THIS HAPPENED is an ongoing series where readers share firsthand experiences living with an ostomy.
In five days, I will be 30. I will be 30 in five days. I am still rolling this thought around in my head steadily, and have been for the past six months or so. The countdown gets smaller, and I feel funny about it, then happy about it, then melancholy, then reflective. It’s been a hell of a decade for me, and for the body I’ve called home for 30 years. In indulgent moments, I sometimes remember through tears the feeling of rubbing my belly without the tactical interruption of my ostomy bag, or sleeping on my stomach without the fear of the sh*t-explosion that has and could come if I dream the wrong dream and lean into my body-weight incorrectly. I try not to think for too long about how I will have lived less of my life with the body my parents gave me than with this medically re-engineered version, better equipped to literally and figuratively digest this life. Some days I long for the time when I wasn’t manually emptying the seemingly endless supply of every day’s sh*t — the bliss of letting my body naturally handle the breakdown of everything I consume. I just miss her, that body I used to have. She was young and went to college, sometimes interrupted by her Crohn’s disease. She sang in a band for a precious time and made mistakes. But I’m growing to feel thankful for the unique messiness of my life, and the vulnerability and authenticity that comes from grappling with my ostomy and my Crohn’s disease.
People say a funny thing happens in your 30s — you just give less of a damn. I had always heard that cliché in movies and TV shows and in vague lectures from my big sister about growing up, but in truth, I never really grasped the value in that acceptance, and how hard it can be for everyone, not just the chronically ill, nor the disabled, to get there. One of the most significant memories in my ostomy, coming-of-age stories happened nearly three years ago in a Broadway theatre at a time, I admit, I felt sort of invincible. After surgery, I decided to move on from a destructive relationship that had run its course through my rocky illness. I had just landed a new job where I trusted I would be healthy enough to excel, and had the foresight to book a somewhat celebratory trip to New York with my mom. On our first night in the city, I convinced my mom to buy us tickets to see the evening performance of Les Miserables, which has always been my favorite musical. Something about the robust, 80s romanticism throwing off authoritarianism makes me cry.
When we got to the theatre that night, we were ushered to our seats, only a few rows from the stage. I remember lightly embracing my mom, feeling warm from the wine I had ordered in a souvenir cup in the lobby and I felt like I had maybe reached a turning point in all the pain I had endured throughout my 20s, and thanked her for providing this experience for me. For us.
My pleasant buzz carried me through the first act, and when the lights came up on the theatre, I rushed upstairs to the women’s restroom to pee and empty my newly placed ostomy bag that requires more trips to the restroom than I wish it did. Women in line around me chatted loudly about the show, about differences between the stage show and the 2012 movie and I felt glowy and hazy (drunk) and excited about life for the first time in a while. If Jean Valjean could reinvent a new life for himself, so could I! Hurrying through the line in order to get back to my seat on time, I rushed into the stall when it was my turn, lifted my dress and quickly pulled down my underwear to pee. As I pulled down on my specialty ostomy underwear, the fabric flap that comes sewn into the underwear to protect an ostomate’s skin caught the edge of the bag, in a flash second of pure horror, my bag flew off my body and splashed (truly, splashed) onto the floor.
I can still remember the instant rush of adrenaline envelop my brain, the feeling of my stomach dropping. I stopped breathing and my body shook as I tried to assess the damage, but there was no avoiding or concealing the fact that my shoes, my bag, and my white dress were covered in my own sh*t. Sobering up unimaginably fast, I realized that, in my joyous high from the show, I had left my phone and my ostomy supply bag (which I otherwise faithfully took everywhere) with my mom back in our seats. The reality of now navigating past an entire theatre of Broadway attendees set in — no easy way to get back to my mom, no way to reach out for her help, comfort or friendship. The ease of the whole evening up to that very moment vanished. I was trapped in the bathroom stall, experiencing the most intense panic attack of my life.
In the minutes that passed, that very human thing happened, where moments of the past 10 years flashed before my eyes. I thought about easily using the restroom before ostomy surgery and how I had taken every single, simple restroom trip for granted, and then I saw glimpses of my future, being an old woman trying to navigate the proper maintenance of my ostomy bag with arthritic hands or a decaying mind. All the while wondering how the f**k I was going to get these stains out of the new dress I had bought specifically for this damn trip. Those minutes in that stall, in a Broadway theatre, changed me forever and forced me to come to terms with my fears about my present and future as a woman with a disability. Sometimes my mind gets stuck in that memory, of the effort it took to physically get myself out of that bathroom stall, of the fear of facing the theatre ushers that I would surely have to lock eyes with, of being covered in sh*t stains. There are still days I fear I cannot mentally and emotionally get myself out of the stall. But somehow, I did that night, and I still do.
Somehow, the lock on the door shifted open, and I can remember finally washing my hands quickly, and hearing ‘A Little Fall of Rain’ over the restroom speakers, which is my favorite love song in the show. Knowing the original cast recording as well as I do, I knew I had been frozen in the stall for ten minutes, and we were well into the second act. I was still shaking as I approached our row near the front of the stage. My mom’s head turned around quickly, obviously searching for me, suspecting something new had gone wrong with her youngest.
“Mom, I had an accident,” I whispered.
She hurried to search for something to clean me off within her purse, when two baby wipes appeared over our shoulders from my Crohn’s disease fairy godmother, who must have been able to either smell me or had heard my cries in the bathroom. She looked sweet and worried and I still think a lot about that tiny act of kindness years later. Those baby wipes were as precious to me at that moment as the candlesticks given to Jean Valjean were to him, and I’ll never forget how her care that night served as an allegory for all the kind actions of family and friends and strangers at my most vulnerable and frightening moments, and how you really can’t do it alone.
We decided to stay in our seats for the last 20 minutes of the show because I was scared that getting up would draw attention to me. We clapped and cried as Jean Valjean joined the martyred chorus in the “Do You Hear the People Sing?” finale, the song that includes my favorite lyrics and a verse that I had tattooed on my ribs a year prior during the thick of my pre-surgical illness.
“Do you want to take the subway back to Brooklyn or do you want to get a cab?”
“Can we take a cab?”
When we got back to our hotel room, my mom immediately started to stain-treat my dress with hotel room soap. I changed my ostomy system to a clean wafer and pouch, stared at my healing, naked body and held my palm to the tattoo on my ribs, “Even the darkest night will end and the sun will rise.” I took a shower, a Dramamine, got into bed next to my mother after she had tried her best with my dress and closed my eyes.
This Saturday, the last night of my 20s, I’ll be celebrating with friends, my sister and the boyfriend I met just a short while after that night in New York. He has unwaveringly loved and supported me, ever since on our first date, when after two hours of lovely and lively conversation, he took it in complete stride when told him that I was just two months post-op from a full colectomy.
I’ll be toasting to each of the versions of my body that I’ve inhabited in my 20s, formerly whole, presently surgically modified, sometimes pristine, sometimes sh*t-stained in a Broadway bathroom. I’ll be toasting who I am today and who I might be tomorrow — come what may.
This post originally appeared on Harness.com.