This is Part 2. First, read Part 1.
by Zooko Wilcox-O'Hearn, written from 2013-01-11 to 2013-02-11
This was written as an outpouring of grief. Please judge it in that context. Also, these are my memories and opinions, and nobody else is responsible for any errors or offenses.
Once she was diagnosed as having bipolar disorder instead of depression, Amber started taking new meds, the ones intended to help with bipolar, and things went from bad to worse. Each new drug would seem to help for a couple of weeks or a month, and our hopes would rise, but then the despair and anger would rush back in, stronger than ever. The psychiatrists would doggedly prescribe a tweak to a dosage, or try adding in another new drug, and we would iterate the process, getting more and more desperate each time.
We were always private about this. Even our closest friends and our families saw only a part of our situation. I've never spoken about it in this degree of detail, or publicly, before today.
In 2007 Amber and I visited with Aaron and his then-lover, Quinn, in San Francisco. Quinn had a real bearskin rug, with a head attached and everything. It was white and startlingly soft. “Quinn's the worst vegetarian in the world.”, Aaron intoned. He was funny. “And I'm the worst communist in the world.”. He was wealthy from selling reddit.
I had discovered an article in a Zimbabwe newspaper blaming that miserable country's famines and disasters on unnatural and immoral acts, and citing the example of one Quinn Norton in California, USA, who had openly practiced polyamory with two men at once in previous years. Aaron said he was excited and proud to be dating the woman who was so sexy that her sexuality was actually destroying Zimbabwe. He was funny. But he also really was excited and proud. It was a pleasure to see how excited he was about her. He was 20 years old.
Quinn and Aaron visited us in Colorado that year. We went for a walk in a beautiful stony canyon and talked about all sorts of things. It was a happy moment in each of our lives. One of the four of us mentioned psychiatric treatment and psychiatric medication, but we didn't really talk about it. It would be the last time I saw Aaron in person.
In 2008, new symptoms started to appear in Amber: anxiety, insomnia, weight gain. She became obese – at 5'6" she weighed 185 pounds – and consumed with self-loathing. Dulled cognition, inability to find words, inability to feel emotion. And even more, and even scarier symptoms: “akathesia”, “brain zaps”, uncontrollable weeping, “rapid cycling”.
And always the despair, the rage, and the recurring, unshakeable urge to kill herself and get it over with. We circled lower and lower, increasingly desperate, increasingly hopeless. I traveled less frequently, participated less openly on blogs and forums. All of my net.friendships began to dry up.
And then in 2009, everything changed.
Amber read on web forums about a weight-loss diet called “zero carb”. She had often practiced a low-carb, Atkins-type diet, doing so consistently when she was young and slim, and sporadically in recent years when she was mentally unstable and fat. “Zero carb” was just a more extreme form of low-carb. On a zero-carb diet, you eat nothing but meat! She decided to try it for a month to see if she could lose some of her excess body fat.
This experiment had an unlooked-for and incredible effect: it cured her mental illness.
From my perspective, the effect was night and day. Ten days after she had begun her diet experiment, she commented to me that the diet seemed to be really helping with her mood. I sat down with her, gazed into her eyes, and spoke seriously: “Amber, you have never been stable and sane for this many days in a row in the ten years that I have known you.”.
She continued eating nothing but meat for around thirty more days, until she became pregnant with our third child. Pregnancy brought an overwhelming craving for carbohydrate and a bad case of all-day-nausea (“morning sickness”) and she reluctantly gave up on the all-meat diet for the duration of the pregnancy. She went back to being angry, depressed, and unstable for the next nine months.
A few days after our third son, Graeme, was born, she resumed the all-meat diet, and again the symptoms of her mental illness vanished within a few days.
That was in October of 2009. I'm now writing this in February of 2013. Amber has stayed consistently on her all-meat diet, and has been stable and safe since October, 2009. She has become a positive, productive woman. She takes care of family responsibilities, has healthy and active friendships, and does volunteer teaching at our elementary school and preschool. She has resumed her research in computational linguistics, reviving her dream.
