A Room with a Darker View

by Claire Phillips

  After my mother died, I no longer woke up compelled to slit my wrists. It was an immediate release. Despite this relief, I ached daily for her presence. At home I was numbed to the loss of my mother, yet grief-stricken almost from the moment I started up the car and left the Via Zurita. Subsumed as I passed through the familiar streets of Silver Lake, even more daunting was time I later spent meandering the aisles of grocery stores: Gelson’s, Ralphs, Trader Joe’s. All places I frequented trying to manufacture some sort of sustenance for my mother. Whenever my cell phone rang I wished it were her, noting the irony: that after years of averting her phone calls, her bold attempt to stay connected to the world outside the narrow confines of her illness, I would give anything to hear her voice on the other end of the phone one last time. Most of all, I felt deeply troubled that the last time I saw her I had fought needlessly with her, unsympathetic to her condition, one she had no control over and had struggled valiantly to live with for over forty years, perhaps more.

  Mount Sinai, Simi Valley

  My brother’s speech at my mother’s outdoor funeral was arresting. Wearing a yarmulke and fully composed, he spoke of her many accomplishments. Some, such as her pro bono work on amnesty, had been unknown to me at the time. He acknowledged the fact that he had lost his greatest “advocate.”

  “For better or worse,” he said, “my mother called me every day, several times from the time I was sixteen years old. I still have over one hundred messages on my phone I have yet to erase.”

  And just as gracious was my great-aunt Freda, my mother’s eighty-eight-year-old paternal aunt from South Africa. With a fractured rib and a painful hip, she was unable to walk the distance to the grave from the parking lot, so her daughter read the eulogy. Instead of being hidden from view, my mother was present among her family and recognized.

  That our cousins took time from work to be there with us, and for her, was especially powerful, considering how difficult I found it to carve time out from my own fraught schedule. Watching my mother’s coffin, a simple oak box adorned with a bouquet of long-stem flowers, angled into the deep rectangular groove cut into the ground, hawks flying overhead, golden canyon rock hailing in the distance, I understood for the first time the necessity of burying one’s dead. Despite the stunning distance of this auxiliary mortuary from Los Angeles, roughly thirty miles, I felt some peace in burying my mother here. Initially having insisted upon cremation, I could not imagine the same relief in having her returned to me as ashes in an urn.

  On grieving

  The days that followed were as bad as people had warned.

  “Losing a parent is one of the hardest things you will endure,” a friend had often declared.

  A cousin called to tell me about having lost her father, a man she was not on particularly good terms with at the time of his death, and that I would be haunted by the finality of my mother’s passing.

  “You will want to speak to them again, but you will not be able to.” This would be an agonizing, estranging time.

  After an initial day-and-a-half bout of maudlin weeping, I told myself that I had purged myself of the sorrow. In the coming days, my grief would lessen. After all, I had been mourning my mother’s various losses for decades—her career, husband, suburban home, comportment, and mental health. I had shed my fair share of tears. I would soon be free of this long grieving process. I thought. Of course, that was simply fantasy. Meanwhile, my brother, systematic in his approach to life’s challenges, researched grieving online, informing me of its demands.

  “It should take about three months for the heavy grieving to end. If it takes longer,” he warned, “we should get some professional help.” Unsurprisingly, this was the approximate time it took to stop weeping whenever I got into the car or shopped a supermarket aisle: places or activities that had become synonymous with caring for my mother.

  After this time, even the distinctive sound of her voice began to fade. A predicament I came to rue almost immediately.

  NMS

  A week after she passed away, at dinner with a friend who works in the mental health field, I divulged the strange and difficult trajectory of my mother’s final weeks. I confided my failing to acknowledge the symptoms of my mother’s final illness. I just didn’t understand why she continued to suffer from such extreme diarrhea. My mother had never suffered from an illness of this kind before, and I had been so slow to respond and felt ashamed.

