tin

Tin is traditionally the gift given on a ten-year wedding anniversary. This is the story of the day my life changed forever, ten years ago today.

On July 1, 2009 I had an allergy test. I had been getting sick for the previous few months and I was starting to think I might be allergic to peanuts. It was supposed to be a routine, uncomfortable but non-invasive procedure. I was supposed to go in for an hour or two, walk home, spend the day watching TV and doing an online CPR certification course, and finally pick up my brother from therapy.

I still don’t really know what happened. The beginning was unpleasant but normal, I think. I grimaced through being poked in the back with dozens of needles and tried to distract myself from the few itchy spots that were cropping up in places I couldn’t reach or see. The doctor returned after about 30 minutes, drew circles around the hives that had formed and wiped something cold (rubbing alcohol?) on the spots where the allergen-coated needles had been. I nervously awaited the verdict: while the skin test hadn’t indicated that I was allergic to peanuts, he would be giving me a prescription for an EpiPen “just in case” and advised me to continue avoiding anything containing peanuts. I felt my stomach drop. When the doctor left the room, I started to panic. EpiPens were what stopped you from dying of anaphylaxis. Did that mean that I might die?

If you are going to realize your own mortality, I would highly recommend doing it somewhere more friendly than a doctor’s office, or at least one with more snacks (maybe you don’t have this problem, but existential threats always make me crave a salty crunch). I was shaking and felt like I was going to faint. I had had this feeling one or two times before, but still didn’t have the language or self-awareness to put together that I was having a panic attack. When the doctor came back with some pamphlets, I tried to explain but all I could come up with was “I feel kind of weird”. He jumped to action, giving me liquid Benadryl and explaining that he thought I was having a reaction to the allergy test. When it appeared that I wasn’t getting better, he gave me a shot of epinephrine, otherwise known as adrenaline.

With hindsight I do believe he was doing what he thought was best: the prevailing medical opinion is that it’s better to administer epinephrine in a suspected case of anaphylaxis even if it’s not clear that a patient is having an allergic reaction that severe because it won’t hurt them. Meaning it won’t kill them. I can tell you though, that the experience of having to pull down your pants in a strange room full of people you just met, who are telling you nothing about what they’re doing or thinking—it’s not a great one. Having one of those strangers stick a giant needle in your leg, one that releases a substance that makes you shake uncontrollably while your only true desire is to just stop shaking—that experience might not be death, but it’s pretty goddamn terrifying. Walking home alone after being kept in a cold room with the same strangers for hours for “observation” because your parents weren’t expecting you to have a medical trauma today and left their phones off during their respective meetings and therefore couldn’t come pick you up—also not death, but also really, really not fun. Sitting in your parents’ living room trying desperately to focus either on Gilmore Girls or falling asleep until someone else gets home so you don’t have to feel so impossibly alone? Not death. Still bad. I give it zero stars.

I didn’t die on July 1, 2009. I don’t actually think I was in danger of death in the first place, though it’s very hard to prove that and my memory of this event is decidedly limited and subjective. But that date will forever be a curtain that separates my life into “before” and “after”. 

Since I started working as a social worker I’ve been amazed by human resilience. In the two thousand plus years we’ve been around we have developed the ability to cordon off parts of ourselves, pushing them out of the way so we can get back to the business of keeping ourselves alive. Of course, this often becomes a problem eventually—that’s why I have a job!—but it can keep us going for years, even decades. We split ourselves into smaller parts and decide which ones will stay locked away and which will be presented to the world. Eventually, but only if it’s safe, we might take out all the pieces of ourselves and consider them together to try to make sense of who we are. Those who do not have a place where they feel safe continue to live segmented emotional lives until they either find one or reach a critical point when it is no longer possible to keep those hidden pieces from view. I feel very sad for my 19-year-old self when I look back because for whatever reason—society, genetics, personality, random luck—my reaction to a fluke medical complication was to turn inwards and block out any possible help. It didn’t help that it was 2009, which was only ten years ago but was a different world in terms of mental health awareness. Thankfully I had some really great supporters but the prevailing attitude in my workplace, at my school, and in the world at large was one of judgement and pity. Of course, people struggling with mental health should have help, it said. But it was something you went away for, that you dealt with on your own, and that you didn’t talk about when it was over. I went to high school with a few people who went to rehab or took a semester off from college and we spoke about them in hushed tones, as if talking too loudly would make their problems contagious. So, for the first year and change after July 1, 2009 I split myself in two—the one who was competent, smart, and driven, and the one who was very, very sick. It didn’t last because it couldn’t, and I’m still amazed I made it through.

