By Tiffany Ran
Northwest Asian Weekly
Saleem Juma walks into the disability office on campus and hands the girl at the counter a set of forms.
“Hey, I’m here to turn in my paperwork,” he said.
“Turning in paperwork to be a transcriber or a note taker for disabled students?” she asked, looking at Juma, an Indian Muslim American standing upright before her. He is noticeably fit with deep brown eyes, and he’s attractive.
Familiar even, if she had happened to come across this 23-year-old Bellevue College student on an ad for Columbia Sportswear or caught a glimpse of him on a specific episode of “Expedition Unknown” on the Travel Channel.
“No no, I’m turning in papers for accommodations,” he replied.
It used to be that Juma could speak to his professors directly, but this quarter, they’ve been stricter and disability requests would have to go through the official office.
“I don’t look disabled, so you would never expect it. When I walk into the disability office, I get the weirdest looks,” said Juma.
To explain, he would only need to lift his shirt to show an ostomy bag fastened to his abdomen. Juma shows his ostomy bag front and center in a shirtless selfie he includes as a profile photo on a dating website. With dating, he’s learned, it’s best to put it out there.
A less visible disability
“Disabilities are not always visible. I’ve been in the bathroom coming out of the handicap stall and have people look at me and say, ‘What’s wrong with you?’” said Juma.
He was diagnosed with ulcerative colitis at 16, and tried every medication available, but nothing prevented the pain and discomfort of having to run to the restroom up to 25 times a day. On top of this, Juma was also diagnosed with volvulus, a painful condition where the intestines twists around itself. At 19, Juma had a total proctocolectomy, the removal of his large intestines, rectum, and anus, and since then wears an ostomy bag connected through an opening in his abdomen for collecting bodily waste.
“It was extremely hard for me to understand that the bag would be permanent and I would have to wear it for the rest of my life. I had been modeling since I was 18 and I didn’t know how I would do that with a bag. I didn’t know how I would play sports again, or if girls would look at me the same,” said Juma about his feelings after his initial surgery, after which he was also diagnosed with social anxiety and depression.
“It’s hard because you feel like it’s a blow to your masculinity, but at the same time, it’s not. You’re not less of a man because you have depression or anxiety or because you have an ostomy bag. You’re not less of a person. You have to remember that. I spent years thinking that I was,” he said.
These days, he wakes up early, at about 5 a.m. or 5:30 a.m. to squeeze in a quick workout before he heads to school, where Juma has a full load of classes and evening labs. During breaks between classes, he works on his many side projects, including a combat style TV show called “Single Combat” that he’s co-producing and marketing, and attending modeling gigs. He leads an incredibly busy life of an average millennial, he notes, but with each facet of his life colored with unseen challenges.
In the few hours he has to sleep each night, he wakes up multiple times to empty his ostomy bag. Every morning, he checks to see if there are issues with the pouching system on his bag before his day starts, so he won’t have to come back home to deal with leakage. During his workout, he wears a special belt to hold the bag in place and wears looser clothing to afford the bag some space. Juma drinks three times more water than most. Without his large intestines to absorb water, he dehydrates easily. He was originally slated to be a combatant in the TV show he is working on, but did not get medical clearance to do the show. Instead, he took up the job of scheduling, marketing, and co-producing the show. With modeling, he pays close attention to the waterproof sealants, especially on fitness shoots where he’ll sweat.
With dating, he mentions that most girls will come up with a more tactful excuse than the one that was texted to him this past February:
“…if you don’t have intestines, I’m not really interested, that would mean you have a colostomy bag and I could not find that attractive,” she said.
The fact that there could always be another surgery or ER visit around the corner is never far from Juma’s mind. It was after a modeling gig for Siemens Medical three months ago when he felt what he described as the worst pain of his life. Instead of meeting his family for dinner, he went straight to the ER. Had he arrived even an hour later, his doctor informed him, they would have had to remove another three feet of his small intestines. As it is, they removed nine centimeters.
For Juma, everything from his busy schedule, to his water intake, to his regular trips to the bathroom, his mental well-being and physical fitness are all part of a balancing act that could tip the scales one way or the other. He stopped taking antidepressants prescribed last year, because it caused weight gain. If the abdomen gets too round, he explains, the ostomy bags won’t stick properly.
“It was a mistake. I held onto myself because I knew, with the illusions and rollercoaster ride of emotions, what was happening. I knew that they were real. I had to keep on repeating that to myself and it kind of helped keep me together,” said Juma, who emphasized that he strongly advises against anyone doing the same.
“There’s such a taboo against mental illness in this country. My mom told me, ‘Don’t tell people you have those things because they’ll start looking at you differently and judging you.’ And I said, ‘Well Mom, I have a poop bag attached to my stomach, so I feel like they’re probably going to judge me anyway.’”
Years ago, his conservative Muslim parents were not fans of his modeling or his brief stint running nightclubs and events, another one of the few jobs he could do that worked with his schedule of hospital visits and school.
However, his parents have come around to the idea and now ask to see photos from his modeling shoots.
“I’m not entirely sure what’s changed. Maybe it’s the number of times I’ve been in the hospital and just trying to balance myself and fight,” said Juma, who having changed his parents’ minds hope to motivate others with disabilities, anxiety, and depression with his experiences.
He joins other ostomy models like Blake Beckford and Bethany Townsend in sharing their experiences online. He hopes to do more writing and, despite his persistent social anxiety, public speaking.
“Eastern cultures have been about keeping things quiet, preserving family honor, and these issues aren’t really talked about. It’s very taxing on the psyche. I think people of color and minorities need to bring it up.”
For more information on Saleem Juma, his life, work, and projects, visit ostomybagswag.com.
Tiffany can be reached at email@example.com.