Most of my medical history was unattainable over the phone, so I resorted to old WhatsApp messages. From these, I was able to ascertain it was March 4th 2016 when I was admitted to the E.M.U or Epilepsy Monitoring Unit in Beaumont Hospital. The average sentence was 8 days; mine was 20.
Whether rational or irrational, I had a fear of hospitals that extended back to my first visit sometime during the summer of 2011— when I was 20 years old. Nothing horrible happened during my short stay, but my mind was in a state of dysphoria. I had endured my first tonic-clonic or grand mal seizure. As this fugue-like state of otherness was the only lens afforded to me at the time, I remember everything from that day as though it were in black and white, with the odd hint of a dull pink from the hospital blanket. I remember thinking the nurse was a bitch, and have always represented her as such anecdotally, but given my compromised neurological state, I was probably just a difficult dick. She was wrong in her assertion that my weed habit had led to the seizure though, which was of small comfort.
After a couple of years of seizures, they finally diagnosed me with epilepsy. Epilepsy is an umbrella term that covers around 40 types of seizures. It is a disorder, not a disease. My seizures seemed to happen at random, with triggers that ranged from stress and anxiety, to dehydration. I could have them days apart, or weeks, or months, then BAM! I was very lucky with my variety of seizure; they were relatively rare, they usually came in my sleep, and I wouldn’t feel anything for the duration, which was around 5-10 minutes. Also, I never pissed or shat myself, (which is surprisingly common). The aftermath was the worst part. My tongue was always swollen from the biting, and every single muscle felt like it had been subjected to the most tortuous of exercises. My mind was always fucked, and I became aggressive. Even though I knew I could have another within a day, it always felt less likely, so after about a week of aches and pains, I’d feel good, knowing I might be in the clear for a bit.
They told me the basics over the phone. They would cover my head with electrodes to monitor my brain, and watch my every move with cameras 24/7. On the car journey up to the EMU, I remember thinking of all the things they had told me I would be deprived of in the name of science, and pondered how I would adjust. The list was long—
- Sleep was limited to three hours a night— lights out at 3 a.m., back on at 6.
- There were three meals a day with no snacking permitted.
- No washing of hair or bathing for the duration. Baby wipes were permitted.
- No mobile phones, bar a check for texts once a day.
- No medications; particularly medication that eased one’s epileptic symptoms.
- No smoking.
All were a pain in the arse, but as a person who regularly smoked 40+ cigarettes a day, this was the thing that daunted me. I had gone without food, sleep, washing, mobiles and medication before, but smoking seemed essential. They told me they’d give me nicotine patches, which I knew from previous experience offered next to no comfort. To compound matters, my fidgety hands were prohibited from touching my phone, so it would be agony. There was of course one unwritten rule: No Masturbating! I suppose one could have chanced it during a bathroom break, but the door had to be left ajar with a nurse sitting just outside. The thought of her hearing me shitting was embarrassing enough.
Before I began my stay, I met with my friendly would-be torturers. They were all lovely. The nurse on duty led me to the toilet to change into my pyjamas. When I came out, the EEG (electroencephalogram) technicians glued dozens of electrodes to my head and plugged me in. As I lay down on the bed for the first time, the nurse stuck a nicotine patch on me without warning. Presumably she knew from my file. I took out a copy of James Joyce’s Ulysses to read, which I said I would do if ever I was consigned to a hospital bed. I shared the room with three other voluntary inmates. I had been dreading bunking with these fellow weirdos for months, but without their company, it truly would have been torture. I was in the bed to the far left as one entered the room. It was the window bed, which was of no benefit as the view solely consisted of the hospital roof, which was regularly frequented by hungry seagulls, so I began to read.
There was a one in, one out policy towards admission to the EMU. I had been told only the day before admission. I replaced a woman who had been discharged only moments before. The first person to introduce themselves was a man in his mid-40’s, who was in the bed directly across from me. He was getting out later that day, so his conviviality was a welcome, if unnecessary gesture. He told me he had been a plumber before his diagnosis, and that it hindered his life severely. Plumber Guy suffered his first seizure when he was in his early 20’s. He said that due to the sheer frequency of his seizures, he ‘temporarily’ moved back in with his parents, and that he had lived with them ever since. It was the first of many sad epilepsy stories that made my own seem tame.
Next to this man was a girl in her mid-twenties who was a Trinity College Alumna. Trinity Girl and Plumber Guy seemed very chummy. She told me she had her first seizure aged 13, and that she experienced several seizures a day, during which, her mind was fully lucid (which of course made them a lot worse). Trinity Girl regularly pissed herself during seizures, so much so, that everyone in her English Lit lectures knew what to expect— she would flop to the ground and foam from the mouth, her arms slowly caressing the air, her friends on hand with spare jeans. Despite the usually high frequency of her seizures, she hadn’t had a single hint of a seizure since admission. She was coming up on the record, which was 3 weeks without a seizure. She was told if she didn’t have one by then, there was no step forward; all she could hope for was to go on the list and come in again. That was pretty dejecting, considering I myself had waited 2 years. I joked that it was probably the one time you’d want to be told you have a brain tumour, which I instantly regretted. She laughed, and I knew I was among fellow sadists.
