Chronically Absurd: Recognizing the Ridiculousness of the Serious
"Granulomas in an Intestinal Lymph Node in Crohn's Disease." By Patho, via Wikimedia Commons
"I am not going to school dressed like a suicide bomber." My mom and I both burst out laughing, disturbing the rest of the endoscopy suite and earning stares from doctors, nurses, and other patients. I had been assured by my doctor that I would be able to go to school after the procedure, but it was becoming clear that I had been lied to. It had seemed easy enough when she was describing it to me. Swallow a pill containing a camera, wear a little monitor for the day, and then they should be able to get a clearer idea of what was actually wrong with my intestines. It turned out that the monitor was not that little after all, which I discovered as a nurse wrapped a thick black belt around my waist and hung a large black box with flashing lights around my neck. By the time that the nurse came back, I had laughed so hard that I was crying, which she interpreted as tears of fear and tried to console me. I then had to explain that far from being nervous, I was having a great time at this serious medical test.
Part of the reason that this was so hysterical to us was that this incident was just the latest addition to the list of ridiculous things that had happened to me in the last few months. I was diagnosed with Crohn's Disease the summer before my senior year of high school. When I tell people this, I usually lead with a story like the one that begins this essay. I have found that revealing illness within the context of a funny story generally results in a more relaxed audience than saying, "I was slowly dying for a year but now I'm sort of ok." This is particularly helpful when I have to tell people that I do not know very well. It gives people a designated response—laughter—and avoids the suggestions that I should try holistic "medicine" and stories about distant relatives who also have Crohn's. In the past two years, I have rarely left a medical appointment without an incident that I can spin into a good story. I have found that a few people find it off-putting to hear chronic illness discussed so flippantly, but since I am the one who is actually sick, I figure that I should get to have some fun with it.
My discovery of my illness seemed like a cosmic joke at the time. The summer before senior year, I was struggling to come up with a topic for my Common App essay. While discussing this with my parents, my dad commented that it was a shame that I had a pretty good life, empty of horrible tragedies to make into a dramatic, tear-jerking essay. About two weeks later, I was in the hospital being tested for colon cancer. My dad, whom I share a similar sense of humor with, said, "Yeah, we probably shouldn't have joked about that."
I did end up writing my essay about my illness, but I chose to go for "morbid humor" over "heart-wrenching." I wrote about the day of my first colonoscopy, which I easily could have spun into a sob story of the power of the human spirit or something equally insipid. Instead, I focused on the fact that from the time that I was told I needed this test right up until they knocked me out, a minimum of seven different medical professionals and fellow patients told me that the anesthesia they were going to use was, "The same stuff that killed Michael Jackson." I thought it was a strange juxtaposition to try and convince me that this was a safe procedure and then say, "By the way, this drug has killed people." It was always said with the same odd smile as if I was supposed to be comforted by that fact. Essentially, I told the story of that day, highlighting every time this phrase was said among the rest of the chaos of that day. Some high points included watching a careless nurse slam a bed with an unconscious patient on it into a wall and hearing another nurse asked my mom what my star sign is. It's Cancer.
As I was starting to wake up from the anesthesia that had killed Michael Jackson but thankfully not me, I heard one of the nurses yet again telling my parents, "It's the same stuff that killed Michael Jackson," because what else would you tell parents waiting for their daughter to wake up from that same drug. I announced that I was awake with a short, drug-fueled rant about how they should stop telling people that. I was a bit worried that my essay might have been too weird, but I got into colleges so I guess I have to give a bit of the credit to Michael Jackson.
After a year of trying different medications and getting sicker, I was eventually prescribed an intravenous medication that resulted in a drug-induced remission after a few weeks. I figured that everything would start to calm down now that, at least symptom-wise, I was "better." Fortunately for my supply of stories, this has not been the case. As the number of objectively terrible incidents has increased, so has my ability to find humor in them.
One of the better stories in this category occurred when I fainted after getting bloodwork done. I came to and was told by two lab technicians and my mother that I had a seizure. I was pretty sure that this was wrong because I have fainted and had people mistake it for a seizure before, but I just rolled with it until we got to the hospital. I later was told that I just had a convulsive syncopy, which was described to me as being exactly the same thing as fainting except with fun shaking to freak out your friends and family.
