Actually Sleep Deprived
Chelsey Wang (ISB G11)
Chelsey constantly struggles to wake up every morning, often jolting awake to the sound of her mother’s rage only 15 minutes before school starts. Now with starting IB, she’s (finally) realized the joy of sleeping.
In this article, she introduces us to what is definitely one of the worst conditions to die from: Fatal Insomnia.
Let’s be honest, how many times have you struggled to get through the day thinking that you should’ve gotten more sleep the night before? I know that’s my daily struggle, waking up and seeing the two sunken holes that have replaced my eyes and realizing that I probably shouldn’t have slept at 2 AM. The truth is that we often take sleep for granted. As students, it’s not that we can’t sleep, it’s just that there’s always something keeping us up, whether it be a crap-ton (pardon my French) of work or the large amount of time we spend online. So, if getting too little sleep blurs our vision and causes our brains to turn to mush, what happens if we can’t sleep at all? The answer is quite terrifying.
Fatal Familial Insomnia is a rare genetic brain disorder that affects your ability to sleep. Basically, if you carry this gene, by the ages of 32-62, you’ll start by having trouble sleeping through the night — similar to mild insomnia. You might decide to take a nap during the day to make up for lost sleep but find that, instead of falling asleep and waking up feeling refreshed, you wake up trembling while sweating profusely, and as you look to the clock, you see that only 3 minutes have passed since you laid down. You’ve completely lost the ability to sleep. You may try incessantly to sleep but never go beyond a light stupor that brings no actual rest. Even sedatives and sleep medications can’t save you as they seem to make little to no improvements.
“This disorder is scary, to say the very least, and definitely high up on my list of the worst ways to die.”
You’ll notice that your condition rapidly deteriorates both mentally and physically as you lose the ability to run, then your ability to walk or even stand up. What’s more depressing is that at the beginning, you can record, write, and talk about your experience, but even that is taken away from you as your condition worsens, and the only thing left is your desperate gaze. However, you won’t be in an unconscious state — you will be fully aware in this waking nightmare as the disorder destroys your body; you will see how you lose every ability that you’ve developed in your life up until your merciful death months or years after the first symptom.
Here is the general rundown (taken from Wikipedia):
Progressive Insomnia — The patient begins to experience anxiety, panic attacks, phobias, and paranoia. This stage lasts about 4 months.
Hallucinations and Panic Attacks Worsen — This stage lasts about 5 months.
Complete Inability to Sleep with rapid weight loss — Suffice to say, the “normal” sleep becomes almost completely absent, and this stage lasts about 3 months.
Dementia — The patient becomes progressively less responsive and eventually mute. This is the terminal stage and lasts about 6 months.
This disorder is scary, to say the very least, and definitely high up on my list of the worst ways to die. Although it’s rare, F.F.I. dates all the way back to the 18th century. Today, we’ll look at a case from 1984 of a man named Silvano, who was a descendant of the person from the first documented case.
The Case of Silvano:
1984 Venice, Italy. While on vacation with his mother, Silvano started sweating heavily out of the blue. Despite being an attractive Italian man with a terrific talent for the dance floor, he found himself unable to enjoy himself during the dinner party as his muscles tensed up. Worriedly, he looked in the mirror and was met with the same disheveled expression he’d seen in his father and two sisters at the beginning of their illnesses — a stark contrast to the colorful pocket square folded neatly in his suit. Silvano knew it was all downhill from there.
“In his final days, Silvano laid in a perpetually exhausted state, constantly drifting off to a momentary stupor before jerking awake again to his waking nightmare.”
Fatal Familial Insomnia (F.F.I.) ran in their family; he and their entire neighborhood knew about the family’s infamous disorder. It started with the death of his great-great-great-great-great (you get the gist) grandfather, Giacomo, who’d died of this disorder. Since then, “[a]t least 30 of Giacomo’s descendants have died” (Max) the same way. Silvano was sure he’d end up the same, so he signed into a clinic run by professor Elio Lugaresi, an expert on sleep disorders. Upon arrival, Silvano was set up in a comfortable bed with “[a] videotape machine…set up to record his behavior, and his head…covered with brain sensors” (Max).
Watching the tape, reporter D.t. Max would recount Silvano’s tapes as “uncomfortable” (Max). Silvano often hallucinated at night, imagining that he was “carefully combing his hair” (Max) and “getting ready for a party” (Max) as if all was well. Even though he often joked with his family about the illness, he could “not disguise his terror” (Max) when he was alone behind closed doors.
In his final days, Silvano laid in a perpetually exhausted state, constantly drifting off to a momentary stupor before jerking awake again to his waking nightmare. As it is with all cases of F.F.I., Silvano’s struggle in the labyrinth of sleeplessness ended in death.
Perhaps the most depressing aspect about this whole ordeal is that there is no widespread cure for this disorder as of today. So as these poor victims of F.F.I. witnessed the downward spiral of their condition, they had to come to terms with their own mortality in sometimes as short as a few months.
Although the chances of getting fatal insomnia are extremely slim, being 1 in 1,000,000 people per year, it gives us perspective on the simple things that we take for granted, such as the ability to sleep, move, and talk. Despite the scare that learning about this condition has caused me, I’m glad that I know it. Seeing the extreme ends — in this case, losing the ability to sleep — makes me realize that I should be more grateful for the small things. And, of course, it makes me realize that ... I really need a nap.
