In 2013, a doctor told me I had reaped the fruits of a postcode lottery. My prize was awake brain surgery at a top London hospital, by no less than a world-leading neurosurgeon.
My path to the operating table began on a morning commute to my first ‘proper’ job, as my right foot — still on the accelerator — started tingling or something inexplicably similar. This sensation morphed into a surge of electricity that whizzed up the entire right side of my body — just what I imagined a stroke to be like.
I came round groggy and confused in a moving ambulance, as a green giant of a paramedic reassured me that I had managed not to crash. As we arrived at a hospital, he rolled my stretcher out to pass me off to emergency staff. Who checked my stats. And after a routine CT scan, I was sent home, shaken up but somewhat confident I could brush myself off and carry on. Until days later, when a neurologist called my mobile phone to speak to me herself.
She had cleared her diary to talk to me about my results.
Sitting with her, listening to my diagnosis was like a very ironic out-of-body-experience. I noticed her pausing between each new sentence, scanning my face for signs of a reaction. I bore no tears, not much emotion, and had even shown up solo, choosing to place my fluffy bag on the pitifully empty chair next to me.
But, lo and behold, I learned I had brain-tumour-induced epilepsy.
Her kind voice echoed in my numb ears as she told me of a newfound grade 2 pilo astrocytoma. It was “two inches above the left ear, and about the size of a grape”. I wondered how the divine fruit family came about as metaphors in her world. Our world? And if it was a large grape or a tiny flavourful one, like they stocked in Whole Foods.
She continued, and I felt the twist of a dagger when she told me I must stop driving. From now on, I was to attend regular functional-MRI scans, so the tumour could be urgently “acted on” (operated on) if it appeared to “develop” (grow).
As I floated home, I stopped to collect a prescription she had written up. A stout pharmacist grabbed it without looking up, and my eyes followed as he darted around, piling up bright yellow boxes. The paper bag he placed them in grew too large to fit inside the one I had brought along, so I clutched it under one arm.
I suddenly felt well-equipped, but alone and deeply sad, too.
The next morning, I dutifully swallowed my first set of pills, and felt my heart break as I walked passed my shiny car which had been brought back to the driveway. Now, I had to take public transport: if I got a seat, I felt it was gained by not one but two beings, me and my tumour; and if I had to stand, I would scan other passengers, wondering if they really needed to sit down. And so, a world of invisible conditions opened up to me, of potentially ailing people among us.
Soon, the effects of the anticonvulsants kicked in.
Each journey and day became harder than the last. Weekends were no different. My condition began to haunt me like a lead shadow, so difficult, extremely tiring, and much too much to be able to escape from.
Whilst my pills were meant to reduce the likelihood of further seizures, the side effects dulled my entire brain. I recall having lain down to read a book and giving up as I was unable to lift my own head or hands to see the pages. So pitifully and literally was I under the ‘medicine’s’ command that by the time they wore off and I got myself going again, it would be time for the next dose.
Like a valiant crisis negotiator, I attempted to bargain with my neurons, pleading with them to release me as a hostage. But I was held at infernal ransom. I kept having more seizures. And each increase in dosage and experimental change failed.
My life to date felt like a fallacy. Before, I had studied diligently, as I was told I could be whatever I wanted if I just passed everything, so I aced it. A month earlier, I bought my car straight out of the showroom, fully customised, to enjoy it. And I had planned to work abroad, to learn a language and help the less fortunate for free or on low pay, until I truly made it. But the reality was that my graduation certificates mocked me from my own walls, the teenager who responded to my AutoTrader advert drove away with a huge grin, and I couldn’t get the right insurance to work abroad.
So, I retreated into the world of the internet: Google searches, journal articles, fiction, anything I could access about my new condition, and the people I shared it with.
It turned out, 50 million of us existed worldwide!
But global parallels ended there.
80% of people with epilepsy live in majority-world countries, with a rate of diagnosis up to two times higher than anywhere else. The reasons behind this? Many things that influence the brain’s activity, including malaria, parasitic infections of the central nervous system, higher incidences of road traffic injuries, and birth-related impairments.
But what struck me most was that many, if not all, of these life-sentences were preventable. And like me they could have been tested to see how they responded to inexpensive daily medication.
But their local health infrastructure just wasn’t serving them in the way mine was. And there was a prevalence of antiquated belief systems in many of their communities, which put their safety, comfort and happiness at risk, too:
- In many African countries, epilepsy is considered contagious and caused by supernatural powers
- In Pakistan, a study showed that women with epilepsy often believed they were dangerous, and encouraged others to avoid them
- And in Brazil, higher perception of stigma by relatives of people with epilepsy has been shown to correlate with depression and significantly reduce quality of life
Interestingly, I felt I could relate to upsetting experiences of my peers from afar, too. How? I felt shame at my condition, keeping it a secret from many in my close circles. I avoided those who’d seen me convulsing, as I could only recall the look of ghastliness in their faces. And I fought shy of disclosing it on job monitoring forms, in case it concerned whoever might read it.
Whether I was stigmatised or self-stigmatising is something to be pondered, because though things had come a long way in the UK, they still didn’t seem smooth-sailing and there was little public awareness out there. I know, because I didn’t even understand epilepsy until being diagnosed myself, either.
But one thing was clear.
My NHS experience was bang-on.
