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Embracing Disability

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Content warnings: mental illness, eating disorders, feeding tubes

I’m finally an active member of the workforce again!

Translation: I’ve swiftly gone from being a freelance writer smoking on my patio all day to bussing tables at a local saloon in downtown Napa three days a week.

It’s not the most exciting so far, but I’m looking forward to having a steady income again. 

After being laid off from my startup job in April, I’d been struggling to land another job that could accommodate my illness, my boyfriend’s illness and eventually, school.

Definitely a tall order, I recognize. 

Accommodating my disabled body and its unpredictability is a full-time job in itself, let alone having to find another job on the side that would put up with its truancy.

Luckily, everyone in Napa knows everyone and I was able to land the job quicker than expected because my boyfriend’s brother had been working there for the past four years.  

On my first day of training, I was shy but excited; I hadn’t been to work in person — let alone in food service — since I worked at Starbucks during my first two years of college. 

To get me acquainted with the most popular menu items, I was repeatedly offered samples of the food.

Reuben croquettes, cheese curds and sticky chicken strips, among other mouthwatering appetizers, were described to me in exquisite detail by the cooks before I was (politely) urged to taste the most sought-after dishes. 

I stood there awkwardly, shaking my head in the most respectful, sincere way possible: I’m sorry, I can’t eat

It’s not that I can’t eat anything; it’s just that it would be way faster to list what I can eat than what I can’t. 

Short bowel syndrome, or SBS, low intestinal motility, malabsorption, about 10 abdominal surgeries — it’s all a recipe for a ticking-time bomb of a digestive system, and I’ve grown accustomed to erring on the side of caution when it comes to my diet. 

I eat so blandly, so plainly, so infrequently, that I often forget that other people eat “real food.” 

Every time I go out to eat in social situations — which is more often lately, with restrictions lifting — I am openly gawked at for my dietary choices: no gluten, no dairy, nothing spicy, nothing with skin, no veggies; it goes on and on.

Have you ever seen the film “When Harry Met Sally”? That. 

But worse, somehow.

I once ate Cheerios with chocolate syrup in place of dessert at a family gathering while everyone else chose from about five different flavors of ice cream. 

I’m sure it’ll be no surprise when I tell you that I have had a complicated relationship with food for as long as I can remember. 

Growing up with SBS, I was tube-fed until I was 5 years old via a surgical gastrostomy tube in my stomach. My parents would hook up the bolus nightly, a bag of “feed” to supplement my already rigorous, highly caloric “oral feeding” schedule.

I still remember the sensation of the viscous liquid traveling through the tubing toward the little trapdoor peg opening of my tube. 

You don’t forget something like that. 

My entire childhood revolved around food: how much of it I was eating, when I had to be eating it and especially how many calories it contained. 

The Hot Pockets, the frosted Circus Animal Cookies and the Happy Meal chicken nuggets all still make me shudder. 

I was perpetually “the skinny kid” — due to literal malnutrition — until puberty when my body decided to finally gain some healthy weight.

Unfortunately, I promptly lost it again following a brutal intestinal virus I caught within the first month of eighth grade. 

Upon my return to school, I was suddenly the subject of unwarranted attention from my classmates, the boys staring and the girls asking how I had lost all that weight. 

You look so good! How did you do it? I wish I were that tiny! 

You can probably guess what happened next: I was diagnosed with anorexia nervosa the following summer, during my first-ever therapy session. 

Entering high school, my mental health only got worse and I was subsequently diagnosed with — and prescribed medication for — clinical depression and anxiety.

These new diagnoses seemed to overshadow my eating disorder, and my treatment abruptly shifted focus toward my depression and suicidal ideation. 

I never received “treatment” for my eating disorder. 

When I became a high school athlete my sophomore year, I put all of my energy into being in the best shape possible, putting more pressure on myself than my teammates did. I worked out for hours every day, carb-loaded and even went on hormonal birth control.

In my junior year, following my colostomy revision surgery, my weight plummeted to the most dangerously low level it had reached in years. Having lost about 30 pounds I couldn’t afford to lose, I could barely get healthy in time for softball season.

In college, I gained the “Freshman 15” — plus a lot extra. In the span of about 2 ½ years, I went from dangerously underweight to my all-time heaviest.

In 2020, I embarked on a cliche “fitness journey.” Except I actually did it. 

Exercising daily, taking care of my body, intermittent fasting and eating intuitively, I lost 60 pounds in about 6 months.

A year out from my transformation — a year out from starting at UC Berkeley and moving in with my boyfriend — I wish I could tell you that I am still trying to be this fit person who takes care of my body.

I wish I could tell you whether or not that was a persona, a lifestyle I was trying on for size amid a global pandemic or if it’s someone I will work to embody again. 

Instead, I’m curled up on my couch with the fluffiest blanket I could find at Target, running fluids through my port because my life is glamorous and I’ve been throwing up all week. 

Regrettably, my weight is now the lowest it has been since my anorexia diagnosis.  

The reality is, I’m in my 20s and I’m irresponsible. I’m still figuring out who I’m supposed to be and when all of this pain is going to be worth it.

In the meantime, I’m lucky to be making minimum wage at a restaurant in a tourist city.

Chloe Moody writes the Monday column on being a college student with a disability. Contact the opinion desk at [email protected] or follow us on Twitter @dailycalopinion.