I went to work at a summer camp less than two weeks after the allergy test. It was easy to put it in the back of my mind at first. There was a lot to do and the distraction helped put distance between me and my growing fear that death was just around the corner. The on-stage version of me was energetic and zany. I played the guitar and planned cool lessons with swords. The off-stage version of me never slept, still mostly just ate bread, and had panic attacks all the time. Neither version was taking her allergy meds because in the traumatic hours I spent with my allergist I had neglected to pay attention to his note that I was also very allergic to several varieties of tree and plant pollen, which is relevant information when you’re living in the woods during peak ragweed season. I didn’t have the bandwidth to process so much new information; instead I elected to focus all my energy on work and, obviously, on romance. In my head I was trying really hard to date someone I worked with who is now one of my best friends. Outside of my head, I walked around in an exhausted haze most of the time I wasn’t actively teaching. I cried a lot and had huge bags under my eyes and a series of weird rashes thanks to my aforementioned medical negligence. I alarmed my cabin mates by collapsing in panic attacks and ruminating about peanuts. This is all to say that despite my personal vision for romantic success, the reality of my outward presentation was probably less than sexy. I tried so very hard to pretend I had my shit even a little bit together but I’m sure it was obvious that I didn’t. And my friend and I did not date, and that was definitely good. By the end of the summer people started taking work away from me because I was not in a place where I could handle counting money, let alone start a new relationship. From my state of extreme denial, though, this was a very frustrating situation! So many things were out of my control that putting all my energy into a plan of seduction seemed logical and the fact that it wasn’t working was baffling. What could possibly have been getting in the way of what was so clearly destiny?

I don’t love reflecting on that time for a number of reasons (embarrassment is chief among them), but honestly, it was kind of nice, maybe even necessary, to have something to obsess over that was not my growing certainty that I was about to die.

After camp I moved to Germany. You’ll notice that in the previous paragraph I stated that my coworkers didn’t trust me to do basic math for them, and yet I moved to a foreign country less than a week after camp let out for the summer. Again, I note the human tendency to compartmentalize as a form of resilience. In Berlin I suddenly had much more free time, which I dedicated to finding all the new German things that might kill me. It helped that I became very sick about two weeks into my stay. (I always tell people I had mononucleosis because it’s easier to explain but the truth is that I don’t know what was making me sick.) All I wanted to do was sleep, but I also couldn’t fall asleep because being alone in my apartment made me panic. I was still getting used to not eating peanuts and buying food in a different language wasn’t helping… nor was the discovery that my food allergy list was growing longer. It was hard to know what was causing which symptoms. Nausea on the bus? Probably anxiety, but maybe mono. Random hives? Allergies, but maybe also anxiety? Feeling like fainting for no reason in the middle of H&M? Could be anything. It felt like my body was attacking me from the inside. For a while, when I was really sick, I couldn’t walk very far or carry my own groceries. I depended on accessible features like elevators and escalators to get around and sometimes went to the pharmacy in my pajamas because I felt too exhausted to put on real clothes. To the untrained eye, however, I appeared to be just another lazy American living it up on study abroad. My eco-friendly roommate lectured for not taking the stairs and got mad when I couldn’t get it together to stand for five minutes to wash dishes. I had to quickly learn how to advocate for myself in two languages. I was only 19, but I did my best. I pored over my school’s German-English medical dictionary and learned that mononucleosis is known either as die Mononukleose or pfeiffersches Drüsenfieber (my East German doctor had heard of neither). What I did not look up was that a panic attack was das Panikanfall and what I did not mention, even to myself, was that I was still having about 5-6 per week. Eventually everything got a little better, but I still don’t really know how.

After two months my doctor finally agreed to test me for mono and ruled that I had a different virus but I never really figured out what it was or how it (or even if) it was really impacting me. For a long time that bothered me but in reflecting now I don’t think it should have mattered what was actually making me sick. I was having a really hard time in a foreign country and couldn’t do my best work, and it was either because of a virus or because of my brain’s reaction to a traumatic event, possibly both. Why did it matter which was true? How would a virus both make my symptoms both more real and not my fault? I hadn’t caused my panic attacks and food allergies any more than I might have caused some classmate’s airborne viral RNA to infect me. Until mono was on the table, my professors seemed mildly concerned about me, but mostly just annoyed that I wasn’t doing the kind of work they expected. I didn’t have a lot of the right language to talk to them about it at the time, which probably didn’t help, but I wish there’d been some context or precedent that meant I wouldn’t have to be the one to pull the perfect combination of words out of my incredibly distressed brain. I was sick. It was hard enough to go to class and figure out how to feed myself without learning an entirely new advocacy vocabulary.

