The Edge of Every Day

by Marin Sardy

  To this day, my mother has never accepted the idea that she has a mental illness, and as far as I know she has never willingly taken medication for it. She has never been officially diagnosed with schizophrenia either, but she knows this is what people say about her. At least two doctors have said they believe she has some form of it. “Schizophrenic tendencies,” one suggested. “Schizoaffective disorder,” suspected another, naming the illness that includes symptoms of both schizophrenia and bipolar disorder. And it runs in our family—my brother began to show similar symptoms in his twenties and eventually received a schizophrenia diagnosis. (He, too, resisted the idea that he had an illness and refused treatment for years.) But official diagnosis for my mother would require a doctor’s confirmation that her symptoms have lasted longer than one month, and none have connected with her meaningfully enough to make such an assessment. For nearly a quarter century, she wouldn’t allow any doctor to examine her at all. My sisters and I, on the other hand, have observed that her symptoms have lasted for more than thirty years.

  Even when I was a child, the word schizophrenia struck me with its frightening poetry. Its exotic and convoluted array of letters captured the sense I had of the illness—confusing and bizarre, mysterious, infamously inscrutable. During the first few years of my mother’s illness, I witnessed what I can only describe as a disintegration. Once a beautiful woman leading a healthy, engaged life, she transformed into a mistrustful recluse who subsisted on cigarettes and screwdrivers while her teeth rotted away. For a while she nearly imprisoned us in our own house, barring the door with heavy pieces of furniture and having lengths of wood fit to the windows so they could not be slid open. She was so afraid of assassins that her fear seeped into me too. I did as she asked for a long time. After a while, though, I rebelled, and eventually I just gave up, choosing instead to detach myself by playing video games all afternoon while she snacked on bowls of cake batter or simply sat very still for hours on end.

  I rarely found words for what I saw my mother do, what I heard her say, so her illness seemed to always live in the shadows. In the closet, under the bed. As a child I felt schizophrenia to be a dark, shapeless thief. What other image fit what I had seen? How does a child articulate the absence of what is necessary? The absence of sanity. The absence of the mother I had known. To my eye it appeared, more than anything, that she had been stolen.

  Now, grown and far more educated, I often feel nearly the same. Schizophrenia still defies the most fundamental question about it: What is it? I can tell you it is a brain disorder that causes distortions in perception, thought, and emotion. I can explain that it arises by way of chemical and physical processes inside the brain. But if I reach much further, I soon arrive at the edge of human knowledge. We have not yet fully grasped how the brain creates perception, thought, and emotion to begin with, let alone such spectacular distortions. One important review compared contemporary researchers’ various hypotheses to the parable of the blind men and the elephant: Each, when asked what an elephant looked like, felt a different part of the beast and described it. One, feeling its trunk, said it was shaped like a snake. Another, feeling a leg, proclaimed that it was shaped like a tree…

  * * *

  —

  Schizophrenia is not a disease as the term is generally understood, but rather a syndrome—a constellation of symptoms that tend to occur together and tend to be causally linked. Psychiatrists still debate, in fact, whether schizophrenia is a single disorder or a conglomeration of separate disorders arising from disparate causes. Sometimes referred to as the “schizophrenia spectrum,” the condition as envisioned by the latest diagnostic guidelines is more like a matrix of symptoms that gradually fade into normalcy. This is why the presence of “significant social and occupational dysfunction” is crucial for doctors to consider—though that, too, occurs on a spectrum. The line between mental health and mental illness, though sometimes a practical necessity, isn’t really a line so much as an open plain.

  Officially, schizophrenia is categorized as a “psychotic disorder,” and of all its symptoms, the most famous are features of psychosis, the state in which a person’s thoughts and perceptions are so distorted that she effectively inhabits a separate reality. Psychosis includes hallucinations, delusions, and profound mental disorganization, as well as a more fundamental shift in the way the world seems and feels—and all of this interacts with personality and memory. My mother’s most visible sign of illness, her delusional thinking, is at this point so deeply intertwined with her emotional life that it is often hard for me to know which of her actions stem from delusions and which do not.

