A Room with a Darker View

by Claire Phillips

  Organic disease

  Despite my mother’s long-standing diagnosis, it had been all too easy for me to slip back into “the metaphorical,” as Susan Sontag has been oft quoted on the topic, and view my mother’s illness as a psychological, self-perpetuating phenomenon: she was ill equipped to survive the stressors of “late capitalism” and the gender inequities in the work place and in those places that undergirded her domestic life; she was from an entitled family and therefore destroyed by her inability to “rate” as highly as the other top performers, the men who seemed to secure for themselves leadership roles, awards, and unassailable income. It always seemed possible somehow to fault my mother for her condition despite the hallucinations, the multiple relapses, the catatonia, the difficulty she had in making friends, or driving with confidence even though she remained squarely between the lines.

  Researching the brain science, for a short while, I was able to put this view to rest. “Mental illness is not in the mind, but rather in the brain,” biologist Dr. Ronald Chase tells us in his scientific memoir Schizophrenia: A Brother Finds Answers in Biological Science—a compassionate and determined work in which Chase weaves alternating chapters between the history and latest biomedical science undergirding the study of schizophrenia with the story of his brother’s illness.

  While initially schizophrenia was believed by Emil Kraepelin in the nineteenth century to be a disease of the brain, writes Chase, its neuropathology was so obscure that according to Paul J. Harrison of Brain magazine, it was soon identified to be “a ‘functional’ psychosis, a disorder with no structural basis.”21 It is only somewhat recently with CT scans and MRIs, Chase writes, that the neuropathologic basis of schizophrenia is once again of serious import. Additionally, he tells us past autopsies reveal a number of confirmed abnormalities in the brains of those who suffer from schizophrenia—for example, “ventricular enlargement and decreased cerebral (cortical and hippocampal) volume.” There are other noted structural differences. Of the brain disorder from which his brother suffered, Chase writes, “The brains of people with schizophrenia show a significantly greater reduction of gray matter (the area that includes regions such as muscle control, sensory perception, memory, emotions, speech, decision making, and more) than do the brains of healthy individuals. Moreover, much of the white matter (tissue through which the communication between the different areas of gray matter in the nervous system happens) has an abnormal physical appearance in brains of people who have schizophrenia.” Chase believes strongly that schizophrenia should be classified as a brain disorder and not a behavioral disorder. Like Parkinson’s disease or Alzheimer’s, schizophrenia should be treated as a medical illness.22

  The myths of schizophrenia

  Parsing recent neuroscience findings, Esmé Weijun Wang, in her recent groundbreaking work of life writing, medical inquiry, and cultural criticism, The Collected Schizophrenias, relays her dismay in reading about these inherent structural brain changes associated with acute and chronic schizophrenia indicative of a progressive neurological disease. “Schizophrenia’s unpleasant prognosis today,” Wang remarks, essentially augurs “a permanently damaged brain.” After having suffered a seven-month-long psychotic episode, a symptom of schizoaffective disorder, she describes being told by her doctor that, “the longer the episode lasted, and the more frequently the episodes occurred, the more damage was occurring to my brain.” This anxiety “about a loss of grey matter,” she tells us, “fed a variety of delusions: one afternoon I frantically called my husband at work to babble about spiders eating holes in my brain.” On the recent MRI findings she remarks, “It is disconcerting for anyone to be told that their brain is being damaged by an uncontrollable illness.”23

  Another related theory suggests that early treatment is key to staving off the damage. This view was echoed by a psychiatrist when my mother was being treated during one of her most persistent relapses, one in which she was alternately catatonic or severely delusional, unable to live on her own, being bounced between hospital psychiatric wards and the assisted living facility of Ramapo Ridge. My brother and I, realizing that my mother had endured a prolonged psychosis of several years before receiving treatment or being diagnosed with schizophrenia, lamented that if she had only received treatment sooner, perhaps the long-term neurological damage to her brain may have been significantly less.

