Going Out With Dignity

DF was born with a time bomb in his genome, a deadly curse more horrifying than most. The name of this curse was Fatal familial insomnia (FFI).

Wikipedia describes the usual progression of this hell:

The disease has four stages:[8]

  1. Characterized by worsening insomnia, resulting in panic attacks, paranoia, 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, during which the person becomes unresponsive or mute over the course of six months, is the final stage of the disease, after which death follows.

From the case report DF’s psychologist wrote after his death:

DF was a right-handed, 52-year-old, white, American man with a doctorate in naturopathy. DF’s father, paternal uncle, and 2 male cousins were diagnosed with fatal familial insomnia (FFI). His father died at age 76; his uncle died at age 74; and each of DF’s cousins died before the age of 50.

Not only is there no cure for FFI; there is no known cure for any prion disease.

On the day it became clear he was experiencing the same symptoms his relatives did, DF must have known his chances were terrible. And even the minuscule odds that he could find a solution were marred by the fact that his problem-solving organ was the very part of him that was beginning to degrade.

And if there was a way out, how could he come up with a solution when he was so, so tired?

If only he could get just a little bit of rest.

There is a motivational technique I use occasionally where I look at my behavior and meditate on what my revealed preferences imply about my actual preferences. Often, I am disgusted.

I then note that I am capable of changing my behavior. And that all that is required to change my revealed preferences is to change my behavior. Though there is an element of sophistry in this line of thinking, I can report some anecdotal success.

Many of us here, like DF, believe we have a deadly curse—or at least we believe we believe we have a deadly curse.

Since I read The Basic AI Drives, I have known abstractly the world is doomed. Though my system 1 seems to have difficultly comprehending this, this belief implies I, and everyone and everything I love, am doomed, too.

Through the lens of my revealed preferences, I either do not truly think the alignment problem is much of a problem, am mostly indifferent to the destruction of myself and everything I care about, or I am choosing the ignoble path of the free-rider.

I notice I am disgusted. But this is good news. All that is required to change my revealed preferences is to change my behavior.

DF’s first tools were those of his naturopathic trade. He reported some success with a vitamin cocktail of the standard throw-in-everything-but-the-kitchen-sink, alternative-medicine style.

Perhaps something in his cocktail had some effect as his progression was slower than normal. But slow progression is progression just the same:

By month 15 (early stage II), vitamins alone failed to induce sleep. Following 5 consecutive nights of insomnia, DF became intensely irritable and delusional. An evaluation at the Massachusetts General Hospital in Boston, Massachusetts, found that he had suffered a minor stroke; he was anesthetized until he fell asleep. While hospitalized, he slept for 3 consecutive days and was fully alert and refreshed afterward.

Noticing the efficacy of the anesthetics, DF began to use them regularly:

Ketamine and nitrous oxide induced short (15-minute) periods of restful sleep, and were reapplied to offer more prolonged relief. Chloral hydrate in a light alcohol mix and/​or chloroform also worked. Approximately 15 months into his illness, DF began to take sleep medications on a rotating schedule. Ethclorvynol, zolpidem, and diazepam reliably relieved his insomnia for roughly 1 month. During subsequent months, only diazepam offered intermittent relief.

In Irrational Modesty, I argue modesty is a paralytic preventing otherwise-capable people from acting on alignment:

Those who are capable, confident in their abilities, and motivated to work on this problem do not need a peptalk. But the possibility that there is a class of highly talented would-be-motivated people who lack confidence in their abilities still haunts me.

[...]In the event anyone reading this has objective, reliable external metrics of extremely-high ability yet despite this feels unworthy of exploring the possibility that they can contribute directly to research, my advice is to act as if these external metrics correctly assess your ability until you have thoroughly proven to yourself otherwise.

There is no virtue in clutching Kryptonite. I advise you to drop it and see how far you can fly.

There is another class of anesthetic whose key feature is a sort of detached emotional state, a feeling of being “above it” or “beyond it” or even “below it”. Let’s call “above it” and “beyond it” high detachment and “below it” low detachment.

Low detachment goes by names like “cynicism” or “nihilism”. At its worst, one begins to take pleasure in one’s own hopelessness, epitomized by this thought: I believe we are all doomed and there is nothing we can do about it. Isn’t that metal!” If you find yourself thinking along those lines, imagine a man in a car hurtling towards a cliff thinking, I believe I am doomed and there is nothing I can do about it. Isn’t that metal!”.

