At the age of 19, one of my first clinicians remarked to me, “someone so young should not have to suffer living with something like this”. Had he the foresight of what the next 5+ years would bring, then he may have held his tongue.
Since January of 2018, I have undergone two major life-changing surgeries — one to save my life, and the other to give me a new one. At some point in the preceding years of my life, something saw fit to bestow upon me a future of uncertainty, anxiety, and ultimately crippling emotional toil. Throughout it all, I have been exposed to the spectrum of emotions that arise when you are at the depths of your despair, right the way through to the elation one can only experience at the (occasional) reversal of such misfortune.
My experience is one that many will never have to endure, but some may eventually be stricken by. This is a story of how our bodies will sometimes betray us, a thousand stabs in the back culminating in both physical and emotional pain, it’s a wonder who it believes it is trying to protect. Chronic illness affects us in many forms, some not so serious such as hayfever, and others rather more severely — Crohn’s disease in my case.
On a cold and bleak week in January two years ago, I nearly lost my life as a result of complications courtesy of Crohn’s. Seemingly out of nowhere, I experienced a blockage in my bowel which prevented me from swallowing any food or water (anything that went in inevitably came roaring back out). It was only when on day 7, now in a state of delirium, I went to wander out of the house at 8 pm to head to work and my parents who I lived with at the time stopped me. With my sanity clearly starting to slip, an ambulance was called. When in the hospital later, it turns out I’d managed to dress for work twice — all sense of normality abandoned me that week.
Over the course of those 7 days, I dropped 16kg, and by the time I made it to the hospital, I was handed 48 hours to live. While induced in a coma to prevent a now-delusional me from pulling out the tubes which were keeping me alive, the decision was made to operate and remove the section of my gut which had proven to be more stubborn than a mule. Despite dropping to 47kg and surviving only through nutrients delivered by even more tubes, I was fortunate enough to win my battle.
Any form of surgery, no matter how minor or major, is an incredibly solitary experience. No volume of friends or family waiting on the other side can smother the feeling of angst rising in the pit of your stomach as your trolley is wheeled through the whitewashed walls of a hospital. In this place, everything is so impersonal — an unknown. The nurses and doctors charged with your care are no more familiar than the receptionist who signed you in at the front desk. Everything lies in the hands of the surgeon you have been assigned (or chosen if you are lucky) and your body’s ability to adapt to such brutal, drastic change.
Once I started to come around, I was pumped to the hilt full of morphine. Initially, I felt as though I was floating in a bubble, completely detached from the horrors which awaited me when the dose finally subsided. For this first recovery from surgery, my memory has been obliterated courtesy of a mixture of extreme trauma and a medically-induced coma. It appears the human body has at least one way of protecting itself. What it could not protect me from was the situation laid bare when the bubble burst.
In those initial days as I regained consciousness and composure, I was unable to talk or even hold a pen in my hand. And yet, while my memory had erased the moment when I’d discovered the trauma my body had undergone, the physical evidence still existed. My poor mother was using pen and paper to communicate with me in my half-conscious state having endured her own tumultuous 48 hours. A week later, I received this now unfamiliar scrawl. Here, scribbled on a scrap of paper I wrote; “what? They did what to me???”. Even to this day, that moment of discovering the truly life-changing extent of this experience still feels completely alien to me. The brain can be truly remarkable.
My delirium was still so profound that even with an NG tube stretching from my nose down to the pit in my stomach, I nonchalantly sent a selfie to my close friends. Some had heard of my predicament on the grapevine, whilst unbeknownst to me, others were unaware of what had happened. And there I was casually sending a photo, 16kg lighter, eyes gaunt from the ordeal with my thumb up and a caption; “I survived”. When the startled replies started to flow in, it was only at that moment the penny finally dropped and I realized the gravity of the situation I was in.
With one hurdle clumsily cleared, malnutrition robbed my body of a fighting chance to heal the initial wound after my stomach was sliced open. When this happens, the only way I can describe it — it resembles a pork loin roast when you cut the strings holding it together. This left a gaping hole, measuring 20cm long, 7.5cm wide and 1cm deep that would leave scarring that better resembled a patchwork quilt. Recovery from surgery of this type usually takes around 3 weeks — for me, it would take 3 months.
In addition, having surgery on your gut has an added caveat — your core muscles will be decimated too. I’d only had the strength to sit up in bed for the first two weeks, meaning that most of the muscles in my legs, arms, and core had miserably withered away. Never has getting out of bed proven to be such a challenge. A strew of unfamiliar nurses would remind me daily of how walking would help my recovery. All I could do was laugh and wonder how on earth a few laps around a hospital ward could possibly hope to help heal such a grotesque hole in my stomach. And yet, I summoned all of the strength I could muster, and whilst clutching the drip stand as a walking stick, I waddled like a penguin around the ward for the first time in weeks. But completing those laps was a victory. For me, it was the first taste of victory which I had experienced in some time.
How much those walks aided my recovery I don’t honestly know, but it took three months before I resembled anything I would consider to be normal. However, I felt revitalized when the light at the end of the tunnel was finally in sight. To come back from the brink truly felt like the greatest victory. The most valuable lesson I learned in those fateful few months, was that pretty much anything else that life could throw at me would never be as traumatic, depressing and utterly devastating as that January.
Friends and family, fortunately, were always there to lend their support to me. I feel selfish saying it now, but at the time it meant very little as I was consumed by the fact that the world was continuing on without me. I knew even then that my body would take years to heal completely. My mind too, potentially even longer. All I knew, was that I would heal eventually — and I would be ready when that day came. I am no longer the same person I was pre-2018, but I am thankfully not the shell who lay on that hospital bed unable to grasp a pen between my fingers. Having come so close to losing everything, I promised myself there and then that I would do whatever I could to prevent it from happening again — regardless of the fact that this is ultimately out of my hands.
Who I am at the core changed that day. One single promise to myself was apparently all it took to begin a snowball effect. My mindset changed drastically after the initial surgery, and the reversal of my stoma would only reaffirm my belief. Before, it was all too easy to push things aside with a reminder that “there’s always another time”. But having been so close to seeing that timer run out, the excuse has never worked since. Deep inside me, I know the clock is now very much ticking down to when this happens again. With any luck, it will be an extremely long time before it does.
For the past 12 months, I have been fixated on how can I prevent myself from being in that situation again. What can I do to fight this better if I get backed into this corner again in the future? And if this happens again, what can I do so that when I look back I will think; “that was a life well lived”. Both mental and physical recovery takes time. What I realize now, is that the most important thing is how you spend your time as you heal. Had I spent hours obsessing over what could have caused the obstruction, or cursing why I had been one of those unfortunate enough to suffer from chronic illness, then I may never have recovered. Instead, focusing on the present and the future not only helped to alleviate stress and energize the healing process, but it also enabled me to grow from that person who was once stricken on a hospital bed.
As of May 2020, I feel mentally healed from the experience. Almost losing everything gifted me a new perspective on the world. Rather than allowing it to drag me down, I hoped I could use it to fuel a brighter future. Make no mistake, the gaping hole in my stomach, the whitewashed walls of the operating theatre, and the undiscernible reek of the corridors will forever remain etched in my mind. But the past is exactly that, the past, and we should never allow it to prevent a brighter future. It’s clear our experiences shape us, the only question is whether we allow them to trap us in the past, or harness their energy to push for a positive future.