Terminal Insomnia

Did you ever go on a Wikipedia click rampage? It usually happens when you look something up, then you click on a link in that article, then on a link in the linked article and etc. 2 hours later you find yourself reading an article that has absolutely nothing to do with what you started with and no relevance to anything useful whatsoever. But it’s interesting. That happened to me recently when I stumbled onto a description of a rare, hereditary disease which gave me an idea for a story. Here are some notes I jotted down on the subject.

The Setup

A guy suffering from fatal familial insomnia sets out to unravel a mystery from his past before he succumbs to the disease. Fatal familial insomnia is an incurable genetic disorder which affects ones sleep patterns. From wikipedia:

The age of onset is variable, ranging from 30 to 60, with an average of 50. However the disease tends to prominently occur in later years, primarily following child birth. Death usually occurs between 7 to 36 months from onset. The presentation of the disease varies considerably from person to person, even among patients from within the same family.

The disease has four stages, taking 7 to 18 months to run its course:

  1. The patient suffers increasing insomnia, resulting in panic attacks and phobias. This stage lasts for about four months.
  2. Hallucinations and panic attacks become noticeable, continuing for about five months.
  3. Complete inability to sleep is followed by rapid loss of weight. This lasts for about three months.
  4. Dementia, turning unresponsive or mute over the course of six months. This is the final progression of the disease, and the patient will subsequently die.

The story would follow the character as his condition worsens during the span of 10-18 months. It would start near the onset of the disease, at which point the hero would start his quest facing sleepless nights, bouts of paranoia, odd phobias and eventually hallucinations. At this point the story could take an oneiric slant blending flashbacks from the past, fictional dream like events and reality. Our character would be slowly loosing the ability to distinguish between past, present reality and hallucination slipping into sort of a waking dream. However the increasingly complex hallucinations would also help to bring him closer to his goal – often representing repressed memories, and revealing new pieces of the puzzle.

The Mystery

This is the area that needs the most work. I really have no concrete ideas here, but I’d want it to be deeply personal, and somewhat disturbing. Our character could for example be adopted, and he sets out to find his biological parents. He has no records, no last name and no information about them. But since the fatal familial insomnia is very rare genetic disease found only in around 28 families worldwide this sort of narrows down his search. After few duds he finds a promising lead. Unfortunately something happened to the family and the trail ends abruptly and our hero is forced to look inward trying to reconstruct his childhood memories basing on old documents, visits to familiar locations, and items from his past.

I don’t really have much more at the moment. Obviously this is the big hook that can make or break the whole narrative. I’d like it to be something dark, sinister and unsettling but I can’t think of anything that would fit here. Can you?


The story would start grounded in reality and then slowly slip towards abstraction. So initially we would explore how insomnia affects our characters personal relationships with his wife/girlfriend, family and friends as well as how it affects his work. Having issues adjusting our hero would set out on an inwards journey of self discovery while his close ones rally around him trying to cope with his condition. Onset of paranoia and irrational phobias would put a severe strain on his closest family – his personal quest conflicting with their attempts to help him.

So we would see the secondary characters try to cope with inevitable death, and their close one growing more distant, disturbed and detached from reality every day. Some would sever the relationship being unable to cope, some would try to interfere in his pointless quest causing conflict. Only our heroes true friends/soul mates would stay till the end.

On the flip side we have this sort of existentialist notion of subjective perception of the world. Our hero at some point looses the ability to distinguish between rational and irrational thought, reality and hallucination. But what is reality? Is my reality the same as your reality? The only way we can figure out what is normal is by negotiation – if we both see a pink elephant, then it must be real. But then again, how would I know I’m not negotiating my reality with yet another hallucination? Perhaps you see the elephant, because your really don’t exist.

How do we assert what is real and what is not when our frame of reference is lost? Our character would be struggling wight these kinds of issues. Which events were real? Which were imagined? Which memories are real, and which ones are fake? And does it really matter in the end?


When I read the description of this disease, this outline just sort of jumped at me. I think there is something here. It would take some skill to actually turn this into a worthwhile story, and it would require careful mixing and rationing out the ideas and themes outlined above. I believe that the concept is rather interesting though. Do you agree? Or is this totally stupid?

Creative Commons License

Terminal Insomnia by Łukasz Grzegorz Maciak is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License. Based on a work at www.terminally-incoherent.com.

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11 Responses to Terminal Insomnia

  1. Ian Clifton UNITED STATES Mozilla Firefox Linux says:

    Sounds like a great idea to me. Perhaps the father of the MC (main character) killed the rest of MC’s family during his hallucinations caused by the disease and MC has repressed those memories. The story could start a week or two into the onset of the disease with MC thinking that it’s just “normal insomnia.” After it goes on even longer, his wife/girlfriend/etc. convinces him to see a doctor who probably sends him to a specialist who tells him what is going on. The advantage of starting a little bit after the onset of the disease is that you can still do all the usual intro stuff, but you give yourself more time during the latter part of the book when the hallucinations make things really interesting.

