I spent my whole adult life avoiding close connections with people. I could never make it work and so I just stopped trying to connect with anyone. Until I met KC. We were together for just over five years, and engaged, and this is how our life spiraled out of control.
They preferred iced coffee. That's how it started. They left one morning in august to go to a local coffee shop, it's less than two blocks away from our apartment. Having suffered from fibromyalgia for most of their adult life, my partner, KC, chose to drive the short distance. On the second of the two turns necessary to arrive at their destination, there was a man with a loaf of bread crossing the street in a crosswalk. After having slowed and ultimately stopped for the man, a distracted driver rounded the corner from the thoroughfare at speed and collided with KC's then stationary vehicle.
Safety equipment being what it is, KC was largely unharmed by the incident, at least initially. Having gone to the hospital and been diagnosed as very standard whiplash and a concussion. We didn't really think much of the whole incident, for a while. They went back to work, we bought a new car to replace the totaled one, life goes on.
The first seizure came less than two months later. Driving down a busy four lane highway, in the previously mentioned new car, KC suddenly swerved across all four lanes of traffic and crashed into a curb strip. KC had no recollection of the event, just the aftermath of a destroyed transmission, which was caught and crushed by the raised concrete of the roadside. In hindsight now, it was a red flag that there was something going on, but I didn't or wouldn't see it for what it was, because we wrote it off as an accident.
The second seizure was three weeks after the first. We were in our living room, which is separated from the kitchen by a small island. I was in the kitchen, making coffee while KC and I spoke about the day's events. Everything seemed normal, everything was normal. They were looking right at me until they jerked their head sharply to the right and then fell off the couch, convulsing to the floor.
As one does, I called the paramedics. I had no previous experience with seizures, and KC certainly had no underlying conditions that I could have reliably claimed to have caused it. They spent nearly a week in the hospital, that first time. In the end, they came back on new anti-seizure medication, an appointment with a sports concussion clinic and no clear answers about what precipitated the event.
I stopped counting after that. They began to have nocturnal seizures at regular intervals, such that we had to buy a guardrail for their side of the bed. It went on like that for months, seizures of varying levels of severity. Marked with periods of extreme agitation and complete dissociation for minutes, hours, or days afterwards. On one occasion, KC reported to me feeling unwell, and as if a seizure event was on the way. They ended up seizing in the emergency room waiting room, where they were subsequently taken out back and after being heavily combative they were put under heavy sedation and put on a breathing tube for five days.
Things didn't get better after that, dozens of appointments and tens of doctors and half a dozen hospitalizations and the realization that some high percentage of seizures just go undiagnosed starts to creep in. We haven't exactly given up hope that we can find a solution, but it is growing harder and harder not to be despondent about it.
Finally, after ten months of back and forth with doctors, they get put into a sleep study program at a specialty hospital. Monitored by camera, instrument and staff twenty four hours a day for aberrant brain activity. Over the course of more than a week, nothing was recorded, other than minor blips on the EEG they were hooked to. Ultimately they were discharged back into my care with no answers still.
They were dead eight days later. We had been awake late the evening before, as we always were. We liked to watch really trashy reality tv, we called it "cringe porn" and it was a guilty pleasure of ours to sit, watch and roast. We were up like that, together, until I decided to go to bed, at midnight. It wasn't unusual for us to go to bed at different times, neither of us had a very steady sleep schedule.
I woke up at 7:05 am the next morning to complete stillness. It's difficult to articulate what exactly triggers unease, when it occurs sometimes. In this case I felt like the bed was empty and full at the same time. Somehow weighed down with another presence, but not abuzz with the million little muscle twitches and noises and vibrations of a living human body that I guess we are all subconsciously accustomed to.
When I turned over they were laying uncovered, on their side. Nothing seemed unusual except the feeling of unease, and so I said "babe?". When initially there was no response, no stir, I reached for them and found them soaking wet under my fingertips. I tried to shake them but they were dead weight on the bed, I tried to turn them over and in doing so was able to spot their face, their lips cyanotic. I try to move them flat on their back, and I can't get it, the bed is too soft a surface. I want to drag them off the bed off the floor but I'm paralyzed by the idea of making it all worse. I yell "baby?!", to no one in particular. Then I get up and I scream "NO" to the entire living breathing world.
I grab my phone and I call 911. As calmly as I can, I tell the dispatcher my brief story. I have just woken up, my partner is dead in the bed next to me. She asks me if KC is breathing, I tell them no, their lips are blue, they are very much not alive. I'm told to wait, that help will be there shortly, and then I'm alone again. I don't know what to do, so I get a coat on and I go to wait on the porch. Our apartment has a common door and so I need to go unlock it if anyone is going to be getting into the building. Waiting in the cold of the morning I stand on my porch for eight minutes, until finally the paramedics arrive.
I don't have words, I just point to the apartment, and seven guys with all the life saving gear you can imagine trudge up into my apartment to find my dead fiance on the bed. It isn't for a further forty minutes of working on them that I'm told with very little ceremony that they're dead.
The cause of death, which was ascertained after an autopsy, a toxicological report, and a forensic analysis of their brain tissue, was a nocturnal seizure that led to complete system shutdown. I haven't seen the report myself, this is how it was told to me by KC's father.