When the ambulance came to take me to the hospital, I was given a nose cannula and hooked up to oxygen. That was the highlight of the day, due to a joke one of my friends had made the week before. I have a friend who also has Crohn's Disease and our mutual friend Gia had compared us to Hazel and Augustus from The Fault in our Stars. Hazel has lung cancer and wears a nose cannula attached to an oxygen tank. Naturally my thoughts when I was being hooked up to oxygen were not about concerns for my health, but rather, "I need to take a picture for Gia." After spending the ambulance ride thinking about how I was going to take a nose cannula selfie without the EMTs thinking that I was an idiot, I was ecstatic when they offered to let me keep it. I still have it in my collection of hospital memorabilia, which among other things includes every hospital bracelet I have ever gotten and several pairs of the special non-slip socks hospitals give you before a procedure.
Even my routine medicine infusions never go smoothly. In a perfect world, I would be taken in on time, spend two hours in the chair getting medicine, and go home. During one particularly bad appointment, I had to wait five hours before a nurse finally called me in and set me up. Seven hours after arriving at the hospital, I was finally done. The nurse, who seemed a bit distracted, tried to take out my IV. This should not have been a difficult job for someone who spends all day putting in and taking out IVs. I usually look away while this happens, but was forced to look back when I heard a soft "Oh no," which is never something you want to hear in a hospital. Sure enough, I was splattered with a small amount of my own blood. I am not exactly sure what went wrong since I was trying not to look, but it is not a problem that I have had occur before or since. My immediate thought was that this nurse, who had not been particularly attentive during the rest of the appointment, had managed to mess up so badly that she had bled on me with my own blood. While this was certainly an enraging end to my seven-hour hospital ordeal, it did feel fitting and my mom and I laughed as we left the hospital.
One of my main concerns at the beginning of this year was having to tell an entirely new group of people about my illness. When I was first diagnosed, I did not tell any of my friends for a couple of months and most of my extended family was unaware for almost a year. I did not want to be the "sick girl" and have people talking about how awful it was and how bad they felt for me. I was unsure if I wanted to tell people at Notre Dame right away, but ultimately decided it was better to drop it casually in the beginning than having it be a big revelation later in the year. It is not really something that I can hide as I regularly disappear to go to doctor's appointments and reappear with gauze around my arm.
It definitely catches some people off guard when I tell them because I do not "look sick." The combination of that shock and knowing that they will not know what to say is partially why I am hesitant to tell people. Again, I found that people appreciated hearing stories with a humorous spin on them and that it was easier for me to tell people in this way. All of my illness-related experiences could be told as depressing stories, but focusing on the humor that can be found in them makes them much easier for me to share and for others to listen to.
While it was odd in the beginning to share my illness with people that I had just met, it is nice now to have people here who know what is going on so that I can share the ridiculous things that keep happening to me. At my most recent infusion, the nurse taking my vitals told me that my blood pressure was low. I explained that it was normal for me and she responded that it was because I am "young and healthy." She did not seem to realize what she had just said, but I immediately told my friends what had happened. There I was, sitting in the hospital, IV in my arm, waiting to be attached to a bag of immunosuppressant drugs, and this woman tells me that my blood pressure is low because I am "healthy." When I got back to my hall, one of my friends that I had told about the incident said, "That was hilarious but if anyone else had said that it would have been super depressing." Part of what makes a hospital story good is that the person who experienced it is sharing it and showing the humor that he or she found in his or her own situation. From the outside, it can be hard to see illness as anything but sad. It takes someone who has experienced it firsthand to convince people that it does not always have to be that way.
Illness makes people uncomfortable. The tendency is to speak of it in hushed voices, and even then only as something somber and pitiful. I have found that by telling people my stories with a humorous tone, everyone, including myself, is more comfortable talking about this topic and treating it like something normal. While it is not something I would choose to experience if given the choice, I have made my peace with my illness. It is not going away so I might as well get some good stories out of it.