Content Warning: Descriptions of mental illness, descriptions of needles and surgery, mention of eating disorders
I’m sitting in the emergency room with my boyfriend at two thirty on a Wednesday afternoon, each of us masked up and clutching the other’s hand in anxious solidarity. He’s wearing his Christmas shirt today, the one he insisted on wearing to work in the middle of April, while I’m wearing a blue polyester hospital gown that resembles an abstract painting.
I had reluctantly called Boyfriend at work not forty minutes ago, after twenty minutes of struggling to catch my breath and sweating profusely. In that moment I thought back to my faulty central line tubing this morning while connecting my fluids and the recent news about the vaccine side effects as I shakily summoned the strength to lean myself onto the coffee table.
Now here we both are, being told that every test they ran was “unremarkable,” that what I had feared was surely a pulmonary embolism turned out to be a precipitous anxiety attack. Boyfriend, who happens to suffer from far worse anxiety than I do on a daily basis, is visibly overcome with inward panic about my condition. He’s reacting as if we’ve just had a huge ordeal, as if I had just had a major medical emergency that will now require extensive recovery.
Later that night, when I text my dad to warn him about the upcoming hospital bill, Boyfriend’s parents order Chipotle to be delivered to our apartment, while Boyfriend plans to take the next day off of work.
It’s not until the middle of the next day that it hits me: Boyfriend is not used to these minor emergencies like me. He still leaves the emergency room shaken up and aghast, rather than ready to go back to work after a quick stop at Panera. He grew up in the type of family where everyone in the household took off work and school if someone needed surgery. I grew up in the type that didn’t even count the sutures anymore.
Growing up as a disabled child, I learned to live in a world that was my own.
My world was populated with people who were in charge of my life, in charge of my body and what would happen to it. My parents couldn’t possibly handle me on their own, even with only one of them working, so my world was full of people like my Nana, who lived with our family since my birth, my aide at school who was in charge of me alone from kindergarten through sixth grade, and so many specialty doctors that we always hit our insurance deductible within the first month of the year for every year of my life.
My world also had rules that other children didn’t have to follow: Never ever be absent from school, because otherwise you will be “the sick kid” for the rest of the year. Never tell anyone how sick you feel, even adults—it’ll just ruin their day. Even if you aren’t hungry, eat the damn crackers, or she’ll tell Mom and you’ll never hear the end of it!
I was disabled and sick, with protruding tubes and scars bigger than my tiny torso, simultaneously throwing up in class and falling asleep before first recess. But despite having virtually no friends and enduring piercing stares from other kids every time I went into the bathroom accompanied by my aide, I am forever grateful that I had the opportunity to attend school with abled children.
As Riva Lehrer recalls in Golem Girl, her memoir recounting the challenges she faced growing up with Spina Bifida, she was not allowed to attend “real school” until high school. Although Lehrer looks back upon her time at the Cincinnati School for Crippled Children with fond memories, she compares it to the abjection she faced every moment that she wasn’t surrounded by other disabled children: “We were messed up the way kids were, but not the way outcasts were, until the end of the school day, when we got back on the bus and turned back into freaks.” .
Reading Golem Girl was the first time I had read a personal memoir from someone that actually understood. After a long day of trying to relate to abled people and fit into their world, I could dive back into Riva’s world and know that somewhere, many years ago, she was experiencing the same thing.
Of course I had met other disabled people before. In fact, I am now so fortunate as to be part of an entire community of people with similar disabilities and illnesses to mine. But the thing is, acquired disability and lived disability are very different things. I’ve been disabled my entire life. Like Lehrer, I’ve never known anything different than my existence as a person with a disability, and will never know what it’s like to enjoy the affordances of accessibility. Lehrer knows what it’s like to have other children say mean things about your medical devices without thinking, when you yourself are a child as well who doesn’t quite understand either. She too had a special stash of books and stuffed animals to take to the hospital, understood the chaotic comfort of having a roommate at a children’s hospital, collected surgical scars and hospital bracelets like travel souvenirs, could spell the names of narcotic medications before the names of primary colors.
