1: The Sudden Seizure

Be brave, be bold. 

These were the words printed on the front of a green-bound journal that I received on my 40th birthday. Never in my darkest nightmare visions would I have imagined what those words would come to mean to me only two months later. 

Life can change in a heartbeat. We all know this. It happens every day to someone, and although none of us are untouchable or invincible, you are never prepared for the moment that a lightning bolt strikes you and you take one almighty fall. It happened to me on the afternoon of Sunday, 5th January 2025—a day I will never forget—the day when my life so suddenly and so shockingly changed. 

That Sunday began like many other Sundays. I vividly remember being sat on my exercise bike in the garage, pedalling away and chatting to my dad as he went back and forth doing odd jobs outside. The only thought in my mind was where to spend the afternoon when my partner, Jake, arrived. 

In the time it took for Jake to drive the 15 miles down the M1 to my house, a chain of events began that would steer my life so dramatically off course and throw me onto a terrifying path. 

It all started with a strange sound. 

"Dad, can you hear that sound in the wall?" I said, looking confused. Dad came over and stood still, listening intently. Looking puzzled, he replied,  "No, I can't hear anything."  

"Are you sure? It sounds like a clicking noise coming through the wall," I insisted with increasing frustration. 

Listening again, he confidently confirmed he could hear no sound. The wheels of the bike were noisy, so I accepted that I was probably 'just hearing things' and continued pedalling. But that noise did not disappear; a strange clicking continued to distract me. I was convinced the neighbours were doing a job and accepted I would just have to tolerate it. 

A short time after this, a nauseating feeling washed over me, so I stopped pedalling and made my way into the house. I knew that Jake must be close now, so to eat up a bit more time I casually picked up my hand weights at the side of the sofa in the living room. I did a few reps unenthusiastically, and still feeling a little nauseous, I went upstairs to my bedroom. 

I recall nothing of the events that followed. 

Without any knowledge or realisation, something was happening in my brain. Mum found me standing vacantly in front of my bookshelf, unresponsive to her calls.

"Gilly, what are you doing? Are you okay?" she asked, confused at my silence and ignorance. Panicking, she called for Dad. I do not remember Dad standing in front of me, asking questions.  

"Gilly, can you hear me? Gilly, can you follow my hand?" he said, becoming increasingly concerned at my unusual behaviour. I looked straight through him.  

"Gilly, something's not right, I'm calling for an ambulance," he said. This vacancy was like a strange gathering of clouds, an eerie stillness and silence before a violent thunderstorm. 

Before Dad could call an ambulance, the storm struck, as I fell forwards and collapsed in his arms. Thankfully, he was there to catch me as I fell onto my bed. A strange, frightening thing was happening to me as I lay on my bed. My muscles stiffened abruptly, as if iron rods had suddenly been inserted into every limb, my brain unable to override this mechanical takeover. My eyes were wide and rolled back. Then the convulsions took over, surging through my body – waves of involuntary motion that made my arms and legs jerk and flail uncontrollably. My brain tried desperately to gain back control, sending scrambled signals, but my body was caught in the crossfire. It must have been a distressing sight for my parents – unable to intervene or make it stop.  

Then, as abruptly as it began, the storm passed and my body was still and limp, as if the violence of this tornado had suddenly dropped me from its clutches. It had lasted for two minutes. For another minute I was unconscious, and as I began to wake, the world was blurred and distant. I was confused and utterly exhausted.  

The next vague recollection I have is being carried downstairs by someone in a green uniform and being placed in the back of an ambulance. The conscious part of my brain had not fully switched back on, so I was not feeling any panic or fear. I was simply trying to process this strange reality: me staring through the open doors of the ambulance and catching sight of Jake's troubled face, looking across at Mum sitting opposite me and responding to questions from the paramedic about how I was feeling. 

"Sick; I feel quite sick," I repeated.  

"Don't worry, I will give you something for that," the kind and friendly paramedic said. 

My leggings also felt wet and uncomfortable, and I really wanted to go to the toilet before we drove off, but the nausea distracted me from this discomfort, as I tried hard to avoid throwing up. As the ambulance drove off, I heard them discussing which hospital to take me to, and despite Leicester being closer, they made the decision to take me to Queen's Medical Centre (QMC) in Nottingham. I remember little of the journey—only very confused about why I was in the back of an ambulance and not heading to my favourite tearoom with my boyfriend, as planned. 

