The pumps beside my bed are quiet, perhaps the softest sounds in the hospital, in contrast to the shrill beeping of machines, or overhead pages, or the thunder of carts and gurneys going past my room. A mild click and suction sound, which then repeat themselves over and over in a timeless loop. When I must make my way to the bathroom, I grasp an IV pole in each hand and awkwardly wheel them both along with me.

The one in my left hand is feeding me nutrients, because I’ve been unable to properly digest food for months. A bag of opaque milky white liquid hangs beside a translucent apple juice-coloured liquid, and both mix in the tube as it leads to my wrist. On my right is the saline solution, for hydration and to keep a line open in case medications must be delivered. Close to where it enters my hand is a scar, made by a kitchen knife some time ago. My older brother had been curious about what flowing blood would look like. We both learned things on that day.

The electronic IV pumps are new, or at least are new to the staff at the hospital at this time in the early 90s. For decades IV drips relied on gravity and constriction of the line to regulate flow, but a pump ensures the perfect dose. Nurses smile brightly at me as they come to change a bag of fluid, but the smiles fade and frowns appear as they try to remember how to program the machines. It isn’t long before I learn the necessary sequence of button presses, and how to adjust flow rates, and the required settings for each of my drips. I’m able to help a nurse if they seem flustered or unsure of themselves; word gets around, because some don't even bother trying and just ask me. But the young, pretty nurses that my thirteen-year-old self likes best don’t seem to need my instruction, which I find vaguely disappointing. 

At some point, the vein in my left arm weakens and can no longer handle the nutrients. I have a quick procedure under general anesthetic, performed by a surgeon with the wonderfully unfortunate name of Dr Killem, and emerge with the line going into my jugular vein. My hands are unshackled for the rest of my stay. But the pumps still need their programming regardless of where the line goes. A young nurse I’ve never seen strides in and smiles at me. “Can you tell me how to work this pump?” 

I smile back and give her directions. She thanks me, and her hands fly over the buttons, practiced and efficient. Of course, she knows exactly what she’s doing, but as I’ve mentioned, word has spread that I like to help the nurses, and this is her gift to me.

■■■

Crohn’s disease is a form of Inflammatory Bowel Disease, a category of autoimmune disorders that lead to inflammation of the bowels, with symptoms that can extend right up to the mouth. More than 320,000 Canadians are estimated to be living with the disease. Recent epidemiology indicates that over 1% of the population will be afflicted by the 2030s. Psychiatric disorders, namely anxiety and clinical depression, are 1.5-2 times more common in IBD patients than in the general public. ( All figures from 2023 Impact of Inflammatory Bowel Disease in Canada). There is a bidirectional relationship, where poor mental health can incite worsening IBD, which can lead to a degradation in mental health, which can lead to even worse IBD.

I have never been clinically diagnosed with either anxiety or depression, but then, contrary to current recommendations for holistic care of IBD, the state of my mental health has never been brought up in any appointment. Looking back, I can’t help but wonder if it should have been. Anxiety, particularly regarding interactions with others, has been ever-present from a young age. I still vividly recall the fear of walking into an unknown classroom at the beginning of each school year, unsure who I’d have to sit beside or what the teachers would be like. On many days I prayed for the school bus to break down, or for a blizzard. Anything to stay home. I used to shrug all this off, telling myself that I was mentally tough enough to ignore the uncertainties. Of course, I was mistaken. 

■■■

I have somewhat fond memories of that hospital room, with the cartoon of Odie the dog painted on the window and the softly clicking IV pumps. After all, I was finally being helped. The family doctors in our small town didn’t know what was wrong, so they diagnosed me with mononucleosis and ordered bed rest. True, I was exhausted, yet mono doesn’t entirely explain an inability to eat or keep food down, or the other symptoms that were running rampant. Yet no further medical care was given. One of the same family doctors who did nothing to help was my dad’s doctor. He had been prescribing my dad medication for ulcerative colitis—a form of IBD—for years. 

I was 13 and weighed 64 pounds. 