High detachment goes by names like “enlightenment” and “awakening” and sometimes even “stoicism” It combines the, largely correct, realization that a great deal of suffering is caused by one’s internal reactions to external events with the more questionable prescription of using this understanding to self-modify yourself towards a sort of “soft salvation” of resignation, acceptance, and the cultivation of inner peace.

One former hero of mine (a brilliant mathematician who was planning to work in alignment after grad school) was completely demoralized by this line of thinking.

He seems happier now. He seems more fulfilled. He seems to enjoy his meditation retreats.

He seems to have stopped working on avoiding the catastrophe that will kill him and most of the things he used to care about.

I consider this to be something of a shame.

Though DF’s anesthetic regimen may have provided some relief, it was by no means a cure:

At 16 months, his symptoms included consistently elevated body temperature (as high as 102°F), profuse sweating, serious impairment of short-term memory (for which he compensated by keeping lists), difficulty maintaining attention (he often did not know that the phone was ringing), difficulty distinguishing reality from fantasy (he didn’t remember whether he had called a friend or had only imagined doing so), persistent headaches, hallucinations while driving (believed he saw people on the road when it was, in fact, empty), panic attacks (which were treated with meprobate), and a complete loss of sense of time.

In this same month his condition worsened further and we began to see hints of DF’s unusual mental strength and creativity:

[...]DF spent much of the day as an akinetic mute with terrible headaches, confusion, mood swings, and myoclonus of the left arm (treated with levodopa). Despite his outward “dementia,” he inwardly pondered approaches to his condition, and, when again able to speak, he requested a regimen of stimulants.

He was prescribed phentermine HCl 37.5 mg [...]The drug had immediate and dramatic effects, promoting not only alertness during the day, but apparently a sleep-inducing rebound when it wore off.

Once phentermine became ineffective, he moved on to other stimulants.

[...] At that point, methylphenidate offered some relief. After a few days, however, DF had a grand mal seizure and was again hospitalized. Although his thinking was clear and oriented, his speech was labored, dysarthric, and perseverative, and his fever had returned.

As the stimulants and their come-downs faded in efficacy, DF began to try to physically exhaust himself, forcing himself (in a state of complete mental exhaustion) to go on long hikes.

In the 19 months from the onset of his symptoms and, one presumes, in a state of unimaginable desperation, he got more creative:

Noting that his grand mal seizure was followed by restful sleep, DF sought to duplicate the experience with electroconvulsive therapy (ECT). Beginning in the 19th month of his illness, he subjected himself to 30 sessions during several weeks.

[...]At 22 months into his illness, DF purchased a sensory deprivation tank; a man-sized, egg-shaped chamber designed to eliminate all sensory input. DF became interested in this chamber because his sleep was constantly disturbed by any small sound, light, or motion.

[...] Because of inconsistent results in the sleep tank, DF explored ways to externally bias his biorhythms to favor sleep at specific times. These involved daily exercise; exposure to sufficient sunlight; and timed use of melatonin, diazepam, and tryptophan. Early, but not later, in the course of his disease, this combination was effective.

From a conversation with @TurnTrout on Discord

Let me share some of my experience and you tell me if it resonates. I think there’s an intense mindset you can pick up from the Tsuyoku Naritai sequence which is like, “It’s anime protagonist time”, and maybe that works for a while. It worked a while for me. But telling yourself “It’s time to be a dialed-in badass because the eyes of squintillions of future potential minds are on me, they need me”… doesn’t seem like the way to actually be a dialed-in badass? I haven’t found a way to sustainably make that mindset work. I agree that if you had write-access to your mood, then yes, consider doing that. But also, we are people[.]

And so I say “we are people” not as a coping mechanism which is like “I don’t want to do more work so I’ll just say ‘not possible’”, I say it because I honestly don’t know how to sustainably do the thing I think you’re pointing at. If someone knows how, I want to learn[.]

Just over 2 years after the onset of symptoms DF died of cardiac arrest, the result of heart damage from his FFI, his variegated treatments, and possibly drug withdrawal. He had lived 18 months longer than the typical case of FFI does.

In my mind, he died a hero’s death.

It is probably too high school to end with the Dylan Thomas quotation. So I will just emphasize the rationalist cliche that we should strive to feel the emotion appropriate to the predicament we are in.

TurnTrout argues that Tsuyoku Naritai is not it, and maybe he is right. I do not know what the correct emotion feels like, but I think maybe DF knew.

Too high school — but then again:

And you, my father, there on the sad height,
Curse, bless, me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage, against the dying of the light.