Sometimes I wish I had cancer. That's one of those unspeakable truths of life—the type that make eyes drift over your shoulder and count the wispy cobwebs on the wall behind you. But the reality is that Ulcerative Colitis is not a glamourous disease. It doesn’t have diabetes' movie-night reputation of gleaming needles and near-death lows, and it doesn’t inspire the paralysed-lung awe of cancer. It’s quite literally a shadow of a condition hidden behind its well-known parent: inflammatory bowel disease. Perhaps it sounds strange that I am jealous of people with worse illnesses. It’s not that I want to be sicker, or that I underestimate the debilitating pain of other conditions. I just want a disease with a bit more spunk. I want a disease that packs a punch when I tell people about it. Something that will garner a real reaction because it is, in fact, a real disease with real back spasms and real panda eyes and real expenses and real pills and real trips to Waikato Hospital and real joint aches and real constipation and real blood and real cancer risks. But perhaps I don’t deserve sympathy or recognition, because I brought this on myself.
People learn through the body. When we are babies we discover the world through touch: fingers wrinkled with gauzy innocence poke at unfamiliar eyes and gums gnaw on wooden table corners until the lacquer is opaque with saliva. These are the truths we remember as our bodies harden with age. Is lying any different? As children we trace the shape of lies with feathered fingertips—testing the edges of the vowels to see which ones make our tongues flutter prettily. We tell soft lies about missing chocolate and the dog that undid its own latch. These are the kinds of lies that are easily forgiven. The kinds that are repeated in animated voices around the dinner table, sending aunts and cousins into hysterical fits. The kinds that turn our cheeks a prickling pink but leave our bodies untouched. After all, the lies children tell aren’t supposed to sink beneath their skin and become enmeshed in the flesh of their stomachs, are they?
Although kiddie-lies don’t land with much impact before the squinting eyes of fellow Mummies and Daddies, parents still try to avoid the stickiness of dishonesty. They fall back on droopy bedtime stories about the emotional journey of the honest rabbit. For a while this worked on me. At age nine I became a blonde-haired judge, an executioner dressed in pink, surrounded by dark blue finger paintings of pets. Mrs. Meachum always looked to me when she returned to class, having been summoned by the soggy voices of little girls. I have never been sure why she did this. The moment that I became the truth teller of the class has been shuffled to the back of my mind and lost beneath the dust of my teenage years. I think I liked it at first. I was special and like a sunflower head, I followed the warm glow of attention. That didn’t last. When I was nine, I stopped bathing in my little circle of sunlight—or at least, I was nine when my parents separated, so that age seems about right. I feel I must disclose that I am an unreliable narrator. Not the scuttling, slippery kind who delights in feeding half-truths and evasions to the reader—it’s simply a case of fuzzy recall. My childhood memories have been sadly neglected, like that strange aunt you never call.
Class truthteller is an odd thing to suddenly make a stand against but the title started to sit like a cloak of chestnut spikes over my shoulders. I no longer liked the spotlight, and the truth seemed dull and pointless. Why would I want to stick out at school, at home, when everyone else was reciting lies as if they were the star of the school play? Their lies rolled out with the scripted confidence that comes from self-appointed limelight and a desire to dazzle. To me, lies became more interesting than the truth. They came in all kinds of flavours and textures. Some were as crisp as the inside of an underripe pear and as sweet as summer strawberries. Others landed with the dullness of a rock against a baby’s lace skull. The rare ones were like running your finger along a razor blade and watching your flesh part in neat lines.
For a while, I simply watched others spin lies. Their curling words shifted like ashes through the air until they sank beneath their target’s skin—adding to their collection of ghost tattoos. But then I started to indulge too. I thought that something intangible, something that I couldn’t wrap my fingers around, couldn’t possibly have consequences. On a school morning: It's too loud, I would tell my mum, people wearing gumboots are stomping in my head. My stomach huurrtts. My voice shivering like the last leaf on the magnolia tree I kept my eyes trained on. I would pull my pink and orange duvet to my chin and let my lemon juice eyes fizz like honeycomb. Eventually Mum’s footsteps scuffed down the hall into the kitchen where plates would land too hard until the door was slammed. Silence spread through the house like dye in water but I stayed in bed. My tummy clenched into a tight ball.