  The inherited wealth that paid for my mother’s globe-trotting is now long gone. A dozen years ago or so, needing an allowance from my grandmother, she returned to the epicenter of her family—New Mexico—and stayed nearby for several years, hopping regularly between Roswell, Santa Fe, Denver, and Tucson, places where most of her six brothers and sisters and various other relatives lived. This was for her a fairly circumscribed and blessedly consistent movement pattern, although she still ranged farther from time to time.

  In my early thirties, I lived in Santa Fe for several years while she was also in the state, so during that time I could see her regularly. She also called often, which was important to me, since she had no telephone for most of that time and I couldn’t call her. She was too paranoid to keep a phone of her own, but would use pay phones and relatives’ phones. She just wouldn’t leave a message, ever, and while on the phone she wouldn’t refer to people she knew by name, and if you lingered without speaking for more than a couple of beats, she’d hang up on you. If behind this paranoia there was a delusion, however—some false, unshakable belief that would make sense of it—she never explained it to me.

  A new pattern emerged when I moved to New York and she stopped calling me. Before moving, I reiterated several times that I wanted her to call me regularly, but she skirted the issue, and it was only after I left that I realized there was something in her mind getting in the way.

  When I visited Santa Fe a few months later, I tried again, although I didn’t think it would make a difference. “Mom,” I said, “call me.”

  “Oh, well, you’re over there now,” she said. “So far away! I think it’s better to—to stay close.”

  “Yeah, but, why does that matter? It’s a phone.”

  “Hmmm. I try to call Sadie,” she said, referring to my younger sister, who lived in Santa Fe too. “I’ve been trying to call Sadie! She never answers.”

  “Sadie has to turn her phone off when she’s at work. So call me.”

  “Well. I think I’m just going to stay focused on what’s nearby. I just think that’s a good idea right now.”

  Our conversations are riddled with these inexplicable refusals—inflexible positions she won’t relinquish and won’t, or can’t, explain. They emerge from nowhere and stick like cement. A decade before, when I was in graduate school in New Hampshire, she called me often. But in New York it was as if I had fallen off the edge of the world. Eventually she moved back to Alaska and got a phone again. Now I can call her, and she’s delighted when I do, but she still won’t call me herself.

  Certain places, it seems, must be avoided. When Alicia got married in Bozeman, Montana, our mother missed the wedding. I cajoled and then harassed her about it as the date approached, but she was evasive. Every time I brought it up, she shifted the focus to the lovely wedding gift she had bought.

  At first I thought she didn’t like the idea of attending a crowded event, so I tried bargaining. “You don’t have to go to the reception,” I told her. “You can just go to the ceremony.” When that failed, I went all the way. “You don’t even have to go to the ceremony,” I said. “You can just see Alicia beforehand, on that day. Or the day before.”

  I got nowhere. She wouldn’t relent and wouldn’t say why. I have since racked my brain trying to und
erstand what it is about Bozeman. If it is Bozeman at all. But her whole world is a cipher, and in it there are codes I can’t break.

  * * *

  —

  In her youth my mother was one of those people who seemed to catch everyone’s eye. “Like a sprite,” my aunts say. “Like an elf.” Petite and pale, with a heart-shaped face and a delicate smile, she was beautiful and alluring and had a distinctive, distant charm. Now in her seventies, thick around the middle with her once dark hair a peppery gray, she still seems somehow like a pixie. Her eyes dart about and her hands flit with precision as she speaks. When quiet, she turns inward, and it is almost as if I am watching her curl her head under a wing. She isn’t beautiful anymore. Jowls hang low on her face, and when she smiles she reveals teeth weathered and crooked from malnutrition and neglect. But her blue eyes seem to have intensified in color, and her bony fingers are as articulate as ever.

