Welcome (back) to Astrocytes. Some of you may remember my soon-to-return podcast of the same name. Lately I’ve been working out some ideas and memories about the time in my life when I made those episodes. The purpose of these newsletters will be to hopefully find an audience for some 2/3-3/4 finished pieces of writing, and to get some feedback on the direction, form, and content of a book I’m writing. Below is a draft of a piece I wrote for Bookforum, that was eventually killed/paid for and is now too old to sell as a review of a very important new book by Donna Jackson-Nakazawa.
Where Mind and Body Collide
Donna Jackon-Nakazawa returns, with The Angel and the Assassin: The Tiny Brain Cell That Changed the Course of Medicine
Donna Jackson Nakazawa’s crisp, humane, and riveting new book, The Angel and the Assassin, imagines a new way forward for medicine, one that rejects the false binary of mind and body. Her work focuses on a handful of recent scientific discoveries, which will completely revolutionize the way diseases of the brain are diagnosed and treated. Of the brain, Nakazawa writes, “There is only one organ in the human body that scientists have categorically believed for over a century was not affected by the body’s immune system.” She then proceeds to detail the ways in which emerging research has rendered that medical truism obsolete. The consequences of these revelations are already having a profound influence on the way neurological and “mental” illnesses are being treated, but the other, equally important, story the author tells is of the cultural impact this glib dualism has had, and what a more accurate scientific and sociological understanding of the brain’s relationship to the body might entail.
Nakazawa focuses on the discovery of lymphatic nodes in the brain, which demonstrates that, far from being a wholly separate entity, the seat of consciousness is intertwined with the immune system at large. The key research on understanding diseases of the brain and mind is on synapses, and how cells called microglia “prune” them—a process that is both essential for brain development and one that can malfunction with terrible consequences. Indeed, overpruning (see Siddhartha Mukherjee’s The Gene) is thought to be responsible for adolescents developing schizophrenia. The implications for the idea that mental and physical illness are separate and unequal are particularly striking. The book profiles several patients who are underserved by the medical status quo, such as Katie Harrison, who first started experiencing severe psychiatric symptoms as a graduate student and, when we first meet her, at age 34, is plagued with incessant, debilitating anxiety. Aside from the devastating, primary effects of her symptoms, Harrison is tormented further by her cruelly judgmental family. While they openly discuss their own physical maladies, there is tremendous shame associated with her mental illness. Harrison concludes, “Since I am the one who has the worst brain-related disorder in my family, I am the biggest failure of all.” Yet Harrison is not even the only member of her family who suffers from mental illness. She describes how her mother, uncle, and a cousin live with depression, obsessive-compulsive disorder, and generalized anxiety disorder, respectively. Yet she cannot seem to win their empathy, a compounded suffering that Nakazawa is lamentably familiar with: “It has been said that we, as a society, have decided whose suffering matters and whose doesn’t. And that artificial determination begets more suffering.” In thinking about this book, it first seemed necessary to make a clear distinction between the philosophical separation of the mind and the body, versus the medical, putatively empirical separation between the brain and the body. But ordinary people cleave to the latter concept without scientific training, and perhaps this medical distinction is merely an example of a cultural phenomenon so entrenched that its odor lingers on the cloak of scientific progress. Mind/body philosophical dualism and brain/body medical dualism are two analytical branches of the same misguided human tendency. The scientific, Enlightenment tendency to categorize and separate leads to great precision in specific areas while dismissing large swathes of lived reality.