What followed was no longer fictional: visits to the doctor, sleeping pills, herbal concoctions, gluten free diets, dairy free diets, and sugar free diets. Surrounded by the smell of disinfectant and cloying perfume, I wondered who the fraud was: me or them? Were they just trying to get rid of the repeat offender kid or was I just that convincing? There were days I really did have a thumping head and stomach but mostly I think I was complaining about the wrong kind of pain. Each time the big kids attempted to gather intel about my parents’ divorce, my whole body squirmed and curled as if I was guzzling vinegar. Sympathetic glances and overly cheerful voices sent my tummy somersaulting. Rigor mortis assaulted my muscles when Dad murmured in a syrupy voice that Mum was making him leave and we wouldn’t see each other. My blood congealed in the icy tunnels of my veins when Mum told me Dad tried to commit suicide. Again.
Pain is a funny thing—like a rainbow, you can never quite pinpoint where it starts and ends. Perhaps I was confusing sickness with emotion; I can’t really be sure anymore. I do know that my words were never supposed to be plump with pulsing accuracy. My body was never supposed to believe my lies. The stomach cramps and the prescriptions should not have become real but time made them the truth. Premonition or karma or a lick of truth; my lies are my reality now and there is no end. Not incurable, they say. Manageable.
Manageable implies competence. It implies that you are qualified to have this disease—that’s how doctors and my family like to think about it. It’s neat. It’s easy. Of course, that’s a load of crap.
Here is how one truly survives.
When you sit down in the doctor's office at fifteen—head still cocooned in the goose down sedatives—this is what they tell you:
“Ulcerative Colitis is a chronic inflammatory bowel disease, which means that inside your large intestine and rectum you have inflammation, or sores."
“Judging from the images and samples we have gathered, it looks like you have stage one. This means it’s still mild, but without treatment it will worsen. Symptoms include diarrhoea, constipation, blood in stool, abdominal cramps, pain in joints, bloating, fatigue, anaemia, and an increased chance of bowel cancer.”
(You will experience several of these symptoms. No, they won’t go away. Yes, they will worsen. No, they often will not be taken very seriously).
“Treatments range from anti-inflammatory drugs in oral and suppository form, to immunosuppressant drugs to surgery for removing the colon.”
(This is what happened to your dad).
“I recommend PENTASA Mesalazine suppositories. Insert one into the rectum each night."
“We can’t cure this disease; it is lifelong, but with proper management there is no need for it to worsen. Treatments are better than when your dad was diagnosed.”
Of course, that isn’t really the whole truth. Their words have been filed down and patient-proofed, so there is no risk of injurious alarm. Unfortunately this leaves you sadly unprepared for the reality of chronic illness: long drives to sit in snotty green chairs, bum numb, running over time, coffee that doesn’t work, socks on scales, black and white forms, blue pens bled dry, elastic bands biting skin, solar planet systems on milky walls, don’t look don’t look don’t look ... bent needles ... pluto pluto pluto ... blood beads, caffeinated smiles, cold fingers. Pills. Pretty pills. Fourteen pills. Red and orange pills. Every. Day. Pills. Manageable.
Prior to diagnosis, you will come face to face with your mother’s flat, frowny grin. It is still the same as when you were a kid, but now your own face will wear it too as you explain there is blood in your poo. Your mind will become stuffed with static that is only interrupted by her recounts of your father’s diagnosis. You will only rarely discuss the condition with him but since you were nine you have rarely discussed anything with him. He only spouts nonsense about the disease being contracted from goats' milk and not eating onions, anyway. You will have to decide whether your mother comes into the doctor's office as you are a big fifteen-year-old now. She will. She knows all the family history. Your stomach will be pushed on by curiously hot fingers, and you will have to remove your underwear and pull your knees to your chest. The murky green leather of the medical bed will stick to your thighs and your eyes will search for that magnolia leaf. You will do stool samples, be stabbed, and told you have elevated markers (markers of what?).
