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Sometimes I feel like I was born broken.
That somehow all my parts didn’t come together just right. Or even worse, that I was born right but did something wrong to deserve the suffering I’ve been through.
When I was little, every time I had a flare I thought I was being punished for something I did wrong. Writhing in pain, I would scream, “I’m sorry,” over and over into the marble of my bathroom floor, holding my grossly distended belly.
I’d search frantically through my memories trying to see what I did wrong to deserve this. Often it was something as benign as taking an extra helping of food without asking, or not thanking my mom for something. I’d flagellate myself mentally for any wrongdoing I may have done, and my body punished me physically, tearing me apart from sternum to rectum.
At the age of eight, I read about the great dictator Vlad Tempes, known colloquially as Dracula, a man who used to flay people by thrusting a spike up their rectums that exited through the mouth; this visual often came floating to the forefront of my mind as I would sit in the bathroom. The pain was akin to that. Yes, Crohn’s and Colonic Inertia is that excruciating.
For those unfamiliar with chronic and invisible illnesses and disabilities, Crohn’s and Colonic Inertia are severe and debilitating gastrointestinal diseases.
Crohn’s, a Th1 autoimmune disease (autoimmune is where the body attacks itself), comes in many forms and can affect the small and/or large intestine. It is the inflamed relative of colonic inertia, its constipated cousin whose main function is its lack of function (i.e. constipation). They both can be disabling—and potentially fatal—if left untreated. And you can have both at the same time.
Living Two Lives
At one point as a teenaged model, it was so disabling that I would go days at a time without sleeping or eating. My longest record without going to the bathroom was about 80 days. That’s almost three months. Before I had a formal diagnosis, I kept going to hospitals, begging for help, but no one knew what to do. That, along with a couple other secondary health issues, made my life unimaginably torturous.
Doctors wouldn’t operate on me since they didn’t have a formal diagnosis, so they kept sending me home to see specialists who then, in turn, would send me to more specialists in hopes someone could figure out what was going on. I was terrified. Yet, I modeled throughout because I lived alone in NYC and couldn’t afford to stop modeling.
During lunch breaks on set, I would cry in the bathroom because of the pain. No one knew I was sick, not even some of my closest friends. I prayed someone, anyone really, would help me. I was at the end of my rope. Finally, I found a doctor who was up for the challenge.
The Reality of Living with Chronic Illness
Dr. Daniel Popowich, a colon-rectal surgeon at Mount Sinai in NYC, quite literally saved my life. He was also the only doctor who would touch my case. Due to the nature of my job, I couldn’t have an ostomy bag (a bag outside the body) so we kept doing smaller procedures until a less invasive surgery became a viable option.
Finally, in June of last year, we went ahead with the choice to have a laparoscopic colectomy, meaning my entire colon would be removed via a small one-inch incision under my bikini line.
After 145 hospitalizations and countless procedures in under 10 years, I had had enough. I told my doctor, “Take it out, take out my whole colon.” It took four days in the hospital and six months to be almost fully recovered. And that colectomy was the best decision of my life. My doctor gave me the chance of a more normal existence, a life without unimaginable suffering.
Life After Surgery
Even now as an adult, I sometimes wonder what I did wrong to have deserved such a painful existence. But, at the end of it, there is no causality. It’s just shit luck. Pun intended.
Hopefully, through my modeling, perseverance, and pain, some positivity will come of it. My mission is to be a health advocate, and to use my social media platforms to raise awareness about chronic diseases and disabilities such as Lupus, Multiple Sclerosis, Ulcerative Colitis, and Crohn’s Disease.
No little girl should grow up into a woman that somehow feels like she deserves to suffer, and more profoundly, to suffer in silence. So here I am, flaws and all, standing vulnerably in the light raising awareness. Who will stand with me?