Indeed, anyone with an “invisible” illness will tell you that one of the greatest obstacles we face is in simply explaining our illness to others. Merely having to explain to people that my progressive multiple sclerosis is chronic, meaning I’m going to be sick, on-and-off, for as long as the disease remains incurable, demands tremendous logical acrobatics. The situation hardly improves when one is talking about the doctor-patient relationship. Even specialists are often underinformed about the latest advances in their field. While I would give anything for a cure, the next best thing has actually been simple recognition that what’s happening in my brain is real, and that it’s not some kind of malignant, unconsciously driven conversion disorder. The Angel and the Assassin, as well as Nakazawa’s first book, Childhood Disrupted, help to provide just that reassurance. By anchoring previously nebulous symptoms and misunderstood medical disorders in new scientific research, the book shows people that just because medical science has not fully advanced toward understanding and treating their symptoms, that does not mean they deserve to be marginalized and ignored. “Medicalizing” the world, that is, reducing all human phenomena to diagnosable, quantifiable, Cartesian “facts,” usually only serves to further disenfranchise patients like Harrison or the present author. But rather than use science to push inconvenient outliers aside, Nakazawa here reaches out to those same outliers and shows us that our existence and our symptoms are as worthy of attention as those who fit more easily into the frustrating pseudoscience of “evidence-based medicine.”
Nakazawa writes that there is no fundamental difference between Katie Harrison’s anxiety and her sibling’s psoriasis: “When we look at a family like Katie Harrison’s … through the lens of microglial immune cells in the brain we can see that her family’s mental and physical health disorders have almost the same origin stories.” Just as important as recognizing the culturally overdetermined nature of the brain/body separation is understanding how intertwined the two are in causing a wide range of diseases. One obvious challenge of understanding the difference between brain and body is that mental illness can undoubtedly be caused or exacerbated by life events: “How do we parse out what is situational versus what is biological—e.g., stressful conditions versus overexcited microglia beginning to alter brain synapses in the developing brain?” As it turns out, the question is not just what situations cause mental illness, but how certain people respond to stressful life events based on their upbringing. Childhood abuse and severe stress literally shrink the hippocampus, the area of our brain responsible for emotional responses and where “much of our self resides.” Adverse childhood events (the subject of Childhood Disrupted) can alter the structure of our brains and also cause an immune response throughout our whole bodies. People suffering from mental illness show elevated levels of inflammatory biomarkers in their blood and, ”the higher an individual’s levels of inflammatory biomarkers, the more prevalent their psychiatric symptoms tend to be.” Nakazawa is also invested in offering real help to patients with enigmatic, intractable suffering. “We are on the cusp of a sea change in psychiatry,” she writes. In Harrison’s case, the novel, non-invasive therapy, transcranial magnetic stimulation (TMS), has an amazingly transformative effect where decades of traditional treatment had failed. So far, TMS works in about half the patients who have been treated. Not a perfect record, but about as effective as psychotropic drugs, without side effects and with a much more sophisticated targeting of individual symptoms.
Describing one’s illness to a doctor, a friend, or a close family member is always a dialectical exercise. It requires both one’s own ability to clearly articulate personal experience (not to mention medical science), and a complementary set of skills on the part of one’s interlocutor. This is an especially pointed exchange when we are talking about what might be called disorders of inner perception. That is, disorders, like mental illness or many neurological conditions, that can only be explained to another person but can rarely be quantitatively demonstrated to them. Are we dealing with failures of empathy in these exchanges, or are we acknowledging the inherent limitations of empathy? By medicalizing all experience, are we making people “dumber” in relation to emotional intelligence, or are we circumventing inherent limits of human compassion and providing an “objective” gloss on certain disorders of inner perception to thereby allow them into the canon of “legitimate” illness? In the best scenario, we are liberating invisibly ill people from the incessant burden of explaining and justifying their own frailties.
Does it matter if the person who doesn’t instinctively understand that being abused as a child leads almost without exception to some degree of mental or physical illness is, at the very best, profoundly lacking in basic decency? If scientific endeavor, like the adverse childhood experiences studies Nakazawa relies on in Childhood Disrupted, is about understanding outcomes, then we ought to be focused on preventing harmful results, or at least mitigating their consequences. It’s a similar kind of ideology that says people, most of whom could not summon this kind of empathy or humane wisdom for their closest friends and relatives, should do the heavy lifting of listening to others and accepting their pain and misery without demanding some simplistic notion of “proof” that says if it can’t be shown on a blood test or radiological imaging, it simply doesn’t exist. It’s choosing your own version of the world as it should be.
