“She’s just a fussy child”; the official diagnosis of my doctor when I was age 4 and had stopped eating. This carried on for a further 3 years before I was finally diagnosed with Crohns Disease. The following year I was admitted to hospital with internal bleeding for two months.
For the greater part of my childhood I associated food with pain. Food caused me so much anguish, between trying to find foods that didn’t hurt me and then suffering the consequences of eating the ones that did, there came a point where I just stopped eating much altogether. I became clinically anorexic, and was treated accordingly. In conjunction with failing treatments of my disease, I was hospitalized for weight loss on numerous occasions. Unlike the other adolescents that I was sent to group therapy sessions with, I didn’t have a fear of gaining weight, nor did I have image perception issues, no excessive exercise regimes, I was just scared of food for the pain it caused. I was 11 years old when one of those admissions to hospital went terribly wrong. My internationally renowned professor had bought a new treatment back from America and I was his lab rat. The first person in Australia to try this treatment after great success overseas. I reacted poorly to the treatment, but my professor refused to acknowledge its failure on me. He needed this to be successful for his own reputation. He kept persisting and persisting, no matter how much I pleaded with him to stop. Three weeks in the nurses told my family that they should consider saying their goodbyes to me. I asked my mother to discharge me against medical advice. Had I of died, she would have been charged with manslaughter. I look back on that decision and can’t begin to fathom what that would have been like for her. Yet, she made it seem as though she didn’t even give it a second thought.
The damage from that admission lead me to my first of many major surgeries and another three month life pause in hospital. I remember being told that surgery was no longer an option. I wanted to crawl away from the world and hide. Being told at age 12 that the damage to your body was irreversible and, consequently to rectify it was going to impact on the rest of your life, seemed like a lot to take in at the time.
It was suggested to me by numerous people that I should seek legal advice to take action against the treatment of my previous doctor. When I finally decided to speak to a medical negligence lawyer, I was almost immediately told not to bother. My doctor was part of the “boys club” that is the Australian medical board. They would never give a fair hearing and would always protect him. Due to his position and reputation in the field, no one would ever testify against him. Despite everything I had personally experienced with my health, this was my real wake up call to the injustices in this world. This was when I lost a lot of my young naivety and started to see the world in a different light. I realized that I needed to stand up for myself in this life, that if I didn’t, other people would continue to dictate my life and insist they knew better. And I’m way too fucking stubborn to lead that life.
My teen years continued as ebs and flows of good health, poor health, small amounts of weight gain and substantial amounts of weight loss. Inevitably this meant back to the hospital with feeding tubes stuck down my nose, group therapy sessions and more food that made me sick. It was a vicious cycle that no one seemed to understand. At age 16, my doctors were coming to a stand still as to where to go with my treatment. They called a meeting with all of my specialists from the 6 different teams involved. Generously, they let me be included in this meeting about my own body, which rarely happens. My newfound sense of self had well and truly had enough. Sitting in that room listening to them talk about my life like it should have been as simple as reading from a textbook infuriated me. I stood up, interrupted them and bluntly told them that this was fundamentally the entire issue with the medical system. “My existence is not a page in a fucking textbook! This is my body, it’s evidentially not like the standard cases you treat, yet you don’t listen to me, you don’t consider everything I am telling you about it and you don’t seem to be paying much attention to the physical evidence in front of you. Diet is very obviously the source of the issue here, yet you persist with shit that isn’t working, and a few months later your suggestion is we try the same thing again. You have a medical degree, start fucking acting like it!” Needless to say, this wasn’t received very well and that afternoon I was forced to see a psychologist.
The next meeting my doctor decided to turn it back on me. “If you think you can treat yourself with diet better than we can, we think you should”. He gave me a dietician and a weight goal. I had to make it to 34kg before I was allowed to go home. And I managed to do it. And it felt fucking great, purely to prove my point. And was a moment that really solidified to me what I wanted to do with my life. I wanted to do what I had done for myself for others who didn’t feel they could stand up for themselves.
My young adult years didn’t get too much easier. At 19 my health took a major turn and I was riddled with infection. I was taken in for a standard scope procedure to identify exactly what was going on. In that procedure my specialist perforated my bowel. I was so gravely ill I was unconscious in intensive care for two days until I could be scheduled in for surgery. This surgery, however, became a really positive turning point for my health, and, despite being a traumatic surgery with a very long recovery period; my Crohns seemed to go into remission for the first time in my life.
At 25 my specialist thought it would be a good idea to do another scope, as a routine check up. Of course, knowing my luck, there was nothing routine about it. He managed to perforate my bowel, for a second time. Once again, I had emergency surgery to repair it, however the repair wasn’t done correctly. About 3 months later I started getting this awful pain in my back. It got progressively worse and I ended up in an ambulance to hospital once again. It turned out that the surgery was done so poorly that I had developed numerous severe infections in my pelvis. Due to the complicated nature of this situation and my pervious surgeries, there wasn’t much choice but to treat it very conservatively. However, conservatively meant an eight month period of being in and out of hospital every other week and a lot of painful drains, weekly MRI’s and other invasive procedures. This all resulted in surgery anyway, but I always appreciated my new team of doctors for their compassion and acknowledgment that this was my life, I ultimately had to make the decisions for it.
My greatest fear about dying was not death itself. I was not scared of pain, nor what may have been beyond my mortal life. My fear was what my death would do to my family and friends. The people whose love was unrequited, whose loyalty was unwavering and who cared about me more than the definition of the word does to explain. I had seen the pain they had endured by standing beside me and being a part of my journey. I knew that the only thing that would hurt them more than being on that journey with me would be it’s end.
My parents are incredible humans. They are two of the most resilient and courageous people I know. I hold so much guilt for putting them through what they went through. I couldn’t fathom what it would be like to be in their shoes with a child who, for a lot of the time, had a question mark over their existence. To this day I continue to feel incredibly guilty for the pain I had caused them. I wish they knew how sorry I was.
You get to a certain age or stage of your life when your perception of death changes. The preconceived notions and facade of death start to break and fall away and you realize that the hardest thing you’ll ever have to endure is really just life itself. I had no concept of death as a child. I feared it more than anything else, but never once did I genuinely think I wasn’t going to live. I was always so determined that I was never going to let me health stand in the way of me living my life. I’ve always done my best to not be a victim of circumstance. In some sense I don’t think my life would have been that much different today whether things had been different with my health or not. What my health did for me was make me acutely aware that no matter what happens to you in life, time doesn’t slow down for you. Don’t expect it to. Live with a sense of urgency, because when your time does finally come to a stop, you won’t get it back.
Words by Stephanie Jane
Photography by Lila Marvell.