On lupus, unruly bodies, and letting go

Staci Stutsman
May 7 · 34 min read

If you’ve read some of my pieces on here before, you’ve read bits and pieces of this. But, I ask you to stay with me and read this in full if you’re so inclined; it’s what all those pieces (and quite a bit of therapy) have been working toward; a cohesive look at how chronic illness put further pressure on my fraught relationship with body image and academia. And, a hopeful look ahead as I try to learn what it means to let go.

Fat bodies, thin bodies, and unruly women

Various fad diets peppered my childhood, a low-carb one making the most frequent appearance when I’d go through phases of feeling especially low about my body, especially invisible to boys, especially out of step with the other girls around me who could effortlessly slip into their low-rise jeans and bikinis. These diets never really stuck. But, they’d perpetuate a cycle of shame: shame for not being devoted enough to stick with it, shame for my clothes fitting more tightly, shame for wearing out that little space on the inner thighs of both pant legs.

I was only truly “successful” on a diet once I felt a shame deep enough to motivate me to want to never feel that way again. Near the end of my first year of college, in the thick of a relationship in which I relied on the opinion of my then-boyfriend to define my self worth, I embarked on a rigorous weight loss regime. I moved back home for the summer and I started doing this ridiculous workout regimen called P-90x — a three month guide to your dream body. I started dieting, but not that religiously. After about 60 days of P-90x, I was so over the extreme workouts. My body hurt. It was exhausting. But, I was committed to returning to school that fall as a transformed woman.

For the longest time (and still), I’ve felt very ashamed of old photos of myself (circa 2008).

So, I started doing Weight Watchers, determined to stick to the diet enough that I could see results but not put myself through the agony of the rigorous daily workouts. I started meticulously counting my points. I knew all the tricks and workarounds. Which packaged foods had the lowest points. What low-point foods could masquerade as tasty treats. How to supplement my Slimfast lunch with weight loss supplements to trick my body into feeling full. How often I could “indulge” in a banana, a comparatively high-point fruit. To this day, I can tell you the point value of most foods. There’s a saying that I’d repeat to myself often during that time, determined to stay on track: “Nothing tastes as good as skinny feels.”

I went back to school for my sophomore year of college feeling great about myself. I was thin. I was proud. I was a bit cocky. I remember telling a friend how amazing it was — how amazing it was to totally change your entire life in six months if you just worked hard enough. I’d probably have told you that my mantra was right — nothing DID taste as good as skinny felt. I’d have probably also told you that the shame had melted away along with the pounds, but that definitely wasn’t true. I just didn’t really know that then.

Let me tell you; losing all that weight that fast is exhilarating. It seemed like I was a completely different person overnight. Here I was, 20 years old, thin, very few responsibilities. All of a sudden, the college parties I’d been avoiding seemed like a great idea. All of the boys wanted to talk to me, buy me drinks, hear what I had to say. People were constantly holding the door for me. Even in school, I was more confident, speaking up more, getting noticed. Professionally, I began to thrive. After working on a research project in the library, I was offered a job. One of the student workers had noticed me working diligently and advocated that I get hired (or so his version of the story goes). Only later, did he insist he was owed a return on his investment.

I felt as if I had entered into a brand new world, and I was drunk with the power of it. With the compliments of it. I felt like a big fish in a small pond at my small Michigan college. I was on top of the world. I felt proud, accomplished. I had worked hard. I deserved these wins. And, now that I’d gotten a taste of life on the other side of being fat, I was damned if I was going to give it up. I started integrating more aggressive workouts back into my life. I ran every day, swam all summer to supplement the running, and went to the gym on my lunch breaks at work. I was able to keep the weight off for all of college, even dipping down an extra ten pounds with the stress of applying for grad school.

Now, I feel a different sort of shame looking back at old thin photos, shame for no longer looking this way (circa 2011).

In the fall of 2011, I was 22 and felt like I was on top of the world. I headed off to grad school, pursuing my PhD in English at Syracuse University in New York. I packed up my little car and drove myself East. I continued to reap the rewards of being thin. Graduate students in other departments wanted to talk to me, listen to my ideas, and encourage my projects. Slinked in a corner at local house parties, I was told my ideas were brilliant. On campus, I endeared myself to my professors. As a teaching assistant, my students loved me, the young, relatable 20-something. I thrived.

Despite the fact that I was overworking and undersleeping (as graduate students are inclined to do), I fixated on controlling my weight. Even though I was usually working 60+ hours a week, I always made sure to carve out time for a run. I also kept following WeightWatchers. While I wasn’t always actively counting points, I’d internalized many of its rules. I knew what to avoid. I knew how to swap choices. I knew which manufactured foods could give me the flavors without giving me the points. The internalized WeightWatchers logic created a hyper-vigilance of sorts. I was always keenly aware of the impact of a cheat meal. The point implications of a treat. The damage a “bad” food could do. I’d feel so much anxiety if I was heading out to a party or an event where I couldn’t control the food situation. I’d always “pre-eat” a smoothie before heading out to avoid temptation. I’d always make sure I had plenty of healthy options stuck in my backpack in case I fell prey to the free pizza offered at an event. I’d feel deep shame if I “slipped” and indulged too much. It was only much later that I realized this was not the way most people thought about food. Despite this vigilance, though, I wouldn’t say I was necessarily eating healthy foods. Rarely were actual vegetables in rotation in my diet. Rather, I was subsisting on 100 calorie pack snacks, Slimfasts, and pretzels.

