Reflections on the documentary Emma Wants to Live, which follows 18-year-old Dutch anorexic Emma during her final days. Discussion of the unity of mental illness as seen in the common features of addiction, Eating Disorders, and Obsessive-Compulsive Disorder.
The documentary is available on YouTube here. In this scene, a staff member who is an ED survivor holds Emma as she takes one of her meals. As awful as it is to watch her do something that horrifies her so deeply, it is a beautiful moment; the staff member's love, which is so pure and gentle that it's almost holy, radiates through the screen.
Emma Wants to Live is the most heartbreaking case study of mental illness that I've ever come across.
I watched the documentary weeks ago, and I still can't get Emma out of my head. The juxtaposition of her face, wan and wasted far beyond her years, and her voice, which is rich and humorous and lively, haunts me.
Emma Wants to Live is evidence of just how cruel, senseless, and ill-fated human life can be. Some of us are born with brains hell-bent on killing us, and the torture that our loved ones experience as they watch us destroy ourselves is a pain almost beyond reckoning.
The film opens in the Netherlands, where Emma's picture-perfect, bourgeois family is completely at a loss when it comes to understanding her anorexia.
Emma's Dutch doctors have washed their hands of her. She has been through the ringer of Eating Disorder treatment, been force-fed and then strapped down afterward so that she couldn't fidget away the calories.
Her doctor says that she won't force Emma to eat again. Such a treatment, she notes, is only temporarily effective, and it destroys the doctor-patient bond.
What this means, both Emma and her doctors tacitly understand, is that Emma is going to die.
Emma contacts the Cegonha Clinic in Portugal, which is run by Peggy Claude-Pierre, a woman without medical training whose controversial ED treatment methods - based on unconditional love - got her run out of Canada but also purportedly cured her daughters' severe anorexia. The clinic agrees to take on Emma.
"I think I might have pushed it too far this time, guys," she tells the close friends who accompany her to the airport. Her friends, too, are unable to comprehend why this popular, beautiful, big-dream girl is starving herself to death in front of them.
It is the last time that Emma's family and friends will see her alive.
After she arrives at the clinic in Portugal, the documentary captures footage of Emma's 24/7 obsession with calories. After so long without eating solids, she is only able to take in liquid meals.
She insists that she be allowed to supervise the production of these nutrient-rich concoctions so that she can monitor the water temperature, the measuring of ingredients, the cleanliness of the process; above all else, she wants to make sure that no surreptitious sustenance finds its way into her meals.
Emma takes her meals outside, surrounded by the bucolic beauty of the Portuguese hillside. She sits beneath a tree and "eats" while a fellow survivor of anorexia hugs her to help her cope with the awful anxiety that taking in nutrition produces in her.
Depending on the day, it might take Emma several hours to get down a single, medium-sized liquid meal. This process is truly uncomfortable to watch - her body resists and resents every small muscular movement necessary to get the liquid into her mouth and then swallow it.
Emma is sick with an infection that she can't fight off because she is immunocompromised essentially to the point of AIDS from extended lack of nutrition. She is direly underweight, fading fast.
She makes endless "deals" with the staff about what she will and will not eat, forever striving to shave off a few more calories from her daily intake. The staff tell her in no uncertain terms that she is going to die if she doesn't eat more.
Emma tries - she really fights, perhaps even valiantly - but she can't change quickly enough.
Emma has a final, confused phone call with her father, during which she enlists his support for a small business venture that she is imagining in her future.
On the last night of her life, the camera captures Emma trying to get warm underneath a blanket in the chair in which she sleeps. She stays upright, we are told, to try to keep herself from falling asleep - because you burn more calories awake then asleep, and if you fall asleep, you burn more calories in an upright position, which some of your muscles are activated to maintain.
The image of this smart, soulful, skeletal girl holding her wasted frame upright so that she doesn't fall asleep and get the rest that might save her is so twisted that I can't find the right words for it. My impression is that it's not Emma holding herself rigidly upright or refusing to move the muscles necessary to swallow her shake; it's Anorexia.
It's something deeply sick, a force from outside herself - almost demonic.
Emma is surrounded by beatific survivors as she passes away.
During a flash of lucidity shortly before she dies - right after she makes a comment that shows that she knows that she is slipping away - she reminds a staff member that it's time for her next meal.
She knows she's going to die; she wants to try to eat it anyway.
***
When loved ones of addicts are trying to get their heads around why addicts behave the way that we do - why we can't just "choose to stop," I tell them to think of addiction as a sort of intense Obsessive-Compulsive Disorder.
As with OCD, there is rigid observance of a ritual (the ritual of drug use), without which the individual is unable to function. There is dreadful, disproportionate anxiety attached to the prospect of not observing the ritual, which is pursued even to the extreme detriment of the person suffering from the disease.
