I met B. on Reddit. He replied to a post I made in a Crohn’s disease message board, where I was in search of someone with Inflammatory Bowel Disease who would be willing to star in a narrative of their own suffering. He wrote, “30, Male, IBD, Diagnosed age 8. Single word: fuck.”
B. not only lived in New York, he coincidentally worked across the street from my school. But over the course of the month that I spoke with him, I never met him in person. He was in the middle of another flare up, and was working from home in Long Island in between hospital visits. I asked him what his flare ups feel like.
“It’s like someone took glass, shattered it up, wrapped it around your intestine and it’s just squeezing those shards,” he said thoughtfully, as though he were finding the right words to describe waking up in the morning.
For most of his twenties, B. (who asked that I not use his full name given the very personal nature of his story) had no flares and was fine. But for Crohn’s patients, “fine” never really means fine. It means going through the day in decently bearable pain, maybe urgently running to the bathroom every couple of hours instead of every 10 minutes. B. could never eat too large a portion at once, due to intestinal structuring — scar tissue built up in his large intestine from chronic inflammation. His doctor told him that when he ate, it was like “trying to pass a carrot through a cocktail party straw.” I tried to picture this in my head.
“So, like a baby carrot?” I asked.
“No, like a real carrot.” he said. B. had little to no memories of ever living without pain.
A year and a half ago, he had a severe flare up that seized him from his state of fine. B. was back to feelings of shattered glass and eating a few bites of food a day. He returned to online communities like Reddit and health forums, where people with Crohn’s and Ulcerative Colitis exchanged medical advice and commiseration. There, they could express thoughts about their ailments free of embarrassment, without a bombardment of misinformed questions and judgements from those who did not understand. When B. once told someone he had Crohn’s, they responded, “Oh, I’ve had the stomach flu before. It was really bad.”
Sometimes B. and I Skyped, even when he felt like death. Our video chat would typically be preceded by a text message conversation like this one:
Me: “What’s your Skype name? Also if you’re really feeling like crap we can do this sometime this weekend instead. I don’t want to force you to talk about yourself when you’re in pain.”
B.: “lol relax I’m stoned trying to figure out my Skype password -_- username too would be helpful.”
After a few minutes of him fiddling to get his web cam working, he would appear on the screen, functionally high off his medical marijuana. He had dark hair, a pale complexion, glasses, and an occasional grin. I would ask him about his day. It typically included a few bites of a processed food like Wonder Bread, one of the few things he was able to digest, and a lot of hours doing work. His job was in computer programming and his bosses knew of his illness, so working from home wasn’t an issue. But he longed to be able to return to the simple regimen of leaving his home and driving to work. In the midst of a vicious flare up — if being more than five minutes from a bathroom wasn’t an option — getting into a car wasn’t even a consideration.
* * *
B. was diagnosed in 1994 at the age of 8. When I asked him about his childhood, he remembered very little of it, and quickly concluded that he had repressed it due to the highly stressful nature of the time. But one memory came to him quite suddenly, and he recounted it with a twist of bewilderment and aggravation. Two years before he was diagnosed, when he was only 6 years old, his parents had no clue what to make of his chronic and alien symptoms. They decided to send him to what he described as “weird Freudian therapists.” B. recalled one woman, “a beautiful woman,” drawing a line on a piece of paper and asking him what it was. “A line,” he said.
As our conversations progressed, B. made it more and more clear that his frustrations not only lay in his disease. They were heavily rooted in his parents as well. B. was insistent that they did not handle his illness wisely. The year he was diagnosed, they enrolled him in summer camp because his doctor told them it would be good for him to get outside and interact with other kids.
“How could they do that?” he said in disbelief, trying to talk out the logic of how they could have possibly thought this was a good idea. When he would ask his mother about camp, he recalls her telling him that they sent him away because he was sick and hard to deal with.
