In 2003 I spent two weeks in Bellevue Hospital in New York City with a hard-to-diagnose case of an autoimmune disorder. This is what I learned.
It started with a fever, sore throat, and aching joints. I didn’t have health care insurance so I went to the doctor on campus. Winter break had just begun, the campus was deserted and I got in to see him right away.
It’s a virus. Nothing to worry about. Go home, take some ibuprofen, rest. You’ll be fine.
You’ve heard this one before. Everyone has.
I was not fine. I did not get better. I got worse. Much worse. I found myself spitting out extra saliva because it felt like razor blades were in my throat when I swallowed. My knees ached so badly I couldn’t sit down. Or get up. Not only did I manage to pee standing up, I — well. Yeah. Something weird was happening to my left hand. I couldn’t open it. It was curling up like a claw.
There was the night I thought a hot bath would do the trick. Except once in the tub I found I couldn’t get out. My knees shrieked no matter which way I moved them. This was before I had a cell phone. It was just me and my black cat, Alice, in the apartment. Eventually I managed to pull myself over the side of the tub and work my way over to the toilet where I could finally get upright. Alice was confused. I was terrified.
Back to the doctor. This time he sent me to his friend, the rheumatologist, who took one look at me and started running tests. How she managed to run all those tests for someone without health care insurance remains one of life’s little miracles. She prescribed a low dose of Prednisone, a corticosteroid used to suppress the immune system and decrease inflammation, and sent me home. The tests all came back negative.
I had a day where it felt like I was turning a corner. William and John came up from Chelsea and buzzed my hair off because I couldn’t wash it anymore. I felt pretty good that day.
In agony that night I called the rheumatologist’s call service. She rang back and told me to get a car service to Bellevue. If I called an ambulance, she said, they would just take me to the closest hospital and then I’d be run around all night until someone figured out to send me to Bellevue.
If you’re really sick in New York City and you don’t have any kind of coverage, you go to Bellevue.
A dear friend, Michele, left work to come uptown, call a car, and help me into it. I couldn’t bend my knees to sit down so she and the driver had to pull me across the back seat.
Arriving at Bellevue, I felt extraordinary relief. Finally someone would help. At this point I’d been in unrelenting pain for about three weeks.
Whatever madness you think of when you think of the ER at Bellevue, amp that up by about 50%. Lots of drunks. Lots of drama. It was clear I was not leaving that hospital that night. Seven hours later there was a shift change and the new physician in charge said three magic words: You need morphine.
For about three hours I floated in a blissful bubble. That got me up to the 16th floor where I was parked in the hallway on my stretcher while the nurse aides got a bed ready for me. As the miraculous peace began to ebb, I found myself in a gray, noisy, confusing world. There were armed police sitting outside several rooms where the Riker’s-bound were hand-cuffed to their hospital beds.
I can say that the medical care I received at Bellevue was second to none. The rest of it was your basic shit show. The nurse aides were determined to catheterize me and I fought that like a maniac, certain that it would cause infection and hurt. The night charge nurse, a gentle man, never argued with me and would come to my room multiple times a night to help me to the bathroom. Because I was dehydrated when I got to the hospital, I was aggressively re-hydrated and after two days I gave in and allowed them to insert a catheter.
The Korean nurse aide assured me that she had done this “thousands of times” and that I wouldn’t feel a thing. I didn’t. But feeling like I had to pee and then strangely having that sensation go away was extremely weird.
I was in a four-person room and had the good luck to be by the window. To this day I feel a special fondness for the Chrysler building which stayed lit all through the night while the Empire State Building went dark at midnight. It felt like abandonment.
Prednisone is a miracle drug. On my third day, as I crept along the hallway holding onto the railing, one of the nurses who’d seen me the night I was admitted nearly cried to see me walking on my own. I was getting high doses of the stuff and, effective as it is, it does some very creepy things to one’s body. It induces the mother of all blood sugar crashes to the point that I had to eat every two hours or go into a frantic tailspin. It also redistributed the fat in my body. That means I wound up with the classic Prednisone moon face (It took nearly nine months to wean me off that drug).
