A while back an ex-acquaintance of mine joked that my way of being with chronic pain is like being an anomalous Saiyan: My body is constantly taking damage but doesn’t appropriately register it and can’t level up as it ordinarily would, so it has to turn on itself—autoimmunity in a nutshell—to achieve its next power level. I’m over 9000 all the time, but nothing changes because of it. If anything, autoimmunity registers each new “enemy” as ever-stronger.
I wouldn’t say I’m over 9000 by any stretch of the imagination, but. But like always I’m using humor to minimize how far this situation spiraled out of control.
One month and one emergency surgery later, I’m healing well and readjusting to basic movement and day-to-day living, and my mood is so improved that I can only think my exacerbated depression lasted so long not because of Lyrica withdrawal, but because for three weeks my body was struggling to inform me that it was dying.
To summarize:
Yet again, I almost died. As in ThisIsMyManifesto.htm, which tries to make sense of the false security of patterns and the close calls I’ve had with death—near-death by drowning, or car accident, or accidental overdose—this is where I live again: fresh from disaster, still miraculously alive, another near-death averted and no real sense of what’s to blame.
As always, I want to blame myself. I pride myself on being attuned to my body’s signals, thanks to chronic pain. I also pride myself on my ability to power through a 6, 7, 8 on the pain scale. I saw my sister off to Ghana at the end of August. My closest friends were out-of-town on vacation. Alone and without distractions, I settled down to plan my fall courses. I was tapering down on Lyrica and ready for those symptoms based on previous experience and others’ anecdotes: depression, suicidal ideation, anxiety, paranoia, occasional auditory hallucinations. In retrospect, those symptoms passed in a week. At the time, they blended seamlessly into the symptoms I experienced in the first week of September: extraordinarily excruciating pain in the abdomen, lower back, and rib cage. I had experienced something like this back in May and had a full blood workup and abdominal ultrasound, all of which came back normal. Add to that the fact that my new insurance doesn’t cover ER visits in their entirety, and that my few ER experiences in the past resulted in high medical costs for a couple of tests, a prescription for Vicodin, and a pat on the head. Death was preferable to the pain I was experiencing but flare-ups are part and parcel of fibromyalgia and as much as I thought about going to the ER, it didn’t make sense to actually do it.
I ended up canceling my first week of classes and hating myself for it. When my depression worsened, I assumed it was the usual suspects: that pain was disabling me from living up to my usual standards regarding my creative work and my teaching. By the second week, the pain had decreased from praying I died before the morning to a 9 or a 10 on the pain scale. Where use of my abdominal muscles at all had provoked waves of pain, near-vomiting, and one fainting spell, I could now use them enough to walk. I took that as a good sign. I began relying on coconut water and protein shakes and resumed living my life. Not once did I break a fever, and I though I dreaded drinking and eating I was able to do so. When my period started in the second week I thought I had an answer: an ovarian cyst, one that ruptured, after all I’d had a large one in the past. As with a flare-up, I just had to wait out the pain. I called my doctor to schedule a checkup and (unknown to me at the time) the message I left with her office never reached her, so I was squeezed in for an appointment at the end of September.
Meanwhile, I commuted. I taught my classes. As though I was conserving energy for what counted, I felt disoriented and unreal when I walked through the city; I’d walk into a store and freeze because I couldn’t place where I was or why I’d entered and I couldn’t make my muscles move. I prepared for my classes in a daze and started relying on Powerpoints, which I never do, because I was worried I wouldn’t remember the information. When I entered the classroom, it felt like my brain switched on. When class was over, I was mentally done.
In the two weeks before my appointment, it felt like the pain was improving. I didn’t have it in me to worry too much when both I and my physical therapist felt a lump in my abdomen. I assumed it was a digestive issue. I still didn’t have a fever, though my temperature occasionally dropped below normal. What I was noticing was that my depression was much, much worse, nothing interested me anymore, my fatigue was impossible to overcome, and I had new symptoms like confusion and an impending sense of doom. I saw my doctor, who was brusque but asked the right questions, did a thorough exam, an EKG because my resting pulse was a steady 118 and I couldn’t breathe deeply, and then sent me off for a CT scan with contrast. If you don’t know, “contrast” in this case means drinking a barium sulfate solution that most people in the waiting area didn’t seem to like, but I hadn’t eaten in so long than I drank both bottles like I was doing shots in my MFA program.
After the scan, the official diagnosis was “your pelvis looks like a bomb went off.” And so I ended up in NYU Langone’s emergency room.
I may have been the most belligerent patient there that night, because each team that looked at me had a kneejerk diagnosis and refused to listen to me, to the point that a resident refused to believe that there was no chance I was pregnant. Severe constipation was suggested, because I looked too functional to be really sick, an issue I’ve dealt with since I sought a diagnosis for my chronic pain years ago. When asked how I rated the pain, I said an 8 or a 9, and was treated as though I was exaggerating my symptoms, even after I explained that my daily pain settled around a 6 or 7. I was sent off for an OB/GYN exam, during which the resident seemed more keen on deciphering the mysterious images on her screen than on her crying patient. I had one hand over my mouth to keep from screaming, and the technician, who was the most compassionate person I saw there, apologized profusely the whole time, and before I was wheeled out, caught my hand and reassured me that someone would find an answer for me.