You will be referred to a specialist at the hospital. You will wait months for an appointment. The doctor will tell you to drink three litres of laxative the night before. You must shit pure yellow water. You will mix the powder with Sprite and realise the salty vomit flavour is worse when it is sweet too. You must drink a whole glass every hour and not stray far from the bathroom. The drive to the hospital will be pitted with your mother asking if you are going to have an accident. You will wait awhile and get undressed with only a thin violet curtain separating you from the leering old man next door. Yes, you will want to cry. Yes, you will want to run away. But you won’t. The nurse will give you a watery smile and put in the IV. She will tell you that you can bend your arm. Then she will insist that you should bend it because it won’t hurt. (The needle will be bent when she takes it out later and fiery spasms will assault your elbow.)
As they wheel you away, you will press your palms into the unyielding mattress to stop them shaking because you are not afraid. You will smile at the middle-aged man asking you to put your knees to your chest while he holds a long tube in his other hand. The sedatives will grasp your toes and drag you under. It will be like sunbathing in summer while drunk and you will forget the chill of air on your exposed back. Your muscles will dissolve into warm pulp while your mind desperately struggles to sprint back to your body. The white walls will look fuzzy with distance. You will wonder if you should’ve shaved. The man will tell you that you can watch him thread the tube up your rectum on the big telly screen. It will seem as if you are watching Grey’s Anatomy and your body is nothing more than an actor in the intangible realm of fiction. You will absently notice that he is tearing samples from your insides with snapping turtle pincers. But it is just a little scratch.
The man will say it went well with a smile that is curiously ambiguous despite his intimate knowledge of your body. You will wonder why this procedure is labelled minor. It won’t feel minor as you wilt with shame like a tulip torn from its anchor. You will feel ashamed of feeling ashamed because it’s a standard procedure. No one will think to ask if you minded putting your skin on display to strangers. They will not care that, in your mind, you hacked at the most intimate parts of your body until the freckles, the delicate curves of fat, disappeared. Until your body was nothing more than a hunk of meat for the doctor’s hands to explore.
Repetition will dull the embarrassment of squatting on the bathroom floor nightly. And after university sends you into a coffee drinking mania that results in constipation, you will adjust to needing to take Asacol and an oral laxative too. After a crazy Christmas with work, you will learn that two nights without pills equals a flare up. You will decide that three months and then one month, is the appropriate amount of time to wait before telling your boyfriend about your condition. For the second boy, you won’t smother yourself with a pillow while you tell him why he can’t come into the bathroom before bed. You will smile when he makes it a ritual to count out your pills each night.
The copper IUD will become your worst decision yet. You will get it because hormones make you the bitch who yells at her boyfriend for being five minutes late. You will ask the GP if it will be a problem with your condition and she will say no. You won't blame her. Ulcerative Colitis hasn’t even been researched enough to be its own disease and there is even less effort put into studying women's contraception. With its friend the IUD, the disease will grow bold and assault you with nails of glass that rake down your stomach and into your ass. Shitting, walking, and drinking coffee will become a high-stakes peek-a-boo match. If you lose, your body will collapse like tissue paper around the pulsing centre of pain in your abdomen. You won’t get the IUD removed because all that’s left is the pill and you already have enough of those. You will wonder if the Colitis will get worse. And you will want to neatly slice away the part of you that wishes it was worse. But you will be fine because it is manageable, and you are managing it.
So now you’re in the worn Converse shoes of a diseased teenager. Do you think Ulcerative Colitis is part of the cosmic cycle of karma? Should children’s lies have consequences? I never asked the doctors. I thought they might think I was crazy and ship me off to the shrinks. Or maybe they would have chuckled and carried on reading off their script. I’ll leave the answers up to you. I haven’t quite decided but then, I am rather unreliable.