WHEN I WAS in my 20s, my mother developed symptoms of a late-onset mental illness. Small and infrequent at first, I dismissed her manic delusions until they grew so wild and permeative that I had to physically escape them. Afterward, I wondered at how I hadn’t recognized sooner just how much my mother had changed, and a friend told me this analogy: if you try to put a frog into a pot of boiling water, he’ll immediately jump out, but if you put him in when the water is room temperature and allow it to slowly heat, the frog won’t realize he’s boiling until it’s too late.
In her recent memoir, A Room with a Darker View, Claire Phillips describes the gradual increases in her mother’s erratic behavior over the course of her own childhood and adolescence. “As it stealthily progressed,” she writes, “we grew used to its strange permutations, making odd justifications for its intensifying demands.” From not being allowed to have friends over for fear they might injure themselves and sue, to being blamed for her mother’s loss of a job opportunity for not answering the phone politely enough, Phillips tracks the changes leading to her mother’s eventual diagnosis of paranoid schizophrenia. She laments that she and her family “missed the very common hallmark signs of the disease,” which were unknown to them at the time. Even now, does the average person associate more with schizophrenia than the idea of hearing voices?
As the daughter of a woman who had a similar mental illness, I’m grateful for the larger societal push to openly discuss such chronic conditions. Through research into her mother’s schizophrenia, and vignettes depicting the hoops of the American health-care system her family had to jump through in order to treat it, acclaimed author Claire Phillips illustrates in A Room with a Darker View that, as a society, we still have a long way to go in order to better understand and help those with mental illnesses, and to assist their families in getting their loved ones the critical care they need.
Banner photo by Mara Feder.
HOLLY RUDOLPH: Your family didn’t talk about your mother’s schizophrenia, so you ultimately “had no choice but to write about” it. Was it difficult to release this memoir into the world?
CLAIRE PHILLIPS: I grew up in the dark about my mother’s illness. She had her first psychotic break at Oxford University while studying for her exams in the late ’50s. Whether this was a source of shame or whether my family hoped to protect their children from knowing the truth is not something that I will ever know. I suspect it is a mix of both. Because we were discouraged from learning the truth, and I was repeatedly told “not to tell” my teachers about my mother’s erratic, destructive behavior, it had been ingrained in me young, not to make our family drama public.
My mother was also quite alarmed when I mentioned her diagnosis to her over the phone for the first time. She insisted she didn’t have schizophrenia, and it was so heartbreaking. Achievement was the main ethos in my family, and she felt undone by her diagnosis. I never wanted to add to my mother’s feelings of disappointment; the loss of her law career and her husband of 25 years already seemed like too much to bear. Writing this memoir, I tried my best to emphasize her finer points to balance my perspective of a very troubled relationship.
What was the origin of the memoir?
By the time my mother was finally living in California and in her 70s, she suffered consecutive relapses so consequential to her health it grew to the point that I could think of nothing else. The science fiction manuscript that I was desperate to rewrite had to be forfeited. I couldn’t date someone beyond a few weeks. My every waking moment, when not adjuncting as a writing instructor, was spent adjusting to my mother’s needs, fretting over her progress. It seeped into every aspect of my life, and I realized I was done hiding from the consequences of a chronic illness for which treatment is not always stellar, and social services slim. Steve Erickson, editor of Black Clock magazine, and senior editor Bruce Bauman commissioned a work of 7,000 words, shortly after my mother passed away. This piece was a lot more experimental than the book turned out to be, and it gave me the support I needed to start researching the medical history of schizophrenia and my mother’s previous treatment.
The narrative unfolds in fragments that jump back and forth in time. What made you decide to organize it in that way?
I actually wanted the narrative to be more fragmented, to jump back and forth more radically. But it just wasn’t possible. I needed more structure. Instead I chose a semi-chronological vehicle, beginning with my earliest memories and ending shortly after my mother’s departure from this mortal coil. It needed to be clear that this was my perspective and no one else’s in order for it to be fair. In a very real sense, I am the antagonist in my mother’s story. I do not set out to capture what it is like to undergo psychosis. That is not my story to tell.