There is constant preoccupation with small changes in internal state - how much of the drug has been taken; how much remains; when it will be gone from the addict's system.
Eating Disorders have a similar undercurrent of obsession and panic. In the case of anorexia, the fixation is on "safe" foods and gastrointestinal purity, on monitoring caloric intake and physical changes down to the infinitesimal details.
I make this connection between addiction and EDs / OCD for two reasons.
Firstly, in the 21st century, psychiatry is beginning to understand that all mental illnesses are essentially a single illness manifesting along different axes related to internal and external function.
The same handful of neurotransmitters and neural pathways are responsible for these conditions; their being out of whack in different areas of the brain is responsible for the varied presentations of the hundreds of recognized mental illnesses.
(Not surprisingly, I should note, there is substantial comorbidity between EDs, OCD, and addiction, more evidence of a single "Grand Unifying Pathology" manifesting along a spectrum or spectra).
This new conceptualization is already aiding in treatment of mental illness.
When it comes to EDs, OCD, and addiction, for example, the focus is shifting from emphasis on the underlying diagnosis / pathology to the driving symptom (e.g., anxiety attached to performing or not performing a certain action) and tools to combat it (mindfulness exercises, DBT / CBT techniques, and other methods).
Within this new paradigm, the anxiety is the critical part; what's causing it is of secondary, if any, importance.
The second reason is that, as I've discussed elsewhere, much of the stigma around addiction stems from the belief that an addict could simply choose not to use.*
*As I've written about extensively, this is emphatically, demonstrably not the case. The neural structures and pathways responsible for executive function, including the apparent capacity to make a decision to stop using, are damaged by addiction to the point that addicts essentially become automatons when it comes to procuring and using drugs.
The using ritual becomes so ingrained that addicts sometimes dissociate during the process of obtaining and using their substance of choice, "waking up" at some point after it is ingested.
When it comes to EDs and OCD, people intuitively understand that there is a point at which people cannot just choose to eat in a healthy way or to give up their rituals around cleanliness, safety, and so on.
It's easier for people to comprehend that someone who can't leave their bathroom because it's the only "germ-free" area of their apartment, who loses their social life and their job and eventually even the bathroom itself because of their mental illness, is not doing so in a deliberately self-destructive way.
Likewise with anorexics like Emma, who starve themselves to death.
In my experience, people accept with relatively little resistance that these behaviors are not the result of simple choice.
Probably because of the perception that we obtain something positive by using (i.e., the high from whatever drug we use), on the other hand, and partly because we can seem so "normal" when we're not heavily under the influence, addicts are judged to be people who could and should make a different choice but choose not to do so. We are viewed as dissolute rather than sick.
The social, professional, and criminal ramifications of this view are devastating.
The idea that we cannot choose to stop using seems to be exceedingly hard for some people to accept - perhaps, too, because their own use of substances is so easy for them to regulate.
***
On the subject of free will more broadly, I have a longer piece on the topic of biological determinism outlined. For now, I'll just note that, in my view, it's not just addicts and ED / OCD sufferers who lack free will to change their behavior, and the absence of free will doesn't just apply to disease states, either.
I'm a hard determinist, which means that I completely reject the notion of free will. Specifically, I'm a biological determinist, which in a nutshell means that my scientific understanding of how the brain works is incompatible with the existence of free will.
If that sounds crazy to you, I understand why.
It was an extremely difficult proposition for me to accept, too, and ultimately I did so only because I couldn't rebut the arguments in favor of it*/**.
*One of my professors, Derk Pereboom, wrote a book called Living Without Free Will, which influenced my thinking on these topics greatly.
**For a time, I hoped that quantum uncertainty might offer a way out. Unfortunately, however, this is not the case. If quantum uncertainty translated into uncertainty at the macroscopic level, then we wouldn't be able to use Newtonian physics to predict the path of a projectile based on launch angle, initial velocity, wind resistance, etc. - there would be unpredictable variations in path based on quantum probability distributions. The fact that we can predict trajectories with high precision is evidence that quantum uncertainty is confined to the atomic / subatomic level.
Many of the most brilliant minds in human history have been hard determinists.
David Hume and Immanuel Kant, arguably the two most influential philosophers in modern intellectual history, were both determinists (though Kant advocated soft, rather than hard, determinism).
Spinoza, the co-developer of calculus, was a determinist, as well.
In the twenty-first century, Stanford neuroscientist / primatologist Robert Sapolsky is one of the most brilliant adherents of the hard determinist view*.