This obsession with weight hummed along as constant background noise while I spent hours reading, watching, and writing, determined to make something of myself. My third year of graduate school, I took a seminar on film melodrama that focused on studio era melodramas of the 1930s and beyond. We watched and analyzed classic films such as Mildred Pierce (1945) and All That Heaven Allows (1955) and more contemporary films such as Brokeback Mountain (2005) and A Single Man (2009). But, what really caught my eye was Stella Dallas (1937), King Vidor’s adaptation of the 1925 silent film, starring the dazzling Barbara Stanwyck.

The film focuses around Stanwyck as the titular Stella. Stella is a poor girl from a working class family, with ambitions for a greater life. In an attempt to social climb, she learns to mimic upper-class mannerisms and refinement and, in doing so, catches the eye of Stephen Dallas, an executive who will be the key to her social ascension. Soon, they have a daughter together, Laurel. Stella falls deeply in love with Laurel and with being a mother. And, suddenly, her desire to mimic the upper-class behavior that allowed her to social climb becomes less important than it was before; she has a higher purpose now. Gone are her affected speech patterns, her quietly-refined outfits, and her desire to adhere to Stephen’s ideals of feminine grace. The film takes a melodramatic turn when it becomes clear that Stella’s class position is now holding Laurel back, preventing her from seamlessly integrating into the world of her father. This becomes painfully clear when Stella accompanies Laurel to an upper-class resort (think: private tennis lessons, cocktails on the lawn, and deals made on the golf course) and embarasses Laurel with her loud outfits, and even louder voice. Stella becomes aware of the degree to which she’s causing Laurel shame and eventually, in order to give Laurel access to the life she craves, Stella pushes her away and the two become estranged. The film concludes in a heartbreaking moment where Stella stands on the street in the rain, watching Laurel’s wedding from the street, seemingly exiled from the life she helped Laurel create.

All eyes are on Stella as she walks through the resort, garishly dressed.

The same week that we were watching this film in my graduate class, I was teaching a concept in my own class: the idea of the comedic unruly woman as outlined by Kathleen Rowe. Drawing on Mikhail Bahktin’s theory of carnival and the grotesque and Mary Russo’s work on the female grotesque, Rowe classifies the comedic unruly woman as a woman who disrupts and dominates middle- and upper-class spaces that expect her to adhere to patriarchal notions of passivity and complacency. Her body and voice are integral to her unruly potential. She laughs loudly, talks excessively, and consumes food and drink with fervor. Her body is often fat. It’s out of bounds and disruptive to social norms. It demands to be noticed. Comedy allows her to act in such a fashion, claims Rowe, because the genre accommodates and encourages excessive behavior. She points to figures such as Roseanne Barr and Miss Piggy to make her point.

Roseanne Barr, in all of her fat unruliness.

Rowe contrasts this comedic figure with the heroines in melodrama due to the latter’s passivity and virtuosity. If melodramatic women dare to be unruly, Rowe asserts, they are victimized, vilified, or both. Rowe points to melodramas such as Stella Dallas to prove her point. For Rowe, unruliness isn’t meant for melodramatic women. They are too weak, sad, and fragile to truly access the power of the unruliness that defined the woman comedian. They are victims.

But the unruliness that Rowe was describing — this ability to wrest control from those attempting to control you and to use your voice and body to dominate spaces that require your silence — it seemed present in so many of the melodramas I had been watching. Take Stella for instance; even when she traipsed through the fancy resort (a scene meant to undeniably highlight how pathetic she is), she seems to embody unruliness. She flounces through that space, head held high, disrupting a golf game, and with complete disregard for the aghast looks of the stiff shirts around her.

It was from there that the idea for my doctoral dissertation grew. I was so convinced that Stella, and so many of her melodramatic friends across film and television melodrama, exuded a very similar unruliness to Rowe’s leading ladies. Once I started looking, I saw it everywhere. In Olivia Pope in Scandal (2012–18), in Meredith Grey in Grey’s Anatomy (2005- ), in Alicia Florrick in The Good Wife (2009–16), in Buffy (1997–2003), in Revenge (2011–15), in Damages (2007–12). All dramas. There was just one catch: their bodies weren’t fat. These women were beautiful and thin. They didn’t look like Roseanne Barr and the rest of the women to whom Rowe pointed. So, the question for me became: where did I locate their unruliness? How did I find a way to articulate the unruliness that I was seeing?