  “Yes,” she explained her take. “It’s fairly common for people who take antipsychotics to develop these sort of symptoms, a side effect of the medication.”

  Again, I was struck by the extent of my ignorance. Why hadn’t I educated myself about the side effects of her medication? Why hadn’t her doctors mentioned this possibility? This resonated with what I had read in biologist Ronald Chase’s memoir, when he describes his brother Jim’s final days—an inexplicable and rapid decline in which his organs began to fail him—and begins to consider that his brother’s demise may have been an effect of his medications.

  Chase remarks of his research into this topic, “I immersed myself in the psychiatric literature where I read about a condition known as neuroleptic (antipsychotic medication) malignant syndrome (NMS), described as ‘an idiosyncratic, life-threatening complication of treatment with antipsychotic drugs that is characterized by fever, severe muscle rigidity, and autonomic and mental status changes.’” Elaborating further, he cites an American Journal of Psychiatry article, “The exact causes of NMS are variable, but ‘nearly all case (studies) of NMS patients have reported physical exhaustion and dehydration prior to the onset of NMS. Elevated environmental temperature has been proposed as a contributing factor in some studies.’”27

  It was extremely hot when my mother died. She was suffering from constant dehydration. Her lips were routinely peeling, chapped almost beyond recognition. Delusions were certainly a factor. Had she begun to suffer from a case of NMS? Could I have been better prepared for this end, or helped her better, if I had known what to expect?

  Rosh Hashanah, 2013

  As it turned out, my mother had died during the week of Rosh Hashanah. Not a practicing Jew, I had little idea of its significance beyond being the start of the Jewish New Year. At a family celebration, another family member related by marriage informed me that it was the only holiday in the Jewish tradition in which we celebrated death. All other celebrations focused on some element of life. I was stunned. And I felt some relief. Romantically, just as I imagined the spirit of departed F. Scott Fitzgerald mediating Zelda Fitzgerald’s death, when a fire erupted in a psychiatric facility where she was receiving insulin treatments and whose escape along with the other patients was “hampered by locked doors, and heavy windows shackled with chains,” I conjured a similar scenario in which during this Rosh Hashanah week, my devoutly religious grandfather came for my mother to usher her out of life. It was her time; he had organized for this to happen. That her passage was not the lonely one it most undoubtedly was.

  Later, my brother confided in me a dream he had of finding himself in the house we grew up in together, our mother in her bedroom, in bed, confused and unsure of her predicament.

  “You are no longer alive,” he told her. “You can leave this place now.” He kissed her on the forehead, told her how desperately we missed her, and the dream faded. In her troubled state, I could only imagine the confusion that beset her as death loomed in her periphery.

  1959–2013

  Shortly after the funeral, my mother’s sister Anne called. We had hardly spoken over the years. As a young girl, I adored my aunt but rarely found myself in her company. On this occasion, she told me what it was like to be a woman in the 1970s living in Texas. How impossible it was for her to do the most ordinary things that I take for granted, without the approval of a husband. How she could not purchase a car without the permission of her husband. Or how she was unable to open up a line of credit at a department store, despite the fact that she owned a car and was gainfully emplo
yed. She fought handily with these corporate and bigoted foes. Marveling at my aunt’s feminist prowess and impressed by the battles fought by an earlier generation of women, the conversation then turned to my mother’s first breakdown in college. It was a story that I had not heard in detail before.

  “Your mother used to call me in boarding school while she was studying at Oxford, and she would tell me stories of how the police were following her, or how they were watching her in the courtyard at St. Anne’s, where she was a resident.”

  I imagined my twenty-year-old mother peering through sheer curtains of one of the red brick student housing blocks, frightened by these inexplicable hallucinations. “She would call to complain about strange smells and insist that she was dirty,” Anne divulged. “I didn’t know what to think.”

