A story from Be in the Change’s founder, Niki Rust, on how struggling can reveal who we really are and what is important to us. Warning: this post contains content that some may find disturbing.
Thinking back, I believe I’ve always been a fighter. From the moment I entered this world, I was met with adversity. Arriving nearly four weeks early, attached a non-functioning placenta, I was a hair’s width short of being a stillborn. My father recalled the first time he laid eyes on me: a tiny, bluish-white mass, barely breathing. At 4 lb 2 ounces (1.8 kg), I was severely underweight and had not been receiving enough food or oxygen through my umbilical cord. The doctors presumed me to be a lost cause.
But against the odds, I miraculously began to breathe. I was then swiftly connected up to an oxygen tube and placed in an incubator, remaining in the hospital’s premature baby unit for a fortnight until I was strong enough to go home with my parents.
That was the start of many times in which I had to fight to survive.
On the first day of my PhD at Reading University, approximately 22.5 years after being in an incubator, my world changed.
It was a gloomy, overcast early morning in late September – typical weather for south-east England at that time of year. Sleepily, I began a nervous journey along the residential back streets of Reading, heading over to the university campus for my first day of inductions. It was a big day: I was about to begin a three-year joint PhD in psychology and pharmacology to understand more about our appetite. In some ironic twist of fate, my own innards had other ideas about how this journey would pan out.
Part-way along the walk, I began to notice a pain in my side. At first, it started as dull ache radiating from my left lower ribcage though, as I got closer to campus, the pain slowly became more and more intense, creeping towards my stomach and around my back. Initially, I thought perhaps I had not let my breakfast go down properly before heading out for the day and I ignored it. But as the minutes ticked by, the pain got worse. As I arrived to the building that housed my first university induction event, the realisation dawned on me that I couldn’t make it into the room. Collapsing under a stairwell, I began to hyperventilate in agony. Not knowing what was wrong, I phoned my PhD supervisor who speedily came to the rescue. Thinking I might be suffering from a severe panic attack, he swiftly called an ambulance.
I don’t really remember much of what happened next. My next memory is of me propped up in a hospital bed at the Royal Berkshire Hospital. I felt sleepy – very, very sleepy. My pain had mostly subsided. “Great,” I thought, “maybe it was just bad indigestion after all. But goodness, do I feel tired”.
Then, a young, friendly nurse hurried to my bedside, smiled, and explained that my test results had come back. I thought to myself “When did they take my blood?” I had no recollection of this. The nurse told me there was bad news – I was having a pancreatitis attack. At the time, I had never heard of pancreatitis. I knew what my pancreas was – a vital organ to the side of my intestines and just behind my stomach, having a critical role in digestion and regulating blood sugar. However, I mistakenly thought pancreatitis was perhaps similar in its seriousness to tonsillitus so, armed with some good medicine, I would be able to go home now.
I was wrong. Very wrong. Severe acute pancreatitis has a mortality rate of 20%, meaning for every ten patients who succumb to the disease, two of them generally die. The disease occurs because the chemicals that are produced by the pancreas to break down food – known as enzymes – do not exit the organ and instead stay inside the pancreas. Unfortunately for those suffering from this affliction, your body’s enzymes do not know the difference between food and you. So the enzymes begin to break down your pancreas. This is what causes the crippling pain in your side – you are, in effect, eating yourself.
Entirely ignorant to the seriousness of the situation, I naively asked the nurse “So when can I go home? Later today?” Shocked, the nurse replied “Oh no, you are going nowhere, young lady. You are very ill. You will be here for some days.” I replied “But I feel alright now!” confused as to why they would hold me captive when I didn’t feel too bad anymore. The nurse glanced down to my arm, pointing at cannula sticking out of my arm connected to a drip – objects that I had only just in that moment noticed were attached to me. “That might be because of all the morphine we’ve been giving you,” she retorted. “Ah,” I thought, “maybe this disease is a little more serious than tonsillitus”.
I texted my parents and my PhD supervisor to let them know the diagnosis. Not having the energy to use my phone to look into what pancreatitis actually was, I was still at that point relatively unaware of the danger of the disease. The drugs kicked in again and I drifted back to sleep.