Both his parents are dead, and he is not close with his older sister, so I asked his wife A. whether she had witnessed his mother say things like this. After his father died, she remembered going with B. to his mother’s place to help her out around the house, since she now lived alone. “We came over to help clean the gutters or something and B. wasn’t feeling great,” she said. “And it kind of went from, ‘I’m so glad you’re here let me get you a drink,’ blah blah blah to ‘get out of here I hate you I never wanna see you again’ in like seconds because he wasn’t feeling well.” This made things difficult, she said, because even though it was clear B.’s mother was struggling with being alone, her behavior made B. not want to see her.
B. says his mother was a disturbed woman who when she wasn’t vying for his love and attention, was telling him he wouldn’t amount to anything. His father, he says, worked long hours weekly and was seldom home. B. interprets this as a strategy to avoid dealing with his mother. B. recalls never playing catch with him. His few memories of bonding time consist of his father teaching him how to use Microsoft Excel.
His mother became his advocate. She was a paralegal who when he was so sick in middle school that he could not leave home fought the administration to provide him with a tutor and a home-school education for an entire year. B., however, does not remember that effort fondly. He is convinced the missing an entire year of school hurt him socially.
“I’m not going to smile just because that’s something society expects me to do.“ he said when I asked him what he meant. “Looking back I can start to notice myself starting to feel different from other people. And then high school was just a fucking shit show.”
B. knows he is very bright. Listening to him tell the story of his growing up, he reminded me of the sort of kid who would goof off during class or never do the homework, yet when the teacher called on them, they always knew the answer. He was also a wise ass. His wife remembers how he would walk into her freshman art class to talk with a friend, and ignore the teacher’s insistence that he leave.
B was bored in school. He was also sick and, he says, he used his illness as a way to dodge classes. “My problem was that I was bored as fuck in school and that I was sick,” he said. “The amount of time I used my disease as an advantage to get out of school to say, go spend time with friends and cut class, a lot of that happened.” Sometimes when he was extremely sick, and sometimes when it wasn’t that bad at all.
He nearly failed out of high school, and he didn’t really care. He smoked a lot of weed and hung out with his friends. His mother remained eager to do whatever made him happy, he says, when she wasn’t screaming at him. The only constant in his life was pain.
* * *
His turning point came when he was 19. He was in his second year at a community college, and enduring an extended flare up so painful he remembers a barrage of feeding tubes, colonoscopies, endoscopies and barium swallows. Still, he wanted to transfer to a four-year college. His doctors prescribed a new IV infusion medication called Remicade, which required him to spend most of the day in a hospital whenever he received his dose, beginning with three times in the first six weeks, then extending to every eight weeks.
“I felt like my personality up until that point had been very centered on the present instead of thinking about the future,” he said. “And I think I finally reached a point where I realized that I would live with this disease forever and that wasn’t an excuse to cut school for the rest of your life.”
But Remicade alone could not resolve all the symptoms. He was prescribed powerful pain killers. “I went through all of my college on opiates,” he said. “And I was a straight A student.” He would wake up, go to class, and spend all day high on medication until he went to sleep at night. Sometimes he actually needed them; sometimes he didn’t. He was numbing his mind, he says, escaping the pain of his childhood. He quit the opiates when he graduated. He decided he did not need them anymore.
B. has a home, that he shares with his wife, and their dog. He has a job that, he says, he loves. He cannot take a subway because he cannot be that far from a bathroom. He is reluctant to travel — in fact, given that he is not comfortable even spending too much time in a car, the thought of travel of travel does not even occur to him. His wife is a nurse and while she doesn’t attend to him medically, understands the restrictions on his life. Her family, which B. says have otherwise embraced him, still struggles to.
“Do you think you’ll ever have kids?” I asked B. in our last phone call, after listening to him baby-talk with his corgi that had waddled into the room. The thought of passing on his Crohn’s was always in the back of his mind, but he still wanted children someday.
“Sometimes the day to day can be good enough and in several ways I have accomplished a lot of things in my life and I’m…quite happy, even though right now I’m really sick and quite miserable,” he paused, breaking into a raspy coughing fit — a new respiratory infection resulting from his lowered immune system. “Do you hear this shit?”