Focus
Student Scene
November 20/27, 2000
My Life as a Guinea Pig
By Tarayn Grizzard"Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place." —From Illness as Metaphor by Susan Sontag
At the end of my undergraduate career, poised at the threshold of medical school, I was rereading Susan Sontag's classic Illness as Metaphor one pensive evening when I realized that although I had fulfilled all the requirements and procedures and general rigmarole necessary to becoming a medical student, I had not the faintest idea what constituted a "good doctor." More importantly, I realized that in all of the processes and forms and interviews I had been involved in, no one had ever asked me if I had ever been seriously ill. It wasn't their fault; after all, statistically speaking, I was more than likely, at the ripe old age of 21, to be healthy. Indeed, I was healthy—and thankful for it; but that evening, I began to wonder how I could begin that next fall to treat the sick when, as Sontag would put it, I had never ventured into their country.
Opportunity Knocks
God has a funny way of combining, at least for me, practical experience and philosophical pondering. With spring break a mere three weeks away, and my bank account sorely depleted from medical school interviewing, I had to find a way to pay for my vacation fast. Serendipitously, a friend of mine mentioned that his laboratory needed subjects for a pH study—$500 for two days' work, essentially. I would receive the payment in a check the day I finished the study. Would I be interested? Calculating the number of tacky T-shirts $500 could buy, I immediately signed up.And, I have to admit, it wasn't my first time; I had been in a research study before. In fact, it was the first study that introduced me to the adverse effects of neurotrophine-3 (don't try it at home, kids) and taught me how to do an SQ (subcutaneous) shot. That first study taught me many things—especially how to explain to your confused roommates that you're in a study and aren't a heroin addict. But it hadn't changed my life outwardly. Sure, I had had side effects like fatigue, malaise, and increased appetite due to the drug, but I still appeared well.
This new study was different. For $500, I would not only have to follow a special diet for a day, eating exactly what they said I should, I would also be required to have my esophageal pH monitored continuously for 24 hours. However, I would not feel sick, since this was simply a study to establish normal stomach pH levels. The bottom line? For 24 hours, I would be connected to a waistpack pH monitor, 3.5 feet of plastic NT tubing, and a metal probe inserted through my nose and positioned at the level of my cardiac sphincter. The tubing would trail up my esophagus and out my nose, over my ear, and down my torso, where eventually it attached to a bulky pH monitor on my belt. It was attractive, to say the least. To be frank, I almost backed out when I realized I wouldn't be able to skip school or work—and just stay home—on the days I had chosen to do the study.
TG as she looked during the research study.
Eureka Moment
While deciding whether or not to chicken out, I saw the study's cosmic coincidence: here was a chance to discover, without actually being ill, what it might feel like to be chronically ill, to have my person marked and defined by the appearance if not the actual instance of illness. It could be, at least for me, a minor social experiment—not to mention $500. My curiosity overcame my cowardice at that point, and I signed up to do it on days when I had a full load of classes and also worked. Surely I wouldn't be a massive spectacle?In order to enhance the effect of the "social experiment," as I had grandiosely begun to call my part in the study, I had told no one but my then-boyfriend. I had gotten up exceedingly early to be hooked up at the lab and barely made it to school in the rush hour traffic. The study rules dictated that I follow a strict diet and not deviate at all—even caffeine was out. As a hard-core Diet Coke addict, this was nearly unbearable. I arrived at school groggy from lack of sleep, stressed from the traffic, under-caffeinated, and occupied with the typical undergraduate deluge of papers, projects, and lab experiments. I hardly noticed or thought about the 3.5 feet of tube extending down my throat and taped to my face—but everyone else definitely noticed. I was unprepared for the reaction.
When I entered my first class of the day, filled with friends and acquaintances, no one made eye contact with me. I caught quite a few stares from across the room, and my professor, while lecturing, commented on the power of illness in the poem we were reading and gave me a knowing, pitying look. An acquaintance I normally nudged in class with sly remarks didn't respond—except with a brief, horrified glance—when I made a catty, stage-whisper commentary about a long-winded diatribe another student had just made.
My next class was worse. A friend of mine, who did not know I was in a research study, saw me enter the very crowded room and yelled, "Hey, R2D2, what's going on?," drawing immediate attention to me and my tubed face. I sat more quietly than usual in that class, and I caught several girls pointing and whispering in my direction. I rushed out of the building after classes, hungry for lunch and some solitude. As I struggled with a heavy door, four different people attempted to stop me from opening it unassisted, despite my protestations. Finally, annoyed, I let the last man open the door for me and help me through it.
Rubbernecking
At lunch, I decided to further "enhance" the experiment by sitting in the only unoccupied seat—the booth for disabled persons at the front of the student center cafeteria. Once again, I caught several stares. Several people stopped completely just to gawk. I felt lonely and put-upon at my booth, located in the front of the cafeteria to facilitate wheelchairs, but also, unfortunately, providing a focal point for the morbidly curious.At one point, while reading the paper and eating my study-mandated lunch, I dropped the sports section on the floor. Two different people dove for it when they saw me start to bend over to pick it up. It was kind of them, to be sure, and I was grateful for any gesture of kindness, especially when there could have been stares and whispers. But why did they assume that I was incapable of retrieving it myself? Couldn't they even wait for me to try?
The rest of the day was all downhill: more whispers, stares, various people trying to help me through doors, up stairs, and into elevators. I was exhausted emotionally from the day's events and barely made it through work, which was even more frustrating than school had been, because I had to tell each of my MCAT students, in detail, about the study. That night, drained from the day's events and, embarrassingly enough, the lack of caffeine, I went to sleep early and slept poorly, since the tubing kept altering the probe's position in my throat.
When I woke up, I went back to the lab and had the tube removed, thankfully without incident, and returned for the rest of the week to the "land of the well." My perspective on illness, however, was changed. Out of curiosity, I found myself noticing people with disabilities on campus. Were they really treated as I had been? I was surprised to find that they were.
Trading Places
Now in the land of the well, I saw for the first time how irritated a young, self-sufficient lady on crutches was when a gentleman all but demanded that he help her up the stairs. What's more, I actually felt like I could understand, at least on a minor level, what she felt even though my "illness" was temporary and superficial, whereas hers made a deep and permanent impact on her life. At that point, I began to see the study as a gift, a chance to begin understanding what chronically ill and disabled people go through facing the irritations of day-to-day life.Based on my experiences, I think participating in research studies can be a valuable experience for medical students. Though it isn't sensible to maintain that medical students are unable to treat the sick without having been significantly ill themselves, it should be said that it is easier to empathize with someone whose experience one has personally shared. After all, psychiatry residents are required to become patients themselves, undergoing serious, full-time analysis. There are many reasons for this. The most interesting is that analysis is a dynamic process, and to fully participate, an analyst must have been on both sides of the couch.
Though this doesn't make sense for many parts of medicine—surgery, for example—shouldn't medicine in general be seen as a dynamic interchange between patient and doctor? And, if viewed from that perspective, wouldn't it make sense for those medical students who have never experienced a serious illness personally to somehow experience it, perhaps through a research study?
Besides, medical experiments have traditionally been a way for many medical students to make money—and most medical students are certainly poor. Perhaps future internists might better understand the implications of drug side effects on day-to-day living if they, for instance, participated in a study to determine the effects of Ritalin in normal subjects. I know I'd be game.
Tarayn Grizzard is a first-year medical student at HMS.