Also, I have never been a realist. I’m partial to satire or speculative fiction. I have no interest in trying to recreate a sense of unity, when memory operates in such a partial way. Also this is an intercontinental tale that jumps between Africa and England and the United States. Before I turned 13, I had moved five times between continents, and my mother seven or more times. A back-and-forth narrative seems somewhat natural given our family history. It’s also probably pretty clear that this is not a restitution narrative, the more popular form of illness narrative. These stories Arthur W. Frank observes powerfully in The Wounded Storyteller “no longer work when the person is dying, or when impairment will remain chronic.” There are no easy answers here. No one undergoes treatment for psychosis and is as good as new. There are multiple viewpoints that will never be reconciled. I think this is another reason for a more fragmented style.
Despite the lack of chronological order, there’s a built-in tension in the way that the symptoms of your mother’s mental illness progress: little signs that become bigger and more frequent, leading to the naming of her illness, and then full-blown psychotic episodes. How intentional was that?
Thank you for noting this. Not naming her illness in the first part of the book is an attempt to distill a similar atmosphere for the reader as the one in my household growing up — the confusion and frustration and helplessness in not knowing what was wrong. When the reader finally recognizes that my mother’s illness was the source of her antagonism toward other members of the family, it helps explain the hostility and confusion of the earlier scenes, and underscores the damage of well-kept family secrets and stigma around illness. Throughout, the reader can see how easy it was for me still to conflate her illness with her personality. That is the most dehumanizing aspect of how we coped with schizophrenia, I think, at least in our family.
In a vignette labeled “Senseless laughter,” you describe your mother’s random, sometimes hours-long bouts of laughter and how your friends would sometimes hear it when you were on the phone with them. It ends with: “I would then try to find the words for what I could not explain and had yet to understand. She’s really neurotic, I would say, committing an act of extreme disloyalty. No you don’t understand. She’s really, really neurotic.” Writing this memoir, did you finally feel like you had the words to explain? Was this book your way of doing that?
“Senseless laughter,” as it is described in medical literature, is a secondary or negative symptom of schizophrenia. I sort of despise the term; it seems so othering. Yet it still works to define what was happening in my household. As my mother worked as a lawyer to get immigrants amnesty, and commuted hours a day to criminal court on behalf of indigent clients, she would spend her off hours at home, under a very potent spell, laughing uncontrollably for hours at a time in her bedroom. There is something very powerful about owning a narrative for hours at a time like this. I give my mother credit for my ability as a writer to sequester myself for long bouts of time in a fictive world. This chronic laughter was as much a formative experience as it was a disturbing one.
Why wasn’t anyone getting this woman help? I had no idea what was happening at the time. Only that language was failing me and that I had to abide the strict rules of this adult who did not act like anyone else that I knew. Woody Allen movies approximated “neurosis.” I wasn’t exposed to other narratives of mental health disorders. Someone like my mother was not portrayed in an anti-authoritarian film like One Flew Over the Cuckoo’s Nest. She was a high performing lawyer in two major states, who passed the Bar whenever she sat down to take it. She routinely met with judges and district attorneys in the courts of Brooklyn and Manhattan: wore expensive suits, shopped at Saks Fifth Avenue, and had her hair done weekly.
Your mother had to face a lot of injustice due to her sex in her professional attempts to gain a permanent position as an attorney. Do you think her psychosis would have been less extreme if she’d been accepted in her chosen field?
This is a great question. I firmly believe my mother’s illness would have been triggered by a number of stressors, including those that accompany a successful professional life. However, she might have endured less personal pain. My mother’s quality of life would without question have been improved if there were no stigma around mental health disorders and if women had parity in the legal field. She might have had fewer stressors, but they would have still been there. She would have still heard voices. Accused me of selling her secrets to her competitors. She would have still required medication. Reading Evelyn Saks’s biography made this abundantly clear. Whenever Saks encountered stress in her chosen field of law, she would inevitably descend into psychosis, despite her eventual success. Not until she finally relented and chose to obtain pharmaceutical treatment did this change.
Can you speak to some of the things you learned while researching that surprised you? I, for one, was surprised to hear that schizophrenic delusions produce pain. Was there anything that really stood out for you?
What surprised me was just how brutal the cures were before antipsychotic medication became available. I derived much compassion for my mother, and weathered a heady dose of shame, not having understood better why she might have refused getting help earlier on. Prior to the advent of neuroleptics in the 1950s, one can point to the life-robbing lobotomies, the strange and dangerous insulin cure where people were purposely put into comas, the horrendous side effects of electro shock (ECT) that often included broken bones … She had, in fact, weathered a round of ECT at university, and as it is rumored in the family — thank you, Great Aunt Freda — it did not go well. Her father, a world-class doctor of subtropical diseases, could have helped her reason through potential treatments, but that did not happen as far as I know.