  The parallels were undeniable. During the past nine months, I had not confided in my aunt about the hallmark features of my mother’s illness. We had hardly spoken during this time. Listening to my aunt’s recollections, I came to realize that my mother’s illness had taken the same shape her entire life.

  The exceptional schizophrenic

  As I grieved the loss of my mother, I continued to write on her illness. Of all the reading I did on the subject, Elyn Saks’s bestselling memoir The Center Cannot Hold, a work I had once consciously avoided in an effort to distance myself from what I deemed a story of the “exceptional schizophrenic,” was the hardest to endure.

  Saks’s story mirrored my mother’s in two specific ways: first, she attended law school at Oxford, roughly seventeen years after my mother had. And it was there, just as it had been with my mother when she was on a fashionable fad diet, that Saks had her first full-blown experience of psychosis. From her, I discovered how inhumanely those with an illness might be treated. Being strapped down was a common early experience for Saks. During one internment by the EMT, she was actually placed under a net. The admitting doctor promised that they would not use restraints, but instead, once her trust had been earned, she was fastened with leather straps to the bed.

  I screamed at the top of my lungs and struggled against the group of hands pinning me down…. Then it got worse, since apparently binding my arms and legs wasn’t enough. They arranged a net over me—an actual net—from the top at my neck to the bottom at my ankles, covering my legs, my torso, my chest. And then they pulled it snug at the four corners. I couldn’t move at all, and felt like all of the breath was leaving my body.28

  This experience of being admitted to the “seclusion room” of the Yale Psychiatric Institute terrified Saks, and in turn it terrified me. The jarring experience prompted her to research the use of restraints in America, discovering that at one time over a hundred people a year died through their use. I had to ask myself: Was this why my mother refused treatment? Had she been humiliated and hurt this way years before when she first became ill? Did she suspect that nothing could be done for her and that she might be brutalized before being forced to endure more powerful and ineffective electroshock therapy? Is this why she took such pains to hide her afflictions from outsiders? Why she muted herself in public and launched into frightening paranoid diatribes at home?

  I had never considered my mother’s plight from this perspective. I had never stopped to imagine what it might be like to confront such a limited set of options, what it might be like to know that an illness might place me in harm’s way. Saks’s powerful battle to sidestep the ravages of a drug treatment made only just available when my mother had her first break, through the reliance on the benefits of talk therapy alone, could not stop the disease’s advance. When confronted by her doctor with the need to begin neuroleptic treatment, Saks recalls, “I knew exactly what a neuroleptic was—antipsychotic medication with terrible side effects, like heavy sedation, arms or legs that won’t stop trembling (sometimes irreversibly), and a worst-case scenario that included death.”29

  Self-remonstrating voices

  Like my mother, Saks was ambitious, tough. She had earned her ride at Oxford and was determined to make something of herself. Only after several bouts of the illness, dramatic episodes that nearly upended her budding career, did Saks relent and go the chemical route. As she tells it, a combination of anti-psychotics, Kleinian talk therapy, and deep committed friendships with men was what saw her through. Saks did not suffer from paranoia like my mother; she did not accuse others of conspiring against her although she was clearly burdened by powerful hallucinations and delusions. Instead, it appears her delusions were based on evil acts she believed she had committed herself. More often than not, she seemed to turn on herself and not on those she loved. In precise detail, she imparts the inner haranguing, the vicious taunts that assailed her as she went about her daily business:

  Now she’s walking down the street. She’s ugly. People are looking at her. People are not to be trusted. People are looking at her. People are not to be trusted. Be careful. Be vigilant. They will hurt you. That man’s face just turned into a monster’s face. Be inconspicuous. Don’t let them see you.30

  Did my mother battle with similar self-remonstrating voices? Was that why she insisted, whenever she relapsed, that she would not be welcomed wherever we went? My mother was not so fortunate as to find talk therapy at a young age or to make deep committed friendships with like-minded peers, although she had the ballast of my father’s commitment to her and their marriage to keep her safe, until their divorce. Saks would go on to obtain a full professorship in law at USC and succeed in her profession as a mental health lawyer as well as marry. My mother would not be so fortunate as to earn a position in the working world beyond the self-employment that was bolstered in part by my father’s stable salary. Had she been born a decade later or been encouraged to seek proper treatment sooner, maybe things could have been different.