*I have a serious cognitive crush on this guy. I highly recommend his book Behave: The Biology of Humans at Our Best and Worst, which offers incredibly rich perspectives on human social behavior, from politics to romance to crime. I recommend this book to all of my AP Bio students because it presents a wonderful overview of cellular and systemic biology, with diagrams and other reference materials that summarize much of high school and introductory collegiate bio.
Another objection that frequently comes into play is that "the Bible says" that we have free will. Suffice it to say that, if this matters to you, the Bible offers ample support for determinism (the Calvinist doctrine of predestination was one of the more coherent formulations of Christian determinism).
Personally, I don't give a steaming sh*t what the Bible says on the matter.
The essence of biological, or scientific, hard determinism is that - given full knowledge of an individual's genetics, their resultant neurophysiology, and relevant environmental influences - we can precisely predict their every word and action.
In fact, we're already able to do so using real-time neuroimaging in specific situations involving relatively simple decision trees.
When I'm teaching biological determinism, I begin with the premise that we are in control of all of our actions all of the time - which many people accept for their entire lives without ever questioning it.
From there, let's begin with obvious instances of reduced free will.
First, we'll take the case of a man called Phineas Gage (almost a legend at this point), who had a railroad spike driven into his brain, where it made contact with his amygdala, a midbrain structure that regulates fear and aggression. Afterward, this previously docile, amicable fellow became a complete psycho.
I've never met someone who would say that this change was his fault; it's easy for people to grasp that such a drastic shift with such an obvious physical cause is outside of the person's control and responsibility.*
*I believe I read that Phineas Gage did revert to a calmer character after some time, a testament to the brain's incredible plasticity.
From there, we'll move to a smaller but even more destructive physical change: The deletion of several genes on the paternal copy of Chromosome 15, which results in a condition called Prader-Willi syndrome. Individuals with this condition feel insatiable hunger like something out of a Stephen King novel; they are so hungry that food must be locked away from them, and not infrequently, they die from choking or literally eating themselves to death in other ways.
Anyone who has seen a patient with this disorder while they're eating knows that something is spectacularly awry with their biology and their mental functioning; again, it's not hard to understand that the choice to eat themselves to death is being made for them.
What we came to understand in the 20th century is that all behavior can be affected by similar biological quirks and accidents, most of which are genetic or epigenetic changes that cannot be observed in the same way that a railroad spike can be - but are equally real and powerful nonetheless.
We have identified alleles - variant stretches of DNA that code for proteins - associated with markedly, perhaps even exponentially increased tendencies to be violent, which manifest early on in life.
In fact, Stanford Law School is already holding cross-disciplinary, medicolegal symposia to discuss how to adjust the way that the legal system works, as well as the terminology that it uses, to come to grips with the reality that science is revealing - namely, that people who commit crime are biologically determined to do so (or at the very least heavily predisposed to do so) because of the interaction of their genes with their environments.
Lousy genes plus a rotten social background leads to a predisposition to crime that is looking less and less like a matter of making poor choices and more and more like a fait accompli incubated in the womb and sealed by early childhood environment.
The thing is, even healthy behavior is determined by genes plus environment: We have identified allelic variants that predict prosocial behavior and qualities such as kindness, career success, and marital fidelity as well.
If the mysterious, elusive free will exists, then the sphere within which it operates must be exceedingly niche; the cases in which it doesn't apply are increasing by the day. At present, none of modern science has unearthed any evidence in support of the existence of a transcendent faculty of free will.
Granted, the illusion of free will is incredibly intense and persistent (though addiction has helped me to see past it and to realize how little control I have over some of my behavior).
If you have a human being sit down and play a video game in which their inputs have absolutely no correlation with the program's outputs, they will consistently argue that there is a pattern that describes how their inputs are producing the program's outputs.
They cannot accept that their actions have absolutely no effect on the system; they automatically impute causative power where there is none.
What this says about the sheer ego of our species is something that I'd rather not dwell on.
The idea that we can choose, can do otherwise, seems to be - as my Zoomer students would put it - a massive, longstanding, psychologically comforting cope.
After the coping comes the seething, I am told, and seething seems to be the stage at which many religious, intellectual, and judicial authorities are currently stuck when it comes to the reality of determinism.
As I mentioned above, I plan to return to the topic of hard determinism as it relates to addiction and give it a proper, more thorough treatment.
For today, I just have these scattershot reflections on Emma, addiction / OCD / ED, and free will.
I don't believe that Emma had free will, but I fervently hope that Emma is finally free.
If you're interested in this kind of content and not totally sick of me already, you might consider checking out "The Selfish Genes That Prospered: The Evolution of Addiction" and "The More I See, the Less I Know: Three Flawed Models of Addiction."
As always, thanks for reading. Keep your heads up!
B.
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