Out of ideas, my mom took me to my asthma specialist in the city. He immediately had me admitted to hospital for intravenous nutrition and testing. 

Why is it that nobody in my hometown cares? Everyone in the hospital is so nice even though they’re busy. They have to look at my chart to know my name but they are kind and I think maybe some of them even like me. I’ve been here almost two weeks and it’s hard to sleep through the noise but I’m even eating solid food again and hospital food is supposed to be gross but it’s delicious to me. For supper I ate everything on my tray and was still hungry so one of my regular nurses ran down the hallway to get extra food for me. If I eat all of my second tray maybe she’ll smile at me. She’s my favourite. I’m not sure I want to go home.

■■■

Prednisone is a steroid; a medication that decreases inflammation and immune response. It is extremely effective in reducing a flare of Crohn’s but has serious side effects as a result of prolonged use. Treatments have changed dramatically in the decades since I was diagnosed in 1993, yet prednisone is still used as a last resort. Some of the more benign side effects include increased appetite and a puffy face. Less pleasant are mood changes, decreases to bone density, acne…the list goes on. I was on a massive dose after leaving the hospital.

■■■

Why? Nobody can tell me why. I hear the doctors talking to my mom, and I’m no child. They don’t know what causes this disease, and there’s no cure. So why me? My dad says I should be grateful because other people have it worse. I do think he’s sort of right, but nobody I know has it worse. So why? I am so fucking angry (yes I know swear words I just don’t say them out loud where anyone can hear) but I shouldn’t be. My parents had such a hard time with my brother–they’d be sad if they knew how I hate myself and everything. Even now that I feel better I’m still so small and weak because I stopped growing and this wouldn’t be so bad if I were a girl but it’s death for a boy in grade 8. At least my brother is gone now, living in a group home or whatever it’s called. It sounds like a sort of jail but I’m not sure. It’s a new thing, not being afraid in the back of my head all the time when I’m at home.

So much of school and books and parents’ lies say that good things happen to good people and that we get what we deserve in life. But that must not be true, unless it is true and this is what I deserve. But why?

■■■

No doubt everyone can think of a favourite era of their lives, where everything just seems somehow aligned: perception of self and others, overall well-being, contentment. I can think of more than one, and may even be in one now. I doubt, however, that very many people would choose middle school as their favourite.

After a few hospital stays, and eating so gluttonously that my parents can hardly afford grocery bills, I return to school for the last few months of grade 8. Prednisone has puffed my cheeks up; I look like a squirrel with a mouthful of nuts, yet still have the same skinny limbs. 

Not everyone recognizes me. “Who’s the new fat kid?” I hear in the hallway. I can’t help but notice that other kids are nicer to me, friendlier, while they think I’m New Fat Kid. They’re still sizing me up, deciding if I’m worthy. What would happen if I could adopt a new personality? Once they realize I’m me, just with larger cheeks, it’s back to normal at school.

Adults seem to think it’s tragic that I miss many months of school, but the few friends I have just seem jealous. I can’t fault them for it. There’s something to be said for sick leave.

■■■

I sit in a small waiting room, staring at the mass-produced art that adorns the white walls while I wait for the doctor. It’s just a walk-in clinic, necessary only because I need an asthma prescription after moving across the country. My disease complications from a few years ago are ancient history, now that I’m twenty and healthy. I just want to get in and get out. But the doctor, once he arrives, insists on asking about my medical history. I don’t have time for this; I should lie so I can get out of here. I have friends to meet at a pub. Priorities.

“You have Crohn’s?” the doctor says. “Are you on any medications? Do you have a specialist? Even if you’re in remission, it’s important to stay on top of things.”

I sigh. He means well, but clearly doesn’t understand: I’m not sick anymore. Why would I need a specialist? 

“Look, even if you feel well, inflammation can build up over time without you noticing. Don’t ignore this.” He hands over a prescription and then I’m free to go; free to forget this conversation ever happened.

As I leave, memories of illness bubble up from deep within; memories I thought I had slain. That night at the pub I end up drinking myself sick.

