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Upon Visiting My Mother’s Group Home

My experience as a daughter of a mother struggling with schizophrenia.

11 min read

When I arrive, the first part of the journey is to walk past the avid chain smoking of the other residents. Each person dealing with their own thing, each person somebody’s someone. My someone lives on the second floor.

The first resident I see and always see is Mike. He likes to talk about The Kardashians and American Idol. He announces my presence, by saying my name: Tatiana, as if he is a showman in the 1920’s. He sits with a few other men, most of their faces are familiar, yet I don’t know their names.

Mike leads me through the door, to the cool basement where the residents sit on weathered yellow leather couches and listen to the radio. My mother isn’t in the basement, so like on most visits, I wander the group home looking for her. I climb the wooden narrow stairway up to the first floor.

A caseworker greets me. I can tell he’s new by the way he stares at me with confusion. I tell him who I’m here for and he looks surprised. “I didn’t know she had a daughter,” he chuckles. He mentions that she must be in her room. He tells me how nice she is; this is something I’ve heard from each caseworker at one point or another. It reminds me of the ways other people can see someone from perspectives that are often different from yours.

I make my way up the stairs, again, to the second floor. I knock.

My someone never answers the door on the first knock so I have to knock for at least five minutes. She is wary of visitors, which, out of my three siblings, just happens to only be me.

When my mother opens the door her grin is wide and she hugs me. On a good day, this is how she greets me. Her hair unkempt, her jeans sagging below her shrinking waist, the space beneath her eyes dark, as always. When I see my mother, I think of the caseworker and the word nice; how when he said it, the word floated right past me and made no lasting impression. How being nice is relative. How the act of being nice, doesn’t assume depth, how it can be a descriptor of not knowing someone fully; my mother is beyond that word.

When I sit down in her room, I’m met with copious plastic bags filled with an assortment of things; nail polish, children’s toys, papers and trinkets. The sheets have been stripped off her bed. She believes she has bugs, which is plausible but unlikely. There have been so many times where my mother has thought something was happening and it wasn’t. I choose to believe her this time, for the sake of disappointment that she may not be telling me the truth. I try to remind myself that she only knows the truth she knows; the one inside her.

Then my mother mentions, almost casually, that her brother is a dangerous murderer and that we should stay away from him. I take a deep breath. Her statement is disturbing, but just like other moments where she has said something like this, I ask the question: “Who told you this?” Her answer is always a variation of the same thing. A “they” wanted her to know but “she can’t tell me who they are.”

It’s the “they” that makes my stomach sink, more than her statement about my uncle. It’s the sadness of knowing there’s someone speaking to her that only she can hear. It’s the pain of knowing that this they keeps her worlds away from me.

My mother continues to tell me about how if they knew she was talking to me, they’d kill her. Her left eye twitches like a pulse. Her speech gets faster and the fear she has begins to become my fear. After it all, she says: “I need to tell you this because I love you and I want you to be safe.”

She tells me she loves me, again and again. This is how schizophrenia shows up within my mother.

***

I imagine that there is no singular experience for people who’ve grown up with mothers who have schizophrenia, yet sometimes I wish there was a club.

I’d enter a random, nondescript building where a bunch of strangers sit in a circle, or an oval rather. Metal chairs moaning underneath each body. In this club sit a mass of humans hoping to reconcile the difficulty of loving other humans. Each person tells their story about their loved one and how they struggled with loving someone who struggles with addiction, mental illness and so much more. In this meeting, I’d hear about how some people developed a need to continuously form relationships with people who need “fixing” because of their relationship to a loved one struggling with a mental health disorder. I’d look around and watch the faces, so unfamiliar, yet similar in their yearning for understanding. Somehow against the humming of a radiator and the varying voices, I’d feel something, something meant to ward my own solitude.

***

When I am sitting with my mother at her group home, there’s often a silence that falls upon us. I can never tell what she’s thinking in that silence, yet I watch her face contorting from smile, to left eye twitch, to impassively staring in front of her for at least five minutes; until she looks back at me and starts that cycle all over again. In this silence, I think of different things. Sometimes how much longer I can stay there without her seeing me cry (I avoid crying in front of others) or I think about how at one point I didn’t know about schizophrenia and just viewed my mother as someone dealing with something that I couldn’t control.

When I learned my mother’s diagnosis I waited some time before researching it. Soon I learned that schizophrenia affects about 1% of Americans and manifests differently in each person who struggles with the illness.[1] Some people with schizophrenia experience hallucinations, delusions and severe depression.

From a young age, I watched my mother work through severe bouts of sadness. I sat with my siblings in hospital waiting rooms while she went to see her psychiatrist. I watched her shuffle around the house in fear that someone was breaking into our home and stealing from us. I felt myself develop an immense sense of fear combined with love. I felt a love for her that only seemed to result in deep confusion for how to love her. Of course there was the hurt, that started from a young age and manifested in a deep longing to have a mother I could rely on.