As we pulled up outside the hospital, I was assisted into a wheelchair and wheeled into the grey building where people sit in rows, most with sullen, sad faces, knowing a long wait lies ahead - waiting to find out what is wrong; waiting to be helped; waiting to be fixed. As I sat on a hard plastic chair with my mum and dad on one side and my boyfriend on the other, it just didn't feel right.

What was I doing there? Was I OK? The only thing that concerned me at this point was how long we would be there - seated on the hard plastic chairs, watching people shuffle off as names were called. There was something else that was really bothering me as I sat sandwiched between my parents and my boyfriend. There is no pleasant way of describing that smell. It was the unmistakable smell of human ****. For a while I sat there, my nostrils appalled every time a whiff of it hit me. There was another thing niggling at me: that wet, sticky, uncomfortable feeling in my leggings. I knew I needed to go to the toilet, but I was strangely unmotivated to move, perhaps because I convinced myself that the experience of using a hospital toilet would be equally as unpleasant. 

Forty-five minutes crawled by, and I was starting to feel quite cold, so Dad put his big duvet North Face jacket over me.  

"How much longer do you think it will be?" I asked with restlessness.  

"Oh, I’m not sure. Could be a while yet," Dad wearily replied. 

I looked around the room and felt reassured to see empty seats and a room which had thinned out since we arrived. An uncomfortable hour passed. 

“Gillian Entwistle” a voice called. 

A medium-built, dark-haired doctor in blue scrubs stood near the reception and called my name. We all stood, relieved to be moving out of the waiting area. I hoped that after a very quick check over, I would be released. He introduced himself and took some routine medical details.  

"Are you on any medication?” he inquired. 

“No” I said. 

  “Do you suffer from any of the following?" 

“No, no, and no” I confidently told him. 

“Have you been feeling unwell or suffered with anything more recently? Any headaches, for example?” 

“No, nothing,” I said again. 

Another nurse appeared with a little trolley and took my heart rate and blood pressure. Both were perfectly fine. Then she inserted a needle into my vein for a blood test.  

“Great, we're done,” I thought. 

“OK, so we are going to send you for a CT scan,” the friendly doctor said. 

I wasn't sure what this meant, but it didn't sound like something I really wanted to have. And it meant more waiting. As I sat outside the room with the words CT Scan written across it, I had a more sickening feeling in my stomach. The area was more clinical and more ominous. I think I had not fully regained my usual state of consciousness—still somewhat sedated from the seizure episode hours before—and for that reason, I seemed less panicked by what was happening than perhaps I would have otherwise been. But there was still one thing that I just could not turn off from: that hideous smell of **** that just kept following me. In a moment of sheer frustration and disgust, I turned to Jake and said,  

"It smells like ****. Can’t you smell that horrible smell?"  

To which he replied, "No." 

He seemed quite oblivious to this overpowering smell, though I know his sense of smell has never been acute. This time, having been wanting to use the bathroom for hours now, I could wait no longer. I went into the toilet, and I discovered something quite shockingly unpleasant...and completely unexpected. I will spare you the details, but let's just be clear that the unpleasant smell—I was responsible for. I was shocked, appalled, and confused all at once. The worst part about this sticky situation? Having no means to deal with it and the instinctive feeling to tell no one, to pretend it hadn't happened. So I dealt with it in the best way that I could under the circumstances. I was never happy discarding my underwear in the toilet bin; it was most certainly not intended for soiled knickers. But what choice did I have? I couldn't even wash my hands properly—those flimsy dispensers on the wall were completely useless. But at least I had got to the bottom—no pun intended—of the smell.

Now I had only one thing on my mind: to get home and to lower myself in a hot, soapy bath. But I was still staring at the words CT scan on the door in front of me, and signs reading X-rays, wondering what was on the other side. Then, for a second time that night, my name was called. 

“Gillian Entwistle, would you like to come with me?” a very amiable nurse announced.

The room was unnaturally white, with a huge doughnut-shaped machine in the middle. It was a huge circular opening set inside a sleek white frame with dazzling blue fluorescent lights. These lights, against the stark bright of the room, made it look like something out of a science fiction movie. The opening was just large enough to accommodate a person lying down. And very soon, the nurse was explaining how the machine worked and what I needed to do. It sounded straightforward, but still very unnerving. 

“Yes, that's right. Just lie back on there for me. Um, yeah, just move up slightly,” the nurse asked in a friendly tone. I adjusted my position and did my best to ignore where I was and listen only to the instructions I was given. She then explained that she would need to put a cannula in my arm, into which they would inject a dye during the scan. I'd never been afraid of needles, but I've never liked having them inserted into the veins on top of my hand. Some strips of medical tape held the thin, hollow tube in place. 

