🎧Your Family Needs You to Change| Chapter 14

Sarah Fay

Dec 01, 2023

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They say not to rely on one person for all your mental and emotional needs. I’m not sure who “they” are, but they’re probably right. It’s doubly true for people with mental illness—or at least it was for me.

My mother opens the front door to her apartment and steps back. We don’t hug—not out of anger. It’s as if we’re not sure how. I take off my coat and hang it in the closet.

Since I moved out of her apartment, where I lived for five years because I was unable to live on my own, sliding into and climbing out of psychiatric crises, she’s needed time to heal. I relied on her to be my caretaker, friend, mother, physician, therapist, and medication consultant. It was too much. My brokenness broke her—a bit.

My bag bumps against my hip as I follow her into the living room. She sits on the blue couch, where we sat so many times, her rubbing my back, trying to calm me. I put my bag on the floor and sit on the white, stiff-backed chair. She’s dressed in slacks and a blazer, her black curly hair set, but her eyes still have that fragile, grey look about them.

This visit is my idea. I suggested I come over and work at the dining room table for the afternoon. The room where I once slept is back to being my mother’s study, but it wouldn’t feel right to be in there again so soon.

She says something about her book club, but I have trouble paying attention. The pit in my stomach expands. I want her to be better. I want everything to hurry up and be okay—me, her, all of this.

I pull my laptop out of my bag. “This is great—working here. Thank you.”

She stands. “I’ll leave you to it.”

I think about revealing to her that I’m recovering from mental illness (bipolar disorder, technically, but I’ve had so many diagnoses, who knows which was the right label to put on my mental and emotional dysfunction) and she doesn’t have to worry anymore. But I don’t know how to explain this or prove it. During the twenty-five years I was in the mental health system yet relying on her for support, no one presented recovery to us as an option. I had this diagnosis or that one and always would and that was that.

After fifteen minutes at the dining room table, trying to grade my students’ midterm essays, my mother walks to the closet and opens the door.

“Are you leaving?” I ask.

“Book club.”

Right. She must have thought I wanted to work here in the apartment, not here with her. I get up and go to the door.

She smiles weakly, shouldering her coat.

I’m heavy with guilt for the stress I caused her. She spent countless nights on suicide watch, which is too much to ask of anyone, countless hours in the emergency room, countless hours trying to help me through psychiatric crises.

When she’s gone, a crushing loneliness weighs on my chest. I think it’s loneliness. Or maybe grief. Or sadness.

Hurriedly, I pack my things, get my coat, count to two hundred to be sure she won’t see me, and lock the door behind me. My thoughts race: I’m alone, we’ll never be the same.

At home in my apartment, I fill my espresso maker and light the stove. A pessimist might say the visit was a disaster, confirmation that we’ll never be as close as we once were. An optimist would say it was a step in the right direction.

Improving how and where people in psychiatric crises receive care and supporting families and caregivers is one of the tenets of the contemporary Recovery Movement. It’s due in part to what some consider the worst policy change in the history of mental health care in the United States: deinstitutionalization.

By the 1960s, the U.S. government had finally admitted that most psychiatric institutions offered inhumane treatment. The buildings, many a century old, were dilapidated and falling apart. Patients were abused and neglected, left sitting in feces, subjected to ice baths, given lobotomies, forcibly sterilized, put in straitjackets, and overmedicated. Patients had been hospitalized either voluntarily, which meant a total loss of individual rights, or involuntarily, which meant a total loss of individual rights. Some patients went to what they thought were hospitals in the help-you-recover sense of the word and instead of getting help, found themselves in locked wards; put in isolation, sometimes for years; and without any rights or recourse for release.

President John F. Kennedy and others theorized that the way to fix our dismal mental health care system was to close the institutions and establish community centers where people could receive care. Deinstitutionalization would “free” patients. Community centers and new psychotropic medications would fill the role institutions were supposed to have played. Psychiatric facilities were closed; the number of Americans receiving treatment in mental hospitals dropped by 70 percent.

But the promised community mental health centers were never built. Psychotropic drugs couldn’t be the sole source of treatment for any patient. Patients were sent “home” though few had one. In the decades that followed, mental health funding was slashed.

Today, many people with serious mental illness don’t receive any care. They’re forced to live on the streets or in jails. Cook County Jail is one of the three largest mental health facilities in the country, along with the Los Angeles County Jail and Riker’s Island.

Of those with serious mental illness, the fortunate ones—like me—are expected to recover alone or at home, often with the support of family members who have no support themselves.

My mother and I start talking on the phone every morning at 9 am. Our connection is tightening—not back to where it was, but we’re getting there. We keep it light and talk about current events, which means right before the call, I read the headlines of the Washington Post on my phone to stay up to date.

I love getting to hear her voice. Every day, she seems better—a bit—and I’m grateful for that.

Our calls are positivity boot camp. She’s asked me not to be so negative, and I’ve been practicing. Not complaining or mindlessly ruminating on what’s wrong is a herculean effort. It’s absurdly difficult, and I’m not even in the throes of a psychiatric crisis.

It’s not like I’m “well.” Anxiety still thrums through my chest and seems to take me over. And there are still times I can’t eat because the pit in my stomach is so sodden and heavy.

But there are signs of healing. My thoughts don’t race anymore. Panic attacks come. Waves of black depression arrive, but they aren’t quite as terrifying.

We visit the Art Institute—one of my mother’s favorite places. Other visitors mull around. Aside from the murmuring voices and scuffling shoes, the marble hall is relatively quiet. A bored security guard stands against the wall, ensuring no one gets too close to the art.

The people around us seem the picture of effortlessness: an older man with someone who might be his son, a young couple arm and arm. They’re fine here—not anxious or upset—in this marble room amidst other humans looking at shapes and colors. I want that. I want that for my mother and me.

We ask so much of our caregivers and forget that when we’re not in crisis, they need time to heal, too.

*Paris Street; Rainy Day*, Gustave Caillebotte 1877

She and I stand in front of the famous rainy-day pointillism painting I can never remember the name of. It captures a Paris street scene in the nineteenth century. People walk under black umbrellas. The road is cobblestone. In the background are a horse and buggy.

She stares at it appreciatively. I try to see what she must be seeing: the pedestrians, the black umbrellas—people going about their days, protected from the rain.