    The hardest part would be mixing the hallucinations/paranoias with reality. Maybe when he goes back to a hospital for more tests and they draw his blood he starts to think they might be using it for some other purpose or that the doctors don’t know what they’re doing; they just want his money. Eventually it would get worse and worse; he could see his significant other cutting a cake she had made for him and the big knife makes him think she plans on killing him.

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  2. jambarama UNITED STATES K-Meleon Windows Terminalist says:

    I like the idea too. Personally I like stories with less dramatic content. Like something more normal than murder, adoption, and other wild tales of intrigue. I think it is much harder to make a compelling story about everyday activities, but if you can manage, they’re absolutely the best. The dramatic stuff often makes me think I’m reading Dean Koontz, the number 23, or some crap like that. Not to say great stories can’t involve fantastic circumstances, but, paradoxically, it seems harder to write good literature involving unusual events.

    I really like your ideas about exploring the deteriorating relationships with people who don’t understand the diseas, those who can’t cope with loss, and those driven away by the aberrant behavior caused by the disease. I think you could make an excellent story right there. If you need a ticking clock to drive the plot, you could always make him a scientist trying to cure his own disease. But the narrative (if 1st person) or the main characters actions (if 3rd person) would kind of break down as the story went on. Kind of like flowers for algernon.

    Best way I’ve found to get inspiration to write is to stay up way to late, listen to something like radiohead, and just start writing.

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  3. Luke Maciak UNITED STATES Mozilla Firefox Ubuntu Linux Terminalist says:

    Wow. Nice. Cool suggestions from both of you. I sort of agree that keeping it grounded and every-day quality could make it more powerful. Perhaps the mystery hook is not needed at all here and you just need good characters to drive the plot forward.

    The hallucinations could be done a bit like in A Beautiful Mind – they would be grounded in reality, and the readers/viewers would not always know what is real and what is false.

    I’d sort of like this story to turn inward. Rather than show MC deteriorating, I would actually have him grow, and sort of reach some sort of heightened level of introspective consciousness. As the illness would progress he would become more and more detached from reality, and consumed by his inward reflections and revelations about life, truth and everything.

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  4. jambarama UNITED STATES Epiphany Linux Terminalist says:

    I like the idea of make the audience unclear on what is real – it seems like a powerful tool. I guess it’d be first person then right? 3rd person would be hard to do and preserve the guy’s delusions.

    Going inward could be very good. Have you seen Driving Belle & The Butterfly? It is a french movie, but it is really great. It is a real story about a guy who is totally paralyzed except for one eyelid, but his brain is totally intact. He “dicatated” an entire book by eyelid actually. Something like Metamorphosis might be more on par, where the guy can’t communicate effectively anymore. Of course that’d only be end stage familia insomnia.

    As for insomnia, have you seen the machinist? Not a great movie, but worth watching – it is about a guy with insomnia kind of going crazy.

    Cool stuff though, best of luck, and if I can help let me know ;)

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  5. tannie NETHERLANDS OmniWeb Mac OS says:

    You may (or may not) want to see El Maquinista / The Machinist ( http://www.imdb.com/title/tt0361862/ ). It deals with the same subject of insomnia and paranoia and such. I have not seen it yet, but a friend highly recommended it (and he never really recommends anything ordinary, he likes Weird, so I suspect it’s pretty good)

    But perhaps you want to *not* see it so your story doesn’t get ruined for you…

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  6. tannie NETHERLANDS OmniWeb Mac OS says:

    Oh oops, someone above mentioned the same movie…

    But I like the idea a lot! If you can pull of dripping in some paranoia and hallucination in such a way that the reader will get slightly paranoid about what’s real and what not (at some point) that would really make a good story.
    No need for big drama / action scenes there, you just want to drag the reader into that mind and question everything :)

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  7. Wow. I really don’t like it when people are all skeptical about Wiki.
    Kind of funny how all the open-source stuff is better.

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  8. Luke Maciak UNITED STATES Mozilla Firefox Windows Terminalist says:

    Thanks for the suggesting The Machinist – it looks good. It’s been put on my to watch list. :)

    @Andrew Um… Was this supposed to be a comment for another post maybe? I’m not sure what you are referring to here.

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  9. Bob UNITED STATES Mozilla Firefox Windows says:

    There’s a movie called Fade that came out last year with about exactly the same plotline.

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  10. Luke Maciak UNITED STATES Mozilla Firefox Windows Terminalist says:

    @Bob: Oh wow! I didn’t know about that. Thanks for the tip!

    I’m putting it on my to-view list even though the NY Times review is not very favorable.

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  11. Saman K. UNITED STATES Mozilla Firefox Mac OS says:

    I’m actually working on a film dealing with this Terminal Insomnia…I found the topic the same way actually.

    Let me know if you would like to collaborate. I can tell you what I have…

    Saman K.

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