bookmarks

“Can you give your hand a few clenches?” I can, and I can do it well. This isn’t my first time. “Are you ready? 3… 2…. 1..” I feel the prick enter the skin on my inner elbow and I watch the blood come out. There’s a rainbow tourniquet cutting off my circulation. A rainbow?  I like rainbows. I guess we’re having fun. It’s 8am and I’ll be starting school in an hour. I’d rather be at home eating eggs on toast and watching cartoons on TV, but I’m here, with the nurse and my Dad. It’s a little thing we do together every 2 weeks, drive to the hospital in the morning before school, for another blood test. It’s not ideal but I’ll get to walk into school with a bandaid on my arm, hoping people will ask me what it’s for (they usually do) and it will make me feel different, unique, special somehow.

It all started when I was 11, a reoccurring sharp pain in my tummy that I ever so innocently, named “quick sicks”. It was predictable. I’d enjoy my meals and not long after, curl into fetal position for a moment until the pain would fade away. I didn’t really think too much of it, not like now, when any minor change in my body, I jump to conclusions of the worst possible outcome. “ChatGPT do I have cancer?” Back then, I was only young and to my little mind, it was just something that happened. Until one day, the pain got so bad that the trusty fetal position approach wasn’t cutting it anymore and my Mum decided to take me to the emergency room at our local hospital. The ‘quick sicks’ always seemed to worry her more than they did me. On arrival to the hospital carpark, my mum took the wrong turn in and we ended up on a road behind the hospital, bordering the back doors and filled with speed bumps. I can so vividly recall the pain stabbing me more intently every bump we went over and with every bump, I felt the guilt my mum was in, having to drive over the next, almost stopping at each one. I have lived 11,749 days and most of them just blur together in the timeline of my life, but throughout that timeline, there are moments that stand out and stay vivid in my memory, a bookmark I can easily access. Those speed bumps are one of them and I was about to create a lot more.

Ultrasounds and blood tests and “maybe it’s appendicitis?”. Referrals to different doctors, sitting on an uncomfortable plastic chair next to my mum, letting her and the doctor do the talking while, I, observed whatever art was hung in the room, something much more appealing to my youthful mind. An ocean, a cottage in the bush, the skyline of New York City, anywhere but here. I can still see those artworks in my mind and I will, for the rest of my life, dream of New York.

“We’re going to stick a camera down your throat, you’ll be asleep” A gastroscopy, a very big word that I’d never heard before but would quickly grow an understanding of what it meant. It meant that I got to have at least 2 days off of school! PLUS I’ll get my own bed in the hospital for a day that will have buttons to push up and down! Wait until my brother hears about this! I bet he’s going to be so jealous. Day 1 of my days off school involved fasting for the entire day while watching Ready, Steady, Cook on the lounge at home. A lunchtime cooking show every 90’s Australian kid will remember from sick days and an almost tortuous experience for someone who wasn’t allowed to eat. Day 2 was the hospital. Mum would take me there and on the drive in, we’d talk about what I’d get to eat after the operation. It was something she did to make me feel excited, to give me something to look forward to. What am I going to eat?! Once at the hospital, I’d get my very own gown, a hair net and the bed that I could move up and down, yay!

I have to take my hat off to paediatricians for having the resilience to work with sick children, but I applaud the ones who do it in such a way that makes them feel truly safe. I still remember the ones who did and the ones who didn’t. They rolled me through the hospital on my bed to the theatre and I felt really special to be getting pushed around through the corridors, like the queen I am, when I most definitely could have just walked. My mum, as always, was by my side. “I’m going to put this mask on you and you’re going to feel very sleepy”. Loud, beeping machines as a repetitive background noise, LED lights above, glaring right into my innocent eyes. I wasn’t bothered by the idea of the mask, although I eventually did grow to hate it. He placed the mask on my face and asked me what flavour ice block I’d like to have when I woke up.. what will I get to eat? He started naming the flavours available, raspberry, lime, lemonade… I knew lemonade would be the only flavour my mum would let me have (no artificial colouring) and before I could tell him my answer, I was gone. I don’t think I ever got that ice block.