She also rapidly lost almost all of her excess body fat, reducing to about 135 pounds, which is nearly the ideal body weight for her. So it turns out that her original reason for trying a zero-carb diet – as a desperate attempt to combat obesity – was a success.
Our marriage, having endured, blossomed.
And safe! Safe! She reports that she has had zero occurrences of suicidal ideation (the visualization or compulsion to kill yourself) in these three-and-a-quarter years.
Of course, we didn't know this was our future when Amber resumed her diet after the birth of Graeme at the end of 2009. Through those months at the end of 2009 and the beginning of 2010, I watched with gnawing fear, and then with growing wonder, as she continued following the same diet, and didn't experience a relapse. You see, one insidious aspect of bipolar disorder is that the “up” phases (technically “mania” or “hypomania”) appear as health to the victim. This can also deceive the victim's loved ones and friends, who may mistake dangerous progression of the disease for being a healthy period of cheerfulness and high energy. In some people, the manic phase of bipolar disorder can continue for months.
So it was cautiously that I started to think, as the year 2010 progressed, that this could be a real solution, and not another false hope, like the psychiatric meds had all turned out to be.
We didn't talk about this in public, nor with friends like Aaron. Even, or especially, with those friends that we suspected suffered a similar affliction.
Why not? Well, the fact that Amber had been sick in the first place was private. But aside from that, I didn't want to give people the impression that I was being irrational.
I despise pseudoscience, hucksterism, superstition, religion, and sloppy thinking and wishful thinking of all kinds. If you search the Net for “X cured my Y”, you'll find copious personal testimonials that sound like this story. This is true for such Y's as psychiatric disorders and cancer, and for such X's as herbal supplements, UFOs, and Jesus. And diets! An infinite variety of dietary practices are credited on people's personal blogs with having delivered them from an infinite variety of ailments.
I didn't want to appear as one of those people. I hate to imagine my friends privately rolling their eyes and saying “What a shame – Zooko has fallen for some sort of quackery.”.
I also didn't want to be one of those people. Amber and I didn't understand what had happened here, and her astonished psychiatrist had little to offer.
Was it merely a coincidence that the mental illness that had gripped Amber since adolescence had vanished at the same time she started the diet? If it wasn't merely a coincidence, if the diet really had saved her life as it appeared to do, then was this effect unique to Amber, or could it also help others? So we didn't say anything to our friends at first, but we began an investigation.
Our first clue was that almost all of the drugs used to treat Bipolar Disorder are anti-convulsants, originally developed to suppress seizures in epileptics. Epilepsy and bipolar disorder are probably related.
And it turns out, a diet similar to Amber's is a powerful medical treatment for epilepsy!
A “ketogenic” diet is a dietary therapy used to treat epilepsy. It has a very low carbohydrate content and allows the patient's body to enter into a metabolic mode called “ketosis”. A ketogenic diet therefore has some important factors in common with Amber's all-meat diet (which also produces ketosis), but also significant differences. This was just the starting point of our investigation.
If epilepsy and bipolar disorder respond to some of the same drugs, could this be because they involve some of the same underlying mechanisms? It could be. There are some bits of circumstantial evidence that suggest it. For one thing, symptoms of bipolar disorder occur seven times more often among epileptics than non-epileptics. Doctors observed starting a hundred years ago that people who suffered from both depression and epilepsy would experience a temporary remission of their depression after a seizure. This led to the development of Electro-Convulsive Therapy, which is a therapy of deliberately triggering a seizure in the patient's brain, and which is an effective treatment for depression and bipolar disorder.
So it seems there are probably some common mechanisms between mood disorders and seizures.