  These days, my mother has a very clear sense of what kind of information upsets others—things “people don’t like to hear about.” So she has been in the habit, for decades, of reserving the discussion of such topics for my sisters and me.

  “Marin, I’m glad you’re here, because there are some important things I need to tell you about,” she said once, peering at me with wide eyes and her hands clasped politely in her lap. “I’ve learned about a few things that I think you might want to do. I have found out—I’ve found out that now is a good time to move to Pluto.”

  Despite her refusal to accept her illness, she knows that the world reaches her in a different form than it reaches others, and I am almost certain she knows that something about this cripples her. But she still fights for the validity of her thoughts, as anyone else would.

  “Pluto?” I asked. “Like, the planet?”

  “There are some exciting developments happening there right now, and you can buy a home at a good price. Right now, before it really catches on. They’re setting up a colony there. Homes for young people, and you’re at the age that you could go there and really get started on your life.”

  “Mom,” I said, “I have a life.”

  “Oh, but this is such a great opportunity! It’s so affordable! You could really find a nice house there and have a nice place to live.”

  There is no point in arguing with delusions, but I also hate to play along with them. Usually I engage just a little, to show I care. This time I offered something like “So, how do you know they’re colonizing Pluto?” But I’m not very good at hiding my impatience.

  “I’ve seen it! I’ve seen—I know this, Marin. I’ve—I understand this.” She paused, her eyes searching. I could practically see the wheels turning as she sorted through her mind looking for a response solid enough that I wouldn’t silently reject it. As much as she’s shared the material of her delusions with me, she almost never lets slip anything about where they come from or how they’re formed. And she knows I’m a skeptical listener.

  “Such a beautiful place! Do you know the oceans there have waves that are capped with fire? Can you imagine? Fire-capped waves?”

  “That’s a beautiful image,” I said, genuinely, picturing it. “It kind of takes your breath away.”

  “Yes, it does, doesn’t it? And there are all these condos for sale there now! You might want to do that!”

  “Mom,” I said gently, “I just really want to be here right now, okay?”

  “Well, think about it and see if you don’t change your mind. Also, there’s something else I want to explain to you too. Your uncle Robert has been staying in the condo in Santa Fe, and I want you to know that the condo belongs to me. It’s mine, and he—somebody—took it away from me. Now, while I don’t have any home at all, he goes and stays in that place and acts like it belongs to him.”

  I was annoyed now, inevitably, though I felt for her, that she no longer owned a place of her own. I rubbed my forehead and said something like “As far as I know, the condo has always been Robert’s.” I said it wearily, not to convince her, but just because it was a reasonable response that was neither condescending nor untrue. The condo did belong to Robert, but I qualified the statement to acknowledge that I had never actually seen the deed.

  “Well, it wasn’t always his,” she countered. “He went and got the papers from where they were filed, and the people at City Hall didn’t notice, and now he’s told everyone it’s his, and there are no papers, so everybody thinks it is his. But maybe one of these days, Marin—this is why I’m telling you this—those papers might turn up. So if you see, at some point, some papers that look like they have to do with a house, if you find them lying around somewhere, I want you to take them and keep them someplace safe. Because then I might be able to get my house back.”

  “I don’t think they would leave those kinds of papers just lying around,” I said.

  “Well, you never know. You never know!”

  Sometimes I just stare at her and remind myself that she’s on her own trip and it’s not my job to fix the unfixable. But she tends to persist, and did, until I said something like “If I happen to come across some papers that look like the deed to Robert’s condo, I’ll do that.”

  “Good,” she said. “Now, what are you up to today?”

  Other times, though, her voice might turn sad. As in dreams, much of the symbolism in her delusions hints at her own feelings about her life as she struggles to understand it. But this is a dream she can’t wake up from.

  “All these homes I’ve had, that people have taken away from me!” she once said plaintively. She lifted her chin and gazed into the distance with innocent eyes. “It’s almost too much for a person.”

