I had never stayed in a hospital before then. This particular facility was brand new—opened only the year before I checked in—and up to date, both medically and socially. All the rooms, for example, were singles; no roommates, in other words. That was a Godsend, but it set me up for grief when I would later transfer to a rehab facility, and learned the reality of modern medicine.
Hospitals are strange places. Care goes on twenty-four hours a day, seven days a week. It’s sort of like a Las Vegas casino; there’s no sense of time. If you need your blood drawn every four hours, a nurse was there at 3am to not only wake you, but to poke you with a sharp and painful instrument. This was far more important than minor, secondary issues—like sleep. Suddenly I was living a whole new existence, on a radically different—and frequently painful—body clock schedule. And I had no control over any of this.
I also took plenty of MRI’s. This stands for magnetic resonance imaging, and it is sort of like a super-duper x-ray. They take you to a separate room, with a big, impressive machine. Then comes the nasty part; to keep your head rigid, they strap you into a face mask that looks like what Hannibal Lector wore when they wheeled him to the airport. After that you lie down, and the table is drawn into a kind of cavern, with a cylinder all around you; all I could think of was the old Time Tunnel show on television in the sixties. But you are not allowed to move a muscle, or you throw the whole thing off and they must start over. You have to lie there motionless for as long as it takes. Hence the Lector mask, to keep your head rigid.
On top of that, once the machine starts, it starts to bang and clank; it sounds like a demented student pounding metal in shop class–with a sledge hammer. No rest for the wicked, in other words, although I tried to nod off. I took quite a few of these; the longest actually lasted over two hours.
The only reason I could manage that long was that by then they had hooked me into a Foley catheter. This means someone has to thread a tube into your penis, which is hooked to a bladder bag. Because I’m a hemi and not a para (who has no feeling below the waist), I felt every millimeter go in. And yes, it is as painful as it sounds. The nurse was caring and wonderful, but it still hurt like hell.
Once that ordeal was over, however, having a catheter was actually pretty nifty. Keep in mind that for me to get to a commode was a major project. I couldn’t even sit up in the bed by myself at first. Every time I wanted to move they had to call for a lift team—which sounds like the guys who used to move pianos back in the Bronx—to raise me up, get me to a wheelchair, then maneuver me to the commode while I took a whiz or a dump. Sometimes they came in a few minutes, sometimes the hospital was packed with emergencies, and it took close to an hour before they showed up.
But with the Foley it didn’t matter. Whenever I had to go pee-pee, I just went, any hour of the day or night. Every once in a while a nurse or a CNA(certified nurse assistant—I had to learn a whole new vocabulary) would come in, measure how much urine I had produced, dump it out and reattach the bag. It was difficult moving anywhere with this thing hooked to me (I was very careful that there was no pressure on the tube), but overall it was a device that made my life a lot simpler. They kept the same one in almost the whole time I was in the hospital.
When it came out a few days before I left, besides the pain as they threaded it out of my penis, my life became more difficult, as I now needed help a lot more often. So, even though I had learned to take a leak in the toilet bowl before I was two years old, I suddenly had to change how I performed that most basic function. Not something I had ever felt was worth contemplating before; I mean, I knew how to pee. Nor had I wished to change. My life was upside down.
Meanwhile, I was getting treated for the TM. While there is no cure, the doctors worked to prevent its further development, to make sure the lesions don’t grow any more so that the paralysis doesn’t spread.
The first step in this is steroids—more needles to hook me up to the intravenous pump, but so what? Later, they hooked me up to a plasmapheresis machine, which costs about as much to operate as the national debt of Sierra Leone. What this does is literally filter and then replace all of your blood plasma, thus removing the antibodies. You are much more vulnerable to infection for quite a while, but it stops the myelitis from spreading, totally, if it is an auto-immune disease, which mine wasn’t, but they didn’t know that then, and wanted to be sure. The machine is about the size of a large food cart, and makes a noise like a gigantic Waring blender. The process takes several hours, and I had five treatments.
Everything in my life had changed being in the hospital. At home I was able to choose what I wanted to watch or read, and when. I liked my job, but now someone else would have to take over my classes when the fall semester started in a few days. I no longer came home to Rita, or went to sleep with her. I had not chosen any of these new arrangements.
At this point I was kind of in shock, both from my ailment and from my environment. Imagine being picked up and transferred to a strange world. You can’t walk, or move much at all. Everything you knew how to do—you can’t. Everything you know—people, food, sights, is gone, except for an occasional teaser glimpse. Everything you had based your life on, your daily routine, how you brushed your teeth, what you ate every morning for breakfast, your TV shows, your hobbies, your sex life, your job, your computer, how you dress, all the things that make up your identity, gone. All the daily patterns that you base your life around, all the work habits, the comfort zones, are now, abruptly, gone. And it is not like when you take a trip and leave part of your life behind; this transformation is neither voluntary nor reversible. You did not choose to alter all of this—frankly, any of this—and you can’t undo it either. And the changes were just beginning. I would now have to be taught how to adapt to my new, imposed body. Instead of leading a class, I was a student, with trauma and painful lessons every step of the way.
This is the second post in the series “Bronx Accent” written by Bob Slayton
Robert A. Slayton grew up in the Bronx and is now a professor of history at Chapman University and the author of seven books, including Empire Statesman: The Rise and Redemption of Al Smith. In 2008 he came down with transverse myelitis and returned to an active teaching and writing career. Slayton has been married to his wife, Rita, for 32 years. These pieces are excerpts from a memoir of the disability experience he is working on.