But most importantly, she knows what it’s like to live in a body that’s not your own. She too resides in a body for which decisions are not made by her, over which she has virtually no control over. In her words, “There is a violated, dissected body called mine that others have seen, and that I never will.” Even more horrifyingly, in Lehrer’s case, she possessed so little control over her own inalienable rights that she was involuntarily sterilized.
As Lehrer recounts her medically horrific childhood, she maintains throughout her narrative the comfort and support she felt from her family, most notably her mother, who served as her constant bedside caregiver and advocate. Lehrer establishes her mother, Carole, as the heroine of her story from the very first chapter, affectionately entitled “Carole’s Story.” Perpetually by her side as Lehrer endured countless orthopedic procedures resulting in increasingly grimmer prospects, no one made her feel the way her mother did. Lehrer and her mother both suffered chronic bodily pain which allowed them to form a bond of inseparable understanding and respect—a bond unlike anyone else in their lives.
As Lehrer grew older and discovered new challenges of her disability and body limitations, Carole’s condition progressed to a point where she considered undergoing a procedure that would result in elective paralysis. As Lehrer recalled the events surrounding her mother’s rapid deterioration, I began to realize that we’d both endeavoured to glean cues on how to perform our own disabled femininity from our mothers: “I’d stopped looking to her for lessons on how to be female, but neither could I look to her for tutorials on how to be disabled. Neither of us had role models for how to perform our own bodies.”
Sometimes I believe it is the course of nature that disabled young girls have difficult relationships with their mothers. Particularly if the daughter was born with the disability, and especially if said disability also resulted in great trauma or loss of fertility on the mother’s end.
Myself and my mother are no exception to this phenomena. When I arrived two weeks early via emergency cesarean with a laundry list of complications, I may as well have been opening up a standing tab in my mother’s life that, unbeknownst to me, I could never repay.
As a product of my birth my mother suffered intense physical and emotional pain as well as PTSD, a diagnosis she would seldom lets me forget. Following a scarce trip home from the hospital, my mother severely injured her back when she was rear-ended on Market Street right by the hospital. For months, my mother herself was hospitalized, isolated from her ailing newborn. My mother was forbidden to hold me, never mind that she was in too much pain to do so. As a result, I bonded to her mother, my Nana, from my incubation chamber.
For the first five years of my life, I was more often in the hospital than not. I underwent my first ten or so surgeries in these five years, resulting in numerous ostomies, stomas, and feeding tubes. My small body became colonized with scars and punctures, one in particular wrapping around nearly my entire torso. My parents had long stopped counting the number of times the Hickman line that fed directly into my bloodstream needed to be replaced after I had yanked it out, no doubt in a fit of pain and frustration, resulting in a plethora of small sutures lining my chest for the rest of my life.
I could tell from an early age that my birth defect was a deterrent from my family’s plans. My dad was on a path to becoming a professor, halfway done with his PhD, but instead he had to take jobs in the tech industry that would provide good benefits for his family. My medical bills sucked up most of his single income, so we never got comfortable with “nice things”. In fact, we lived in a 950 square foot apartment with five people, in not the best neighborhood but not a terrible one. I knew from a young age that my medical bills, especially the surprise ones, were a huge financial strain on the family. I was trained by observation that I should never reveal how much pain or misery I was in, because it meant an expensive trip to the hospital. At seven, I knew how much a bone density test cost, that my parents couldn’t afford to pay for my prescription eyeglasses, and that my sister’s asthma medication was even more expensive than my ostomy supplies.
My parents had to come to terms with what I knew as my lived reality: at only five years old, my body had already failed me. I was too fragile and sickly to play with other children, assuming that I could even keep up with them. Joining Little League was out of the question, for I would surely pull out my feeding tube when sliding into a base, or catch a deadly viral infection by sharing a bat with the other kids.
Of course, we could scarcely afford such luxuries. Activities that promoted bonding with other children often came with exorbitant entry fees, which we could seldom afford on a salary that went straight to medical bills.
Naturally, growing up I had no friends, except the friend that I was practically born with since our parents had been roommates in college. Six months younger than me and practically bonded to me since her birth, Rose was my first example of a life without tubes being possible for a child.