“So, when I put the dye in, it may make you feel a warm flush, as if you are peeing,” the nurse explained. And then the bed moved inside this futuristic-looking tunnel. I lay very still as this giant circular mouth started rotating. About midway through, the nurse came and inserted some liquid into the cannula. It was all very painless. But a few moments later, I felt as though I was peeing. The nurse had been right.  

It was over very quickly, and I was relieved when the bed started moving forward and I was back in the bright white room, being told I could now sit up. I thanked the kind nurses and happily walked towards the door, relieved that I could finally leave and go home. The image of the hot, soapy bath entered my mind again. But before I could get too excited about bathing in the bath, I was hit with the news that I would have to return to the waiting area and those uncomfortable plastic seats for the results of this CT scan. At this point, there was no panic or fear. In fact, I was remarkably indifferent. I thought that this seizure was an anomaly, an unexplainable episode—but nevertheless, not serious. I was fairly certain that I would walk away from the hospital that evening and return to my normal life back at home, putting today's hospital visit firmly behind me. Every time a doctor appeared, I wished for them to call my name. 

There's no denying that the inside of a hospital is a depressing place. The walls themselves seemed to press inward, painted in a sickly tone with framed prints of bland landscapes or abstract art that do nothing to lift the spirit of the place. Then there's the faint chemical smell lingering in the air—sanitizer, bleach, and medicine—that reminds you of where you are. Then there was the other unpleasant smell—the one I was responsible for. Time just stalls. I surveyed the room: blank faces, a restlessness is palpable, fidgeting breaks out as most are uncomfortably shifting in their plastic chairs and mindlessly scrolling through mind-numbing content on Facebook or Instagram. It is a room of silent agitation, broken by the buzz of routine hospital activity—doors opening and shutting, wheelchairs and trolleys being pushed around, doctors and nurses walking in and out, names being called. 

“Gillian Entwistle,” a voice called from across the room. It was the same doctor that had called me earlier for my CT scan. We followed him down the corridor, and then he invited us into a small cubicle with a bed, three chairs, and a desk. 

“Please take a seat,” he said as he closed the cubicle curtains. Dad perched on the end of the bed, as Mum, Jake, and I took a seat. The doctor perched casually on the end of his desk. He gave nothing away, but his smile helped to soften the silence of anticipation. My hands did not sweat, and I was breathing normally. The uncertainty still did not fill me with any sense of fear. Only a few hours ago, I had been exercising, and I was feeling perfectly fine as I sat in front of this doctor, imagining that he was about to tell me it was nothing to worry about and I was able to leave and go home. Then he broke the silence.

“So, the scan has shown a mass. So we will need to do an MRI scan to get a clearer picture of what this is,” he explained. “We can't get you seen tonight, so we will need you to stay in overnight, and you will have this scan tomorrow morning,” he clearly stated. 

“Ohh, so I can't go home tonight? I’ve got to stay here?” I asked, with disappointment.

I'd heard of an MRI scan, but I had no idea about what it was looking for or how it worked. I did not wish to know any more, so I asked no questions. I was exhausted. I’d been in a drowsy, semi-conscious state since arriving at the hospital almost five hours ago. 

“I'm afraid so. We also just want to monitor you,” he replied. Any concerns about the news he had just delivered seemed not to have registered with me, and instead, I just felt deeply frustrated that I could not have that hot, soapy bath and take off my ****-stained leggings. Perhaps for a moment, I felt some unease that they had found something he called ‘a mass.’ But I'd always been fit and healthy, and until the second I collapsed into my Dad's arms, there were no signs or symptoms that there was anything wrong with me. So, strangely, I had some peace of mind that everything would be OK, and the only thing that was going to bother me was stopping overnight on a hospital ward. 

As we waited to be moved to a ward, an explosive, angry voice abruptly broke the relatively calm and routine sounds of hospital activity. 

“No, get off me. Let me go” he howled. Jake went to get some water and came back to say that a man was running around without his clothes on. I became a little disturbed by this increasingly agitated voice, which seemed to be getting louder and louder and was no doubt echoing further around the hospital, with expletives now being thrown around. I hoped it wouldn't be too much longer before we were moved. 