Being an 11 year old child, I’d never heard of Crohn’s disease and to be fair, not many people had. It was some kind of rare thing that happened to people. Rare? Me? I’d be prescribed a drug called “prednisone” because my bowels were very near to closing up (hence the need for fetal position after every meal). They spoke of the side effects of the drug, but truly, in that moment, I wasn’t very phased by them. “Weight gain” meant nothing to me at that age, it was never on my radar. I knew “fat people” existed, I’d see them mocked on the movies, sometimes browsing the aisles at the supermarket or random kids in school who caught the wrath of harsh words, but that wasn’t something that happened to me. That was something that happened to people who only ate chicken nuggets and drank fizzy drinks all day whereas I, much to my disappointment, was never allowed to eat like that as a child. Along with the prednisone prescription, I was referred to speak to a dietitian, who insisted I increase my daily calories by… A LOT. Crohn’s disease sufferers quite often become underweight due to their inability to absorb nutrients and eat a balanced diet, so to prevent that, my diet plan was essentially to consume as many calories as I could. It all sounded pretty good to me, chocolate milkshakes with protein powder every night, I was never allowed that kind of stuff until now and well.. it all seemed really exciting until the next few months/years unfolded and in hindsight, changed the trajectory of how I would see myself forever.

I can’t recall each day of the drug, it’s all a little blurry in my mind, but there was one of those bookmark moments that I can remember clearly, just like the speed bumps. A few months in to my prednisone prescription, I was sat in the front passenger seat of the car, on a regular day on the usual drive to school. I caught my reflection in the side mirror and looked… different? I saw another girl looking back at me. I’d never perceived myself this much before (and never looked back unfortunately). Ultimately, what had happened is that I had gained the weight the doctors anticipated, “balloon face” they tend to call it, but it didn’t register to me that that’s what had happened, as I said, that was something for other people. In my eyes, I was just… different and I continued to grow (quite literally) and exist in my negligent mind. The world told me it was time to know a new kind of pain and a day came at school, when a boy (who was always known for disrupting class and causing mischief) in front of all my peers, called me fat. I hear it. I know his name and I always will. It left a small but permanent scar on a little heart that was only wanting to belong to the world. A bookmark if you will. It wasn’t the last time a comment like that was made but in those moments, there was always two kinds of children I was surrounded by. One was the kids who would pounce on the opportunity to talk about the fact I was “fat” now and the other was the kids who told them to shut up. I hope the latter of kids are currently living a very peaceful and enjoyable adult life, those moments of intervention had more of an impact than they probably realized, just like the nasty ones did. People could see it and I knew it but I could hardly run around to try and convince every child in the school to not judge me for what I looked like, please don’t look at me and whisper about it, please, it is completely out of my control.

I eventually got off of the drugs (thank god) and the weight slowly started to drop off - just in time for high school. It was very, very important to start high school with a good reputation and image because those years and how you are accepted by your peers will define the way you show up in your early adult life. I didn’t know that yet. I was about to turn 13 and my body was changing. Boobs, pubes, my first period. I know puberty is something every adolescent gets the sheer joy of going through, but I never want to diminish my own experiences and how those years felt, just because everyone else had to go through it too. Puberty was and is, a weird time for anyone. You’re changing, your emotions become deeper and you’re still learning how you want to belong in the world at the same time. My Crohn’s was having another flare up and the doctors spoke of putting me back on prednisone. This was NOT an option for me as I’d rather die than go through that again, especially in the midst of trying to form a cool, fresh reputation with my new peers in high school. So instead, I was offered a new option (that I can only dream of going back in time and asking for it to be offered to me in the first flare up in 2005). Osmolite was a milky protein supplement that I had to drink everyday- which which as a substitute of the drugs doesn’t seem so bad, except it was the only thing I was allowed to consume for two months. Osmolite, chewing gum, water and nesquik. It’s hard to explain how difficult that is, to consume nothing but the same drink everyday for eight weeks, I honestly don’t think I could do it now, but I accepted this path because I’d do anything if it meant I didn’t have to go on those steroids again. My mum bought me insulated bottles so I could take the formula to school with me. The kids asked about it, with curiosity, of course they did. Those moments didn’t bother me so much. The ones that did were the moments of growing with my peers, when my friends decided we’d take a trip to McDonald’s, which involved them getting happy meals while I sat there with an empty table, watching them be happy with their meals. School camp when all the kids got cafeteria trays of food that I was never allowed at home meanwhile I got taken out the back with a teacher, into the big camp kitchen, to get my formula from a fridge. Or the canteen at camp, where all the kids got to take their pocket money to get an assortment of lollies to take home. I had some pocket money and decided to buy some to enjoy when I was finally allowed to eat food again. What will I get to eat?  There was a cabinet in our home that ended up being filled with all of the sweets and goods I had collected over the 8 weeks that I’d cherish as little rewards I’d get to indulge in when this was all over and I was finally was allowed to eat food again.

