“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.