Sure, medication was not working for me, appointments were often delayed, and staff seemed swamped. But I was taken by the hand, confident in the infrastructure around me: I attended world-class clinics, used the multi-faith chapel, pondered joining online communities, and had open conversations with medical experts.
I even told another neurologist what I thought had contributed to or even caused my plight; from malaria medication to toxic cleaning products, and mobile phones to stress. A discomforted yet crisp posture remained in him whilst his eyes waited for mine to stop darting. Then he proceeded to reel off sentences… about science or research, and definitely “no definite answer”. I’m sure both of us hid our respective winces until we parted ways.
Regardless, and in time, my tumour grew and continued to put an oar in my daily life; I was stuck in a job I hated for fear of more unknowns if I left, I couldn’t trust my body enough to go out without ‘consequences’, and struggled to focus my mind at all.
But my turn came. More than seven years after diagnosis, I got my golden ticket: critical brain surgery.
I was finally allocated my own neurosurgeon.
We first met at a clinic, where he was surrounded by a gaggle of medics. It was something like meeting a celebrity. But after what felt like TMZ style red-carpet introductions, he let off a missile:
“I need you to be awake during this operation”.
I was shocked, and suddenly hyper-aware of the gaggle, with their simple smiles that screamed something between knowing they were uninvited, and acting as my cheerleaders. But the more he explained, the more I understood. Because being awake meant I could respond when he would cut near brain tissue that needed to be preserved, and I could help limit my own neurological damage.
It was a ‘no-brainer’, a chance to return to as full a life as possible. And so I jumped in.
On the morning of my surgery I recall being very hungry and disappointed that I wasn’t allowed to eat. But my priorities quickly changed when a young porter arrived to wheel me away. And just like that — with a heightened sense of embarrassment thanks to a gown I wasn’t sure covered everywhere, and a new shaved patch on my head — I said goodbye to the few I knew truly loved me: my father, two siblings, and a cousin who flew all the way from California the night before.
I disappeared through the swinging doors.
After I was reminded what the procedure was, I was sedated so that my skull could be cut open and my brain accessed by the surgeon. But when I was brought round again, I had some of the greatest banter I had ever experienced. It was either because I was on fire with my conversation, or perhaps because I was incredibly high.
The feeling was at its peak when I could hear the scrubbed up team laugh at my jokes, when I noticed them in something of a ballet as they carefully attended to me, and when I sensed their laser intention for me to be better. And it was at its hardest when I was asked question after question — about my life, about the alphabet, about numbers, backwards, forwards, and moving my limbs — all the while knowing that a minor slip-up could cost me greatly.
When my surgeon was satisfied. I was put back to sleep and four titanium screws were drilled into me. And with my skull back in place, I was sent to heal, finally able to drink and eat again, and surrounded by very incredible nurses.
The entire operation had taken eight hours.
Whilst a multitude of cogs played their part in the wheel of my revival — from medics to chaplains, Macmillan nurses to charity fundraisers, personal trainers to friends, and family to the occasional stranger — I had no doubt that the publicly-funded healthcare system that I was born into was paramount in the equation.
The UK government had somewhere down the line pledged to protect its citizens with free healthcare, through taxation. Perhaps I’d pay back the cost and much more soon after? Nonetheless, it had won my heart.
I soon found out my operation was a total success. My seizures disappeared immediately, I wasn’t debilitated, I could wean off the drugs, I would soon drive again, swim safely, go out without finding myself unconscious. I was free!
But, I remained hyper-conscious of my medical privilege.
The NHS had proven to be my elixir.
It had offered me the same surgeon who operates in top private London hospitals, let alone a free-at-use service. And it opened a window many of my global contemporaries wouldn’t imagine coming about for them.
Even in generations to come.
Xavier was a 12-year-old boy who I later met on a work trip to Kenya. He lived with his mother in Kibera slum, and she told me he started suffering from epilepsy when he was just two. Even though he was sent to school, he’d have up to five seizures a day, with each new one meaning he missed more classes. Other children avoided and bullied him. And she ended up pulling him out of school so he could be alone at home.
Though Xavier’s government did have provision for some of its poorest citizens to access free healthcare, he had fallen through the cracks. And it wasn’t until the headteacher of a new inclusive school intervened that he and his mother trialled a medicine that was then found to reduce his seizures — 10 years after his first one. Today this means he’s safer, but it also means he has almost uninterrupted access to his education, and so less chance of falling into further financial hardship or abject poverty in later life.
A win, right?
As I write this, I understand the UK universal healthcare system has its limitations and inequalities. For example, my own postcode meant I was treated at a treasure of a brain institution which was within commutable distance, compared with someone else hailing from a less accessible part of the country. But, while our government strives to maintain what we have available for everyone, I hope that others are sincerely working on their own version that’s within everyone’s reach.
A lottery of birth isn’t the answer. For it’s against the advancement of humankind, and I can’t share my winnings with those who are equally worthy of them.
Yes, it might be another hurdle to consider on the long-list, after having nailed clean water, sanitation provision, epidemics and even corruption, but the rewards are clear. And, at the same time, the UK’s contribution to the global health development movement remains vital.
Because a lottery of birth isn’t the answer. For it’s against the advancement of humankind, and I can’t share my winnings with those who are equally worthy of them.
For the original article, follow this link https://medium.com/@storyshikari/when-i-won-a-global-healthcare-lottery-66cd5d1ecd25