Gastroscopies turned to colonoscopies and visits to the doctor would quite frequently require more from me than to just sit next to my Mum on the plastic chair, staring at the art. “I’m going to take a look at your bum today”.. the words I hated hearing. The words I’d hoped he wouldn’t say, the words I’d dreaded all day before this appointment, the words I told my mum in the car on the way that I prayed would not come out in this visit. “I’m training a doctor and she’s just going to watch too.” A paper sheet gets put on the bed, his gloves come on, I pull my pants down, walk up the steps on to the flat bed and lay forward facing down. Dissociation. There was never a time I was examined like this and something new was found, I never understood why they insisted on continuing to do it and when doctors try to make you feel better with “Don’t worry, we see it all the time” I feel as if they’re invalidating the experience for the patient, because I don’t do this all the time. I was only a teenager and I hated doing it, I hated how it made me feel, but back then, I didn’t know how to advocate for myself. I didn’t know I was allowed to say “I don’t want to do that” or “I want a female doctor to do this”. They said I was sick, he was the doctor, I had to follow suit. In a legal sense, nothing wrong was done to me Psychologically, though, I still feel what those moments did to me.

Years after I’d finally left the character building experience of high school, I was living in London and had to have a colonoscopy, the first one being a big adult in the big world on my own, no paediatric ward, no colourful paintings on the walls to give off the illusion this is a happy place. I didn’t know the doctors doing it and my mum wasn’t walking by my bed as I was rolled into theatre. I refused to have a mask for the anaesthetic, it had become a traumatizing sensation to lay there and look up at the bright lights while a large black mask was placed over your face. Surrounded by unrecognizable doctors looking down on you with their surgical masks and feeling your eyes slowly yet abruptly shut. You’d think by the age of 23 that I’d be used to it, but all I wanted in those moments was my mum. I was still just that little 11 year old girl, I think I still am. I remember waking up as the anaesthetic wore off, wanting to tell the nurses to call mum and tell her I’m ready to come home, decide what I was going to eat. Mum was on the other side of the world and it was just me in this bed, wearing a massive, stupid nappy they made me wear with a split at the back for operating access (which really, I think it would have been way less demoralizing to have just had nothing on).

At 32, my relationship with the healthcare system is never a fond one, I avoid a doctors visit unless it feels dramatically urgent and my relationship with food has never been normal. I’ve gained weight, lost it, found unhealthy shortcuts to getting rid of it and used eating as a way to calm my nervous system. What will I get to eat? From a very young age, eating something special became a reward, something you got to have after doing a hard thing. A dangerous reward system when you live with clinical depression and sometimes living is a hard thing. I’ve stopped drinking alcohol, my relationship with it wasn’t good. I’ve stopped smoking weed, my relationship with it wasn’t good. I can’t quit food the way I quit alcohol or weed. But to write this all down is an exercise to begin to explore the effects those years had on me. To remember that I am a soul, not just a body, I fear not enough doctors understand that..

If you read my blogs and enjoy them, please do reach out and send your love, it is always appreciated. - Holly