It was here that I turned to performance. I won’t get into all the nitty gritty specifics here but, I’ll give the high level. As many are well aware: we all spend a good portion of our life performing. We know how we “should” act in specific spaces. We know how to code switch. We know how to play by the rules. Of course, a variety of factors always impact this process: race, gender, class position, ethnicity, religion, region, etc. The degree to which one is asked to perform to adhere to society norms varies based on any number of variables, and it’s easier for some bodies more so than others to play by the rules. I’m not saying it’s right that we have to play by these rules (in fact, a lot of energy has been put into disrupting the rules in the first place). But, playing by the rules is something that we’ve all been pretty indoctrinated to do.

It was thus my contention that Stella (and the other women of melodrama) were unruly, just like their comedic counterparts, they just embodied it in a slightly different way. They knew how to look the part, to adhere to society’s norms and, when the time was right, use their bodies and voices in very pointed, controlled ways to get what they want. They, of course, are not what they appear to be. They are not the weak, fragile melodramatic bodies that society (and so many years of film theory) would believe them to be.

But of course, my hunch that this is true only goes so far. Academia needs you to prove it. And, in an English department, that means providing a compelling close reading. I ended up arguing that actresses’ performances provided the key to deciphering the unruliness in their characters; their performances proved without a doubt that these women were so much more unruly than they might appear on the surface. Take Stella, for instance. The way that Stanwyck played Stella is what really brought her character’s unruliness to my attention. It was the way she performed Stella when she flounced through that resort that kept returning to me. The determination in her stride. The slight upturn of her lips. The flash in her eyes. This is what allowed me to read beyond the limitations of the script. As such, I went back and watched every film Stanwyck had been in up until 1937, including some early pre-Code films before the film censorship boards cracked down on what women could do on screen. In these early films, the unruliness of Stanwyck’s characters practically lept from the screen. It was undeniable. And, in film after film, Stanwyck used the exact same set of performance strategies to relay the fire simmering beneath her characters’ surfaces. She makes it incredibly clear that her characters are also performing; they are performing the rules by which society asks them to abide. But, it’s all an act. When Stanwyck plays the same sort of woman film after film, the ones who in one breath declare their undying subservience to their husband but, in the next, smirk and flash a brief glance at another woman on screen, you know there is more than meets the eyes. Stanwyck, and her characters, are putting on an act. They are ready, at the drop of a hat, to slap, scream, and kick until their true selves are heard. Stanwyck’s repeated strategies were thus the key to unearthing and articulating that unruliness. And lo behold, they show up again all throughout Stella Dallas. I was then able to use this set of performance strategies to make a very compelling argument for the degree to which Stella herself had orchestrated and controlled the entire scenario. She wasn’t weak and pathetic. Just as much as Miss Piggy or Roseanne Barr, she controlled the way her body and voice were read, and leveraged it to attain her desires. The rest of the dissertation is more nuanced than that, but you get the gist: the beautiful women of Hollywood are also unruly.

Barbara Stanwyck, thin and unruly, in Baby Face (1933).

It always struck me as ironic that I, a formerly fat girl, was determined to make a case for the unruliness of thin, beautiful women who played by the rules. My own subjectivity was always in the back of my mind as I watched film after film after film, looking for hints of unruliness in perfectly groomed, perfectly toned, and perfectly made up bodies. But, academia doesn’t seem to allow a lot of space for personal investigation in your writing. And, I’m sure I had a few too many repressed emotions around my own fatness to want to pry too deeply. It’s worth noting, though, the degree to which I, a huge supporter of unruly women, was so resistant to the idea that only large bodies had access to that unruliness. I’m sure this was motivated, in large part, by my own internalized fatphobia, and my hesitancy to let my body ever look like the bodies that Rowe was valorizing. It’s as if I was saying, while carefully counting my calories and pushing myself through run after run, that I was unruly too, and my complete embrace of the beauty status quo didn’t have to discredit that.

As I moved through the dissertation, I latched onto the notion of control. I was obsessed with the degree to which actresses’ performance revealed how their characters carefully controlled their mannerisms, and how they could slowly siphon off hints of unruliness to get what they wanted. I argued that taking control in this way — taking control of how your body is read — was its own type of unruliness. While I never explicitly wrote this, I see it now on every page: I had been conditioned to control my body, control my voice, control my intake of food, and control my appearance. But, I would be damned if I was to be labeled as a weak, fragile victim. No, by obsessively controlling my waistline and the way the world perceived me, I was in control. And there is power in that. I am not subservient to the system. I see now, though, that there was a significant truth I wasn’t facing: I might have been fighting for control, but I was still playing by the same rules that have kept so many women in check for years.

I still stand by the claims in my dissertation, and still think there needs to be a space in which to consider melodramatic unruliness, but in the years since I’ve defended that dissertation, my view has shifted slightly. There will always be a limit to your unruliness if you are perpetuating the very norms you’re trying to buck. But, in order for me to even start to accept that harsh truth, I’ve had to be forced to lose control. And, a big part of that has entailed letting go of internalized notions of beauty and thinness.

