As a Disabled Writer, I Know My Stories Are Worth Telling
Despite how fruitless both nursing and writing can feel, I choose to engage with both.
Despite how fruitless both nursing and writing can feel, I choose to engage with both.
One of my roles as a nurse is to prolong the inevitable. Knowing that doesn’t detract from the satisfaction I get from advocating for my patients, getting extra salsa for a dying man’s meal, or leafing through photos of a woman’s pets. Even when the human in bed won’t survive past tomorrow, I listen to their stories.
I’d been a nurse for three years when I bicycled from San Diego to Montreal. I kept a blog and, afterwards, a friend encouraged me to apply to a writing workshop. In high school, English was my worst class, so I’d never taken my writing seriously. My friend told me bicycling across North America as a brown queer woman was not a narrative people were familiar with; he told me my story was important to share with other people like me. The first writing workshop I attended was with all writers of color. I spent a week waking up at 6 a.m., writing at breakfast alone, and crying. I didn’t believe I deserved to be there, I couldn’t believe I was a writer.
Two years later, I returned to that workshop. By then, I had been published, interviewed, and gotten so many rejections I barely shrugged when they came in. I had been paid for my writing, which seemed to matter. In rooms filled with other writers of color, I was able to acknowledge my own desire to share my life with others. I knew what it was to finally recognize the need to construct a new set of stories, to be bolder and braver with myself. After two rounds of workshop, I wanted to help construct a safety net for writers to let themselves fall, even when writing felt like a collapse.
Last year I returned, this time as a staff member. I wanted to curate the heart-opening experience that I’d had in workshop. I believed I could take care of the students in the workshop in the same way I took care of my patients. I have specific skills from nursing that have nothing to do with saving lives, though I had no idea how much I would rely on these skills outside of my work as a nurse.
Most hospitals teach the steps of service recovery, which frames how to address patient dissatisfaction. It’s sometimes abbreviated as: Listen, Empathize, Apologize, Respond, Notify. As a brand new nurse, my preceptor told me, “If a doctor doesn’t give you the answer you want, escalate. Never back down from what you know is right.” I’ve been taught to always give the kind of care that I would want my mother to have; it’s unacceptable for me to give a single patient anything less.
But no matter how hard we try, nurses make mistakes. People can die when we mess up. Even if a mistake is minor, we are encouraged to talk about what went wrong and to document it so the hospital can prevent harm in the future.
In my second month as a new nurse, I made a medication error. Instead of giving a patient their anti-anxiety medication, I gave them a medication to lower their blood pressure—the drugs started with the same letter and instead of scanning the pill before giving it, I handed her the med cup first. The patient was already swallowing when I realized my error. Panic seized my chest and I bolted out of the room. I found my preceptor and told her what had happened.
“What do I do now?” I asked.
She laughed. “Why are you crying?”
“I gave the wrong medication. I made a mistake,” I said, wiping the tears away.
“It happens to all of us. Do you know why you made the mistake?”
I was shocked at her calm. I had done something that was, to me, unforgivable. I felt like I should never be allowed near a patient again if my confidence could lead to sloppiness. “I didn’t scan. I didn’t do what I was supposed to do. What’s going to happen? What should I do?”
She talked me through the process: I told the patient I’d given her the wrong pill and filled out an incident report. I checked her blood pressure more frequently in the subsequent hours. She didn’t experience any bodily harm from my error, but my whole sense of self was shaken. I remember that feeling every time I am tempted to do things quickly instead of safely.
In hospitals, we learn that most patient dissatisfaction comes from communication errors. Making information manageable and transparent is just as important as listening to lung sounds, spiking medication bags, and checking vital signs.
Five weeks before I took my role as staff at the writing workshop, a cofounder of the organization was publicly accused of abusive behavior on multiple fronts. I spent weeks immersed: emails with the administration, phone calls with friends and alumni who were concerned for the future of our literary home, messages and group chats with my workshop families.
As a nurse, I believe that if we treat errors as products of the system in which they are produced, we can work towards future conditions of safety. As a staff member of the workshop, I was expected to defend the leadership, who I did not believe were acting in the best interests of the students, and protect the accused.
we can work towards future conditions of safety.
Instead, I chose to use everything I’d learned as a nurse. I escalated when necessary. I used the principles of service recovery every day. I was shocked to realize that certain leaders had thus far relied on defensiveness by denying their complicity, ignoring complex questions from students, decentering survivors’ needs, and focusing on how difficult it was for them. I documented what happened every day, even if just for myself, so that I could learn from each moment. And, when I realized that communication breakdowns were everywhere, I knew the organization was willing to let miscommunications bubble up into rage rather than take responsibility for and address how we’d failed.