■■■

Maybe I should have taken that doctor’s advice earlier. Around a decade later, my family doctor refers me to a specialty clinic, and I do make an appointment.

At this point, I’m married and have two young children. New parents are all too familiar with exhaustion, but the tiredness I feel is beyond description. The disease is back, and I end up taking prednisone again. Its side effects differ from when I was a teenager: it’s the mental changes that hit me hardest. I yell at my children, snap at my wife, argue with coworkers. A distant part of me knows I’m being a complete asshole, but I seem incapable of fixing it. I have to spend two weeks travelling for work, and my wife is secretly happy for the break. Well, maybe not so secretly.

Inflammation is tamed after a few months, but my specialist recommends surgery. A section of my small bowel is mostly scar tissue from cycles of inflammation, and at risk of clogging like a dirty kitchen sink drain.

“It can either be removed soon, with a planned surgery while you’re still young, or later when it’s an emergency. I can’t predict exactly when, but it’s coming out at some point in your life.”

Hard to argue with this logic. My bowel resection surgery is scheduled for the following year. In some ways, it’s easier on me than my family. I do absolutely nothing useful for weeks, while my wife puts up with my moods and takes care of the kids and me. 

■■■

Daddy has a sick part in his tummy and it has to be taken out. I don’t understand but that’s what Mommy told me and she said Daddy will be tired and grouchy for a long time. He’s really old I think 32 and old people get sick. I’ve been sick before and it makes me tired and then I sleep but sometimes not much because there’s too much I want to do. But he is sick and says he can’t sleep which makes him more tired and sick and then he gets mad and sometimes yells and it’s scary and I don’t like that. How can he be tired and not able to sleep? Grownups are weird. He’ll be staying in the hospital for a really long time I think maybe a week and Mommy says his room will be boring but he likes my pictures so I’m going to draw a bunch of pictures and I have to remember to bring tape so I can put them up in his boring room.

■■■

A year or so after my resection operation, the pain had become unbearable, and the antibiotics that might have helped did not. Or maybe it was too far gone, too late when I stopped ignoring the all-too-familiar throbs and allowed myself to believe they were real. I sit in the bright, ghastly fluorescence amongst the other sick people in the emergency room, thoughts turning over in circles. I had surgery a year ago, and an unpleasant flareup the year before, but this is different. It has been nearly twenty years since I have felt this particular flavour of pain. I am alone, my wife at home with our five- and two-year-old boys and our house full of company who have come to visit for my kids’ birthdays.

My name is called by the triage nurse, and I brace myself on the arms of my uncomfortable chair, hoist myself up, and shuffle to the desk. The nurse looks harried and haggard. She might have been here nearly twelve hours already.

“Grab a seat,” she says, gesturing at the empty chair.

I can’t do it. Being seated is barely tolerable, but the act of arriving in a seated position hurts too much. 

“I’ll stand, if that’s ok,” I reply. 

She shrugs, and we begin discussing why I’m there.

“On a scale of one to ten, can you rate your pain?”

I’ve always hated this question. What will they think of me if I say 10 when I think it’s a 10 but maybe they won’t and they’ll think I’m a wimp or they’ll look me over and say there’s nothing wrong with me that I’m making this up but I’ve never made anything up why would I want to come here over nothing. And what the fuck would a 7 out of 10 even mean?

“Eleven,” I answer. It’s my truth.

And because, while pain can scour away at me, as can the shock of being back in this state decades later, and pain can change my demeanour, I am determined not to let it entirely claim me. There is one thing I won’t let it take from me: I am, objectively, absolutely hilarious. Especially today. So, I elaborate for the benefit of this nurse who looks so wan. And not just for her benefit. Surely, she’ll tell everyone she knows about our interaction–It was a long shift, but this one patient made my day–and they will all laugh, shake their heads, and wish they had seen me bravely joking about pain. Maybe she’ll smile at me.

“It hurts so much I can’t sit it.”