An unruly body, out of my control

So, I’d be remiss if I neglected to mention one other quite huge thing that was going on with my body while I was writing my dissertation: I got really sick.

But, first, let me orient you in time just a little bit. I went off to grad school in 2011, where I met my partner Joe who was also in the English PhD program. We spent the next three years in Syracuse in coursework together, at which point he elected to leave the program and go to design school in Pittsburgh. For my fourth year of the program, the 2014–2015 academic year, I drove back and forth between Syracuse and Pittsburgh quite a bit. I was out of coursework, which meant that I was getting ready for my qualifying exams and prospectus defense and had a much more flexible schedule. Essentially, I was doing all the prep work required before you’re allowed to officially start writing your dissertation, but that could be done anywhere. I defended my prospectus in May of that year and got the all-clear to start drafting my dissertation. At the same time, Joe secured a design internship in San Francisco and planned to relocate out west for the summer. Because my main task was to write all summer, I was able to follow him.

Joe, me, and two other interns settled into a sublease in Oakland for the summer and I hunkered down with three main goals for the summer: I’d draft my first chapter, I’d get in good shape, and I’d return to Syracuse in the fall incredibly tan, fit, and accomplished. While Joe and the other roommates made the trek into San Francisco to work their 9–5 jobs, I woke up in the morning, opened up my laptop, and began to write. After 3 hours of writing, at around 11 am or so, I’d lace up my shoes and head out for a run. At that point, I’d typically run 2 miles a day or so. But, Oakland was gorgeous. We were right next to Lake Merritt, a beautiful lake with a relatively flat manufactured 3 mile loop around it. So, I started doing a daily loop of the lake. And then, I’d go a little further each day. Bit by bit, my strength built and I was able to run a little further every day. By the end of the summer, I was to be able to loop the lake twice (6 miles), further than I’d ever run in my life. I’d go home, shower, and then bring my work out to the pool. I’d then spend the afternoon writing, tanning, and swimming laps. It was hot and sunny, but my body felt good and strong and resilient. Plus, it was nice to take a break from the endless hours of writing. If you’re not well acquainted with academia and the dissertation writing process in particular, you just need to know this; it’s brutal. You are signing on for a multiple-year process where your entire life is defined by your ability to produce this giant document and your success lies in the hands of a committee that will determine your fate. So, I welcome the reprieve my workouts granted.

Lake Merritt (circa 2015).

About halfway through the summer, I started having some joint pain. Every morning, I’d get out of bed, my feet would hit the floor, and I’d wince. The bones in my feet just ached, for seemingly no apparent reason. I’d hobble my way to the bathroom, take some Ibuprofen, and wait for it to kick in. My knees were also getting super sensitive, but my feet were definitely my main pain point. That was also the summer I got a FitBit and I was obsessed with tracking my steps and winning my step competitions. In addition to my daily runs, I’d walk all over the city, exploring the Bay Area and venturing into downtown to meet the interns for happy hour drinks and the like. One night, I was standing at a concert with Joe and my feet were in such excruciating pain that it felt like they were on fire. It’s odd, though, it never occurred to me that I should dial back on the running. That this might be doing more harm to my body than good. How could that be the case, when I was getting thinner and more toned?

A couple of weeks before I was set to fly back to Syracuse for the fall, I started to get a weird rash on my arms and chest. Large sections of red, raised skin appeared amidst my newly tanned arms. They didn’t itch. They didn’t hurt. But they were worrisome. I shrugged it off and figured I’d just see a doctor once I was back in New York. I kept running, kept downing the Ibuprofen, kept tanning, and kept writing.

By the time I was back in Syracuse, my cheeks had taken on a slight flush as well. My chin and neck were a little itchy. I made an appointment with the on-campus clinic. We brainstormed causes but couldn’t come to anything specific. Maybe my birth control? Maybe my lack of sun screen? She wasn’t sure. She prescribed an antifungal medication to be safe. As I was leaving, she asked if there was anything else bothering me. “Oh!” I exclaimed. “I’ve been meaning to get a referral to a specialist to help with joint pain. My knees and feet have been incredibly sore, and my family has a history of arthritis.” She set her clipboard down and looked straight at me. “Oh god,” she said simply, not instilling confidence. She quickly sprung to action; ordering a battery of tests and referring me to a rheumatologist. “I hate to break it to you,” she said, “but, unexplained rashes often mean something more dire when they’re linked with joint pain. Maybe Lyme’s disease. Maybe lupus. Hard to say, but we definitely want to get you looked at.”