After an unknown amount of time (the concept of time seems to diminish when you’re given heavy doses of morphine), my phone rang. It was my PhD supervisor. Apparently he had been reading up about the disease and wanted to ask how I was. I was still relatively clueless about the gravity of the situation, being heavily sedated and on another level of consciousness. Ben, my supervisor, explained what he’d read about pancreatitis:
- Acute pancreatitis is rare, affecting roughly 30 of every 100,000 people per year
- Eight out of ten patients get pancreatitis either from gallstones or alcohol
- There are numerous dangerous complications, which can increase the death rate
It dawned on me that I might have to remain in hospital a while longer.
During my stay, I underwent a number of diagnostic tests to determine the cause of my affliction. I was young, otherwise healthy, a moderate drinker and not having any other symptoms of gallstones. My x-rays, blood tests and ultrasounds came back fine. After days and days being connected up to a drip delivering morphine, strong antibiotics, and fluids, I was finally released. Fingers crossed it was just a one-off and life would return to normal.
About 5 weeks later, the same pain in my abdomen returned. “Oh no, not this again,” I thought. Heading back into A&E, the pain became increasingly intense and I vomited numerous times, crippled over in agony. I was having another pancreatitis attack. My stay in hospital was similar to the last – nil by mouth, connected up to tubes, laying dormant for another week. Again I was finally released after doctors ran more tests and still couldn’t find the cause.
This process repeated another four times over the next year, interjected with further trips to the hospital for x-rays, blood tests, CT scans and consultant visits. I was so sick that I had to quit my PhD. More and more tests were taken with no better understanding of what was causing my body to internally digest myself. I became thinner and thinner, less able to digest food as time progressed. It got to the sobering point where I wrote a will and planned my funeral arrangements, devising a list of who would inherit my belongings and what charities would inherit my meagre savings. I had not even had my 23rd birthday.
It was during an endoscopy that the doctors finally found the culprit. A tumour. Approximately 2 inches long, found in my duodenum, the upper part of the intestine, at the entrance to my pancreatic duct. The doctors explained that the tumour sometimes covered the pancreatic duct, meaning that the pancreatic enzymes couldn’t escape, which was what was causing the disease. Whilst I felt some degree of relief knowing what the cause was – finally – a new wave of anxiety crept over me as the doctors explained that the tumour could be cancerous. They had to send it off for tests before they could tell, leaving me in a terrifying wait until we knew the results.
To the overwhelming relief for my family and I, the tumour was not cancerous. It was, however, a very rare type of growth never documented before in the scientific literature. So rare, in fact, that my medical team were planning on writing a journal article about my condition (if you’re interested, you can read it here, complete with rather gory photos). I never was one to follow trends.
Now we knew the cause, my doctors could now go about planning how to cure me. I would be booked in for surgery, where they would slice me open down the centre of my chest, creating a 25 cm incision. My abdominal muscles would be pulled aside, my intestines brought out and the growth cut with a scalpel. Thanks to the expertise of my medical team, everything went according to plan and the operation did indeed cure me.
The experience of staring death in the face at such a young age profoundly changed me. Witnessing the precious fragility of life is a deeply philosophical endeavour; you cannot help but come out of it a stronger, more resilient person. Since then, I’ve overcome numerous other challenges – some related to my health and some entirely unrelated. But the process of slowly dying over the course of a year has helped me overcome these struggles.
Struggling is tough – extremely tough – at the time, but it makes you tougher for it. I’ve witnessed people shy away from struggles, give up or try to find an easier road. But when there is no easier road – there is no choice but having to climb that insurmountable mountain in front of you – it is empowering to see just how strong you are deep down and how you can overcome the odds if you put your mind to it and have a supportive network around you.
It can be easy to look at a successful person and assume they must have had a free ride in life, where doors were continually opened for them. Whilst that might be the case for some, I think some of the most powerful leaders in the world are those who have sustained deep levels of adversity and survived, becoming a better person for it.
What has this struggle taught me? Life is short – desperately short for some. Don’t waste it. Follow your dreams, focus on what makes you happy and healthy. Don’t shy away from a tough challenge if that is really what you want. Embrace the adversity. Life is a gift – don’t abuse it. Look after yourself – and others around you. Surround yourself with people who lift you up rather than drag you down. And remember, the human body is a miraculous thing capable of doing things far greater than we usually expect possible. Push yourself because only then will you truly see what you can achieve.