  However clarifying these medical findings might be in granting individuals with mental health disorders access to proper medical care that stresses early intervention, as well as in directing biology-based abatement of these disorders, these results that posit schizophrenia as a progressive brain disease are, for some, contentious.

  Scientific studies exist that challenge these results as being the outcome of long-term use of medications or substances.

  According to the authors of “The Myth of Schizophrenia as a Progressive Brain Disorder,” there is much evidence to contradict the commonly held idea that schizophrenia is “a deteriorating disease, reinforced by MRI findings of progressive brain tissue loss over the early years of illness.” Consumer and family groups instead find that “the majority of people with schizophrenia have the potential to achieve long-term remission and functional recovery.” Recent studies take into consideration types of medication, sedentary lifestyle, duration of untreated psychosis, and stress, among other factors. The authors of “The Myth of Schizophrenia…,” Robert B. Zipursky, Thomas J. Reilly, and Robin M. Murray point to “compelling evidence that antipsychotic medications have an important role in contributing to these ‘progressive’ [brain] changes.” Remarking on the implications of many peer reviewed studies, the authors advocate that “mental health professionals need to join with patients and their families in understanding that schizophrenia is not a malignant disease that inevitably deteriorates over time, but rather one from which most people can achieve a substantial degree of recovery.”24

  Considering this view, I am reminded of how deeply perspicacious my mother remained despite the intense extrapyramidal side effects of her treatment. Despite the limitations in her coordination and the marked insecurity that abounded with everyday decisions, she remained inquisitive about the political realities of the times. She spent hours focused on her favorite MSNBC programs, paying keen attention to Barack Obama’s presidency. She often advised my brother in matters related to academic achievement and advancement. At times, she dared to dabble in the buying of high-risk stocks, without the benefit of having been weaned on such capitalistic pursuits. Despite the march of time, and despite the many relapses she endured, my mother craved more intellectual engagement, and never less.

  16 Showalter, Elaine. The Female Malady. London: Virago, 1987. 76–78.

  17 Ibid. 195–219.

  18 Experimental filmmaker and artist Sara Kathryn Arledge (Smith) writes about her first commitment at Napa State Hospital in 1960, where she received eighteen electroshock treatments, a standard procedure, which resulted not so surprisingly in the breaking of her back. (Smith, Sara K. Ed. Terry Cannon. Madness in Memory. Follies. 1974.)

  19 APA. “DSM-IV-TR.” Diagnostic Criteria for Schizophrenic Subtypes, Prentice Hall, 2010. Web.

  20 Siegel, Ronald K. Whispers: The Voices of Paranoia. New York: Touchstone, 1996.

  21 Harrison, Paul J. “Neuropathology of Schizophrenia: A Critical Review of the Data and Their Interpretation | Brain | Oxford Academic.” OUP Academic, Oxford University Press, 1 Apr. 1999. Web.

  22 Chase, Ronald. Schizophrenia: A Brother Finds Answers in Biological Science. Baltimore, MD: Johns Hopkins University Press, 2013.

  23 Wang, Esme Weijun. The Collected Schizophrenias: Essays. Minneapolis, MN: Graywolf Press, 2019. 1–29.

  24 Zipursky, R., Reilly, T. and Murray, R. “The Myth of Schizophrenia as a Progressive Brain Disease.” Schizophrenia Bulletin. 2013 Nov; 39(6): 1363–1372. Accessed 6 Nov.

  8

  love and disappointment

  Spring 2013

  I continued to f
ight the tide of my mother’s waning appetite. Shopping for her at Ralphs, I noted a sale on expensive bottled water. Fiji Water. I was reminded of my mother’s dream when I was a child that she would travel to Fiji one day. A pack of ten large bottles of Fiji Water was only just over one dollar a bottle. A deal I could not resist. This water seemed the perfect solution. Since her medications had stopped working, my mother struggled to manipulate ordinary household objects. The Britta water filter she had come to rely upon for the past year was useless and she was now fastidious about drinking bottled water.