The second was my kid sister, who arrived four lonely years after me. That was after we had been evicted from my parent’s Oakland loft, had been homeless before retreating to my dad’s grandmother’s house as a last resort, then had fled from there to live with Rose and her family. Did I mention most of this happened while my mother was pregnant and my father unemployed?
Luckily, once my replacement had arrived on the scene, we were settled into a modest apartment that fit all five of us, Nana included. I remember shortly after the birth of my sister, looking up at my father and asking, very confused, “When’s she going to get her bag?”
For many disabled individuals whose disability began at birth, puberty can be extremely hard on your mind and body. While everyone else’s body is going through normal teenage changes, our bodies are going through those same changes, on top of our own unique and unpredictable set of changes related to our illness or disability. This makes navigating your teenage years even more challenging, especially socially. Unfortunately, many disabled youth are highly vulnerable to bullying and social outcasting from their peers, due to their lack of familiarity.
This social victimization is, unfortunately, another part of Lehrer’s childhood that was also reminiscent of mine, and I instantly felt that I could relate to all of my repressed trauma as I read Lehrer’s different yet familiar experiences with abjection. As she describes being made fun of for the way she walked with her leg braces, she recalls that she suffered so intensely that she sought to have surgery on her legs to improve her walking and remove the need for braces.
“I gambled my body on other people’s visions. I believed that there would be an end to surgeries. That someday, I would be normal enough,” writes Lehrer, illustrating a societal phenomenon in which disabled individuals seek somewhat unconventional treatment options that have a chance—no matter how small—of affording them a “more normal” exterior or interior life, whatever that may mean to them.
Once again, I was no exception to this phenomenon. When I was thirteen, I was finally well enough for the first time in a while that I could attend normal middle school without an aide. Can you guess what one of the first things I noticed about eighth grade girls was? It was that they all wore these teeny tiny crop tops with their skin-tight jeans, leaving very little to the imagination with their scarless, bagless bodies on display. I wanted to wear crop tops too, without everyone seeing my gross colostomy bag and accompanying scars, and I had heard of some other continent diversion alternatives at my summer camp for children with bowel conditions. So, I promptly made it my mission to have any and all tests scheduled in order to discover the possibilities of my meager intestine.
After extensive, sometimes painful procedures and tests, it was discovered that my remaining intestine was such a meager amount that there was no additional possible option for me other than my colostomy. However, my surgeon allowed that he would perform a revision surgery at my request, a serious surgery which involved taking out a small section of my bowel and bringing a different section to the surface, only lower this time. Positioning my stoma as low as possible in this way would grant me the freedom I so craved: to wear crop tops without my ostomy and scars being visible. My remaining intestine is the length of my stomach to my colostomy stoma, and nothing more. If any more were removed, I would likely have to be put back on a feeding tube, a possibility of which I didn’t comprehend the full magnitude when I agreed to the surgery at only sixteen. To this day, my colostomy revision surgery remains one of my most traumatizing hospitalizations in my memory, which is saying something for the amount of time I’ve spent in various invasive treatments. But, like Lehrer, I was willing to take this enormous risk of undergoing a major surgery at the mere hope of being that much closer to normal.
Living in a body that’s out of your control can have long-term psychological effects. I was diagnosed with my first mental illness at age fourteen, the day I graduated eighth grade: anorexia. It was about time—I had been starving myself since April and nobody seemed to have noticed. Not that I did it for attention, I did it because I had discovered that the more sickly I appeared, the more desirable my body looked in tight clothes. That was the first day I began therapy, and it was followed shortly by another diagnosis—bipolar depression—which was followed by a shower of medications and pediatric psychiatrists that wouldn’t stop smiling at me.
My plan had been to just take Lithium and Lexapro and keep quiet to simulate the desired outcome. In the summer of 2013 I had graduated eighth grade and been diagnosed with anorexia and bipolar depression; by the spring of 2014, I was in a mental hospital for two weeks involuntarily. Ever since then, my mental health has been a constant struggle with new diagnoses at every turn: PTSD, situational anxiety, depression, OCD. I’ve recently discovered that I have a lot of PTSD associated with childhood trauma.
