It’s not about being perfect; it’s about being better

On April 3, I moved into an apartment. My own apartment. No roommates. No family members. No one else but me in a pedestrian one-bedroom apartment with parquet floors and walls painted grey on the fifth floor of a 20-story building built some 30 years ago. The building has a brown brick façade broken up by grey-framed windows and concrete slab balconies.

Before I signed my lease, I convinced myself that the building had character compared to the newer, sleeker, cleaner, glistening glass condominium towers that surround it. After a few weeks in my new home, it became painfully clear that I was kidding myself. If I could have afforded it, of course I would have chosen a suite to rent in one of those newer buildings. When a building has “suites” instead of “apartments,” you know it’s classy. That’s where I thought I would be at this point in my life as a 30-year-old Canadian with a university degree and a college diploma. Classing it up in a suite with hardwood floors and track lighting and stainless steel appliances and a wonderful view.

I don’t think my dreams were overly ornate or out of reach. I figured by now I’d have a job that fulfilled me in some way, maybe a car, and a modern rental condo with all the aforementioned amenities. Of course, those dreams sprouted in my mind before my ulcerative colitis medications gave up on me.

I put lots of things on hold while I tried to get my UC under control – work, running, travel – but the hardest thing to put on hold was independent living. I hate living with other people, not only because it makes me feel like a useless dependent, but because I’m just not very fond of being around people every goddamn day.

From 2005 to 2007, I lived alone for the first time in my life. It wasn’t always a happy time, but I truly loved being independent. I loved coming home from work to a quiet apartment. I loved being able to come and go as I pleased. I loved having more control over what I did, when I did it, and who I did it with. My decision to go back to school full time necessitated a move back home to avoid amassing debt. But when I moved back home, I did so believing that I’d move back out on my own again soon after I graduated. A university degree is supposed to help you land a higher paying job, right?

Scarce job prospects and a worsening inflammatory bowel disease meant I had to practice patience before realizing that goal of autonomy again. And during all the days I spent at home rewriting my resume, and all the nights I spent in hospital recovering from my bowel surgeries, I kept telling myself that when I did move out again, it would be oh so sweet. So very sweet. Sweeter than the last time. Sweeter than anything I had ever experienced before.

That was an overly optimistic expectation, but it was easy to heighten my expectations as black liquid gushed from my red, ping-pong ball-sized ostomy after my first surgery. It was easy to glorify the future when my homecare nurse flushed and packed the penny-shaped wound beneath my navel. It was easy to dream big when I was sitting on the toilet for 45 minutes in the middle of the night trying to thoroughly empty my pelvic pouch. I had to dream big. Sometimes the thought of a near-perfect life was all that would get me through the misery of seeing my reflection in the bathroom mirror, seeing ribs poking out from beneath my skin, seeing a drainage tube running from my buttock down to a plastic collection bag filled with yellowish-brown liquid and strapped to my thigh.

When you’re in the middle of a rough time in your life, whether it’s the result of an IBD, another illness, or some other troublesome situation, dreaming about better days can help you ride out the storm. But in doing that daydreaming, you run the risk of falling way short of your expectations when things do improve. Then you’re left wondering what all your suffering was for. That’s what happened to me.

I woke up one morning a few weeks ago and I felt hollow. I felt like crying but I couldn’t even muster the tears. Not because I was in a flare-up, not because I had severe cramps, not because I was facing another trip to the ER or operating room. I was sad because I believed that in surviving a really, really horrid time in my life, I would be rewarded with some sort of euphoric happiness, and I wasn’t feeling it. My job was okay, my apartment was okay, my body was okay. But nothing was great, and I expected things to be great. I should have known better. It’s illogical to think that enduring hardship will automatically result in success. I don’t believe in karma, so I don’t know why I subscribed to a line of thought essentially grounded in it. The world owes me nothing.

Sometime during my struggle for normality, I forgot that. I forgot that it is indeed a success to be able to walk to two and a half kilometers to work, as I now do, when two years ago I laboured to make a lap around the corridors on the 14th floor of Mount Sinai Hospital. It is a success to work a full time job where I write things and design things when less than a year ago I was sending out dozens of job applications a day. And it is a success to be able to complain about the hideous paint on the walls of my apartment when not so long ago I was complaining that I’d have to wait three months for an operation to reverse my pain-inducing, problem-riddled ostomy. These are successes. Not great ones, but successes nonetheless, and I try to remember that more often these days.

Just to be clear, I haven’t flipped a switch. I don’t wake up with a dopey smile on my face and skip to work and greet the barista with a hearty “good morning!” when I order my morning coffee. I don’t even drink coffee. And I usually wake up wishing I could sleep for another hour. But I do enjoy my walk to work. Sometimes I stop to take pictures of flowers or the glorious architecture of the condo buildings in my neighbourhood that are still beyond my price range. Or I slow down to hear the chirping and see the flight of the red-winged blackbirds that nest in the nearby trees. And sometimes I clench my fist when I see a guy who’s probably younger than me driving by in a black Mercedes, presumably on his way to his important, well-paying job. The jerk.

I can’t just stop seeing or thinking about the things in life that I still aim for, but I try not to let the fact that I haven’t yet reached those ambitions consume me to the point where I can’t take some satisfaction from my meager accomplishments. Meager as they may be, they’re mine, and they’re signs that I have worked to make things better. Not perfect, but better.

This essay originally appeared in Issue 6 of Companion IBD magazine.

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