When I think about the idealized TV dads I grew up watching, the Danny Tanners and the Ward Cleavers, it’s hard to imagine them doubled over on the toilet, moaning in abject abdominal distress. As a new dad with Crohn’s disease, a chronic condition that mangles my digestive system and wreaks havoc on my overall health, I’m pretty sure no one would ever make a sitcom of my life. (Though, to be fair, Crohn’s comes with a wealth of toilet humor, if you’re into that sort of thing.) But since my daughter, Ramona, was born this spring, I’ve not only wondered whether I’ll live up to my own ideals of fatherhood; I worry that my illness will make it difficult to fulfill the most basic requirements of parenthood. What does being a good dad look like when your health so often prevents you from being present?
Ramona is already a fantastic, charming little pip, and I’m thrilled just to know her adorable little weirdo face. I am lucky in that I can share both the fun and the responsibility of parenting with a loving, dedicated partner who can be strong when I can’t and—practically speaking— provide the critical other half of our two-income household. I am by no means alone, but to me a father always represented certain things: a staunch protector, a nine-to-five provider, a presence at school plays, a competent completer of paperwork, and an able griller of barbecued meats. Right now I do my best to be all of these things, but I know there will be times when my health issues just won’t allow me to check all the boxes.
My wife doesn’t go back to teaching until September, so we’ve had some leeway in these early days. But I’ve already begun to strain against my own limitations. When I’m in particularly bad pain, working up the energy to take Ramona for a walk can be grueling. When my medications make me nauseous, I have to ask my already-exhausted partner to watch the kid for just a little bit longer. And Ramona: If you end up traumatized by having to sit in your little rocker on long trips to the bathroom with your gross dad, I hereby apologize in advance.
If you haven’t heard of it, Crohn’s is a sort of major malfunction of one’s intestinal plumbing. The disease comes with a host of stomach-related ailments—vomiting, constipation, diarrhea—but also bouts of blinding pain, a roller coaster of weight loss and gain, and secondary symptoms that include arthritis, chronic malnutrition, and a number of skin conditions. It affects 1.4 million Americans, and has no definitive cause or cure.
When I was first diagnosed about a decade ago, in my early 20s, I thought I was dying. I went through a range of tests and false diagnoses before they found out what was wrong, while I slowly watched my body waste away—dropping from more than 200 pounds to under 140 within a year. When I eventually received a diagnosis, it was hard to know how to feel. I knew I was facing a problem that couldn’t be solved with a one-time therapy or simple course of antibiotics, but I was also elated to finally know what was attacking me from the inside.
I quickly found out that my best-case scenario would be a lifelong slate of discomfort; worst-case scenario, multiple surgeries, fissures, and tumors. There’s no cure for Crohn’s, but with the right blend of drugs and medical attention, some patients go into remission for long stretches. I now look forward to these periods, when I feel more like myself.
While almost all new parents, healthy or with a chronic illness, face a blizzard of responsibilities and impossible benchmarks, living with Crohn’s brings into sharp focus one of the most heart-wrenching aspects of parenthood—the fight to find enough time. As a “Crohnie,” I often require multiple, hour-long bathroom trips every day. The intravenous treatments I receive several times a month are all-consuming, and regular doctor’s appointments and tests are necessary to sustain a complicated regimen of biologic therapies, pills, and dietary management. When I get really sick—something that happens once or twice a year—I’m in for a battery of scans, MRIs, and new medications with eyebrow-raising side effects. My daughter is growing by the day, and because of my medical needs, time continues to slip through my fingers.
I imagine Ramona will have to get to know the sterile smells and nervous buzz of hospital waiting rooms. She’ll sit with me and coo at nurses, who will tell me how cute she is as I receive my IV drips. She’ll get used to stopping for a quick blood test or pharmacy run on the way to birthday parties or family gatherings. On the bright side, I can only hope this will make her a person who is particularly sensitive and attuned to the health issues of friends and loved ones. But I don’t want her to get to know her dad as a compromised man in a perpetual rush, with no time for life’s little things, or inure her to a clinical atmosphere, surrounded by people in pain, where sickness is the norm.
