Hope, and Other Drugs.

Chapter 1 - Gensis

I had always wanted to be unique. Special. Gifted. I think every child acquires such lofty ideals. I was a dreamer, declared this as my beloved nickname since birth.

From a young age, society bombards us with the idea that we can do anything and be anyone. This message is reaffirmed repeatedly. It hides in the books we read, the movies we watch, shouted in the adverts flashed in front of us, and even our parents echo this prophecy. My childhood diary would tell of a girl dreaming about being famous, becoming a champion, having talent and skills that all would aspire to. I desired to be one of a kind, rare, like a precious gem. I never expected my wish would come true, though it did so in a most devastating way.

I cherish my childhood and look back on the good old days with melancholy, when I still had the innocence and wonder of a child’s perspective on life, before pain became a regular unwelcome guest.

∆

Most people would describe my childhood as idyllic.

My parents wanted to bring myself and my sister up wild and free, like the carefree horticultural hippies they were. In high school, my dad was the cocky surfer-come-skater dude, and my mum was the beautiful olive-skinned European dreamboat. Naturally sparks flew, and they got hitched a few years after university, later producing two offspring. My sister was born in 1991, and in 1993, I joined the tribe.

We lived on an orchard in a rustic rural town called Nuhaka. The town itself was so small that a passer-by would have barely registered it as one. There was a general store, a fuel station, a school and a fish and chip shop. It was situated twenty-four minutes east of Wairoa and two hours northeast of Napier City, nestled inland of the picture perfect warm white sands and desolate surfable waves that lined Mahia Beach. We spent our weekends gallivanting about our orchard, the neighbour’s orchards and the adjoining farmland, too. Walking for hours, we followed unbeaten paths along the banks, swam in the river, ran away from disgruntled livestock, patted the kind eyed farm horses and hardworking dogs, and climbed giant avocado trees that grew taller than our house. We were quintessentially wild children growing up far from the maddening crowd.

I was nine when my parents dreamt up the idea of living on a yacht and sailing the coast of New Zealand. They were determined to make the dream reality, so they packed us up and shipped us off. We lived aboard our yacht for near on a year, setting sail from Tauranga and travelling as far north as Houhora Harbour, visiting a multitude of marinas, bays and beaches along the way. School was completed through Te Aho o Te Kura Pounamu; or Te Kura for short. Otherwise known as The Correspondence School. Our mornings were spent studying diligently, so diligently that we often finished our full days tutoring before midday. Then we would gulp down our lunch and run off to play with the other boat kids. We would have looked like a type of kids-corner-come-fight-club as our feral gang of sun bleached kids raced up the piers. We yelled and squealed with joy, running around the marina buildings and jumping from boat to boat with swift agility. Our days were filled with riding scooters, bird watching, kayaking, playing hide and seek or undertaking self-guided conservation work by saving starfish and other small sea critters from the filthy marina water. When anchored in a bay, my family would spend our days either fishing, sailing, kayaking, hiking, swimming, hut building, nature watching or treasure hunting. Boredom didn’t exist in our family.

During our destination less voyage, we fell in love with the Bay of Islands and we swiftly put down a permanent anchor. In reality, we had run out of money and this seemed a perfect place to settle in. Mum and dad found horticultural work again, and we moved into the house on the orchard. My sister and I were enrolled in the local public school. I had one and a half years left at primary level and my sister would begin her secondary school education. We had plenty of adjusting to do to become regimented students after years of being free range, but overtime we settled in.

As I neared the age of fourteen, things changed within my body and I don’t mean normal teenage puberty, no. I experienced severe stomach cramps and frequent diarrhoea. Most of my food would have me hastily running to the bathroom. My insides felt broken. There were a few instances where I had almost lost control of my bowel function. Several times, I’d had to hold on for dear life until I was near enough to a toilet to relieve myself. One terrible memory comes to mind. While horse riding with friends in the nearby mandarin orchard, I felt a great stirring from deep within. I abruptly reined in my horse, turned her sharply and cantered full tilt all the way back to the barn. The entire ride back I was clenching every muscle in my body, a feeble attempt to prevent an accident. Once at the barn, I tied my horse to the rail and ran to the nearest toilet. In that moment, I was so thankful that all the horsey girls weren’t in the barn. They were far enough away that they couldn’t possibly hear the symphony of trumpets emanating from within, or, worse, smell any unpleasantness.