I remember learning that in some cultures those who experience schizophrenia are often deemed as shamans or spiritual guides.[2] Their moods have an ability to see beyond what those without schizophrenia can see. They are admired with great praise while for the most part, in the United States, people with schizophrenia are feared, misunderstood and ostracized.

Sometimes I imagine my mother as a shaman. I try to envision my family and the world flocking to her instead of pretending she doesn’t exist. They’d want to live with her in her mind instead of away from it. They’d accept her; I’d accept her. Instead of the fear and pain I feel from trying to have any sort of relationship with my mother, perhaps there would be some sort of magic; some alchemy from the universe to explain all of this.

As a child, when I found myself in the flurry of my mother’s thoughts; I’d retreat. Sometimes I’d sit in a closet or hide under a blanket. I’d become acquainted with the dark nothingness in front of me. The presence of an all consuming quiet that was mine and only mine. In the darkness of being shut into something small, I’d feel refuge.

Perhaps it is the fifteen voicemails my mother has left or her incessant calling but I feel her pulling me to her. It’s a pulling that I don’t love, but it’s a pulling that holds me responsible. If I don’t go, who will. Maybe it’s guilt, maybe it’s my love for her, maybe it’s simply knowing that she needs it. Sometimes her need trumps my own and on these days I find myself sitting with her.

In these moments, I know that I cannot retreat. I absorb everything she knows to be true. The danger she feels welling up on the inside of her; becomes my worry. The confusion she feels of the world inside her, becomes a puzzle I begin to parse through. When I am with my mother, I cannot help but be enraptured by who she is and what she does to me. I cannot help but think of how I could never exist without her, meaning we are inextricably linked; yet living without her is often a source of relief.

Being with my mother reminds me that although our bodies and faces mirror each other, the splitting of my mother’s mind results in the dividing of us from each other and thus begins a splitting within myself. In each visit with my mother I see a different part of myself emerge.

There’s a version of me who becomes numb to even the most disturbing parts of my mother’s personality. This part watches my mother talk to herself or talk about the voices she hears while tuning every feeling out. It’s almost like an emotional epidural. I watch myself experience the most difficult parts of my mother, from her believing that I am bleeding when I am not, to her believing that there are people trying to destroy us. Perhaps my emotional dullness comes from learning over time that, no matter how much it hurts to see my mother like this, she is not available to heal this hurt. That to show it means I’ll be left vulnerable as I was when I was growing up. Perhaps this is how I learned to survive.

The other part of me, that emerges when I am visiting my mother, is the part that wishes to leave my body in the room and float outside of it. This version yearns to be free of the numbness, love, hurt and sadness. It longs to be untouched by the difficulty of this relationship. It longs for a clean slate. It longs for the time before I was conscious of the ways my mother’s schizophrenia has affected her and me, perhaps I begin to long for a time before I even existed.

Balance is rarely achieved between these warring parts of myself. Oftentimes I am feeling everything and absolutely nothing simultaneously. It feels like grief yet it isn’t grief. It’s a new feeling that I have not yet found the word for. It is a feeling that capsizes. It’s a feeling that is born after loss, yet a feeling that comes with living. It’s a feeling I know someone else must know all too well, yet, we just haven’t found each other yet.

In the meantime, I don’t think I’ve found a solution to how to sit with the amorphous, consuming sensation of loving amidst hurt and abandonment. I’ve learned to live with the unfortunate reality of this relationship, because all I can do is live, yet it remains a dull ache in the body. It never leaves and over time it has become a part of me.

When I am with my mother, I am with her and her schizophrenia; when I’m not, she sits with her mental health disorder alone. When we are away from each other, we sit with the remnants of the relationship. The guilt drives me to her, the sadness roots me to stay, the yearning for relief leads me back home, the distance fills between us.

I cannot deny the reprieve when the visit with my mother is over. At the end of our visit, I call a Lyft, and although she doesn’t understand the concept of ride sharing she waits with me. She kisses and hugs me as I go.

When I’m in the car, she waves from the outside. I wave and I breathe, for what feels like the first time. She smiles, as if there’s nothing wrong in the world. It feels like a true smile. It feels, if only for a moment, like hope.

 

[1] “Schizophrenia.” NAMI, 2019, www.nami.org/learn-more/mental-health-conditions/schizophrenia.“Schizophrenia.” NAMI, 2019, www.nami.org/learn-more/mental-health-conditions/schizophrenia.

[2] Russell, Dick. “How a West African Shaman Helped My Schizophrenic Son in a Way Western Medicine Couldn’t.” The Washington Post, WP Company, 24 Mar. 2015, www.washingtonpost.com/posteverything/wp/2015/03/24/how-a-west-african-shaman-helped-my-schizophrenic-son-in-a-way-western-medicine-couldnt/?noredirect=on&utm_term=.771ce5ac2121.

 

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Tatiana Johnson-Boria

Tatiana’s writing explores identity, trauma, especially inherited trauma, and what it means to heal. She completed her MFA in Creative Writing at Emerson College and is a 2021 Tin House Scholar. Find her work in or forthcoming at Ploughshares, New Delta Review, Foundry and others. Learn more about her work at www.tatianamrjohnson.com