Behind the scenes: twenty-one (Appendix)
A piece written in 2018 on my memoir course, exploring the experience of receiving a diagnosis at twenty-one.
I’m sharing this piece as part of diving deeper into the poem twenty-one (pg31), and the piece a diagnosis (pg 32), in the Behind the Scenes explorations:
Part of a piece written in January 2018 when I had just begun my six-month memoir course with
and about the time of this diagnosis. One of the turning points in my life if you will.I'm lying in a metal-framed bed in Auckland Hospital, New Zealand’s largest city, following my first ever colonoscopy. It’s October 2004. The sheets are white and make a soft crinkling sound every time I move my body. I’m on the fifth floor, in a four-person room, in the corner next to a large north-west facing window. It’s sunny outside, one or two fluffy white clouds disappear behind the tall brick building, but there is a hint of winter left in the air, not that you would know it inside here, I think it’s at a constant 24 degrees.
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For those of you who have never had a colonoscopy, I wouldn’t call it a particularly pleasant experience, especially when you are a self-conscious 21-year-old. Also, unfortunately for me the sedative hardly touched sides, so I still clearly remember everything, including having my insides pumped full of air so that there was more room for the scope to move. I felt like I was going to pop! I also had a view of the big screen and what the scope was showing up. I could see a lot of red, hot and angry looking tissue, which I presumed was my mucous membranes.
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Anyway, so here I am in bed, four hours after my colonoscopy. I’m still trying to get the last of the excess air out without sounding like I'm just farting uncontrollably (which I suppose I am). It's afternoon and by now a few friends have learnt about my whereabouts and they have collected around my bed with flowers, cards, love and concerned faces. I'm mortified that they're seeing me in this state! My hair’s greasy, I’m pale with bags under my eyes and I’m in a green hospital gown looking like a zombie.
"Oh my gosh Kals, why didn't you tell me, I would have come and hung out with you," Hayley says, placing a beautiful big purple magnolia in a plastic glass on the bedside table and sitting down on the bed.
"I just didn't want to hassle anyone," I reply shrugging my shoulders, smiling apologetically. In that moment I wish I had told her. I wish I had had company in all these lonely hours.
That superwoman cape I pull so tightly around me to avoid vulnerability stops me from doing such things. I only like to hang out with people when I'm okay on the outside, I don't want them seeing the messy me coming through. The vulnerable me. The me whose control over life is suddenly crumpled around her like these starchy bed sheets. Maybe I’m also scared of how I’ll manage their responses.
Two young male doctors walk into the room towards me with their clipboards. One of them has a stethoscope draped around his neck and his spare hand in his pocket, the other with very thin glasses perched on the bridge of his nose and his shirt a little too tight over his belly. They briefly nod at the small group of people around me, who politely move off into the corridor.
Caroline, the woman I’ve been a live-in nanny for for the year, asks if I want her to stay. "I'll be fine," I reply, not wanting to have to manage anyone else's emotions at this point. Luckily I have eaten some gluten free toast with butter, so there is a bit more energy running in my veins since fasting for over 24 hours for the colonoscopy.
The doctors come and stand next to my bed, where I’m sitting with my back propped up by big bulky pillows, and they begin their monologue, as if they have rehearsed it with many other patients before.
Dr. 1 with the stethoscope glances at his clipboard and then looks up at me, “So the initial results of the colonoscopy show that you either have Crohn’s disease or Ulcerative Colitis, but since the ulcerations and bleeding occur beyond the large intestine and into the small, it is most likely Crohn’s. We won’t be able to confirm this until the results of the biopsy are back in a few days and we’ll let you know."
A biopsy? They took some of my intestines to send off for testing? I'm staring at him nodding, like one of those crazy plastic dogs you find in the back of cars that spend their life nodding out the window.
Dr. 2 chimes in, “Miss Bell, Crohn's is not something that goes away. It is a condition that you have for life. The implications of this diagnosis are that you will have to be on a lengthy course of prednisone [immune-suppressant], and that you will need to be on the drug pentasa [anti-inflammatory] for the rest of your life.” He absent-mindedly bumps his glasses back onto the bridge of his nose. “You will experience relapses where you will need to go back onto the prednisone, but you may not have to rely on it all the time.”
I cross my arms over my chest and keep nodding slightly.
Dr. 1 fills in, “Due to the action of Crohn's compromising the intestinal tract, it is common for sufferers to require surgery any number of times to have parts of their bowel removed as the disease progresses. Some end up with a colostomy bag, but they are very manageable these days.” He fiddles with his stethoscope and smiles. Is it apologetically? “We need to you understand the full scope of what has happened to you.”
A colostomy bag? I’m 21, I’m self-conscious as it is, and I have my whole life ahead of me. I’m meant to be healthy. I’m meant to be fit. I have lots of plans ahead of me and none of them include this!
“Okay,'“ I say, frowning slightly at him. I can feel that little bit of energy from the toast beginning to release adrenaline through my system.
“We understand this is a lot to take in,” says Dr. 2, his belly bouncing imperceptibly as he talks, stretching the button holes of his shirt, “but there are many support groups for this condition. We have asked the nurse to bring you some pamphlets before you check out. I've also had a script sent to the hospital pharmacy for you to collect on your way out. For now, we need you to begin on 44mg of pentasa 3 times daily with meals and the 60mg of prednisone every morning until your symptoms ease. With the prednisone, you taper your dose once you start feeling better and keep tapering it until you are able to come off it for now.”
They say a few pleasantries before they turn and walk back out, but I’ve stopped listening. Anger erupts inside my stomach, like a bursting red balloon of hot liquid, firing through my veins. The adrenaline lighting up all my cells. Fear and indignation swirl together like a dark marbled painting. How dare they? How dare they give me a sentence like that? What the hell are they thinking?
I can feel myself crumbling on the inside, a deeper weakness washing over me as the adrenaline leaves me in its aftermath. On the outside I slip on my smile and pretend I am unfazed by all this as my friends come back into the room, but notice that Jason* is speaking to the doctors as they leave. Does that mean everyone knows? I see pity in their eyes, and I cringe. Years later I reflect that it was probably compassion, but I’m placing my self-pity onto them.
“Oh Kali, I'm so sorry,” says Dorothy*, “at least they've got medication that can help you and get you back on track in no time.”
“Yeah it’s all good,” I say shrugging and smiling at the same time, “I'll be fine.” Will I be fine?
Hayley takes my hand, and it requires every last ounce of energy not to burst into tears.
I want to make it feel smaller…for all of us. I don't want them to feel sorry for me or hold me to this sentence for the rest of my life. I know what people are like. We box. We take what people in power, like doctors and surgeons say, and we hold onto that as gospel. Most of us do anyway.
I don't want to be in this box. I want to rip its sides off and expose it for what it is. A name for symptoms they can't understand.
Growing up my dad always made it very clear that what doctors say is not gospel. That when something falls into the ‘too hard’ category, often they say there is no cure and that you’ll have to do x, y and z for the rest of your life. In this moment I am so thankful I have permission to disregard the scream-like painting the doctors just painted for me.
I am also fired up by an indignancy that they could have painted such a picture for a young impressionable girl. What about the others? What about the ones who will believe everything they've just said and take it for the truth?
*Jason and Dorothy are my parents’ good friends, who will open their doors to me in a few days, to stay and be looked after before I fly back to my parents in South Africa.