It didn’t take long for the bowel urgency to happen incessantly. Because of this, I ate less food and would eat incredibly slowly during each meal, for fear I’d trigger a toilet trip. This became an issue during lunch and morning tea at school. Friends would comment on how long I took to eat, stating that I must be the slowest eater in the world and tell me to hurry. Some days they would be more patient and wait a while, but eventually they’d get too annoyed and walk off and I’d end up having to eat on the move, otherwise I was left behind.

My fear of using toilets started around this time. I couldn’t eat or drink at friends’ houses without anxiety at the thought of having an upset tummy and causing a stink in their toilet. Every bathroom, excluding the ones at home, became scary, formidable places to be avoided by any means necessary.

The external and internal strife happening during this time of my life resulted in the polarisation and splitting of my being. There was the healthy version of me, and the unhealthy one. The better I felt, the more I was my happy-go-lucky energetic self. But when I was having a bad day or experiencing a lot of pain and fatigue, I would become sullen and withdraw inside myself. My Ying and my Yang.

Over a period of around twelve months, worsening symptoms plagued me and eventually I appeared sickly, gaunt, and pale.

Chapter 2 - Diagnosis

The most glorious thing that happened in 2008 would have to have been the release of the movie Twilight. After I watched the first movie, my friend gave me her copy of the books to read, and I must admit, I quickly became engrossed. Reading fiction was my escape from the everyday pain that plagued me. From then on, I spent all my sick days off consumed in each chapter. While part of me lived in a fantasy world with werewolves and vampires, my very real-world-self watched as my health worsened drastically.

∆

One day, I began noticing a reddish tinge, and blood clots in the toilet bowl. So I went to the doctor, now a regular occurrence. Because I was a teenager of a certain age, they diagnosed the onset of my period and sent me on my way. At home, mum gave me pads to wear but days past, and though there was always blood in the bowl, there was nothing on my pads. Mum was flabbergasted and so back to the doctor we went. Puberty was not the cause. A male doctor performed a rectal exam and suggested I try suppositories, of what drug I can’t recall. Though my mum stayed in the room during the exam, I would have preferred a female nurse perform it.

Some days at school, I would be in such agony that I wouldn’t move from my seat at lunchtime. Fear of needing to run to the toilet kept me seated. I could only go to the toilet during class, when I knew the chance of other students being there was low. I was so petrified of people judging my toileting habits. However, some teachers would refuse me leave and so I had to hold on for dear life until the bell chimed.

Eventually, all it took was one bite of food and my tummy would start cramping, gurgling, and protesting violently. As a result, my portions grew smaller and smaller, and this rapidly decreased my waistline. Hunger cramps would burn inside of me, but the fear of public toilets kept me hungry. Soon I just stopped eating at school altogether. Which saw me plunge down to a skinny 35kgs.

I hated quiet moments during class when the room fell silent. My digestive tract would knowingly choose these moments to be obnoxious, much to the hilarity of classmates. This only fed the wound that was becoming my existence. Being embarrassed daily is not good for one’s self confidence.

Just one spoonful of my breakfast would cause a half-hour session on the toilet, meaning catching the bus became impossible, as I frequently missed it. This meant mum had to drive me to school.

My nights were spent waking up multiple times to do my obligatory urgent number twos at 10pm, 1am and 3am, sometimes more frequently. These visits only added to my feeling insatiably fatigued, as I wasn’t getting the sleep I desperately needed to rest and recover. Some days, I was too spent to even consider attending school.

I started developing a painful anal fissure and several tears because of the frequency of my evacuations. Ultimately, my toilet sessions turned into matter, consisting mostly of mucus and blood. I would stare back at a bowl full of bright cherry-red stained water.

∆

By now my doctor was really concerned but had run out of ideas and suggested we urgently go to the Whangarei Hospital Emergency Department. Off we went.

After a few hours at the ER in Whangarei, we were redirected to Starship Children’s Hospital in Grafton, Auckland, for observation. So, mum and I got back in the car, and she drove the tedious three and a half hours to Auckland.

Once at Starship, I was admitted to the gastroenterology ward. They put my mum up in the local Ronald McDonald House–a place where the families of sick kids can stay and find respite from the hospital atmosphere.

Many doctors came to visit me, to poke and prod, and ask questions, trying to narrow down potential causes and what diagnostic procedures were necessary.

After some time deliberating, the doctors took my mother aside to speak to her privately. She was told that the likely diagnosis was Inflammatory Bowel disease; Ulcerative Colitis or Crohn’s disease, but at worst it might be leukaemia or another form of cancer. They wouldn’t know for sure until an endoscopy and colonoscopy were performed, and the biopsy results analysed. She was warned to be prepared for a major change in our lives. Though my mother was falling apart, she hid it well and miraculously kept most of her composure whenever she was around me.