I’d like to say that I think things have gotten better in this regard the last ten years, but I’ve worked in college student accessibility recently and have had frustratingly similar conversations with faculty who seem to view their students’ mental health needs as a form of school-sanctioned laziness. Symptoms are distressing, no matter the cause—they are, in fact, especially distressing when the cause is unknown! A medical rationale shouldn’t be required for accommodation, especially since medicine seems to be especially inept at correctly identifying mental health concerns. All my doctors in Germany kept telling me to “calm down” and “get some rest.” Couldn’t they see that not being able to calm down was the problem? Three different doctors in Germany told me there was “nothing wrong with me” (one also scolded me for wasting her time and charged me €300). They might just as well have told me I was hysterical and sent me to the seaside “for my nerves.” However I might have fallen short in advocating for myself, I deserved better from the people who were supposed to be helping me. Unfortunately, things were about the same when I got home. When I started school again in January, I started having other somatic symptoms of anxiety, most notably “spontaneous severe asthma.” Nine months, four doctors, three emergency room visits, and two different bronchitis diagnoses later and only one person, a nurse practitioner, even did a lung function test, a standard procedure for the treatment of asthma. Her shocking revelation was that I likely had very mild asthma, but the main concern was that I had panic attacks and what I would probably assess today as PTSD. I spent two hours in her office crying because she was the first person on two continents in over a year of doctor’s offices who had really listened to me. Thinking back on this now, it makes perfect sense that I’m a semester away from making a living by listening to people and advocating for their needs, though it definitely wasn’t a linear progression from then to today.

I didn’t have the language or confidence to do anything but try to fight my way through that year of hell the best I could. I did ok—I managed to stay in school and even pulled it together enough to start dating my amazing partner, J, but I still gave up a little over a year of my life to physical illness and acute emotional distress. Unfortunately, a lot of things were different, and the changes were difficult to manage all at once. Before all of this I had been a fairly outdoorsy and athletic person, but after I was afraid to go too far from a hospital for fear I would collapse somewhere, as I once did in a cappella rehearsal. (Less critically, there is a real lack of nut-free camping food). My friendships changed, and some of them didn’t survive the year I was sick; not everyone was comfortable talking about mental health or had the language at 19 or 20 to give the kind of support I needed. Even music was no solace; my stage fright when playing the piano became unmanageable when it worsened into panic attacks, and even my voice changed from a floaty soprano to a sometimes-phlegmy alto. For a long time it felt like I lost most of the things that made me who I am. I know college is a time when most people explore new versions of themselves, but this felt like starting over completely. I have been fortunate enough to return to or reimagine many of the things I liked to do before getting sick in the past decade, but I still grieve the break in community and sense of self I felt in that already vulnerable time after getting sick.

Today I manage anxiety, allergies, and their associated complications with a combination of medications, lifestyle choices and really excellent friends. “Manage” is a deliberate choice of words because it does sometimes feel as though I am overseeing a long-term project. I am constantly aware of the weather and the pollen count. I read ingredient labels compulsively, storing away the names of snack foods and beauty products that are safe for me to use and mourning when their formulas change. I have a mental list of foods that I should avoid based on environmental criteria. Can I have two cups of coffee today? No, because I had two cups yesterday and it made me jittery and anxious. Should I eat that roll covered in pumpkin seeds? Yes- there are only 8 of them, they’ve been cooked, it’s February and I’m not going on a plane later (this is a real example, unfortunately). I have six types of shampoo in my shower, some of which I can handle using once a month, others I can only use once a year without having an adverse reaction. In some ways, as a fairly analytic and organized person, I was made for this kind of lifestyle. It is also exhausting and very difficult to explain to other people. Sometimes it feels like it must be a lot of work to know me, to keep me around, and especially to feed me. For all that’s harder now though, some things are better. I wasn’t a very emotionally healthy person before July 1, 2009 and living through the subsequent year of terror made me confront some things about myself that I might not otherwise have been brave enough to examine. It made me a more empathetic person, one who might not have found social work (or maybe even anything) to be a desirable or rewarding career. It helped me to see that the world is flawed and highlighted ways in which I could help make it better.

I’ve spent much the last ten years wondering what would have happened if things had been different. But they’re not, and that’s ok. I really like the person I am and the life I have now, and it’s hard to think of much that’s better than that.