In the bed next to me was a woman who was asleep upon my arrival. I had been told we were not allowed to nod off until 3a.m., but there she was, asleep at midday. When she eventually awoke, she seemed off her head on something. That sounds mean, but she was babbling nonsense. A few minutes later, she had a seizure. Afterwards, she was much more intelligible and told me her name. Her fiancé turned up soon after. He was her full-time carer, as well as working from home, and told us that her weird state was indicative of an impending episode. I felt weird after her seizure. I knew she was in the best place possible to have one, but my heart was still palpitating minutes after; I could hear it on the monitor. It then dawned on me that this was the first time I had ever actually experienced someone having a seizure! I wanted to tell someone, but felt it was probably a bad time to. She departed the next day, and was replaced by a 15-year-old girl, who kept staring and smiling at me. Eventually, when she was all plugged in and ready to go, she said ‘I know you!’ She said she recognised me from the first time she had had a seizure. It turns out the girl knew me to see from a visit to the doctor on call in Navan about a month prior.
Teenage Girl, Trinity Girl and I got along well with each other. While once again discussing epilepsy (other conversations stagnate quickly in hospital wards), she told us her seizures were very similar to those describes by Trinity Girl. She said she had her first seizure during a school assembly only a month before. Her parents, fearing the worst, got health insurance, which saw her moved to the top of the list. We shared a television, which was annoying because she incessantly watched Geordie Shore on MTV— an initialism which hid its extraneous original purpose. So, I was forced to read more of Ulysses.
A guy from Limerick replaced Plumber Guy. He was very quiet, and had suffered the effects of clusters of tumours in the centre of his brain. He was nice, just very quiet. As the days went by, time dragged, and filling it was hard. Reading was dangerous, as one was liable to face the nurse’s shouts for falling asleep. Every day, I was interviewed by trainee doctors, psychiatrist, technicians, and neurologists. They always asked similar questions. Often, a group of them would come together and hold what seemed like a staff meeting above my bed. They would talk about me as though I wasn’t there, which I never grew accustomed to.
In the period at which Limerick Guy, Trinity Girl, Teenage Girl, and I shared the room, every day seemed pretty much the same. None of us suffered full-on seizures. The tests the EEG technicians performed daily came as a bit of a relief. They’d flicker bright lights in my eyes and ask weird questions in an attempt to induce a full tonic-clonic, but to no avail. My sister would arrive during visiting hours every few days. She’d try to play cards, but all I would ever want to do was talk, not just for my sanity, but to keep me awake. My dad came up once, and brought a 4 pack of snickers bars. It turns out they allowed treats with lunch or dinner, as long as the neurologist had finished their tests. I put them on the windowsill, and seconds later, a fucking seagull stuck its head under the window and flew off with them! I was raging, but saw it as a sign to avoid outside foods for the duration.
Eventually, Trinity Girl’s time came, and was told there was little more they could do to induce a seizure. They told her they had never seen so little reaction from a confirmed epileptic. She was surprisingly cheery though, as they did rule out tumours. Sadly, it was likely she would never be cured. We said our goodbyes, then promptly, I continued to trudge through Ulysses.
Trinity Girl was replaced by Swords Girl, who seemed fine, if a little posh. She told us she had been stillborn, but successfully resuscitated. As a result, a part of her frontal lobe died, and was removed. She said it caused schizophrenia, but that we would hardly notice; she was wrong. Her boyfriend and mother regularly came to visit, and in mid-conversation, she would start screaming and crying. It was scary. This was when I did most of my reading. After a few nights, she had a seizure. I remember I was really annoyed, as it was during sleeping time, which wasn’t extended. It was horrific. She let out cackles and screams and violently shook. I gather they learned what they needed to, because she was discharged the next day.
That night, which was my nineteenth there, I was told to prepare to leave the next day. I was afraid they were going to tell me they found nothing on my EEG either, but thankfully, they found a lovely walnut-sized tumour, nestled neatly between my right-temporal and frontal lobe. They didn’t tell me there and then, they just said they had enough info to consider me a candidate for surgery. The next morning, they put me back on my full dose of epilepsy medication, which was a mistake. In mid-conversation with Teenage Girl, my mouth stopped working. My mind was speaking, but my body wouldn’t oblige. It was surreal! Then I lost the power of the left side of my body. I was full sure I had had a stroke, but the neurologist said it was to be expected from someone on such a high dose. It was horrible! I fucking hated that guy, and still sort of do for not warning me at the very least.
Overall, I was happy with my time there. It led to a successful surgery and short recovery, plus I finished Ulysses. That Christmas, my sister got me a bar of ‘Sweny’s Lemon Soap’. I had no fucking idea what it was a reference to. Turns out reading whilst sleep deprived in a hospital is literally a waste of time.