In the book, you mention the portrayal of a character with bipolar disorder on the television show Homeland — how important do you think the media’s portrayal of mental illnesses is for greater awareness or understanding in our society?
The portrayal of mental illness at present is truly remarkable. A serial TV show as accessible as Shameless portrays a wide spectrum of bipolar disease, from a grifting, albeit warm, drug-taking mom, who can’t stay on her meds to her charming gay son, who works as an EMT and battles like most people when first diagnosed with staying on his medication, enduring horrifying relapses, and triumphing to become stabilized again. The message seems to be that strong community is key to surviving mental health disorders.
A personal favorite is the schizophrenic doctor in the science fiction TV show Fringe (2008–’13), who is rescued from a psychiatric hospital to help the FBI solve paranormal crimes by his FBI detective son. Not only is it a brilliant reworking of the “mad doctor” trope but also it truthfully depicts the strong bonds often required of family members when tackling the challenges of mental health care. A son becomes an unwilling guardian. This is how it goes.
There are also countless examples in contemporary YA fiction: Made You Up by Francesca Zappia, Challenger Deep by Neal Shusterman, among others.
Mental health disorders disrupt the capitalist narrative of the rugged individual. In my family with its elite ambitions (my father working around the clock as an astrophysicist and my maternal grandfather working into the wee hours of the night on various medical projects), my mother’s illness was like a ticking time bomb. How do you take on the care of chronically ill family members when it takes immense concentration for you to succeed at your profession? Who is willing to put work aside to do that? Typically women perform this duty, or so we have been told. But this is not always the case, especially if it is the woman who is ill.
I’d like you speak to two issues about your mother’s condition and insurance coverage that resonate strongly today: preexisting conditions and the lifetime limit on Medicare coverage for in-hospital psychiatric care.
My mother could not live in the same state with her grown children because insurance in California was too expensive before the ACA was passed because of preexisting conditions. That had a marked impact on our family’s quality of life. It was a deeply despairing situation, one that shadowed most of my adult life.
Today the 2008 Mental Health Parity and Addiction Equity Act is supposed to make obtaining mental health care equal to obtaining physical health care. Enforcement has been frighteningly weak, as you probably know having cared for your mother and grandmother diagnosed with bipolar disorder. I will never forget trying to get our mother treatment at the Resnick Neuropsychiatric Hospital at UCLA after she had stopped taking her pills and was no longer eating, and learning how few beds they had and how common it was to be turned away. We were lucky during the three-day wait before a bed was made available that my mother was not in danger of committing suicide, because she might have easily done so.
Toward the end of her life without having had money for health aides, things would have devolved faster. My brother routinely warned me that the last thing he wanted to do was spend her savings on private care and have her finally recover only to be bankrupted. Long-term psychiatric care was $9,000 a month. We could never have afforded it. I was constantly stressed. I imagine tens of thousands of people in the United States may be feeling similarly as I type this. This has to change. In the next four years we must demand enforcement from the HHS of the 2008 law.
It feels like every step on the path to getting your mother care had some frustration, from convincing doctors that she needed to be admitted to doctors and pharmacists changing or messing up her medication dosage and causing a relapse. What frustrated you the most?
My mother received a diagnosis of schizophrenia too late, after several years of a pronounced psychosis. Most people who go through a difficult-to-treat psychosis describe this experience in months, not years. The length of her illness set the stage for all kinds of disappointments. Because Haldol, known for its unpleasant extrapyramidal side effects — visible tremors and tics for example — was not a great antipsychotic but virtually the best treatment available in the early ’80s, doctors were always eager to reduce the dosage of this drug. However, this was always a terrible mistake. A slight reduction would lead to a long relapse of often six to nine months, during which she would cycle in and out of psychiatric wards.
Had my mother not received alimony from my father, a modest amount that allowed her to live in low-income housing and purchase health insurance, she would have become chronically unhoused, adding to the 20.1 percent of those who are homeless and struggle with a major health disorder, according to statistics from the National Alliance on Mental Illness (NAMI) and US Department of Housing and Urban Development (HUD). By the end of her life, I felt most frustrated by a system that allowed her only two-week hospitalizations, when two weeks of care was grossly inadequate. I also felt frustrated that I had not taken greater part in her health care. I should have never allowed her psychiatrists to make changes in her medication without my knowledge.