They preferred iced coffee. That's how it started. They left one morning in august to go to a local coffee shop, it's less than two blocks away from our apartment. Having suffered from fibromyalgia for most of their adult life, my partner, KC, chose to drive the short distance. On the second of the two turns necessary to arrive at their destination, there was a man with a loaf of bread crossing the street in a crosswalk. After having slowed and ultimately stopped for the man, a distracted driver rounded the corner from the thoroughfare at speed and collided with KC's then stationary vehicle.
Safety equipment being what it is, KC was largely unharmed by the incident, at least initially. Having gone to the hospital and been diagnosed as very standard whiplash and a concussion. We didn't really think much of the whole incident, for a while. They went back to work, we bought a new car to replace the totaled one, life goes on.
The first seizure came less than two months later. Driving down a busy four lane highway, in the previously mentioned new car, KC suddenly swerved across all four lanes of traffic and crashed into a curb strip. KC had no recollection of the event, just the aftermath of a destroyed transmission, which was caught and crushed by the raised concrete of the roadside. In hindsight now, it was a red flag that there was something going on, but I didn't or wouldn't see it for what it was, because we wrote it off as an accident.
The second seizure was three weeks after the first. We were in our living room, which is separated from the kitchen by a small island. I was in the kitchen, making coffee while KC and I spoke about the day's events. Everything seemed normal, everything was normal. They were looking right at me until they jerked their head sharply to the right and then fell off the couch, convulsing to the floor.
As one does, I called the paramedics. I had no previous experience with seizures, and KC certainly had no underlying conditions that I could have reliably claimed to have caused it. They spent nearly a week in the hospital, that first time. In the end, they came back on new anti-seizure medication, an appointment with a sports concussion clinic and no clear answers about what precipitated the event.
I stopped counting after that. They began to have nocturnal seizures at regular intervals, such that we had to buy a guardrail for their side of the bed. It went on like that for months, seizures of varying levels of severity. Marked with periods of extreme agitation and complete dissociation for minutes, hours, or days afterwards. On one occasion, KC reported to me feeling unwell, and as if a seizure event was on the way. They ended up seizing in the emergency room waiting room, where they were subsequently taken out back and after being heavily combative they were put under heavy sedation and put on a breathing tube for five days.
Things didn't get better after that, dozens of appointments and tens of doctors and half a dozen hospitalizations and the realization that some high percentage of seizures just go undiagnosed starts to creep in. We haven't exactly given up hope that we can find a solution, but it is growing harder and harder not to be despondent about it.
Finally, after ten months of back and forth with doctors, they get put into a sleep study program at a specialty hospital. Monitored by camera, instrument and staff twenty four hours a day for aberrant brain activity. Over the course of more than a week, nothing was recorded, other than minor blips on the EEG they were hooked to. Ultimately they were discharged back into my care with no answers still.
They were dead eight days later. We had been awake late the evening before, as we always were. We liked to watch really trashy reality tv, we called it "cringe porn" and it was a guilty pleasure of ours to sit, watch and roast. We were up like that, together, until I decided to go to bed, at midnight. It wasn't unusual for us to go to bed at different times, neither of us had a very steady sleep schedule.
I woke up at 7:05 am the next morning to complete stillness. It's difficult to articulate what exactly triggers unease, when it occurs sometimes. In this case I felt like the bed was empty and full at the same time. Somehow weighed down with another presence, but not abuzz with the million little muscle twitches and noises and vibrations of a living human body that I guess we are all subconsciously accustomed to.
When I turned over they were laying uncovered, on their side. Nothing seemed unusual except the feeling of unease, and so I said "babe?". When initially there was no response, no stir, I reached for them and found them soaking wet under my fingertips. I tried to shake them but they were dead weight on the bed, I tried to turn them over and in doing so was able to spot their face, their lips cyanotic. I try to move them flat on their back, and I can't get it, the bed is too soft a surface. I want to drag them off the bed off the floor but I'm paralyzed by the idea of making it all worse. I yell "baby?!", to no one in particular. Then I get up and I scream "NO" to the entire living breathing world.
I grab my phone and I call 911. As calmly as I can, I tell the dispatcher my brief story. I have just woken up, my partner is dead in the bed next to me. She asks me if KC is breathing, I tell them no, their lips are blue, they are very much not alive. I'm told to wait, that help will be there shortly, and then I'm alone again. I don't know what to do, so I get a coat on and I go to wait on the porch. Our apartment has a common door and so I need to go unlock it if anyone is going to be getting into the building. Waiting in the cold of the morning I stand on my porch for eight minutes, until finally the paramedics arrive.
I don't have words, I just point to the apartment, and seven guys with all the life saving gear you can imagine trudge up into my apartment to find my dead fiance on the bed. It isn't for a further forty minutes of working on them that I'm told with very little ceremony that they're dead.
The cause of death, which was ascertained after an autopsy, a toxicological report, and a forensic analysis of their brain tissue, was a nocturnal seizure that led to complete system shutdown. I haven't seen the report myself, this is how it was told to me by KC's father.