  When I brought the hulking package of bottles back to her apartment, I made the worst kind of mistake, babbling on about the virtues of expensive bottled water with its vivifying electrolytes. “This is good water,” I gushed somewhat anxiously. “Like Smartwater.”

  “I don’t want electrolytes,” she griped. “Take it back.”

  Here we stood together in her galley kitchen. Once more to protect ourselves from prying eyes, my mother had insisted the shades of her apartment be closed at all times, even though this seventh-floor apartment faced a clear view of the mountains. Everything was suspect. The water. Sunlight. Preparing food for her, too, was an exhausting enterprise. Hard to believe: only months before she had welcomed me into this kitchen, insisting I eat, doling out little treats from her refrigerator, blueberries in a bowl, delicious pitted dates. Now, nothing I did was right. I couldn’t relax. After she commanded me one too many times, I snapped. I said things I had promised myself never to say. I dredged up the past. I badgered her. I told her that I was not going to put up with this abuse. I recounted the physical and verbal tirades from my childhood. In a tone as hostile as hers, I protested that I would not let her yell at or abuse me like she did when I was a child.

  “Rubbish,” she shouted in her defense. “I never did that.”

  What was behind her blunt rejection of the truth? Pride? Illness-induced memory loss? The agitation of such a prolonged psychosis? I had no definitive answer. After administering her evening pills—the Haldol, Seroquel, Cogentin, blood pressure medications, and replacement hormones—I took out the garbage and headed for my car. Parked on one of the many maddeningly identical, labyrinthine streets of the sprawling one-hundred-and-sixty-acre housing complex with mustard-painted garden apartments, almost like army barracks, and its Prisoner like ambiance, it took me a few moments to orient myself. I finally found my car and maneuvered for the front gate where an uniformed guard in an anachronistic Canadian Mountie uniform negotiated the flow of traffic. It was there that I called my brother and made an agonizing request.

  “Can we just stop taking care of her? Can we call 911 and let them take it from there?”

  “You mean abandon her?” John responded after a thoughtful pause.

  As unbelievable as it might sound, I could no longer fathom caring for my mother. I had no immediate family to rely upon for counsel or assistance other than my brother. Having blundered not getting medical help for her sooner, I found myself more and more shaken by my mother’s escalating paranoid accusations.

  “Yes,” I responded ardently. “Abandon her.”

  My brother then confessed to having had similar thoughts during phases of her illness when the situation appeared to be hopeless, when after months of treatment nothing seemed to be working.

  “If we do that,” he spun a terrifying scenario, “she will be bounced from hospital to hospital. And then when her Medicare runs out and the insurance won’t pay for her anymore, she’ll end up in an assisted living facility, where they’ll drain her of all her money, and after that, when she has nothing left, she will end up on the street.”

  For a brief moment, driving down Third Street in rush hour traffic at twilight, I contemplated the idea of my mother homeless and fending for herself on the streets of Los Angeles. I weighed the pain of forsaking my mother with the agony of caring for her in her present state. Everywhere I turned, stationed on bus benches or maneuvering shopping carts filled haphazardly with worldly possessions, people appeared to be in a predicament similar to the one my brother described.

  “I guess we can’t do that,” I relented, losing myself for a short time in the mounting violet of the desert night sky.

  Nothing according to plan

  My mother’s psychiatrist had agreed that she might benefit from at-home care as opposed to being committed to a hospital. We hadn’t done this on a whim. Initially we had been supported in our idea. We had been told that in approximately two weeks the drugs should start to work. Over a month had passed now, and she wasn’t better. In fact, she seemed aggressively worse. After my frenzied phone call, John checked in with her doctor about our options. The doctor suggested we double up on her Haldol since we were unable to increase the Seroquel without medical supervision. John agreed to this plan, and the doctor wrote a prescription.

