The Bed with a Mind of Its Own
Friday, March 07, 2003
Here is another essay from those tense times in late 2001. --KC
I was sick, becoming very sick, in October.
"A cold," I’d said to my husband, David, "With added features." It felt like a bad cold with allergy symptoms sitting on top.
On October 17th, my son Peter’s fourth birthday, I went to the doctor: "A virus," he said. "Come back in a week if you don’t feel better."
My one A+ at Columbia University was in statistics. This month, when I was getting sick, the "A" word was everywhere: anthrax. The odds, I calculated, were millions to one. The only risk factors I could think of were ridiculous: stuff like husband is editor for major publishing company that has a mailroom; or stayed at house of White House electrician in September. But the limits of my suggestibility were tested: skin, ear, and eye problems, runny nose, chest pain, sore throat. So many symptoms.
Wednesday, October 24th, a week later, I didn’t feel better: in the morning a searingly sore throat. I called David and called the doctor. By lunch time, lightheadedness, tingling lips, prickling finger tips, and chest pain like a clenched fist just beneath my right shoulder blade. But no wheezing. (I’d had pneumonia before, and even a lung collapse, once.) I knew that they would hear no wheezing. Part of my lung seemed locked. I had been driving around trying to buy the right toner cartridge for our printer, to Hartsdale and then to White Plains, feeling more and more lightheaded as I drove.
Arriving home, no message on the machine: the doctor’s office had not yet called me back. I called them: The nurse and I discussed whether I should go to the emergency room. I said I wanted to see the doctor. (I didn’t tell her that I wanted to avoid to the ER, for fear that they’d think I was a hypochondriac faking anthrax in order to get Cipro.) I changed the toner cartridge, printed out the issue of our small press magazine and called the doctor’s office again. I finished my work at noon, then crawled into bed feeling too sick to go to the doctor.
I called my sister to find out if her husband, Tom–an electrician who had been helping move the White House mail-processing center off site–was being put on Cipro yet. They guys from the other shift had been nasal-swabbed the night before. When I talked to her the previous night we’d had five minutes of hysterical giggles on the subject of household decontamination tips–greeting her husband at the door with a can of Lysol and such.
In this conversation, I suggested that she insist that he wear a condom. To work. A really big one that could cover his whole body. She said, "If you feel too sick to go to the doctor, call an ambulance."
The doctor’s office called, asking me to come in. I went, driving carefully, afraid I would be pulled over. After a bit of a wait–during which the waiting room carpet sparkled in ways it shouldn’t have and I remained determinedly vertical, though I really wanted to lie on that carpet–the doctor offered hospital admission. I made a few calls on my cell phone to arrange for Peter to be picked up at preschool. I felt too sick to be bothered with going into the hospital, so I said yes, admit me. The doctor offered an ambulance, but I drove myself.
Five hours in the Admit unit did not bother me. Sitting and standing were no longer demanded. People were close by. I thought, Whatever I have is no longer my problem.
As the nurse helped me into my gown, she said "What can you tell me about this rash on your chest?"
"What rash? I don’t know about any rash," I said. But on my chest there was a rash like a faint sunburn.
They put in my IV and they wheeled me down the hall for a chest X-ray. I needed help to stand up for the X-ray, and remained standing by leaning against the equipment. While I waited to be returned to the Admit Unit, a woman wearing a face mask was brought in on a gurney by hospital masked hospital staff. I wasn’t sure whether to look at her and smile or to look away. I did an awkward combination of the two. Obviously, she had something contagious, but what?
Once back in the Admit Unit, eavesdropping was my entertainment: The infectious disease doctor across the hall asked the young female patient, "Have you been out of the country recently?" and made a phone call to determine if current protocol demanded a nasal swab for anthrax. (It didn’t.) They sampled her spinal fluid; for what purpose, I knew not. But I was curious.
Although I hadn’t been given any medication, I felt like I was on heavy drugs. In the room next door, an old man sent in from a nursing home was told they will give him Cipro in trade for a urine specimen. He was so thrilled to be taking the drug du jour, though only for an apparent urinary tract infection.
My nurse called upstairs every half hour to see if my bed was ready yet. The nurses chatted with their children on the phone: one about school books crucial to the homework assignment left at school; another explained she wouldn’t be home until bedtime. I missed my son.
Gradually, a headache came on, a headache like slamming my head into a wall.
"Oxygen," said the chipper nurse. "Maybe your oxygen would help." Once she turned it on, the headache, or at least its intensity, was gone in seconds. When my head cleared, I remembered that the Admit instructions had authorized oxygen. But I had been too sick and confused to ask.