Luckily, it only took me 2 weeks to get in with the specialist. She also ordered a slew of tests and sent me on my way, letting me know that results would be back in 3 weeks and we’d schedule a follow-up then. A week into the wait, I logged into my patient portal and saw that most of the results were in, and they all had red exclamation marks by them. I immediately called the doctor to see if I could come in sooner. They rushed me in that afternoon. After consulting my labs and examining my growing rashes, she said that I, without a doubt, had lupus (systemic lupus erythematosus to be exact). The primary signs of it were the “butterfly rash” on your cheeks, other unexplained skin abnormalities, and joint pain. But, a conclusive diagnosis can usually only occur if they’re able to identify anti-Double Stranded DNA antibodies in your body. I’m going to be honest with you: I still don’t quite understand what this antibody does, but apparently it indicates disease activity and is one of the more conclusive ways to diagnose lupus. I was honestly quite lucky in this regard; many people with autoimmune conditions, especially women, struggle for years to receive a diagnosis. They suffer through dismissive doctors and misdiagnoses and often experience high levels of depression and anxiety due to it. Start to finish, I had a diagnosis within a few weeks and was put on a medicine regimen. For that, I’ll be eternally grateful.

I actually don’t have very many photos of this time, not ones that really reflect what my body was going through (circa 2015).

In simplified terms, the deal was this: with lupus, my immune system is confused and begins to attack healthy cells and organs. In my case, it was attacking my skin and my joints. No one quite knows why people develop lupus but there are some hunches. Some people are predisposed to it (and my family history of arthritis, an autoimmune condition, didn’t work in my favor). Then, other stressors can activate your genetic anomaly. Often, pregnancy or puberty activates it. Or, high levels of stress and sun. Seeing as I wasn’t pregnant but I did spend the entire summer stressfully writing my dissertation, running, and swimming laps without sunscreen, it seemed like I fell into this latter camp. They put me on Plaquenil (hydroxychloroquine) to begin with, an antimalarial. Plaquenil tricks your body into thinking you have malaria. Often people take it when they are traveling to regions where malaria is present, as it allows their body to build up a resistance to the disease. In the case of lupus patients, the idea is that your immune system will be so busy fighting fake malaria that it won’t be able to attack itself. But, the catch is this: it’ll take 3 months to fully get into your system. So, they wrote me a prescription, sent me on my way, and told me to wait it out. They’d see me in December.

September passed. As did October, then November. Throughout those first few months, I pushed through the pain and kept running and writing, buoyed in large part by the small course of steroids I was on. I even ran a 7 mile leg of a marathon relay, ignoring my numb feet and swollen knees. I finally went in to see the doctor in December and I was steadily getting worse. My knees were stiff. It hurt to walk. My face was incredibly blotchy. I’d dab steroid cream dangerously close to my eyes to try to combat the unsightly rashes. Nightly, I’d wake up covered in sweat, but too weak to throw the blankets off of myself. I remember crying once, unable to muster the energy to take my sweater off.

It was right before Christmas break and I had a ton of plans (driving back to Michigan to see my family and flying out to see Joe in California, where he had now settled permanently). I was eager for my meds to kick in; I had places to go and people to see. The doctors told me to be patient. They took some bloodwork and sent me on my way, convinced that the meds would kick in any day now. Off I went on my winter vacation.

Turns out, this was a poor choice. A week or so in, I get a call from my doctor; there was protein in my urine, which means my kidneys are having an issue processing as normal. At that point, I was already in California and would be there for the next two weeks. They told me to stay put and they’d see me when I returned. I steadily declined over those next two weeks; I came down with bronchitis (thanks to my lowered immune system) and I’d get sweaty and feel like I was passing out if I ever stood up for too long. A couple of times while in California, I walked around that same lake I used to run around the summer before. The second time I did it, I almost passed out 2 miles from home because I was too light headed to stand. I also started losing my hair. Apparently, when your body is fighting to stay alive, it doesn’t have any energy to spare. So, it conserves by doing things such as stopping hair growth. Despite the fact that I couldn’t exercise regularly, I was losing weight like wild. My pants were hanging off of me. My collar bones were jutting out. My ass looked great. While I knew my body wasn’t healthy, I couldn’t help but feel the normal tinge of pride around this weight loss. But, this pride was foolish; I was weak. I couldn’t care for myself, or do any of the things I enjoyed, any of the things that made me feel powerful. I had spent so much of my life trying to control my body, to try to tame its fat unruliness, but here it was, at its skinniest, and it was defying me. It was completely out of my control, no longer following the rules I’d come to count on.

I remember taking a shower one day, handfuls of hair washing down the drain. I suddenly felt so weak, and with zero motivation to continue. Even though I knew how painful it would be to get back up, I sat down in the shower, pulling my knees up to my chin. For a long time, I just cried. I was so tired, in so much pain, and so deprived of joy. In that moment, I had to face a truth that had suddenly become clear to me: I wasn’t positive life was worth living if it felt like this.

Finally, my vacation time drew to a close and I flew back to Michigan, picked up my car, and drove the 10 hours back to Syracuse. After getting stuck in a massive snow storm, I made it back to New York, joints stiff from the time in the car. I saw the doctor the next day and she gasped, confirming that my condition was as bad as I felt. “You’re getting clinically worse,” she said, “clearly the medicine isn’t working.”