I don’t remember her name, but I was so grateful for her kindness that I cried all over again.
I told the next doctor I saw that if images were turning up nothing concrete, I wanted to go under the knife. I was patronized a little until I asked if I could walk out. Then I was promised I could go into the surgery rotation for the following day. I was taken to an inpatient room for the night, which I shared mostly with patients who were recovering from surgeries. I thanked whatever deities watch over me that I’m always paranoid enough to take a go-bag with me to every doctor appointment, because it meant I had pants to sleep in and a charger for my phone. I was put on an fluid and antibiotics IV and prohibited from eating or drinking anything. I slept poorly because the bed did not agree with my chronic pain and I was starving. I turned to Facebook because I couldn’t remember how many people I had to apprise of the situation and I was starting to think I was actually going to die, without finishing my novel or my Ph.D, let alone the courses I was teaching.
When the team of residents and students returned in the morning and gathered around my bed like some white-coated cabal and talked to me as though I could expect to be under observation for a weekend, I was tired and angry enough to inform them I was leaving at noon unless they found a surgeon willing to work on me. Later in the day, the surgeon arrived with a resident, and for the first time since I was admitted I was able to talk straightforwardly about my condition. He gave me his input and listened to my concerns, and we came to an agreement about an exploratory laparoscopic procedure that same day, provided the OR could fit me in.
That surgeon, and the two head nurses in the inpatient room, were fantastic. I felt like a human again, with a history and a profession and thoughts of my own, instead of an object to be marveled at for being functional and coherent with that much systemic inflammation. My brain wasn’t working too well but Foucault was a mental refrain, what with the medical codes and the classification of bodies and the equation of disability with inability to work. I had minor moments of self-satisfied resistance via my less-classifiable body modifications, namely my scarifications: two large thigh pieces, the left a circuit board, the right a ham radio schematic, both commemorating phases of my Ph.D. program. Tattoos may be mainstream now, but the idea of allowing an artist to take a knife to your skin has so far startled all my doctors across the board. Never mind the fact that these artists have extensive experience and surgical training; this training took place outside of the medical school, the (state-)sanctioned institution for such learning.
I personally view body modication as a point of resistance to a system of health care that mandates what can be done to your body, by whom, and at what cost.
At one point, a nurse asked about the panopticon tattoo at the back of my neck, and despite my hunger, pain, and frustration, I found it in myself to deliver a mini-lecture on disciplinary power, social control, and the medical institution, and the quality of resistance inherent to body modifications. When I do this in a classroom, I deliver my lecture to the blackboard so that the students behind me can look at the tattoo as I’m speaking. In the hospital room, I lectured at the wall and then turned around to discover a small gathering of nurses listening in on what I had to say. There was no formal discussion that ensued, but there were comments that indicated that they understood perfectly the relationships between surveillance, disciplinary power, and the hospital’s system of coding the disabled body.
I maintain that my panopticon tattoo is among the best investments of my teaching career.
By early afternoon I was admitted to the OR. When I was awake and coherent later that night, I was informed that I’d been walking around with a ruptured appendix for almost a month. Inflammation had caused the organ to descend to a position where there was more blood flow, which was largely the reason I’d been fighting the infection so well. They had no idea how I’d been able to walk let alone teach with that much going on in my system. The appendix was removed and I was told to follow up with the surgeon and two other specialists in 1-2 weeks, given that multiple organs in the pelvis were involved in the infection. It looked so bad the surgeon suspected cancer, but pathology came back clear. Turns out the hardened tissues and the lump I’d felt was the place where the organs were adhering to one another.
Surprisingly, I was discharged that same night, into the care of my friends, who had magically shown up. I was ordered bed rest for a week, with short walks and breathing exercises on the hour to prevent blood clots and to alleviate some of the chronic pain. To be honest, my body triaged the pain such that the focus was on my abdomen, which only hurt at about a 4-5 on the pain scale. It was almost a relief. The real problems have been discomfort, having to accommodate the stitches and scar tissue when I move, having to use my arms and legs to maneuver when my arms and legs have arthritic problems of their own. I had to relearn how to breathe, which made online lecturing difficult. I had to learn to rely on the kindness of others, which I’ve never been good at, and I shouldn’t have been but I was surprised at how many people expressed concern or offered to help, whether it was shuttling me from Brooklyn to Manhattan or from my home to the hospital or from the New Brunswick train station to SC&I proper. That first weekend, my friends made sure I was comfortable and well-fed on amino acids and bone broth, which takes at least a half a day to make. A professor has offered to take odds-and-ends to my office for me since I can no longer carry them myself. My parents were ready to defy logistics and fly into New York to take care of me, despite the fact that I have a roommate and nowhere to put them and last-minute flights from the Midwest are expensive.