  Of course nothing went as planned. The following day there was confusion at the pharmacy about her prescription, so we couldn’t get those other pills. My brother did not want to administer the higher dosage without a written prescription from the doctor even though we were in possession of the medication. It was another week before we would be able to increase the dosage of the Haldol my mother was taking.

  Parkinson’s disease

  Past experience told me that my mother would not want to take a higher dose of Haldol, what had been the preferred emergency psychiatric fix from the late 1960s through the early 1980s. My mother was all too aware of the negative side effects of Haldol, a dopamine inverse agonist. However my only thought at this juncture was to get her on more medication, anything in order to see some improvement.

  That evening in her apartment, I tried to prepare her for the increase from five milligrams to ten.

  “John spoke to your doctor, and this was his suggestion. We know you need more medication. You’re not getting better,” I explained, hopeful she might agree to the change. My mother became very agitated.

  “No, no,” she said, glancing fretfully at her hands. “I’ll get Parkinson’s disease.”

  At wit’s end, I shamefully demanded that she increase her dosage of Haldol.

  “I’ll end my life if you don’t,” I said, making an unbelievable threat, and not for the first time.

  Running to the safety of her bedroom, she shouted in her defense, “No, I’ll get Parkinson’s disease.” As was so often the case, my mother was correct in her general view of her healthcare. The tremors in her body would be uncontrollable. This doctor-sanctified solution would get us nowhere.

  The dopamine system

  Now I had two parents in this state. The irony was not lost on me. When I turned thirty-four and moved from San Francisco to Los Angeles, shortly after publishing my fantastic novella, I noted a perceptible difference in my father’s physiology. His left hand had begun to involuntarily shake. Prone to romantic viewpoints, at first I thought this was age-related or the effect of a commanding personality. My father’s “tight grip” on things had translated into a nervous tic. He was advancing in years, I rationalized—in his mid-fifties. Perhaps he was simply “breaking down.” No one told me otherwise, and I never bothered to ask. The denial might also have been the result of an unquestioning belief in my father’s life-affirming powers. I couldn’t fathom a case in which my father would experience human frailty or vulnerability. Only after a strangely prescient dream did I guess something might be wrong.

  When I called to ask my father about his tremor, his wife answered the phone.

  “What’s wrong with Dad’s hand?” I demanded. She declined to answer, remarking that it would be better if my father were to tell me. “You must tell me,” I was adamant. “I have the right to know.”

  “Your father has Parkinson’s disease,” she told me, a result of his early experiments on microwave-excited electron paramagnetic resonance in rare earths. At the time, it was not widely known that continuous exposure to these elements might result in neurological disease, even death. The impact of such
exposure, even today, is not completely clear.

  My stepmother tried to explain to me my father’s condition: “You know how your mother has too much dopamine, well, your father has too little.”

  While the role dopamine plays in schizophrenia is much more complex and not at all conclusive, I could not help but find my stepmother’s words strangely fitting. That my parents would suffer from the same disorder, only on different ends of the neurological spectrum seemed oddly clarifying. Spartan, smart, virtually unconcerned with material things or acquisition, they shared an inexplicable affinity for as far back as I could remember. My father made a lifetime of studying the formation of stars using an instrument invisible to the naked human eye. My mother, too, appeared distracted by a realm imperceptible to most.

  Closed for repairs

  My mother complied with our wishes that she increase her dosage and began to visibly shake almost right away. Tremors taking hold of her legs, her hands. She sat listlessly on the couch and stared out the window, partaking in little else. She rarely spoke, had stopped eating, and refused to take walks. She fought me whenever I tried taking her to the hair salon.

  “It’s dirty there,” she would complain. Or: “They won’t want me there,” she would murmur in a soft, heart-breaking tone. Just as inexplicably, she refused visits to the La Brea Park café where we once ate fruit that she liked.