While Anne Boyer did not suffer from an “invisible” illness in her breast cancer memoir, The Undying, she often turns her poet’s eye to the meaning and quality of one’s interactions when living through a medical nightmare. There is a form of doctor-patient conflict borne from the patient’s fundamental narcissism—a universal, solipsistic view of the body. I know my body, the patient says, citing oxymoronic internet fact-finding as a substitute for inconvenient expertise. In The Undying, Boyer describes another, subtler type of conflict. It is not hubristic, Dunning-Krugerized self-regard that drives her to question her oncologist. While Boyer must eventually part with her cherubic physician, she does so with a grounded empathy: the doctor is reluctant to use the most aggressive treatment protocol on her, saying her prognosis is simply not dire enough to risk it. (What is more dire than death? How sick must one get to deserve a cure?) But the crux of this exchange comes in the form of what would be called counter-transference in psychoanalysis: “I’ve seen chemo kill people,” her cherubic-faced doctor tells her. This transferential encounter, like that between analyst and analysand, turns on a delicate but critical shift away from objectivity. The trauma of losing a patient is no doubt dwarfed by the trauma of seeing a patient die from a treatment the doctor himself prescribed. First, Hippocrates commands, you must do no harm. Boyer’s triumph of empathy is the doctor’s failure: he is looking at her and seeing only the possible downsides of providing the strongest, highest-risk treatment. Boyer—teacher, poet, scholar, mother—has examined the literature in light of having failed the standard treatment. Poring over the data, diving, again and again, into the inky online waters of PubMed, she can only see the risks of leaving a motherless child, a life only partially lived, a dry chrysalis of human potential.
Here too we should remember that Nakazawa’s books (and The Undying) are not really about other people, they are not really about the people we work so tirelessly to convince of our illness. They are replete, of course, with stories of uncaring, ignorant friends and relations, but these books are about the patients themselves, the people who are doing the suffering. Nakazawa’s work is about how trauma can warp and nearly break things buried so deeply in people that they themselves are not aware of them. That is, things like autoimmune disorders or psychiatric illnesses are so easily blamed on the sufferer that she is afflicted again and again: first, by a precipitating event like trauma, later by its pathological sequelae, and later still by the callous reactions of people who are supposed to care for her. It is a service of inestimable value to explain the way this unfolds, telling the general reader, simply: It’s not your fault. What greater strength, what more useful survival tool can the victim of such devastation possess than the knowledge that they are innocent? So it’s more than just a question of mind-body in the context of our outward relationships—doctor-patient, parent-child—but a problem of understanding ourselves. To know that the past isn’t even passed, that there are quantifiable ways of measuring formerly invisible experiences, and that there are new, truly targeted treatment options, is a way of retaking power for ourselves, of no longer needing the validation of underinformed doctors or uninterested family members.
Boyer and Nakazawa do not empower the reader by giving her a set of concrete facts that are immediately and adhesively applicable to her own life. While Nakazawa’s immense strength is as a journalist of science, the greater message she brings to bear in her work is much more important. It is the idea that there is a truly quantifiable thread connecting things like our childhood miseries and our adult infirmities, or the idea that there is no such thing as illness being “all in your head.” This latter, dangerous, historically misogynistic concept tacitly blames the patient for her own sickness. Yet, as Nakazawa writes, “The long-held line in the sand between mental and physical health simply does not exist.” What matters is that you are sick and that you might get better. The fallacy that a human being’s inner hell is any less infernal for want of a broken bone or genetic abnormality must end, not merely because it is no longer scientifically accurate, but because this particularly widespread delusion only serves to further torture the tormented.
###
Thanks for reading, and please stay tuned for more posts.
As a long term M S er, I want to thank you for this insightful, final validation that this incurable, life long malady is worth treatment, that I’m worth treating. Thank you x