I faced barrages of tests. The doctors were pretty sure we were dealing with an auto-immune situation but needed to narrow it down. One day, just before lunch and as I was spiking a fever, shaking violently, I was wheeled down to some hallway for more tests and left. It was lunchtime. They’d get back to me after they’d eaten.
Laying there, shaking on the stretcher on the hallway, I was completely invisible. No one even looked at me. I was just another diagnosis on a stretcher. I’ve never felt more miserable. Well, no. When the technicians came back from lunch and began to administer the test which entailed inserting long, thin needles into the backs of my legs I can say the misery factor tripled. After one needle I called it all off.
Later someone came to my room to gouge out a piece of skin from my upper arm for a biopsy. They later lost that tissue sample and came back for another. I told them where to go. In unladylike terms.
The tests all came back inconclusive. Then I developed the “butterfly rash”. Such a pretty name for such a horrible symptom. The butterfly rash forms around the eyes in a kind of figure eight of red. What with having buzzed my hair off just before coming to the hospital and the emergence of the rash, I looked a lot like Uncle Fester from that old 60’s sitcom, “The Addams Family”. But the rash answered the question that none of the tests could. I had Still’s Disease.
Still’s Disease is a rare inflammatory type of arthritis that typically afflicts teenage and pre-teen girls. There is an adult onset version of it but it usually hits people in their mid-thirties. I was 44 at the time. Classic late-bloomer.
Having gotten the symptoms under control after a week, the experts at Bellevue sent me home. With pneumonia. I toughed it out for two days before it was apparent that I would have to go back to the hospital. No window view this time.
There was a particularly bad night when the machines attached to the woman in the next bed were beeping away and she was wheezing away until she wasn’t. I heard the nurses come in and talk about how there wasn’t any next of kin to contact. Then they shut the machines off, moved that woman’s body to a stretcher, and made the bed up clean for the next sick person who was probably waiting down in the ER.
No comforting Chrysler building now. No distractions. Just darkness and a sudden harsh understanding of reality.
I had recently moved into my own rent-stabilized apartment in Harlem. Only three months earlier I was hired to work as an editorial assistant on a fairly prestigious scientific journal. I was within spitting distance of earning my BA in Literature Writing at Columbia University. Laying there in the dark I was seized by the certainty that I was about to lose all that. And in that unfolding certainty was rage.
How could I have come this far, worked this hard, done everything right and played by the rules only to now lose it all?
If I believed in some kind of supernatural God, I would have been tearing that deity a new one. In fury and terror I played out the coming catastrophe.
It was quiet in the room that night with the lady next to me gone and her machines shut off. Quiet enough for a completely surprising thought to arise.
I’d be ok.
I could lose the job, the apartment, my mobility, and my place at Columbia University. I could wind up back in Cleveland in a wheelchair or needing to get on public assistance. Those things could happen. There was a good chance that at least some of them would. And I would be ok.
My friend, Inez, in California has a saying: In every pile of shit there’s a pony.
I came out of my two weeks in Bellevue with some very nice ponies.
Nearly the worst thing I could imagine was actually happening. And I was ok. I did have to take administrative leave for a semester from school. Several friends, including my best friend, Robert, paid my rent. My boss at the journal kept my job open and I went back to work after about a month away.
And every single day of the two weeks I was in Bellevue there were friends bringing me dry clothes (I kept soaking everything I was wearing after my daily fever broke), newspapers to read, decent food to eat. Rose, who used to be a nun, came and rubbed my poor itching swollen feet which I couldn’t reach myself. Chris, who was terrified to be in any building more than five stories tall, brought me delicious won ton soup, creeping along next to the wall and avoiding looking over at the windows.
And if none of that had happened and I was now living in Cleveland, on welfare and dealing with massive student loan debt without having gotten the degree, I would still be ok.
It takes a lot more to scare me after all that. I’m also the friend who’s going to be coming to the hospital with books, blankets, and dumb jokes.
Several years later at customs in Prague airport the officer kept looking from my passport photo, taken shortly after I got out of Bellevue and sporting the full Prednisone moon face, to me. Finally she blurted, “How’d you do it?”
I can’t remember what I told her but the truth is that I “did it” with friends. And now that I’m not eight, I know that friends are better than ponies.
But I still want a pony.