A room, I needed a room. From 3 to 8 PM my room upstairs remained uncleaned. When I finally arrived there via gurney, at about 8:30, the room smelled funny, vaguely like a diaper pail. I saw a dampness through the sheet and patted the bed to be sure that it was disinfectant and not what it smelled like. I had never spent a night away from my little boy before.
I got into the bed. It made a quiet mechanical noise, though I had pushed no buttons. Click. Whir. Click. I had a bed at last. I complained about nothing.
Nothing to read. A pen, but no paper. Only TV. And though sick, I was so bored! I turned on the TV: all anthrax all the time. What I have is no longer my problem. The bed clicked and then shifted subtly of its own accord, and clicked again.
I had thought that I still knew how to watch TV, but I had partly lost the skill of extracting actual information from a television. Initially, for example, I could not simultaneously read the scrolling headlines and follow what the news anchors were saying. After a while though, I got the hang of it.
History Channel: Visual: Tracking shot of lower Manhattan, focus on the Twin Towers. My first thought: The towers were so big! My God, they were big! Then I hear the voiceover. Voice: "... and as water levels continue to rise, the next ice age will pose serious problems for the future." This shot is a cheat of course, because they are using the sheer size of the WTC to imply that water will engulf the smaller skyscrapers. Nonetheless, it was touchingly naive for them to suggest that the biggest threat to the WTC was an incoming ice age.
After I turned off the TV and tried to sleep, I worried that the self-propelled bed would keep me awake. Instead it was a comfort, a mechanical echo of the small movements of my husband and son asleep at home.
Thursday, despite antibiotics and oxygen, I did not feel better. My ears hurt. My chest X-ray, taken on admission, was OK. The doctor ordered a CATSCAN.
When I felt my suggestibility tested yet again, I tried a thought experiment: What would it mean about the anthrax outbreak if I, Kathryn Cramer, who does not work for the government or the news media, were to be a documented case of inhalation anthrax? I would be a mysterious outlier. It would change everything. It would be big news. That wasn’t going to happen. It was all going to unfold predictably with neat little chains of evidence. Therefore my TV-induced fears were absurd.
David and Peter came to visit, bringing pajama bottoms and a couple of small press fiction magazines. Peter climbed on my bed and watched kids shows on my TV. While he was watching, I realized why I had not been watching them: I’d seen all these shows before: Blues Clues, Dragon Tales, Pokemon. I’d seen them with Peter. So not only could they provide me with no entertainment; they made me miss him. The bed moved and Peter and I talked about how it had a mind of its own.
Peter was very worried by my oxygen tube and my IV. I told him that both were to help mommy feel better. I turned the oxygen tube so it blew on him for a moment to demonstrate what it did, and I let him touch the IV. When he was just short of two, Peter had been hospitalized for an afternoon to be rehydrated when he had pneumonia. He had had an IV, which had to be taped on because he was a little kid. The hand swelled and the IV became extremely painful. Because of his concern, I asked if he remembered having an IV before. He said, "Yes. It really hurt, mommy." I assured him that mommy’s didn’t hurt and was helping make her feel better.
After they left, I tried keeping the TV off. But the old man across the hall was very hard of hearing and so spoke very loudly; he had many visitors whom he entertained by telling them his opinions of the developing anthrax story he was watching on TV; they had to talk loudly for him to hear them. I tried reading the magazines, but the stories in them weren’t making very much sense, even though I tried reading them two or three times. Actual TV was preferable to the verbal instant replay of the anthrax stories, so I turned the TV back on, trying to find more innocuous channels.
I wanted music. From my lung collapse and from my hospitalization for Peter’s birth, I remember that the hospital cable used to have MTV, so you could just have music on in your room. MTV was gone. There were a couple of channels that had music shows, but they would play only about fifteen seconds of a song and then blather about the band to a constantly moving and cutting camera. Even I, in my current state, had more attention span than they were demanding of their viewers!
Friday, the doctor said the CATSCAN showed inflamed nodules in my lungs. At last a name: inflammatory lung disease. The bed shifted on its own: click, whir, click. My immune system turning against me? What I have becomes my problem again.
I finally used the A word: I said to the doctor, "You know the question everyone has been asking? They all want to know if I have inhalation anthrax." The doctor told me that if that’s what I had, I was still covered: the antibiotic Levaquin is a relative of Cipro. He also said that prior to the current outbreak, the last case of inhalation anthrax had been seven years before he went to medical school. "Gotta feel bad for the doctors who missed the diagnosis on those two postal workers who died," he said.
