This is it, I thought. This is how I’m going to die.
I couldn’t see through my right eye, and my left eye was quickly swelling shut. As I sobbed with fear, four nervous EMTs stared at me. One had just inserted an IV full of epinephrine into a vein in the crook of my right elbow. My body shook with adrenaline. I wanted to stop crying, but I couldn’t.
I was right in the middle of one of the worst allergic reactions of my life. My mom and I had been taking a five-day astronomy class in the Sierra Nevada mountains in the summer of 2004. It was generally interesting—right up until the second-to-last night, when I had a severe reaction to something unknown. And so, here we were: me with my swelling face and my mom insisting that the EMTs do something. “We’ve never seen anything like this before,” one responded. No wonder they were staring.
A helicopter came, as the nearest hospital was about 90 minutes by ambulance. If my reaction worsened during this time, well, the outcome would not be good. The propeller noises drowned out my screams of terror, as I was medicated with IV Benadryl and epinephrine and strapped onto a gurney.
But panicked as I was, I did not die. Pumped full of medications and my own adrenaline, the swelling in my face and throat slowly went away. After my mom arrived at the ER by car, I was discharged and we went to her sister’s house in Reno, where we stayed for several days. I needed to recover and was on enough medication to sleep for 15 hours.
I’d been experiencing these allergic reactions since the age of 14. The first one, which occurred on a family vacation to France, was caused by food allergies. But I had learned that I was also sensitive to freshly cut grass, dust, and certain trees. No matter how many reactions—and subsequent Emergency Room visits—I experienced, the reactions were not something to which I could adjust. Each one was terrifying, usually consisting of facial swelling, hives on my neck and arms, a crackly feeling in my lungs, extremely loud gas and/or diarrhea, and the inability to breathe. This last symptom, as anyone who has experienced severe asthma or an anxiety attack can tell you, was the scariest.
Something that had once been nourishing and necessary—food—became immediately suspect and threatening. I knew that in less than five minutes, a meal could become a serious medical emergency. Such was the case one Halloween evening, when I ate a salad with pistachios and my face erupted so severely that I looked like Homer Simpson. Since that time, I’ve had numerous nightmarish experiences at restaurants, where simple cross-contamination turned into six or seven hours in the ER.
Despite my own and others’ near-fatal experiences, some do not think food allergies are all that serious. I’ve come across blog comments and Tweets in which someone complains that food allergies didn’t exist in their day, so, they ask, what’s with all of these people saying that they or their kids have food allergies?
The reality is that food allergies have become increasingly common. According to Food Allergy Research and Education (FARE), up to 15 million Americans, including almost 6 million children, experience food allergies. Not all of these individuals experience anaphylaxis; but for those who do, it’s a big deal. Anaphylaxis nearly always requires emergency medical care.
Eventually, I grew to expect allergic reactions. I became convinced that I was going to die from one of them. As a result, I never experienced the common teenage trope of feeling invincible or immune from harm. No, I was going to expire early, and it would probably be a painful and embarrassing death—one involving diarrhea, loud gas, and unattractive facial swelling right up until the moment it happened. What could be worse?
“The shadow side of ‘soldiering on’ is that anxiety becomes a constant drumbeat. ‘I might die from this’ constantly resounded in my head.”
I began to think about what my funeral might be like. Some of the allergy medications worsened this tendency. Prednisone, for instance, made me weepy and emotional for no apparent reason. But my thoughts and fears were too creepy and morbid to express to anyone else, including the psychiatrist that I was seeing for other issues. So, I attempted to soldier on as best I could. I continued getting As in school, contributing to my school’s drama department, and generally trying to be a “good kid” for my family and the wider community.
The shadow side of “soldiering on” is that anxiety becomes a constant drumbeat. I might die from this constantly resounded in my head. It didn’t help that I already had generalized anxiety disorder.
Now, in my 30s, I am processing these teenage anxieties. Perhaps this explains why I’ve become fascinated with death—particularly how North American culture tries to insulate itself from the messy realities of dying. To avoid confronting our mortality, we intensely medicalize end-of-life-care, and we endlessly fantasize about a future in which immortality is taken for granted. Perhaps this cultural denial of death is slowly eroding. There are an increasing number of college classes and popular YouTube channels on the subject of death, and “death cafes” are also on the rise. At such places, members of the public drink tea, eat, and relax while chatting about death.
I have tried to apply this matter-of-factness about death to my own life. In addition to food allergies, which could kill me any day, I live with other health conditions such as fibromyalgia, which causes chronic muscle pain and fatigue. Because the cause of fibromyalgia is unknown, many people without any connection to the condition question whether or not it actually exists. But some recent studies have pointed to the condition as connected to emotional or physical trauma, leading me to wonder how much the fibromyalgia and food allergies influence each other. Fibromyalgia is pain, and allergic reactions are a different kind of (acute) pain. When I have an allergic reaction, the fibromyalgia pain and fatigue tend to make my recovery time from much longer than what I experienced pre-fibro. This is also due to the side effects from Benadryl and other medications, which impact my fibro.
Despite my best efforts to avoid foods that cause allergic reactions, I still experience a reaction every 3-6 months that tends to be inexplicable. None of the allergists I have visited in the last few years can offer any insight. And so, the specter of my mortality is still felt.
Sometimes, when I get a reaction, I have to spend a few hours on the toilet, during which time I wonder if I should go to the Emergency Room and, if the reaction is particularly painful, whether or not one can die from having diarrhea due to allergies. Then, after a massive dose of Benadryl, the facial swelling and hives start to go away, and I’ll start to feel better. I may drift into a log-like sleep for a couple of hours. But in these moments, I am acutely aware: I am mortal, and I have health conditions that could impact me in a serious way. I may not be ready for death, but I no longer live in constant fear of it.