It’s amazing the sort of service you get when people are that afraid for your wellbeing, though. A mere hour after I left the doctor’s office, she had rushed my blood results and had booked an appointment with a specialist for the next day. Two days after that, I was in the hospital, getting a kidney biopsy. It turns out the lupus was raging and its reach was spreading. It now wasn’t only attacking my skin, it was attacking my scalp and, most dangerously, my kidneys. They were now not functioning properly due to the inflammation caused by the disease. The treatment for it can be quite harsh, so they need to biopsy your kidney to ensure you actually have it before they can authorize any action.

The night in the hospital went by in a blur; I was on loads of morphine, I was still in immense pain, and I was weak and continually on the verge of passing out. One thing stands out very clearly about that hospital stay, though: they weighed me. When you’re ill and bed-bound, they have to weigh you in a super fancy way. There is a scale associated with the hospital bed and they can zero it out and take your weight while you lay there. Despite how ill I was, I felt that familiar surge of pride when they read out my weight: 138.6. As someone who is 5’10, this is the thinnest I’ve ever been in my adult life. I knew I was sick, I know this wasn’t a realistic weight for me, but I felt proud, and hoped I could keep it off. It is indicative of my skewed relationship to health and weight that, despite what I was going through and everything I couldn’t remember from that day, this number stuck with me. It felt magical.

Shortly after the biopsy, we were able to start me on a new treatment. For three days in a row, they infused me with an immense amount of steroids. This was meant to jumpstart my immune system. From there, I’d stay on a high dose of steroids and add a few new pills to my daily regime. I ended up being on steroids for over a year after that as they slowly tapered me down. Immediately following this brief infusion, I started to improve. Steroids were coursing through me and I felt powerful and strong, like I could do whatever I wanted. I started running again, I made massive progress on my dissertation. I felt like I could fly.

For a while, my hair grew back in beautiful, unruly curls (circa 2016).

Over the course of that spring semester, a lot started to change. While I was getting better, and spending the majority of my time in doctor’s offices and pharmacists, my body was still contending with the impact of the disease. Bit by bit, I continued to lose all of my hair, to the point that I cut off what remained and began to wear a wig. For the next couple of months, I stayed very thin but, as my health started to improve, I began to gain the weight back.

I spent that spring trying to “get back to normal” (ie, make progress on my dissertation, get my health in order, get back to doing the things I used to always do) and pretending that nothing changed. I realize now, though, that everything changed for me during this period. I couldn’t quite conceive of it then, and it was only much later that the full impact of what happened really sunk in. But, by coming so close to the brink of death, only to have an aggressive treatment yank me from the ledge, my relationship to my body, what it could and couldn’t do, and the degree to which I could or couldn’t control it was slowly starting to morph.

Learning to let go

During that initial period of recovery, my world turned upside down. But, I was determined to maintain control. The way I understood it was this: My body was slowly killing itself and it was my fault that this happened, but I could control it going forward. It was my fault because I had succumbed to high levels of stress and anxiety and had gleefully exposed myself to high levels of sun that summer. But, it seemed, I could fix it going forward if they were successful in rebooting my immune system and I learned to follow the rules of the disease.

It was simple, they said. Overnight, change your life. Fill and keep track of all these costly prescriptions, don’t stress, sleep 8–12 hours a night, don’t eat certain foods, protect your body at all costs. Wash hands constantly. Avoid germs. Monitor. Log. Be social but avoid sunshine. Find a way to work from home but don’t overwork. Perhaps unsurprisingly, I was actually pretty good at it. I’m a woman; learning to control stuff is conditioned from a very young age. And, not that long ago, I had found great success with controlling my body.

So, I channelled that same energy I had previously devoted to meticulously tracking my WeightWatcher points and logging my exercise right into controlling my disease. This included a lot of research so that I could make the most informed decisions. Those first few months, I very carefully tracked my health, paying attention to every single new symptom, learning what it could mean. I kept a careful eye on my bloodwork, Googling any new changes.

While the amount of information I had to sift through in order to make sure I was making smart choices was daunting, it was manageable. It was also necessary to keep me alive. Per the advice of a self-help blog, I ordered up the official “how-to” guide for lupus. The book is designed for you to read it slowly over the course of the year as you adjust to your diagnosis. But, I was eager to know everything. To beat this. So, I read it all in one day. It was chock full of advice. When to avoid the sun, which foods to avoid, how to plan a living will, how to manage stress, how to plan a pregnancy, how to handle sleep disorders, how to sort out overlapping symptoms. How to accept that this might kill you, despite all your work.

