Interabled, but mutual caretakers

Embracing Disability

“I think you’re supposed to have something covering that.” 

I was suddenly overcome with the extreme desire to punch this 25-year-old surgical resident in the face.

He had taken one look at my retracted stoma, visibly tried not to wince and promptly made it clear that he had very little, if any, experience with ostomies. 

I hadn’t had an ostomy bag covering my stoma because it had decided to almost completely retract into my abdomen while I was in my psychology lecture earlier that evening. It quickly became apparent that my stoma was literally not working, which meant that my intestine might be “kinked.” 

So there my mother and I were, in the emergency room, approaching hour three of waiting for answers. 

I had called my boyfriend on the way to the ER, urging him not to leave work to come to my rescue, while I basically told him that my intestine had gone back inside of my body.

He was, understandably, extremely worried, so we compromised that he would drive straight to the hospital the minute he clocked out. 

To make a long and highly traumatic story short, I had abdominal X-rays done that involved putting contrast directly into my stoma via a catheter. 

My boyfriend happened to arrive at the exact moment my stoma decided to imitate Mount Vesuvius. 

Needless to say, my boyfriend and I have been through more than the average couple our age has in our nearly four years together. 

He was there when I was having my proctectomy surgery — when my asshole was closed up — sleeping in my twin bed the night before surgery and lying down with me in the operating room waiting room before I was whisked away.

He stayed at my parents’ house in Richmond so that he could come to visit me every single day at Children’s Hospital Oakland, even staying longer than he’d expected to when my progress slowed. He washed my mother’s car and filled it with gas because that’s just the kind of person he is.

He embodies a kind of unconditional love and support that I never knew I could expect from a partner, and I absolutely love that about him. 

This unique bond we share brought me — not three years after the incident dubbed “poop volcano” — back into the emergency room, this time on the other side of the gurney. While my boyfriend is otherwise physically healthy, he has suffered from severe mental illness his entire life.

I had to yell at a nurse who tried to force my boyfriend, who has a severe phobia of needles, into getting blood drawn. Repeatedly, I had to demand someone who could actually help him while we waited for more than six hours. I had never in my life had to witness someone I love suffer so much and feel that there was nothing I could do to help.

I had to be the advocate for him that I was forced to be for myself from a very young age. 

All at once, I had a deep empathy for my parents, which led to an overwhelming desire to call my dad at 3 a.m. after my boyfriend was 51/50’d. We talked about the powerless feeling of watching someone you love suffer, and as I sobbed to my father after nearly giving him a heart attack, I finally understood how he may have felt raising a disabled child.

I really dislike the term “caregiver” in the context of a romantic relationship or family dynamic because it implies that there’s a dependency that is not mutually reciprocated. 

For almost three years, I worked for a startup in the ostomy health care industry, where a part of my job was to create “Own Voices” content as a patient and ostomate. My boyfriend was routinely framed as a “caregiver,” as was my sister, in a video the two of us did about having a chronically ill sibling. This definitely bothered me a bit because that is absolutely not the case in either situation: My sister and I are best friends, and my boyfriend and I are equally in support of one another; we are married in every way but legally. 

As I write this column, preparing to leave for a weeklong trip to Southern California to visit my grandfather in Newport Beach, the question of whether or not it’s safe to leave my boyfriend at home hangs over my shoulder. 

Guilt gnaws at me with the thought of asking him to stay at his parents’ house as if I were passing him onto his mother to “deal with.” As if I’m kenneling him like a dog. It makes me feel sick, allowing myself to take a break from a shared burden from which he does not have the luxury to escape. 

The day before my trip, I’m on the phone with my sister, asking her, “Isn’t it hilarious? We’re on the same dose of Prozac, but I’m objectively in charge of him because I have an associate degree in behavioral sciences.”

As I bargained with her about whether or not my guilt is warranted, my dear little sister reminded me that we’re all escaping something.

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.