A man tapes a warning sign to a wall in my room. Electric yellow, so nobody can miss it. The doctor comes over in his protective gear, looking straight out of a Cold War film: grim face behind lab goggles, impenetrable gloves.
Once there’s food, the nurse makes sure not to touch the plate I’ve eaten from—then scuttles away when it seems I might sneeze.
I’m scared that my sweat, my spit, my mere presence will end up harming the hospital workers. I’m scared that when my mother comes to visit, however far away she stands won’t be far enough.
Although quarantine is, right now, nearly synonymous with Ebola, those of us who have been quarantined for other health reasons also know its psychological toll. Sure, it’s frightening what your own body is putting you through—you’re likely in pain, you’re likely lonely and thinking all sorts of what-ifs. But it’s also frightening to know that you could harm, unwittingly, each nurse who comes to help. It’s frightening that although you want to see your family, doing so would mean putting them in danger.
In March 2011, when I was 26, I was cordoned off at Mount Sinai Hospital in Manhattan. I was in pain, and certainly worried about my own body, but also concerned about what my body might do to those around me.
It took only a short amount of time before I felt like a completely different version of myself. This new, dangerous me didn’t feel human: When I was lucky, a nurse would eye me with wary compassion during her inspection of my vitals before she jumped out of reach. When I was less lucky, she would look at me like I was a freak. According to Crystal Johnson, a nurse at Emory University Hospital, recovered Ebola patient Nancy Writebol said she felt like “an alien” during her treatment, when Johnson and other healthcare workers had to avoid her touch. I could relate.
But I was a different kind of contagious than Writebol and the other Ebola patients. The reason I was holed up in a safe room at Mount Sinai was that I was radioactive. As in, nuclear-war-nightmare radioactive. Already the unlucky recipient of one stigmatized disease—cancer—I now had to swallow a radioactive pill that would kill off any remaining cancerous thyroid cells—and that would make me, as the doctors never failed to emphasize, a walking public hazard. A living contaminant.
Sarit Golub, a professor of psychology at Hunter College and the CUNY Graduate Center and a specialist in patients with infectious disease, said that even less serious illnesses that don’t require quarantine can make a person feel bad about themselves, even inhuman.
“Illness has a profound impact on identity—even when we have a minor ailment like a cold, we often say, ‘I don’t feel like myself,’ ” Golub said. “When that illness is contagious, the threat to identity is intensified.”
With quarantine, it’s intensified even more. “The fear that you might infect someone else is a tremendous burden,” Golub said, one that requires you to keep careful track of all your behaviors in the midst of the illness you’re already going through. But, she added, even if you take that fear away, simply having what’s considered a scary contagious disease is enough to mess with your sense of self. “The guilt and shame that comes from knowing you ‘are infectious,’ even if you take all steps to protect others around you, can be itself damaging to identity,” she explained via email. “The experience of being perceived as (and treated as) a potential vector of disease can rob individuals of their sense of self or self-worth and reduce them to their illness.”
Although we know, intellectually, that “the person is not the disease,” emotionally, we still make that connection, Golub said. Despite all we know about germ theory and the way disease is spread, “there is a strong pull toward believing that catching a contagious illness is in some way a moral failing.”
People who are quarantined—or even those who are simply identified as contagious—are the recipient of that stigma. Stuck in a room so they can’t hurt others, they are constantly reminded. At Mount Sinai, all the medical staff, I noticed, wore meters around their necks that looked like Geiger counters. I asked about them right away, fascinated but horrified. The meter kept track of how much radioactive contamination a given worker received from me each day, one doctor explained. It quantified how much damage my own body had potentially done to theirs. If, at the end of a shift, a worker’s numbers were too high, they had to take a break from quarantine duty.
As in patients with Ebola, my bodily fluids were especially dangerous. The doctors spent a very long time explaining to me just how toxic my sweat, saliva, tears, and blood would be to anyone who came near. Although I couldn’t “infect” someone else with radioactivity, I could contaminate them.
Between fear of my own sweat getting on a healthy person and the thought that these nurses were risking a lot just to help me, I began to feel myself shrink.
On the second day, my mother visited. But I saw just the tip of her nose as she stood in a doorway 15 feet away, just as the doctors had instructed. She started to tear up, torn between her protective instincts and the need to follow protocol. She asked if she could come in and see me for a minute, even from just five feet closer. No, a staffer told her. Not at all allowed.
Doctors had given me other instructions as well, even though I was staying in a safe room. When you use the toilet, they said, flush several times. Otherwise there will be a high concentration of your fluids that could contaminate someone. Stay inside the room. If you need something from a nurse, keep the door closed and just press this button. If you think you might throw up, tell us.
After three days in isolation, the doctors told me I was sort of okay to go. I rejoiced—then realized that they had said “sort of.” Sort of highly dangerous, sort of not as dangerous as yesterday. Sort of terrible if you do this, a behavior that might put others at risk, but okay if you do that, another behavior that sounded just as risky.
For instance, I was banned from taking public transportation. I was also told to stay 20 feet away from everyone for five more days after I was released. But in my weak state, I had to take a taxi home from the hospital. A taxi that would put me, at most, maybe three feet from the driver. There was no question: The doctors told me that I needed to be driven. How was this okay?
So I asked. The medical staff overseeing my quarantine said they had reasons backed up by science—but reasons that seemed to contradict everything else they’d told me not to do. My mother, who wanted to stand next to me for one minute, was not allowed to: too dangerous, they said. Yet this cab driver, who would sit right by me for 15 minutes—whose exposed eyes and ears and nose and mouth would catch any droplets my body expunged—would be, supposedly, fine.
As we learned earlier this month, suspected Ebola carriers can be subject to a similar kind of quasi-quarantine with contradictory-sounding rules. Youngor Jallah, whose mother’s boyfriend, Thomas Eric Duncan, recently died of the virus in Dallas, was told by officials that “she could take occasional trips to the store but should avoid public transportation”—even though a contaminating sneeze is the same for a cashier at the store or a passenger on the bus.
Before I was discharged from the hospital safe room to continue my quarantine at home, I got a long list of strict rules that I had to follow if I didn’t want to endanger my family. This time, the doctors said: Use disposable plates and utensils, or else your mother’s regular ones will be contaminated. After you use them and they are coated with your saliva, they are no good: Throw them away. But don’t let your mother take the garbage out, because if the trash bag holds a plastic spoon that has been in your mouth, she might be in danger, too. Be careful about your bed sheets. When you sweat at night, you will contaminate them. When you need to wash them, don’t let your mother go near them, even though you are the only other option and you are too sick to do laundry. When you brush your teeth, rinse the sink three times after you spit out the paste. When you pee, flush the toilet three times, too, so you don’t leave a contaminated bowl. Remember: Your bodily fluids can contaminate everyone else. And don’t—not for a moment, even as you deal with a disease and, on top of it, the awful feeling of being a biohazard—don’t even consider letting someone give you a hug.