As I was in the thick of making all of these changes, I got worse, especially as my kidneys started to fail. With the failing kidneys, came a big new diet change. Apparently, when your kidneys aren’t doing well, you need to avoid sodium. So, despite the fact that my energy levels were at an all time low while my pain levels were at an all-time high, I had to put a lot of energy into cooking for myself and learning how to sustain myself in new ways. I had cooked some prior to that, but not a ton. Once in a while, my partner and I might try out a fun recipe but, more or less, I was existing on a grad school diet: smoothies, freezer waffles, and diet freezer meals. Things technically low in WeightWatcher points. But, it turns out, most of my normal diet was more on the “processed food” side than not and, as such, had heavy salt content.

So, I started cooking. My cooking was pretty basic then. Mostly, I’d just saute some vegetables in extra virgin olive oil and toss with pasta or quinoa with cracked pepper. While they weren’t mind blowing meals, I experienced what it felt like to not be hyper-vigilant about calories and carb or fat content. I used to hesitate to use olive oil or butter, opting for low-calorie cooking spray or diet margarine instead. Now, I used oil with abandon. You might already know this but, if you were like me and had been avoiding this truth for most of your life: fat tastes great. It gives such a great flavor and texture to the food, especially to vegetables. Whereas I had only been eating vegetables once they were blended in a smoothie, I was now craving them, especially the umami flavor of mushrooms sauteed in oil on a cast iron skillet.

Nothing beats a delicious home-cooked meal.

But, I couldn’t live on sauteed vegetables and quinoa forever. I had to start experimenting. I learned how to make a low-sodium red curry vegetable dish. I learned how to make homemade pizza crust without the salt. I made homemade hummus. Lemon chicken and asparagus. Beef and broccoli stir fry. Risotto with low-sodium broth. I started seeking out salt-free spices at high-end grocery stores and learned how far good seasoning could go. I learned to nourish myself as I healed.

By the end of that school year, I neared the end of my graduate school funding and left Syracuse, moving to California to live with Joe. For the first year in California, my main job was to finish up my dissertation so I could officially graduate, and continue to heal. As such, this cooking experimentation also coincided with a time in my life where I had to stop working around the clock. Whereas academia awards 60+ hour work weeks, my body and brain had far fewer good hours in them than that. But, as a chronic over-worker, I had difficulty figuring out how to give my body the rest time it needed. I didn’t know what to do with myself. But, suddenly, I had something to do to fill that time and a space to direct my mental energy. I’d write in the mornings, and then I’d spend the afternoons and evenings reading, cooking, and exploring my new permanent West Coast surroundings.

Settled in California as my hair begins to grow back out (circa 2016).

When my flare began to subside and my kidneys began to heal, I was able to start eating salt again. I now had the option to go back to my old dietary habits if I wanted to. And, I kept trying to. I’d stock up on my old basics. I’d vaguely start tracking points again, especially once I started gaining the weight back. But, I’d also found this new joy in food and in cooking that I didn’t want to give that up. It was immensely satisfying to seek out recipes, to intuitively understand how ingredients worked together in order to not even look at recipes. To create. To spend evening time doing something other than work. To nourish myself, my friends, and my family. And, unlike when I was eating mostly processed foods, I was now cooking and creating with produce and lean meats and experimenting with food of different cultures. My world was opening up. Suddenly, I didn’t feel the same anxiety and guilt when we were going out to eat. It was immensely freeing to not control everything that went into my body. So much of my energy still needed to go into maintaining my disease. There was none left over to count calories.

Also, now that I was surrounded by the beautiful Bay Area, my relationship to exercise began to change. Even though I kept trying to integrate running back into my routine as I healed, I’d always end up with a throbbing hip, sore feet, and aching knees. I had to come to accept that being a runner wasn’t in the cards for me anymore. But, if I took a moment to look around, there were beautiful, rolling hills, bay views for days, and an entire world around me. And, my body might not be able to run, but it was here. It was alive. It had survived.

Within a year, I finished up my dissertation, my hair slowly grew back, we got married, and I gained weight. Despite all these changes happening internally and externally, I never wavered from the thesis I had settled on. I was determined to prove the unruly power of carefully manufactured, carefully controlled, carefully monitored bodies. While I never wavered from this argument, I suddenly found myself questioning a lot of things beyond the page, in the real world. Specifically, I began to question the ways I had been living my life before: working around the clock, carefully monitoring my food intake, exercising constantly. One of the first big changes I made was to leave academia, to not pursue a tenure track job. Instead, I found a job in education administration that allowed me to work a flexible 9–5 job and still have time on the evenings and weekends to rest and heal. Quickly, my passion for research just faded away. I had no desire to publish a single word of that dissertation. I had survived (both the initial lupus flare and grad school), and I was determined to spend my energy actually living now.

My new job also allowed us to eventually move out of the Bay Area. Though Oakland was lovely, it was very sunny, which worsened my lupus symptoms. For the last few years, then, we’ve been living in Portland, Oregon, a beautiful and wonderful city with just enough sun to sustain me but plenty of cloudiness to keep me safe. It’s green, lush, and beautiful and miles of trails are just blocks from my doorstep.

Portland, so lush (circa 2019).

