My Crohn's Diaries

I sometimes write fiction, and this one happens to be about feelings I have about being chronically ill in my daily life. The way it changes you, but the way it sometimes doesn’t feel worth speaking up about, how getting a diagnosis feels scarier than living with the pain, how even something “minor” can change your life forever.

You stumble coming off a curb in the middle of a bad, bad day in a bad, bad year in a life you’re not supposed to equate with its smaller parts, and the drop in your gut, the rushing adrenaline of it, surprises you more than the pop you feel. And you are down, that’s the only word for it, you are down, and people are hovering, and you notice you have dented your water bottle, your favorite one, as you fell, and you are upset about that. You are embarrassed. Your hurt is dwarfed by this, this shame, this event made of a moment you would have rather experienced alone.

You are upset because it’s impossible to get dents out of insulated water bottles, and now every time you look at it, you will see that dent and hate it. Hate it. It will be just another thing in your day to despise and carry around anyway, because it still works, and who goes around throwing away things that work just because they’re not quite right anymore? Just because you don’t love them entirely? Just because they aren’t pristine?

On the asphalt so hot it starts to burn your palms, you shake off the strangers with a shame-filled smile, and you stand using your other leg, the leg with the ankle that still feels like yours, and you are fine. The strangers murmur about doctors and ambulances, but you wave in their direction, refusing to lift your head, and you hop more than you hobble to your car and unlock it, slamming the door behind you.

Inside the silence, the imagined privacy of the walls of the car, you are fine. See? You are fine. So fine, you have the strength to start the engine and brush your stinging palms on the thighs of your dress pants that are slightly too small for you now that you’ve gained a few pounds and resume your podcast, too. You don’t need a doctor, you don’t need an ambulance, you don’t need anything. Not when you’re already late for work. 

Work that eats your day from both ends, the commute, the getting ready, and the decompressing afterwards erasing any time at all you have to figure out what you want or who you are. Work that pays fine and has fine health insurance and forces you to put a fine amount of money every paycheck into a retirement fund you won’t see the benefits of for an entire lifetime. The tired smiles of people as they slice their retirement cake, as they give teary goodbye speeches, as they send out all employee emails with their personal contact information no one ever writes down, that’s what you are holding out for, what you are clinging to, what you are floating upon each day when the darkness of this thing called life threatens to pull you further into yourself when your alarm goes off with a shrill ring you will hate forever.

You draft your goodbye email every day. You edit and rearrange and add in new annecdotes about what some coworker or another said that everyone laughed at when you all went out for their birthday to the Thai or pizza or sandwich place down the street in a never-ending rotation of birthday cards signed the same way and stories told with the same inflection and aging just a thing to do to get you out of the office for an afternoon. You salivate over your sterile-white retirement cake with your name written upon it in cramped, blue frosting.

Who cares if passion isn’t in your equation? You aren’t even sure it’s a real thing at this point in your life. You think it’s just something people say to make themselves feel better about this, this feeling, this feeling it turns out life is. You think passion is a fever dream, a buoy in the far-off horizon while you are treading water. A fever dream, like winning the lottery or falling in love. You think it’s the new version of the American Dream, a life you work towards but never, no matter what, will you ever actually achieve it.

Besides, you have to go, to do something, or what does that make you?

You drive with your left foot and pull into a parking space the furthest from the door because you are fine and nothing is wrong. If something was broken, you wouldn’t be parking here, would you? You wouldn’t be walking at all.

You make it inside, panting and trying to hide it, and your boss tries to stop you in the hallway, but you pretend you don’t hear him. You have work to do, emails you owe, deliverables. Sitting down, you can’t even tell there’s something different about you, and isn’t that the beauty of an office job? Isn’t that the joy of cubicles?

You work until five, the throbbing in your ankle curling around you like a fist, squeezing you against the ticking of the clock, a held breath of pain, and then you work five minutes more as proof that you are fine because you are always a held breath of pain, aren’t you? You are always holding your breath against something. The next awkward conversation with the guy who sits two cubicles over, who keeps implying you’re past your prime to start having children. The next all-hands meeting that drones on until you are questioning the quality of the chairs the office spends so much money on each year. The next promotion given to someone else, the next job title change that means nothing, in the end, because you feel the same inside as you always have and you have worked this way, worked and worked, since you graduated college, and it all has been a never ending string of breaths held against eight-hour days in five-day weeks in fifty-two-week years that blend together until they are indistinguishable. Until your life is a repeating clock, marking no time.

What use was there in complaining about your ankle? You have not complained about anything, not for a very long time.

You drive home the same way you came, and you get the mail, and you do your dishes, and you watch TV while thinking about how you should work out and read the book you have set on your nightstand gathering dust and how you should probably dust because it has been awhile and you can see a thin layer of it when the light of the TV flashes off your entertainment center. You are behind in a life in which there are no milestones. There is just this day, over and over again. Just this day. This is your Groundhog Day, your time warp, yours and everyone else’s, you suspect. This life.

Somehow, still, you stay up too late and crawl into bed without reading a word, and you finally look down to see your ankle swollen and hot and no longer yours because the things that are yours you can feel, and you can’t feel that part of you anymore. The pain moves elsewhere, somewhere intangible and nauseating, floating just out of reach like a fog.

It weighs you down. It keeps you awake. It is no more remarkable than anything else that has happened to you, except, perhaps, that it has diverted your thoughts to somewhere specific. Some focus.

And in the morning, you get ready for work, and you pack your lunch, and when you arrive, coworkers whisper about you as you hop past them, but you are fine. If you were not fine, you would not be here, would you? You would not have taken the time to put grapes into a plastic bag; you would not have applied your eyeliner for so long that it became an exercise in frustration that you gave up at, in the end, leaving the house with slightly uneven wings that will irritate you all day long.

You don’t need a doctor or an x-ray. You know, deep down, the reason you don’t want one. The same reason you show up to this job every day and lie on your couch dreaming of another life at home: prodding at that wound, diagnosing it, just getting up on that table, would make it real. Crutches and a cast, and the plea for help that comes with showing up at the reception desk and signing your name and telling them what brings you in today. Doing so would mean something really is broken in you that shouldn’t be. That not everyone feels this way inside. That not everyone lives like a breath held against pain.

You have this hurt in you now, yes, but you always have, haven’t you? What’s another place to blame for it? What’s another thing wrong in a life of things feeling wrong? What’s the use in a diagnosis for something that won’t even make your life better to name? What use is a word for the pain you know will be with you forever?

So you go home, and go to work, and everything is normal. You hop around the office and your house and the park down the street, and it will be fine because it is fine. Because you are fine. You have to be.

And you know, one day, weeks or months or years from now, you will forget what it felt like to walk on both legs, forget completely, and that, you know, is almost the same thing as healing.