A blank stare. Don’t you get it? The usual phrase is ‘can’t stand it’ but I said ‘sit’. I’m pretty sure this is a good one, though, because–   

“Are you taking anything for the pain?”

She strikes to the heart of the matter, perhaps discovering the source of my uncharacteristically inflated confidence. “Tylenol 3. A bunch of them.”

“What? Where did you get that from?”

“Leftover from wisdom teeth removal.” Doesn’t everyone keep their leftovers? Stash them like a squirrel, mouth full of nuts? Just in case?

I’m admitted, and after being examined I am told I will go in for emergency surgery that night. Soon I’ll drift into unconsciousness, where there is no pain, and it will be a relief. I’d always thought I was strong, at least in some ways, but I’m good at lying to myself.

■■■

I’ve been put in a bed by a window, in this post-surgical room of four patients. Looking out I can see other parts of the hospital, lower down than I am; the conglomeration of buildings from different decades all stitched together makes me think of some wealthy madman’s mansion I’ve read about, I think in California somewhere, that had rooms added randomly each year.

A crowd begins to form around my bed, various doctors, surgeons and nurses all vying for a spot closest to me. There has to be at least nine or ten of them, and in my post-operative haze I try to figure out a hierarchy in my admirers. Do the different scrubs mean anything? Are they colour-coded, like in Star Trek? And why are there so many? I should be charging admission.

One of them is donning gloves, the squirmy rubbery sound grating in my ears like nails on a chalkboard. This can’t be good. He manipulates me so the site of the wound is visible to all, even those who ended up in the nosebleed seats of this impromptu stadium. Some take notes, others just nod and murmur appreciatively.

“How’s the pain?” a woman asks me.

“It’s better than before the surgery,” I say, in some surprise. I guess things really were bad.

“Do you think you need any more pain meds? Morphine perhaps?”

“No, I think I’m okay, thanks. Morphine makes me dizzy so I’d rather not.”

She nods. “Okay, well if you change your mind just let us know.”

“I need to remove some of the packing from the wound,” the man in gloves says softly. “It might hurt a little.” He reaches down to the wound. Suddenly atoms are being split inside my body. Someone in this room is yelling. What room? There is no place, just red mist that is also white somehow, hot and cold.

A few seconds later I take a deep, ragged breath and a question comes to mind. Politely, I say, “Could we revisit the topic of morphine?”

Everyone around me bursts into laughter. Nailed it. 

■■■

I’ll be discharged later today and then I can go home! Back to my safe, comfortable place but it’s also where I work and have young kids and I’m responsible for 100% of our income and this is my vacation time this week because I get no sick leave. If I lose this job we’re fucked, I don’t know anyone locally I work with people in other countries and have no network here. There’s just been another round of layoffs and I dodged them again but for how long and my older son is autistic and we have so many meetings with the school about how to best work with him, and they mean well but I have no answers. Why now, why has this fucking disease come back now after being blessedly gone during my twenties which I thought would last forever and were gone in a flash and are nothing now but dreams and memories? Why now, what could possibly have started it all over again? Is it what I deserve?

■■■

 A common side effect of general anesthesia is an inability to urinate for several hours. Discharge from the hospital is delayed while I wait for my bladder to, well, discharge. I lie in bed, trying and failing to understand what life will be like during recovery, and beyond. The birthday party is tomorrow. We have a house full of company. My wife has nothing left to give, and I’m useless now.

Nobody should be blamed; I understand being pulled in too many directions. But the fact remains, and no rationalization changes it: I am entirely alone during this hospital stay. Nobody visits. 

Later, the surgeon tells me the wound could take years to heal, if in fact it ever would.

■■■

Daddy missed my birthday party and it was fun but he should have been there. Mommy brought him home from another boring hospital room filled with strangers but then he went straight to sleep and didn’t wake up until after my birthday. The hospital should have made him all better but he seems worse and Mommy says to stay away from him because he’s in a bad mood a lot. I hope he’s normal soon.