On all the news channels, the postal situation was heating up, with new detections of anthrax spores in sorting machines every few hours. My favorite moment of that coverage was when William Smith of the New York Postal Workers Union said on CNN, "The postal workers value their lives just as much as members of congress value theirs." I saw him say it only once, though some of his lesser sound bites the various stations repeated for days. He was making an excellent point, and this is the sound bite that should have received the endless repetitions.
Channel 13 had some good stuff during the day, after the kids’ shows. And on weekends CSPAN 2 becomes BookTV, which was great: readings, scholarly lectures, book events that I would like to have gone to, some in book stores I think I’d been in.
The hospital’s interfaith chaplain paid me a visit. I told him the story of my admission, my symptoms, and about how careful I had been to avoid having to go through the ER to get treatment. He said he’d heard that in some Manhattan ERs, you had to say that you did not think you had anthrax and did not want Cipro in order to be allowed to see a doctor. We shook our heads and chuckled. He said a prayer of healing over me and continued on his route.
Saturday, I felt worse, not better. The prednizone helped, but not enough. I was supposed to be released, but I didn’t feel good. David, Peter, and I were supposed to depart for Toronto on Sunday, but we weren’t going to be able to because I was in the hospital. The doctor came in with lab results: two secondary infections detected. More steroids. An additional antibiotic: doxycycline to cover the possibility that this was caused by Lyme Disease, to which I have a vast possible exposure in our wooded, suburban yard which is on a main deer trail: I get five tick bites a week during some parts of the summer.
Too many drugs, said David, but I suspected not enough. David said Karen said Tom is on Cipro. My eyes stung and the eyeballs looked sunburned. I could not read. Not only did my eyes hurt, but turning pages was too much effort.
One of the first things I found to watch that I really enjoyed was Joan Didion reading from her book Political Fictions, followed by a discussion of her reading, on Channel 13. I loved her final sentence from the discussion period, which I wrote down: "Some things are unknowable, but most things are more knowable than we think." I immediately called David and asked him to stop by Borders on his way up to see me and bring me a copy of her book. He didn’t. Instead he brought me two books he’d bought at a yard sale on the way.
Later, author Steven E. Ambrose, appearing with Peter Mayle and Dan Rather on Book TV on CSPAN 2, read from his book, The Wild Blue: The Men and Boys Who Flew the B-24s over Germany, on the bomber that George McGovern flew in WW2. He read an anecdote about McGovern's plane accidentally destroying a civilian farmhouse while trying to get a stuck bomb out of the plane's bay doors. McGovern lands the plane, feeling just terrible and is informed of the birth of his first child. During the program, the phone kept ringing, my parents called, David called, maybe my sister too. But I couldn’t seem to hold up my end of the conversation, and finally I had good TV, I wanted to watch TV now. I didn’t want to talk because it was too hard to figure out what to say. In my dresser at home, I have my mother’s old McGovern in ’72 campaign T-shirt. There was some vast object of tragic contemplation to be had from the WW2 anecdote about McGovern, my mother’s Viet Nam era T-shirt, and the news reports of casualties here and Afghanistan.
I was having respiratory therapy every six hours, including during the night. At about 2:45 am, the therapist would come in and put me on a nebulizer for twenty minutes, and then, at my insistence, I would drink a nice cup of tea, watching whatever good stuff I could find. I saw part of a documentary on Isaac Stern. The most striking (and relevant) image was Stern playing a concert in Israel during the Gulf War. The air raid sirens go off. His audience puts on their gas masks but does not leave. Stern continues to play. I thought about how I felt taking Peter to the National Zoo in Washington, DC, in late September, about how embarrassed I’d felt when a pair of Arab men noticed my careful scrutiny. But you have to go on, just go on.
Sunday, once I felt a little better, I started trying to get off the oxygen. I asked to take a shower, but was told I needed my doctor’s permission for that. I was still unsteady on my feet, so the nurse and I compromised on my washing my hair in the sink, which was fine. I had not even combed my hair since admission, somehow thinking I would be released soon and would do it at home. With washed and combed hair, I began to try to patch my poor damaged skin back together with A & D ointment; David said the ointment gave me a "greased" look, but it sure felt good. He brought me a rhinestone American Flag pin, which I pinned to my hospital gown and wore feeling as though it were an amulet.
Kicking oxygen didn’t work, though I figured out what was wrong with my eyes: They were oxidizing. Going off the oxygen made me very confused: I began to wonder if anthrax is communicable through the television.