  And that was too much for me. Although I know that nobody has ever taken a home from her or even claimed any property that was rightly hers, I wanted to tell her I wouldn’t let anything bad happen to her. But I could never say that, really. I’ve never been able to protect her from anything.

  * * *

  —

  For nearly two decades, since my mother sold the two-bedroom house in Santa Fe that she had bought when I was in college, she has been wondering how she lost her home. She keeps searching for a place where she can live and be safe for the rest of her life. But she’s too erratic and irrational. She has spent all the money that bought her former houses—a trust fund from my once wealthy grandfather, a divorce settlement, her own sporadic earnings from jobs as a gift store cashier or a cafeteria server. Since then, living on Social Security and an allowance from the family, she has gone through a string of small apartments, one after another, rarely committing to a lease longer than six months.

  To explain this, I have only a theory, based on things she has described over the years: Each time she arrives at a place, it is new, unsignified, a clean slate. Then her visions and voices, loaded with emotional import, begin interacting with that physical environment, and slowly, over the course of months, meanings accrue. All the powers of the universe work their way into the smallest details. Here is where a bright light visited me one night. I stayed quiet for it and watched. Around the time her psychosis set in, she became devoutly Christian, more so than anyone else in her Lutheran-Episcopalian family, and she now often interprets errant perceptions as miracles. But other times, the details of her encounters turn ominous or antagonistic. Someone has been burying horses in the backyard. I’ve seen the teeth coming up out of the ground! Eventually, every detail of the place seethes and echoes so resoundingly with the influence of powers only she can see—everything pointing back to her, for her, about her—that the only way to keep it under control is to flee.

  This is, I think, why she couldn’t remain at her mother’s house in Roswell, her hometown, despite being welcome to live there for free. The dozens of paintings on my grandmother’s walls made her uncomfortable. She started moving things around, hiding things. It baffled my aunts and uncles and frustrated my grandmother. I could only
glean what my mother wouldn’t say outright: The paintings were looking at her, talking to her, and when they upset or frightened her too much, she had to escape them. She put them away in corners to sap them of their power, and when my aunts and uncles tried to convince or force her to stop doing this, she moved out. Then she started renting apartments for a few months or a year, bought a white comforter, and kept nothing on the walls but a small cross and an image of whatever saint had recently caught her attention.

  I think if she had a house of her own, she might still leave it periodically for months at a time. But she wants that house, her house. She wants to see the return of at least one of the many homes she has lost in her lifetime, which she believes were stolen. And the weird truth is that, in a way, they were stolen. Schizophrenia stole them, by taking away her capacity for long-term planning and remembering. The ability to keep track of time is a prerequisite for virtually everything a person can have or do in life. In the timeline of the universe, my mother lives in a bubble that disintegrates into chaos two weeks in either direction. That’s about the extent to which she can pin reality down well enough to at least manage her life within it. Beyond that it becomes too warped to be of use.

  She can manage a weekly budget but not a yearly budget. She can sublet a room but gets paranoid about the paperwork required to qualify for low-income housing. She can do fairly complex tasks like shopping, cooking, or balancing a checkbook, but has always had trouble maintaining the relationships required to keep a job. Momentary concerns overwhelm the bigger picture, which dissipates into mist.

  Trying to help my mother is a frustrating and usually futile effort. She won’t often accept help, preferring, she says, to take care of things herself. The harder we push, the more she resists. I try to be as cooperative as possible, hoping she’ll go along with my plans if I act optimistic. But mostly, my hands are tied. Over the years, we in her family have sometimes tried to maneuver around her to get her finances under control, but we couldn’t do much without her permission. No one could have forcefully intervened. She functions far too well to be declared incompetent. This is how it happened that she squandered all she had, spending more to live than she could earn, buying and selling a long series of houses, condos, apartments, and cars, each time losing money on the deal until she had nothing left.