■■■

Infliximab, brand name Remicade, is a chimeric human-mouse monoclonal antibody, used to treat a number of autoimmune diseases, including Crohn’s. It’s delivered via periodic IV infusion, and once started, patients typically remain on it indefinitely. Studies of its effectiveness are conclusive, particularly with a subvariety of the disease that I have, called fistulizing Crohn’s. Because it suppresses aspects of the immune system, it is common for patients to be more susceptible to infection and illness.

■■■

In other words, I get pumped full of a mixture of rodent and human DNA every eight weeks. It’s best not to think too much about it. Ten years, now, that I’ve been on this medication, and ten years since I’ve had any trace of inflammation. Which begs the question: correlation or causation? Medical miracle or overpriced faith healing? Would my body have sorted things out on its own, as it seemed to in my twenties? I willfully ignored my disease then, thought it was over with, perhaps a nightmare I had dreamed but couldn’t have really lived through. 

Or could I have avoided these surgeries and wounds, in my thirties, if I had sought out maintenance care and medication, as that nameless doctor at the walk-in clinic suggested? But, God, the lure of what I thought of as a normal life…

■■■

I’m in the waiting room of the Gastrointestinal clinic at the hospital. It’s been around two years since my last surgery, and I’m here for a routine appointment. Physically I feel fine. This isn’t really a waiting room so much as a widening of a hallway. Nurses, doctors, porters, and cleaners briskly stalk the hallway, while the receptionist for the inpatient clinic slowly checks patient ID. 

My name is called and the nurse takes me through the usual pre-appointment ritual: checking my blood pressure, pulse rate and temperature. It’s the typical performative art; I’m not sure what a gastroenterologist would do, should it be found I have high blood pressure.

I sit in the chair in another hallway and the strap is tightened around my arm. It constricts like the coils of a python, and slowly relaxes until, out of air, it gives up and releases itself back into quietude.

The nurse looks at the machine and frowns, does a double-take. “Are you feeling okay?” she asks, trying to sound nonchalant.

“I’m fine, yeah.” 

“Let’s try this once more, then.” Strap tightens again, Velcro locks into place. 

“Are you an athlete? A runner?”

“Uh, no.”

“Are you feeling light-headed?”

“No. Is there something wrong?” I ask.

“Your pulse rate is super low.”

I shrug. “Is that bad? I feel normal.”

“Ok, well, follow me.” We walk to an exam room. “The doctor will be with you shortly.” Sure he will. It’s always ‘shortly.’

I return to the book I had brought with me. In truth, I don’t feel normal. ‘Normal’ is a low-level stress, often veering towards paralyzing panic, wondering what I could have done and could do differently about everything. ‘Normal’ is a recognition that I’ve let friendships, relationships with family, acquaintances slip from my grasp because I don’t have the mental energy to put myself out in society and, what is worse, the thought that I don’t really care and don’t feel the loss, and don’t really think others care or feel the loss of me in turn. ‘Normal’ is feeling bad, then feeling bad about feeling bad because I have things so good. Don’t I?

But here at the clinic, strangely, I’m at equilibrium, which is decidedly abnormal. I’m unreachable during this time. Work can’t call me to bail someone else out yet again. Family can get by for an hour while I’m here. There is chaos, in this hospital, but none of it is my problem. I can drift, and let go.

What explains this low heart rate? It’s because I have no stress here; because I can’t be elsewhere, and don’t need to be elsewhere. It seems tragic, I think, that to get this feeling I need to be in a hospital. Things need to change. I need to change.

■■■

Despite being springtime, I notice a yellowed leaf drop from the maple tree outside my mom’s home on the west coast, spinning and twirling lazily as it descends. My phone jangles, killing the silence of the forest. I jump a little, even though the call is expected. Many of my colleagues have already had this conversation.

“…I’m sorry to say that your employment is being terminated. You’ll receive details of your severance in an email later today.” Some vacation day this is. Funny, my dad was laid off while on vacation on this same island, many years ago. My parents ended up moving here. Must remind myself to warn employed people away from this place.

“Are you still there? Do you have any questions?”