It’s been about five years since my kidneys returned back to normal. In that time, I’ve continued to struggle with my relationship to both food and exercise. This has been especially hard as I’ve continued, bit by bit, to gain weight back. While this has been difficult, I’ve also gained exposure to an entirely new world. A world where I don’t have to be fueled by my constant need to control my body. A world in which I’ve unlocked this new pleasure of going on daily hikes and walks — of being in nature and enjoying the act of exercise, rather than dreading it like I used to dread the P-90x workouts. I’ve also continued to experiment with food and the pleasure it brings. The same pricks of shame are there, though. Almost weekly, I feel the pull of slipping back into old habits, of turning back to Slimfasts, diet pills, low-cal substitutes. But, I can’t quite seem to resist the even larger pull of the pleasure of a hearty, vegetable-forward meal prepared, cooked in a bit of fat or with a splash of cream. The pleasure of cooking while music plays, wine in hand. The pleasure of providing for my family and having loved ones enjoy my food. The creative pleasure of seeking out a recipe and trying something new.

In the last year, I’ve begun to feel more convinced that cooking and good food are fundamental to my version of a life well-lived, even if that good life means I’ve had to give up the “ideal” body to which I was always striving. In part, I credit this new conviction to Ella Risbridger. A year or so ago, I was gifted Ella’s cookbook Midnight Chicken: & Other Recipes Worth Living For. I’ve actually only made a handful of recipes from the book itself, but when I first read her introduction, my throat caught slightly. It was only then that I fully realized how meaningful cooking had been to me five years ago, when my body was literally trying to kill itself. When my will and ability to provide for myself was almost nonexistent. Because no summary of that introduction would be sufficient, an excerpt is included below:

There are lots of ways to start a story, but this one begins with a chicken. It was the first story I ever wrote about food, and it begins with a chicken in a cloth bag hanging on the back of a kitchen chair. It was dark outside, and I was lying on the hall floor, looking at the chicken through the door, and looking at the rust in the door hinges, and wondering if I was ever going to get up.

Perhaps, I thought, lying on the hall floor, I will just stay on the hall floor forever, and sink through the laminate, and into the concrete, and down into the earth.

But this is a hopeful story. It’s the story of how I got up off the floor.

It’s also the story of how to roast a chicken, and how to eat it. This is a story of eating things, which is, if you think about it, the story of being alive. More importantly, this is a story of wanting to be alive.

Whenever I think about what constitutes a life well-lived, my mind always drifts back to this story. To the importance of getting up off the floor, of wanting to be alive, and to nourishing your body. And the importance of not feeling guilt or shame for doing that. I’ve actually never made her roast chicken recipe, but I have made her “Martial Harmony Sausage Pasta,” a slowly-simmered weekend recipe best made on a leisurely Sunday afternoon, drink in hand. I had legitimately never realized food could be that good before, or that I had the ability to make it. I’ve only made her sausage pasta a few times, though. I save it for special occasions, and occasions where I want to be reminded how good life is, and how good it feels to make things. The last time I made it, Joe sat in the kitchen with me. We were each sipping a glass of red wine, the remnants of the bottle used for the recipe. He was reading a novel aloud to me while I slowly stirred the sauce. Our single-pane windows grew steamy and we grew tipsy, waiting for the food to be done. When it was finished, we ate it heartily, washing it down with our wine. I felt full and happy and proud of what I had made.While I still felt a pang of guilt for eating that rather indulgent meal, the same pang of guilt I get when I eat most indulgent meals, I try to remind myself of the goodness of that moment, the goodness of a life well-lived, and the goodness of being alive to enjoy it.

While I’ve spent a good portion of my life clinging to the power that comes from meticulously controlling your life and your body (and an entire dissertation making a case for that power), it’s only recently that I’ve fully leaned into the pleasure and the power that can come from letting go. Though I spent years very carefully arguing for the unruly power within thin, meticulously-groomed bodies, it was only when control was completely stripped from me that I began to see the power, the strength, and the pleasure that awaited me on the other side of letting go. And, despite my old mantra, it seems that this life does indeed taste better than skinny feels.

Sweaty, in one of my favorite places above the city (circa 2020).

Age of Awareness

Medium’s largest publication dedicated to education reform | Listen to our podcast at aoapodcast.com

Staci Stutsman

Written by

PhD in English with a focus on film/television. Thoughts on lupus/chronic illness, body image, & academic/post-academic life.

Age of Awareness

Stories providing creative, innovative, and sustainable changes to the ways we learn | Tune in at aoapodcast.com | Connecting 500k+ monthly readers with 1,200+ authors

Staci Stutsman

Written by

PhD in English with a focus on film/television. Thoughts on lupus/chronic illness, body image, & academic/post-academic life.

Age of Awareness

Stories providing creative, innovative, and sustainable changes to the ways we learn | Tune in at aoapodcast.com | Connecting 500k+ monthly readers with 1,200+ authors

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