And then there’s the extra layer of complication encumbering me in my role as a provider. As you can probably guess, employers aren’t always understanding of my situation. Despite (frankly insufficient) protections in place for those with enduring medical problems and disabilities, not many are familiar with Crohn’s. Employers can often misconstrue my sick days and frequent doctor's visits as self-indulgent or slacking off, and to be honest, I can’t think of a single long-term job I’ve had that wasn’t seriously strained by the demands of treatment.
Then there's the insurance companies: Dealing with them is a master class in Kafkaesque self-defeat. Even with “good insurance,” the medical bills pile up. In the past, I’ve always managed to push through somehow, or freelanced to avoid the rigidity of a regular job. But with Ramona’s arrival, it’s hard not to worry about my future professional prospects and ability to pay the bills, especially if my illness worsens. (Try as I might, I can’t recall an episode where Danny Tanner—or hell, even Homer Simpson—had to pretend like he didn’t just throw up at work, or struggled with the paperwork for filing a temporary disability claim.)
And some of the obstacles are just completely unnecessary. Last winter, during a particularly symptomatic morning, I waited for the uptown express on a busy subway platform in downtown Manhattan. Desperately trying to bury the sharp pain in my stomach, I struggled to stand straight, not to make any weird faces, yelp, or do anything else that might freak out my fellow commuters. But that day it was the nausea that ultimately got me, and it came on in surprising, rolling waves—leaving me reeling and gasping for air. I ran to the closest garbage and threw up, painfully aware of how I looked. Leaning against the trashcan, a hand roughly grabbed my shoulder. It was a police officer.
“What’s going on here?” he asked.
I told him I was sick. “I can see that. Have you been drinking this morning, sir?” he continued.
He was skeptical; he had never heard of Crohn’s. To be honest, with my scraggly beard and ripped shirt, I probably wasn’t helping my case. I spent the next seven minutes convincing him I was not drunk while I tried to keep my head up. I was worried he was going to arrest me. Though enraged at the time, it’s hard not to look back and laugh at the absurdity of the situation. The experience has stayed with me, a new, lurking fear to add to the list of ways I can lose control at any time. It was scary, without a doubt, but what scared me most is what would have happened if Ramona had been with me that day.
As I stare into Ramona’s dark blue eyes, which look a lot like mine, I also worry I may have passed along my disease. As the child of one Crohnie, Ramona has a 10% chance of developing the condition, compared to the less than 1% in the general population. These aren’t terrible odds, but the possibility still keeps me up at night. There’s no negotiating with life, no amount of self-righteous suffering that could offset my guilt at passing on this illness or justify my potential absence at important milestones.
All of this said, there are other strengths to be found in dealing with disability and chronic illness. I can’t really say anything nice about Crohn’s, but in its own way it steels you for life’s unexpected and inconvenient moments. Babies come with a delightful array of their own vulnerabilities and smelly, visceral byproducts, and I suppose I’m as prepared as anyone for these indignities.
Even those who live relatively healthy lives are tested with times when they are laid open, weak, vulnerable, incontinent. These are the wages of real love: lying in hospital beds, knowing that it’s not only in strength, but in frailty that we finally find and test our bonds, fulfilling the promises we have made to hold on and take care of each other. Even those fathers that come closest to emulating our sitcom dad patron saints will eventually have to face this truth.
Fatherhood is not going to be easy for me, and I think my wife and I will always be somewhat harried, pressed for time, shuttling between social obligations, school, doctor’s appointments, and bathroom emergencies, both Ramona’s and my own. And in the long run, I know that control of any kind is elusive. Letting go, thriving in the chaos, testing the people we want to be against the hard, uneven grain of reality, is the real crucible, whether you’re living with a chronic illness or not.
Jed Oelbaum is a freelance editor and writer focused on animals, science, and food. Until recently, he was a senior editor at GOOD magazine.