I feel like a lot of people don’t realize how difficult it is to care for a family member in the throes of mental illnesses like schizophrenia, and it’s incredibly relatable when you recount moments of just wanting to give up or being so fed up that you screamed, “Fuck you,” in the Beverly Center. Then, in one of the “Medicare days” vignettes, when your mother is back in a psychiatric hospital, you write:
I grew terribly impatient with [my mother]. No one on staff, however, appeared the least bit disturbed by her behavior. This was a gift I could not offer my mother. Whether we had Medicare days left or not, observing the courteous and efficient behavior of the psychiatric staff, I vowed never to forgo proper medical care for my mother again.
What do you want people on the outside of all of this to understand about the toll of caregiving?
To be perfectly blunt, I rarely cared for my mother until I was older and more established in my teaching career. I had plenty of my own challenges to contend with. My brother was the natural caregiver in our family. He shouldered the brunt of these responsibilities from as early as 11 years old. I was pretty aghast to discover my brother had spent so many months of his life caring for my mother, fighting with insurance companies, hospital administrators, researching the latest treatments when everything else had failed. I don’t think my brother received the credit he deserved. He was a tremendously dedicated son.
I was pretty ill equipped to cope with the very long time it can take to recover from a relapse. The unrelenting delusions that made life so brutally difficult for my mother when her medication didn’t work caused me deep anguish. I couldn’t bear that my mother had to put up with these negative thoughts all day and night without any relief. I also found her medical care to be confusing: Why did hospitals seem hell-bent on discharging my mother when she still had so many delusions? Why was there little to no follow-up care? Why didn’t she receive more outpatient talk therapy?
Contrary to some popular narratives, these are not made-up illnesses or the consequence of poor choices or weak defenses. The countless people, disproportionately of color, reduced to living on the street in urban neighborhoods, are someone’s brother, uncle, or mother. Someone somewhere is grieving every day for that loved one who disappeared or is being denied essential care. Consensual reality is something we take for granted. But its loss is truly devastating. Delusions stop us from thriving, both collectively and as individuals. Almost always my mother’s delusions were based on fairly personal matters. Her teeth were melting. Someone was trying to poison her food. I was selling her secrets to the district attorney. She was not, however, confused about social and political realities. She was too smart for that. I missed celebrating Biden and Harris’s win with her this election cycle. She would have been glued to the extensive election coverage and been ecstatic to learn of their victory.
Having recently cared for a pair of feral kittens, I was struck by the story you included of your long-time, semi-feral cat, Quimby. At first glance, it may not seem related to what’s happening in the narrative, but there’s a weird sort of similarity to the fluctuations of your mother’s behavior between medicated and unmedicated states, and how a semi-feral cat can happily let you pet them one moment and take a swipe at you with extended claws the next. Was that something you thought about and do you see any other similarities?
Haha! You aren’t wrong there. Semi-feral behaviors are definitely a familial trait, if a bit understated in this book. Check out Jeanette Winterson’s stunning memoir, Why Be Happy When You Can Be Normal? for another look at the intergenerational trauma specific to a mother-daughter relationship. You will not be disappointed. Like Winterson, I did not want to paint a simplistic view of familial violence and its imprint. But it’s there. You just have to know where to look.
Finally, what was your relationship to memoir prior to writing your own? Do you feel the act of writing and releasing A Room with a Darker View into the world has changed that relationship?
I probably come from that generation of would-be writers who did not aspire to write a memoir until having lived a long, celebrated life. In my 20s and early 30s, I read celebrity memoir, usually by artists, like dancers Martha Graham or Isadora Duncan, in which I gleaned bohemian feminist principles, like “do it for yourself,” and steer clear of the trappings of money (a privilege to even contemplate, I know). I was lucky that I found a spot teaching creative writing at CalArts, where I worked in close proximity to experimental writers whose narrative practices were similar to my own. Steve Erickson’s American Nomad is one of the best political memoirs I’ve read. Before Maggie Nelson was a household name, I was teaching and reading her works at arts institutions in Southern California: Jane: A Murder, Bluets, The Red Parts. Matias Viegener’s 2,500 Random Things About Me, Too was also instructive with its daring and crystalline wisdom. Valeria Luiselli, Michelle Tea, Samuel R. Delany … there are too many authors to list here, but this zeitgeist of memoir writing opened my eyes to the endless possibilities. The Red Parts was super-instructive. If Nelson could write about the legal aftermath of her aunt’s unsolved murder without descending into dubious pop psychology, then I could find a way into a family haunting too.