For a few years now I’ve enjoyed reading mental illness fiction and non-fiction, but when I decided recently to pick up Prozac Nation: Young and Depressed in America, I felt as if I was quite literally reading my teenage diaries of my darkest psychological implosions. The memoir chronicles the life of late author Elizabeth Wurtzel during the years 1986-1994. During this time, Wurtzel finishes high school, enrolls at Harvard University for Comparative Literature, and suffers many subsequent psychiatric breakdowns, with the narrative switching irregularly between diary entries and recollections of those entire years in sequential order as if they are actually happening.
One of the things that really drew me into Wurtzel’s story was how she was at the same time unquestionably smart and irrefutably suffering from clinical depression. As a Berkeley student with a 4.0 who at times can’t comprehend my own intellectual ability when compared to the amount of Prozac I take every day, I was intrigued that Wurtzel was not only extremely smart—capable of studying both Physics and Comparative Literature—but also extremely ill, to the point where she was entirely dependent on illicit drugs to get through the day.
Reading Wurtzel’s story, I felt proud to be a fellow mentally ill intellectual. I was reminded of the stereotypes associated with being clinically depressed, how they could never attend top colleges and function at the same academic and social level as their mentally sound peers. I imagined that I had befriended Elizabeth, and that together we were representing severely mentally ill intellectuals around the world, proving that you could be crazy and still possess a love for Proust.
If imposter syndrome became part of my life when I got to Berkeley, it definitely felt much less isolating experiencing it alongside Elizabeth reading Russian literature from the Harvard infirmary. I suddenly understood that there were other people, at Berkeley and other highly academic schools, that were just as “clinically insane” as they were certifiably well-read. And that meant that I did indeed fit in somewhere, and that I didn’t have to justify myself for anything.
After a while, Wurtzel recognizes that the clinical depression she deals with is akin to a chronic illness, thus giving herself permission to listen to herself more and indulge in her mental health, framing it as a physical illness that reflects a full-time job. This recognition of mental illness as chronic illness or disability has been a new phenomenon in the twenty-first century, something Wurtzel briefly alludes to in her 2017 afterword: “According to a study done by the Journal of Clinical Psychiatry, in 1990 alone 290 million workdays were lost to depression.”
Both Wurtzel and Lehrer have something unfortunate in common: pain. Whether it is physical pain from excruciating procedures, or psychological pain from clinical depression, they represent women who deal with pain on a daily basis and are expected to remain silent about it, to appear visually normal and psychologically intact in order to fit into society’s margins of normalcy.
These women and their pain came before me, paving the way for disabled women to follow. Without Wurtzel having to advocate for herself to have the severity of her condition taken seriously, or Lehrer advocating for women like herself who are subject to involuntary sterilization, society would be an even less accessible place for disabled young women like myself. They live grounded in a pain that no one else can see and that many seldom even believe, yet this pain dictates their every move and emotion. Their stories are courageous proof that disabled women are strong and capable, and that disabled women deserve to be heard, their rights not ignored and their bodies not violated.
Disability and mental illness representation in literature and popular culture combats the stigma and stereotypes associated with such conditions, providing an opportunity for young disabled individuals to feel seen and represented. These women tell their stories vulnerably and without embellishment to show what they have overcome, to validate the pain of themselves and others, and to prove that they are not alone in their abjection.
A week after my ER visit, I’m a day late to access my port and run fluids because I’m still anxious over what happened last time. I don’t want to risk another possible pulmonary embolism, or worse.
But worse things will certainly befall me if I don’t infuse today, as my body desperately needs those fluids.
All alone in the apartment that Boyfriend and I share, I slowly gather the supplies needed to access my port myself: dressing change kit, huber needle, iodine disinfectant swabs, and a saline syringe. Donning my protective mask and gloves, I carefully disinfect the area on my upper chest where my implanted port protrudes, and take a deep breath as I guide the huber needle into the raised skin, making sure I get blood return before I expertly place Teggaderm over the site and hook up my tubing.
I did it—I successfully jabbed a needle in my chest once again in order to deliver necessary hydration to my defective body.
I may be disabled, living only at the mercy of my chronic illness and unruly digestive system every day of my existence, and I may never be able to function as an able-bodied individual, but how many people can say they get to stab a needle into their chest twice a week?