I’m two weeks out of the surgery now. The Dermabond sealant has come off and the surface sutures are healed shut. The internal stitches will dissolve over the course of 4-6 weeks. I have to avoid lifting as much as possible, and my fibromyalgia is acting up because I can’t activate my core, but I’ve been given the go-ahead to eat like a normal human being (albeit with abdominal discomfort), to sleep on my stomach, and to return to physical therapy. In my follow-up with the surgeon, he actually explained why I was under observation that long (was I that belligerent in the hospital?) and then asked me about my scarifications, since I was unconscious by the time he saw them. Turns out he’s a closeted nerd and so we discussed media studies and bodily codes that complicate standardized classification. He promised me images of the organs inside and outside of the pelvis and drew me a sketch of the mess my appendix had made. Again, humanizing. I don’t think I thanked him enough.
After this ordeal, when my acquaintance joked that I was a Saiyan, I started laughing, and immediately had to splint my stomach so I didn’t rip a stitch, but it makes a kind of sense if you squint at it the right way and employ a little magical thinking. Dragon Ball isn’t really my go-to reference, but I’ve always been fond of the Heroic Second Wind or the Death Activated Superpower tropes, in the media I consume and in my own work, possibly because chronic pain is like a constant series of heroic second, third, fourth winds. I’d like to think that, like Obi-Wan, I too shall become more powerful than you could possibly imagine—that in the act of surviving a nearly fatal episode of as-of-yet undetermined origins, I will come closer to being what I’m supposed to be, or knowing what I’m supposed to know, whatever answer it is I’m constantly searching for with regards to the Sri Lankan ethnic conflict, belonging, resilience, survivor’s guilt when I still can’t believe I’ve really survived anything.
Is this the thing, then, that I can say I’ve survived?
The ER doctors called me a dead woman walking. A specialist called me very, very lucky. I’m left with conflicting feelings of outwardly-directed anger and inwardly-directed guilt. I can say it’s the system that has taught me to ignore my body’s signals, up to and including pain that makes me crazed enough to want to die. I don’t want to die. I keep thinking I should have known because fibromyalgia means it’s my business to know, to parse usual pains from new symptoms, to take on the behaviors that doctors characterize as hypochondriac.
My primary care practitioner acted like I was being ridiculous when I tried to explain why I avoided the ER when the pain first began. The surgeon understood. Now that it’s all over, though, I don’t know what to make of it, or what I’m supposed to have learned, if anything. I’m already hyper-aware of the linkages between physical and mental being. In retrospect there are so many signs I should have listened to, but at the same time I know why I overlooked them: most of those signs are, for me, routine. Pain. Fatigue. Fibro fog. Problems concentrating. I ignored the increasing depression because it’s a side effect of Lyrica withdrawal, which happened to coincide with the beginning of the flare-up. I ignored the lethargy for the same reason. I ignored the sense of impending doom because I always have the feeling that death is around the corner, but in retrospect I think I could tell that it was different. I’m just not sure I had the energy to care.
The day before my doctor’s appointment, before the ER, before I knew anything, I was crying on campus in plain view because I didn’t even have the energy for dignity. I’d just been told on the phone it was likely I was internally bleeding, but I think the crying was over the exhaustion of representing myself as knowledgeable and not hypochondriac, with my laundry list of symptoms because I look at the body holistically. There were nights that first week when I woke up crying because I was sure I had already died, and I hadn’t finished my novel, and the last thing I’d said to any of my family members or friends hadn’t been I love you.
Still, let’s be real: this was too routine a procedure for me to accept it as a matter of survival, even if it could have killed me.
I’m trying to write my way into an answer, but I don’t think there is one. Everything I’ve just written is nothing new, and it does nothing to assuage the guilt I feel over having trained myself to live with pain because I have no other way to support myself, even though my friends and my shrink have all told me, “How could you have known?”
My feeble response: But. It’s my body. I should have known.
For me, September began, more or less, with weaning off Lyrica because of new insurance and higher costs. When I refilled the prescription last week, by an accident or miracle, my copay hadn’t changed. So September ends with me, sans appendix, returning to my twice-a-day regimen and fumbling my way back towards the joy I used to feel when writing, lesson planning, teaching, and learning. I miss food. I miss pants. I miss being able to run for the train. I miss all the money I’ve poured into cabs these past couple of weeks. I miss being able to sleep without pain in my stitches waking me up. I wish sneezing, coughing, and laughing didn’t threaten wound dehisence. I wish I were less tired all the time. But all this is the low, low price of recovering from what still feels like the most ridiculous near-death experience of my life to date.
I think, ultimately, I write this hoping I can conclude that I’ve learned my lesson; next time, I’ll go the ER. I’m not sure I can commit to that. And I don’t know who to blame: my pride in being able to power through; the costs of health care; the fact that, excepting one surgeon, two nurses, and a radiology tech, I was treated like I couldn’t possibly know my own body, and if that’s the case then isn’t it true that I couldn’t have known, and aren’t I inculpable in staying at home with my pain?
No matter how I force the numbers and patterns, it never adds up.