  My father’s story

  While Saks’s parents apparently failed her, almost entirely distancing themselves from their daughter’s life, her wedding, and other important celebrations, they had perhaps little access then to information on mental disorders to help them bridge the gap. My mother’s father, a world-class doctor who confronted stigmatizing, brutal illnesses on a daily basis would seem to be in a different category altogether. That Grandpa Mike had hardly intervened on her behalf, securing or demanding that she get medical attention, was nothing short of ironic. My father seemed equally cognizant of this. One night at a family dinner in Pasadena, years before my mother would move to the West Coast, I asked my father what he thought of Grandpa Mike’s lack of involvement. In Zimbabwe, I had heard multiple stories of his ability to diagnose impossible illnesses by more than one of his former patients. Why was he not able to do the same in my mother’s case?

  “Why didn’t he do more for her?” I asked my father at dinner one night. “He was such an esteemed doctor.”

  “That’s life’s cruel irony,” my father remarked sharply. “It’s always much easier to solve other people’s problems than it is to solve your own.”

  He then shared with me his experience of being engaged to my mother when she had a psychotic break in university during final exams. “Your grandfather lied to me,” he recounted bitterly. “He told me that your mother would never get sick again.”

  At the time, my father was twenty-two years old and my mother was twenty. Whether my grandfather lied or not is not entirely knowable. It is possible he believed my mother’s breakdown was caused solely by environmental factors, dieting, and exams. He would have clearly wanted for his striking, hard-working daughter a full, prosperous life. For how long he operated under this misconception, I cannot say. What information on mental disorders did he or my father have to help bridge the gap?

  My mother maintained an unaffected mien for several years after marrying my father and bearing two children. Only when she began to work did her troubles magnify. It could be argued that had she not gone back to work, she may have never endured another psychotic episode. The genetic component of her illness may never have been trigge
red. But I find this view less than helpful. Who among us can steer clear of stressful challenges for an entire lifetime? Who would want to?

  From my father’s tone that evening, I took it that he felt robbed of his right to a happy family life, or perhaps more aptly, of making an informed decision.

  Some distance

  Almost a year to the day after my mother’s death, after years of working to keep “my salary up” and qualify for the high-priced mortgage, I managed to purchase an eight-hundred-square-foot house in the foothills of the San Gabriel Mountains, in Altadena, a suburb of Pasadena that had once been almost exclusively African-American. The 1920s bungalow that I found, painted in the manner of Colonial houses on the East Coast, a bright yellow with long black shutters, made me think back on my childhood in New Jersey. Mature deodar trees, sweet smelling Tibetan firs, over one hundred years old, grace the front yard of the house, and in the back of the unexpectedly large lot, is an unobstructed view of the mountains. My mother would have loved the place; she would have prized the trees and the large parcel of land. I had her to thank for this. Her frugality over the years had afforded me that last bit of help that I needed.

  Unpacking, I discovered an image of my mother that I had never examined before—a tiny, black-and-white photograph with a thin white border. A girl of eight or nine is sitting in her parents’s garden on an unusually large woven stool, her thin legs crossed at the ankles. Mom’s hair is parted on the side and worn in one large braid. Her forehead is free of hair and her brows straight and neat. She wears a schoolgirl dress in a chevron pattern with a Peter Pan collar. Hands clasped carefully in her lap, she wears a slight smile. Her eyes are steady and piercing. For what feels like the first time, I see my mother, a bright-looking girl, poised dutifully and without perceptible fear. Eyes trained on the boundless years ahead.