culture would manage to transform the hospital, the house of healing, into such a hierarchical, stressed-out, snotty, malevolent, irresponsible, ageist, sexist, dangerous place.
We can do better than this.