A smiling young man appeared from behind the curtain with a wheelchair. It took me a moment to realize this chair was for me. I had this strong, stoic, resistant part of me inside that was shouting out: “There's nothing wrong with me, I’m fine, I don’t need this. I can walk.” But the doctors seemed very keen on me staying. So I was now at the mercy of medical professionals and would be instructed by them until I could walk away and be done with this. 

“Hi, I'm Josh. I'm here to take you up to the ward,” the nice-natured young porter said. 

That's when I stood up and sat in the chair. The exhausted part of my body was grateful to this young man for his assistance. But as he wheeled me down the corridor—Mum and Dad at one side and Jake at the other—I felt somewhat uncomfortable that I had suddenly taken on the clear status of a patient. I was wheeled into a big, spacious lift with other strangers and two men dressed in green scrubs and face masks. Within a few hours, the familiarity of my home had suddenly been replaced by a world I didn’t recognize. 

We were wheeled down a long, brightly lit corridor—stark, bare, and unadorned. The only thing that caught my eye was the big bold letters: Acute Medicine Unit. So this was my home for the night. We arrived at the ward where there were six beds. Mine was the one nearest the nurse’s desk, the furthest from the windows which were at the bottom of the ward. 

“Hello, my name is Sarah, and I am one of the nurses that will be looking after you. Can I get you anything?” the young, blonde nurse politely asked.

“No, I’m OK. Thank you,” I said, grateful for the gentle reassurance in which she spoke.

“I’ll let you get settled, and then I will come back and give you some water,” she said.  

“Thank you,” I replied with a big smile. 

She then gave me one of those white paper wristbands – not the colourful types that you get at festivals – the unadorned ones with small black text identifying me by name, gender, date of birth and two numbers that didn’t mean anything to me. I had been officially labelled as a patient. It was strange how that simple white wristband suddenly reinforced the feeling that something was wrong with me, despite me feeling perfectly well, just tired. 

The bed looked fairly comfortable but not very warm—only thin linen sheets and a very thin pale yellow blanket. Sleep had overcome me, and I did feel some relief to be crawling into a bed, even if it wasn’t my own. I pulled the sheets over me, and Dad put his coat over the top in an attempt to make up for the thin bedding. I’d eaten nothing but was not feeling hungry. The seizure and the long hours of waiting around at the hospital had taken its toll. My head had started to pound. I was aware I had drunk very little, so I asked for a bottle of water. 

There was an old, frail lady in the bed opposite me. She seemed to be sleeping but looked quite unwell. There was another lady sitting beside her, perhaps in her late 50s. I guessed that this may have been her mother, from the way that she was tenderly holding her hand and gazing at her face as she slept. I smiled gently at this lady but felt very sad at the same time. It was a picture of love but also of helplessness and suffering. It was both tender but heartbreaking. There were two other patients at the beds nearest to the window. They were also asleep, and I knew nothing about who they were or why they were here. I was too exhausted to let my head spiral and very quickly found myself wanting to drift off to sleep. In fact, I was even too tired to have the urge to want to shower or use the bathroom to brush my teeth. And I never fall asleep without brushing my teeth. I was finally ready to put today behind me, fall asleep, and hope that tomorrow I could return home after this MRI scan. 

It was now 9 p.m. It was decided that Jake would stay with me for a short time whilst my dad drove my mum home and grabbed some of my clothes and toiletries so that he could come back and stay with me overnight. So Jake settled into the hospital chair next to my bed and held my hand. There was something in his eyes that said, I'm not leaving you, and despite being in this strange place, in this hospital bed, I felt a sense of comfort that allowed me to drift off to sleep. My eyes continued to open, though—not yet desensitized to the hospital glare and 24-hour activities. I caught Jake — eyes flickering, fighting against a desperate need to sleep. I had the urge to sit up and kiss his soft lips; instead, I adjusted my head on the two flat pillows and tried once again to sleep. 

A couple of hours later, around midnight, Dad arrived back at the hospital with two big, bulging carrier bags. I remember Jake sleepily standing up, kissing me goodnight, and telling me he would be back soon. I didn’t want him to leave, but I knew that he needed to go home for some proper sleep and that he would, indeed, be back very soon. I was too tired to examine the contents of the bag but knew that my parents would have done their best to ensure that I had everything I needed.

Dad sat beside me, drifting in and out of sleep, until 5.am, when Jake returned. I thought very little about anything other than the comfort that I felt when he sat back down beside me, enclosing my hand once again in his. We waited sleepily for morning to come—and with it, some answers.

Why was I here, on the Acute Medicine Ward, in hospital? What was it that had brought me here?

*Some names have been anonymised*