On one particularly difficult day, I decompressed with the friend I was staying with. I felt like I’d been run over by a car. I was working twelve-hour days six days a week. I was managing staff schedules, writing a newsletter every day, planning meals, coordinating faculty needs, and arranging conversations between students who wanted to voice their discomfort with the organization. I was paid less than a quarter of how much I get paid as a nurse, and, despite all my work, I was still deeply uncomfortable with how the institution’s leaders were behaving.
It felt impossible to teach that a woman’s perspective is valuable, or that people who are not men have bodily autonomy. I wasn’t hired to educate how power dynamics affect an individual’s ability to make a choice or why something that might be legal, like sleeping with your adult students when you control their grades and careers, can damage the psyches of young writers. I couldn’t explain any of this, but these became the core conflicts. No one could understand that when someone who has more privilege—those with institutional power, or those with more power based on their race, class, or gender—asks a survivor to justify, or logically explain how they were harmed, they are often questioning whether someone with less power has a story that is as valid as their own.
As a nurse, I can do my best to mitigate misunderstandings, but I am still part of the healthcare system. I witness when doctors’ perspectives are privileged over patients and, when a patient is sick or upset, how easy it is to misrepresent a person who has experienced harm as “difficult,” “noncompliant,” or “crazy.” I see every day how it is difficult for doctors—who feel they rightfully have all the knowledge and power in the situation—to listen to outside voices, like those of a nurse or a patient.
Ultimately, all of this learned awareness I had from working in hospitals felt impossible to explain to defensive people. I felt defeated. Everything was mismanaged, from schedules to safety plans. “I don’t care about this anymore,” I said to my friend at her dining table. “I am putting so much labor into making the workshop possible and ultimately, nothing will change.”
“But don’t you care?” she asked me. “That’s why you’re doing it.”
“What are you talking about?” I snapped.
“You do care. If you didn’t care, you wouldn’t be having this conversation.”
I stood up and stormed out of the room, feeling like I’d been punched. I did not want to confront how hard I’d been working, how useless it all seemed. To acknowledge that I cared would be to admit that, despite my care, I was failing.
I write because the audacity of storytellers and writers has transformed my own life. In order to write the stories that were closest to my heart, I had to believe my existence mattered in all the messy, hard-to-explain ways. At that first writing workshop, no one told me that my stories were too complicated, even as a brown queer daughter of Indian immigrants who bicycles across continents in between nurse gigs. I couldn’t erase myself anymore. I remember having a one-on-one meeting with my teacher and, as she brainstormed ideas for how to go forward in my work, I got so overwhelmed that I started sobbing. I told her, “I’ve never taken myself seriously. I don’t want to. But if I keep writing, I’d have to. I don’t know what that means, or where that would lead.”
It was in a workshop with writers of color that I first allowed myself to take myself seriously. I now believe that words matter more than their monetary worth within capitalism, more than the emotional anguish I put myself through in order to take a frank look at my life, more than the fallout from publicly declaring myself to be queer and writing about both the fucked up things I’ve done and those that have been done to me. I know queer kids of color need new stories, bolder, braver stories. Sharing stories allows us to give each other examples of how to live, to broaden our limited worldviews, and to care for each other across any distance.
Care is when we don’t act based on what we can get from another person, or how we can gain access or power. It’s when we sacrifice time, energy, and power for those who have nothing to give in return. Care is not transactional, but is a skillset internalized by so many women in this culture, one that many men have the privilege of avoiding. We each have to decide whether or not we will care for each other, and it has always been easier to knock back a few drinks and forget rather than caring enough to change things.
Since staffing the workshop, I’ve considered how care affects my life. I see how I’ve resisted caring about people, things, myself, my words. Institutions will always disappoint us, but who they disappoint, and how, is a matter of race, class, gender, power. The values that guide my life and the lives of the femmes around me are so fundamentally different than those of the people who run institutions and write checks.
If I believe that my own existence matters, I am even more confident that each of us has stories that matter. None of us is disposable, no matter how long or violently our voices have been silenced. It’s a principle I have to operate from as a nurse, and now operate from in every part of my life: Each human has inherent worth, even if they hold no power, even if they are not likable, pretty, or productive within capitalism.