What now?? After ten years, unemployed. In a way it’s a relief to get it over with. It’s not a surprise, after the last few years of financial results.

A question does come to mind, though, and perhaps it stems from life experience, and illness, and the countless times I’ve wished someone would ask how I felt, and truly want to know.

“How are you doing with all this?” I ask.

There’s a long pause before my manager replies. “This is the worst day of my career. I’m sorry. We fought hard with executive to keep you.”

I finish consoling the person who just reduced my family’s income to zero, and hang up. In the weeks and months that follow, I lose sleep. Stress follows me day and night. If I bake all our bread, how much money would we save? Maybe I should sell my car. No vacations this year. And my Crohn’s does nothing. No inflammation, no pain, no symptoms whatsoever. 

■■■

The IV pump hisses and clicks beside me, a comforting sound as liquid life is pushed into my vein. It’s been thirty years since I was so sick back in grade 8, and nearly died of malnutrition. Surely enough time has passed to put my thoughts in order. 

I read, much of the time, during my infusions. A solid two hours of reading. I seldom have time for marathon reading sessions anymore; these appointments are therapeutic in a few ways. And there are free cookies!

But sometimes my thoughts wander. This time, I sit staring at a page and travel back thirty years to the original question: why? There is still no answer, and there never will be; at least, not in the metaphysical sense of the question, which is the only one that would satisfy.

My reading choice this time is the Iliad. The heroic warriors in this epic rage and rail against their fates. They argue with their gods, and amongst themselves. And none of it matters. Their fates are what they are, sealed by the spiteful, uncaring deities that were archaic civilizations’ answer to the chaos of existence. These ancients ask ‘why,’   and don’t receive answers to their liking; thousands of years later, it’s all too familiar.

Maybe it’s all in the way we frame it. My disease has remained dormant. This demon that has lived inside me for so long has been lulled to sleep. And it happened while my anxieties persisted as I reach my forties. At times I feel a profound disconnection from nearly everyone around me, as though I’m the lone fish swimming in a tank, baffled by the view of the world outside. I still replay each day’s conversations over and over in my head at night until they lose all context and meaning and fragment into small chunks of distilled regrets and longings. Events have occurred, as they do in many people’s lives, that cause high degrees of stress: parenting; nursing a parent to end of life; fear of the covid pandemic while being immunocompromised. And yet. None of these anxieties or stresses has resulted in a relapse of Crohn’s disease. The bidirectional cycle may be broken, at least for now.    

Crohn’s is not much of a factor in my life these days, and I’m well aware of how fortunate I am, because I have a reminder of where I’ve come from. Every eight weeks, I come to this clinic and listen to the reassuring sounds of the IV pumps, and these appointments will never end until I do. My disease may return some day, or maybe it won’t. No one can say.

The nurses here at the infusion clinic know I’m not the chatty type, or at least not while I’m absorbing this exhausting cocktail. Every so often my vitals are taken, and I make sure to smile my gratitude. Aside from that I’m left to read, and think.    

My infusion is pre-programmed into the machines now, so there’s no need to adjust flow rates every few minutes. My help isn’t needed; I don’t have to control anything because, in the end, some things are uncontrollable. I can just drift.

Devan Erno lives in Calgary, AB, Canada with his wife, two kids, a dog and a cat. He was first diagnosed with chronic illness at the age of 13, which somehow was 30 years ago already. When he's not working on historical fiction, fantasy/sci-fi and nonfiction writing projects, he's going on long runs and has a day job as a database administrator.

Visual Art
Michelle Geoga is a writer and artist originally from Chicago, living in Southwest Michigan. Her writing has appeared in Little Patuxent Review, Five on The Fifth, Bridge Eight, Cleaver, Longleaf and elsewhere. Her visual work has been featured in New American Paintings, the Center for Fine Art Photography, Woman Made Gallery and elsewhere. She has an MFA in Writing and a BFA in Studio Art from the School of the Art Institute in Chicago and was granted a residency at Yaddo. She can be found at michellegeoga.com.


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