And how effective is the ketogenic diet for epilepsy? Tremendously effective! About a third of people who suffer from epilepsy are not helped by any combination of anti-convulsant drugs. Either the drugs don't control the seizures well enough or the side-effects from the drugs are so bad as to be intolerable. There are about a million people living in this condition in the USA today.
In those people – epilepsy sufferers who can't be helped by drugs – the ketogenic diet helps around two thirds of those who try it. In about half of those that it helps, it completely and permanently eliminates their seizures!
The fact that the ketogenic diet is such a powerful treatment for epilepsy shows that the diet is having a strong and profound effect on brain chemistry. This isn't one of those “alternative medicine” treatments whose effects are subtle and long-term, one of those treatments that might actually be doing nothing. Instead, its effect on epilepsy sufferers is usually more rapid and dramatic than any anti-convulsant medication, including those anti-convulsant medications that are used as the first-line treatment for bipolar disorder.
This means it is plausible that her diet really was the cause of Amber's mental illness suddenly letting her go.
And if it helped Amber, it might help others. Remember, the ketogenic diet helps about two thirds of the epilepsy sufferers who try it, so if it has a similar effect on bipolar sufferers, it might be effective for a lot of them.
I thought of all the hackers we know who seem to bounce between elation and despair, like Amber used to do. Among those I thought of was Aaron. He suffered from depression, but also sometimes evinced extreme enthusiasm, impulsiveness, and an ambition bordering on megalomania.
And, his diet had long been made up primarily of easily digested carbohydrate, which is in some sense the opposite of a ketogenic diet. Could this conceivably have been exacerbating a mood disorder in him?
Unfortunately, although our first clue was promising, we didn't immediately find additional evidence to follow it up. There haven't yet been any controlled experiments in treating psychiatric disorders with ketogenic diet. In the intervening two years, more scientific research that applies to this subject has been published, and we've found more evidence that weighs on this hypothesis, but in 2010 our investigation was just beginning.
That year, Aaron wrote to me asking about combining Tahoe-LAFS with Tor to make a censorship-resistant web host.:
From: Aaron Swartz <email@example.com> To: Zooko O'Whielacronx <firstname.lastname@example.org> Subject: tor2web and tahoe Date: 2010-09-17 It strikes me that tor2web needs a good way for normal people to upload files from it. One possibility I can imagine is a bunch of people offering to contribute disk space on servers from behind tor and then a way for others to publish to those servers. Is this the kind of thing Tahoe-LAFS would be good for? From: Zooko O'Whielacronx <email@example.com> From: Aaron Swartz <firstname.lastname@example.org> Subject: tor2web and tahoe Date: 2010-09-17 Hi Aaron! I don't know what tor2web is. I believe Tahoe-LAFS storage servers operating as Tor hidden services is architecturally sound, and we've long since committed the necessary configuration support to Tahoe-LAFS: https://tahoe-lafs.org/trac/tahoe-lafs/browser/git/docs/configuration.rst?rev=0d5c0862187fb726621d6293906ad8375455bc23#overall-node-configuration However, nobody has really used it and I suspect there would be performance problems and potentially issues with timeouts in polipo. So, what we need now is users, bug reports, and some hackers to investigate and tune up configuration and performance and so on. Regards, Zooko
Three months later he posted an idea about how to build a somewhat similar system, which he named “uncensor”.:
From: Aaron Swartz <email@example.com> To: Zooko O'Whielacronx <firstname.lastname@example.org> Subject: censorship-resistant Web Date: 2010-12-21 I wrote up some thoughts on how a censorship-resistant Web might work. I'd love feedback: http://www.aaronsw.com/weblog/uncensor
Then in January of 2011 he published an idea called “Squaring The Triangle” which used ideas from Bitcoin to design a solution to The Naming Problem. (Those ideas, or similar ones, had been independently invented slightly earlier by Matthew "appamatto" Willis, which gave rise to Namecoin.) If that idea works out, it will be a fundamental concept in networking technology which will probably outlive us all.
end Part 2