I turned the oxygen back up to half strength. The woman in the next room screamed for more pain medication and accused someone of torturing her. Her husband or son, unable to stand this, screamed at a nurse on her behalf. There were raised voices. As near as I could tell, the nurse was obeying instructions in order to avoid giving the woman an accidental lethal OD, and her family was trying to browbeat him into doing it over his better judgement. I wanted to empathize, but that woman had a high-pitched, sing-song, wheedling voice that made it impossible for me to identify with her. I was too dopey to care about them, but they were keeping me awake. The bed shifted beneath me and I turned on CNN quietly in the background so I could sleep.
All Monday, I tried to get off the oxygen, but failed miserably. I wanted to read, but couldn’t comprehend single written sentences. Writing came easier than reading. In the evening, the doctor visited. I asked him to explain how I got sick. He said he thought it started out viral, then went bacterial.
A juxtaposition: 1) Dr. Nancy Snyderman, ABC Medical Correspondent, documenting the nature of the injuries of Afghan refugees streaming into hospitals in Pakistan. (No one at the hospital asks the political affiliation of the 3 year-old with shrapnel in his brain.) Many are injured by houses that have fallen in on them. 2) CNN correspondent in Kandahar talking about the heavy, mud construction of the buildings and their vulnerability to being shaken by the bombs. Discusses the people's concern's that their houses will fall down. Conclusion: These Afghan cities and towns have no meaningful building codes. Even if civilian homes are not bombed directly, it looks to me like many people will be (and perhaps are being) killed because the houses are unable to stand up to the impact of bombs dropped 1/4 and 1/2 mile away. That, it seemed to me, is what it really means when one hears reports of these cities being "shaken" by the bombing.
Oxygen back up to 2. My dose of prednizone increased again. I colored obsessively with crayons for five hours: first a stylized picture of brightly colored-candy corn for Peter in compensation for all the Halloween preparations that I was not doing this year; then a stylized American flag with five stars rather than the usual number. I’m sure the last time I drew a flag can’t be more recent than high school. My mood when drawing the flag was like that of someone making a cross to hang on the door to keep out vampires. My coloring was much admired by the hospital support staff who seemed previously not to have noticed me much. John Ashcroft warned of unspecified new terrorist threats. The bed fidgeted. As the chemicals began to fuck with my brain chemistry, I ran water over my hands in the sink for five or ten minutes for the sheer joy of the sensation.
Late Monday night, Rudy Guiliani had a press conference to tell me that the odds are not what I thought: People who don’t work for the post office or the media are coming down with anthrax, one a New York City hospital worker. I thought, I must get out of here. I still have the chance to get out of the country. It’s not gone yet. David and Peter and I are still scheduled to go to Montreal. But I can’t leave unless I can wean myself. The bed shifted and squirmed, echoing movements of CDC anthrax protocols squirming into new shapes somewhere in the distance. I tried not to think at all, tried to let the bed do all my thinking for me.
This was the Ashcroft cure: That man and his warnings had terrified me, flooded me with adrenaline. And Guiliani had undermined my article of faith that made the infostream bearable. That, and the additional 10 mg of prednizone I’d had with dinner got me pumped up enough to try again: I cut the oxygen down and later cut it more. I was much more brutal with myself than I had been willing to be previously. This was my chance to get out.
I turned off the oxygen and moved the legs of the bed up and the head of the bed down low to help my poor addled brain cope. Intellectually, I understood what CNN was saying. Emotionally, I believed we’re getting anthrax from TV.
By Tuesday morning, I was off the oxygen tube. The night nurse, just going off shift, asked what my symptoms were on admission. I told him. He looked alarmed and asked what I do for a living. "Editor," I told him, and he looked scared. I explained that I edit anthologies and a small press review magazine (but he wasn’t listening anymore). I asked him to refill my water pitcher, but he left quickly, claiming his shift was over and that the nurse coming on duty would do it. She didn’t, not for several hours. I coped and even read The New York Times, psyching myself up for survival without my oxygen tube.
At quarter after eight, when the new nurse finally came and brought me water and my morning medication, I saw International Space Station U.S. commander Frank Culbertson on ABC. The news anchorman read from a letter Culbertson had written about his reaction to 9/11 and the loss of a friend, the pilot of flight 77 that hit the Pentagon. The quote I wrote down, because it was such a stunning image was, "Tears don't flow the same in space." The anchorman asked how they did flow in space. Culbertson replied, that they go any way they want to.
Saw Joan Didion again; saw Stephen Ambrose again: the life of the mind in reruns. My eyes felt better. But my chest hurt. They did a few more tests–blood tests plus one in the radiology department–then released me at 4PM. I turned off the TV and David took me home.
Tonight I will sleep in my own bed, a bed with no mind at all and no TV. Tomorrow, we head for the border.
October 30th, 2001, Pleasantville, New York