I remember preparing for my first colonoscopy. The colonic preparation laxative drink they gave me aggravated my throat and stomach to no end, and my poor bum was on fire as my body tried to empty itself of everything in my digestive tract. This left me feeling even more wretched. After three days of prep and nil by mouth, the day of the procedure arrived, and I was wheeled off to the surgery floor.

Coming to after the procedure I had a terrible stomach-ache. I could feel all the air stuck inside me they had pumped in, in order to view all the nooks and crannies of my intestine and colon. I hobbled to the loo, still slightly dreary, and bore down, trying to get the air out. As much as I tried, it would not budge. I had to go back to bed and stop thinking about the uncomfortable fullness in my belly and wait for it to pass on its own.

A few days later, we had results. The biopsy and photos taken on the 1st of April 2008 showed that Crohn’s disease was rampant throughout my entire digestive system. I would need to be put on a first line of medication, and increasingly potent medications, if that proves unsuccessful to bring my condition into remission. We would also have to learn about and consider the need for surgery and living with an ostomy bag if medication wasn’t working sufficiently. The doctors explained how Crohn’s disease manifests and how it would affect me for the rest of my life. Crohn’s Disease can go into remission, they said, but there is no cure. I was advised to take several weeks off school and horse riding while I adjusted to the new meds and let my body heal.

That same day, I was prescribed an iron supplement to combat months of blood loss and to help remedy my extreme fatigue. They started me on an anti-inflammatory medication called Pentasa (Mesalamine), but I couldn’t swallow the damn pills! On placing one in my mouth and adding water, they would crumble and turn into a floury mush. When I tried to swallow, I would choke and subsequently cough them up. I spat up three of them while attempting to get even one pill down. I gave up and cried to mum. She got frustrated with me and said I had no other choice but to take them! Our emotions from the whirlwind of the past week leaked out. I cried. She cried too.

A nurse came to check on us, and I explained my problem. She sympathised and chuckled a bit before explaining that it was actually a common issue with Pentasa. Mum and I looked at each other with both relief and guilt. The nurse explained that I needed to place them in my mouth with a small sip of water first, swill them around waiting for them to break up and then chase down with a big gulp of water. Well, that did the trick.

After a few days being monitored, I got used to the pill taking, and the doctors were happy to discharge me to ongoing outpatient care. In the end, I had spent around two weeks in the hospital. Now I could finally go home to recover. But home to what kind of life? The life of a sick kid.

∆

The first few days at home were spent in a mild state of shock, questioning all that had happened to me. These pills that I took daily, I would have to take for the rest of my life. I was weak and easily exhausted, as if my life force had been ripped away from me. It felt like a bad dream I couldn’t wake up from. I spent several days recouping at home and so too did mum; she was physically, mentally and emotionally exhausted. My dad and sister were just as forlorn and distraught. We were all unsure of exactly what this diagnosis meant.

No one could have predicted what was in store for us just around the corner. Less than a month later, on the 29th of April 2008, I would be back in hospital complaining of a new pain.

Chapter 3 - Pain

What was going on with my body? Why was I developing new symptoms? I felt like I was getting sicker and sicker, even though I had begun treatment with medication meant to ease my illness. Yet, only one week after leaving the hospital, I started experiencing headaches, body aches, a fever, and an occasional cough.

Another week passed when large itchy red lumps started to appear on my legs. The lumps were hard, hot, and insanely itchy! Imagine a mosquito bite. Now imagine that bite being five centimetres wide. Then a deep dull pain crept into my shoulders, back, and chest. This pain worsened with every movement, and every breath, big or small. As the pain amplified and became sharper and more consuming, I was forced to take very shallow breaths as filling my lungs like normal hurt too much. My breath also smelt putrid; brushing my teeth and tongue did little to abate this issue. All these symptoms, including the original Crohn’s symptoms, worsened drastically with each passing week, so I was ordered to Whangarei Hospital.

There, I was admitted to the children’s ward. My blood was drawn, x-rays of my chest and bowl photographed and multiple doctors visited, taking note of my symptoms. I struggled with each breath but answered where I could, or left it to mum to explain on my behalf.

My body wouldn’t let me lie down comfortably to sleep. So I sat awkwardly, napping while sitting up. When I needed to sleep longer, I would bend forward over a tray table. No position was comfortable, but this bent position was the least painful of them all.

Every doctor, and their student intern, came in to see the phenomenon that had appeared on my legs. One doctor even asked permission to photograph it. I obliged, though I felt like a mannequin on display. I was overwhelmed and exhausted. I just wanted them to leave me to rest and give me some pills to lessen the pain…