I had my first seizure aged 20, having never succumbed to anything more than a flu prior to it. To say it ‘felt’ surreal would be a misnomer; I was completely unconscious during, and it took several hours for my brain to reboot, so I remember only fragments of the immediate aftermath. This event kickstarted my 7-year relationship with epilepsy.
My seizures were tonic-clonic, meaning they were more intense and lasted longer than most. I remember early on a doctor described my epileptic seizures as a massive thunderstorm in which all of my neurons were firing at once, causing a crescendo of muscle spasms, screaming, and biting, eventually dissipating to calm levels. The immediate aftermath always bordered on insufferable. The convulsions brought on nausea that no stomach bug could match. It lingered and wouldn’t allow one to simply throw up and be done with it. Every muscle was strained in some way, even my eyelids. It was such an effort to do anything. I would get up to vomit, and flop back down in agony. Speaking was tortuous as my throbbing and perforated tongue would swell larger with each word.
After a lengthy stay at the Epilepsy Monitoring Unit (EMU), they diagnosed the cause— A Dysembryoplastic Neuroepithelial Tumour (DNET). These were very rare, representing just 0.2% of brain tumours in adults, but very curable. They put me down for invasive surgery of the right frontal/temporal lobe to remove the walnut sized tumour.
Given the pain these seizures caused, one would be forgiven for assuming I embraced the recommendation for surgery; I didn’t. It seems crazy to me now, but I felt the risks didn’t outweigh the benefits. I had convinced myself that I had struck an uneasy but manageable balance between the seizures and normality. Surgery scared me; a one percent mortality rate seemed too deadly to me, and given my luck, I’d be one of its victims. There was also a strong chance that I would need lengthy rehabilitation afterwards, which given the location of the tumour would involve learning to use my left leg again, as well as lengthy speech therapy. I had just finished the second year of my B.A in English and Classics, and felt any delay would be an unnecessary inconvenience. Eventually, common sense prevailed, and on the 22nd of December 2017, I agreed to have the surgery.
As I emerged from the surgery consultancy, I felt relieved, I’m sure of it. But clearly, somewhere deep in the bowels of my sub-conscious, I wasn’t. The regularity of my seizures increased drastically, owing to the fact that stress and anxiety were prime triggers. Sleep depravation was another one; for the 6-month build-up to surgery, I can’t remember having a full night’s sleep that wasn’t induced by seizure. I feared having an episode on campus, so any night that I didn’t sleep, I would stay at home. This meant I had to defer everything from that semester, which brought on yet another trigger, depression. This never-ending loop of trigger and seizure left me in a dark place as I checked in to the neurology department on Sunday the 20th of May 2018.
My surgery was scheduled for Tuesday the 22nd. I was terrified. In the early hours of Monday morning, a nurse came in and told me I had to fast for surgery, which had been brought forward to 9a.m. that day. The lack of forewarning actually suited me. Those few hours I was in a state of nervous excitement. I felt like an inmate enduring the last few hours of death row. They reiterated the risks involved and made me sign what were presumably waivers. I chose to think positively. Afterall, whatever was to happen was now out of my hands. I eagerly waited the call. To my immense disappointment they pushed it back, not to Tuesday, but Thursday. I had set my mind on a brief hospital stay; one in which I wouldn’t have time to contemplate my fate. I usually acted politely to nurses and doctors, but due to my immense disappointment in the moment, I refused to speak.
The days rolled by slowly. Despite my fairly regular frequentation to hospital wards, I still harboured fear and loathing for them. On my second night, having noted my symptoms and triggers, the nurses moved me to the intensive care unit, which was occupied primarily by elderly people recovering from neurosurgery. They scared me. Their operations went relatively badly, and doctors would filter in and out telling them of their failure to remove the tumour, or of the minor strokes they suffered. Had I taken a moment to recognise these were mainly age related, I would have taken it better. It seemed every consultancy involved the doctor apologising, and telling them that anything above 85% tumour removal was considered a success. I resigned myself to their fate.
I had become so frustrated with the wait that when the time had finally come, I didn’t care as much about the result, I just wanted to get it over with. They wheeled my bed towards the surgery in eerie silence. They parked me just outside the surgery room. Next to me was a man in his early nineties who was awaiting a hip replacement. He told me he had been waiting for so many weeks that he had lost count; which made me feel like a whiny moron for complaining about a couple of days. He had been outside surgery for a couple of hours when I arrived, and seemed surprisingly content. Then, a young nurse came up and told him the bad news. She had forgotten to take a blood sample from him, and that his surgery would have to be delayed once again. This compounding of misery, though accidental, seemed so cruel. He said it was okay before they wheeled him back to his ward.
They stuck a bunch of tubes in my arms and told me to count to ten; I think I reached three. The surgery itself felt almost instantaneous, like closing one’s eyes and falling asleep for a few seconds, before waking abruptly. Words cannot describe the euphoria I felt afterward. They did multiple cognitive and motor tests, all of which I passed without incident. I felt no different than before. It is hard to imagine a surgery going as well. It almost felt like I was dreaming as the doctor constantly reiterated how lucky I was. I would need no rehabilitation, and they had successfully removed 100% of the tumour. All the little concerns, like the inevitable scar or the lengthy healing period, melted away. I thought I would at least have some sort of vegetative period after surgery, but I was on the phone within minutes.
I feel lucky knowing off-hand what the best day of my life was, and take comfort that the build up was so shrouded in misery and fear. Why, you might ask? Because it made my recovery more emotional, more important. It gave me a renewed drive to do things I had forsaken as impossible. It also made me appreciate those who suffered with me. I still technically have epilepsy, and I still have issues with the medication, but it all feels so much more manageable knowing how truly lucky I was, and continue to be.