Reading My Little Sister’s Book About Her Life With Schizophrenia

"Monsters: sharing Stories" by Jaime Lang

Yesterday, I posted a review of The In-Between, a memoir about Aramyst, a gay woman with schizophrenia. (You can buy the book here.) Aramyst is a pseudonym for Jaime Lang, my little sister. What she writes about from the inside, I’ve seen—at least in parts—from the outside. What I’d like to do now is talk about my own experience dealing with my sister’s mental illness, as well as what it’s like to sit down and read her book.

What I Saw

My sister was always shy and a little sad. In her kindergarten portrait, the one hung on the wall of my parent’s house, she is not smiling and her eyes look like they’re on the verge of welling up with tears. Nonetheless, I had no idea that anything was wrong until my senior year of high school—around late 2002, 2003—when Jaime faced suspension for threatening a girl with a knife. This allegation ran so counter to the sweet 14-year-old girl I knew who couldn’t hurt anyone, who was a vegetarian, that it sent alarm bells ringing throughout our family. Soon, Jaime was diagnosed with depression, social anxiety, and schizo-affective disorder, which would later become schizophrenia.

This moment shattered my innocence. For the first time, something dark had entered into my life. I remember crying, breaking down, and all but begging to understand what was going on in my sister’s head, only to be met with a blank stare and a quiet look of despair. I had been close to my sister growing up, but now she was in a different world, one I couldn’t reach.

As I left home and entered college, Jaime became more and more unpredictable. One day, she’d be playing soccer, getting good grades, and making friends. Everything seemed fine. And then—wham!—a sudden, horrible revelation. She was hurting herself. She was hospitalized. She was on academic probation. She tried to commit suicide—twice. I felt anxious and helpless, aware that in a moment, everything could turn upside down.

At the same time, her personality seemed to go through sudden shifts. She would declare herself to believe one thing, follow it to the extreme, and then drop it entirely, saying it was never really her. After going to a Christian college and regularly attending church, she dropped religion overnight. I’d seen her write in high school quite beautifully, only for her to stop. She told me she never liked writing, that it was my thing, not hers. Then she got a Masters in creative writing. She married her boyfriend and a year later told us she was gay.

This last revelation came while I was going through my own life transition. I was moving to Brea to live with my aunt and uncle. I was stressed about the move, stressed about finding a job, stressed about the fact that my life was not fitting with the idealized notion I had of being a writer. I wanted support. Instead, I found my parents fuming and crying. I listened to them rant in private, but when I tried to express my own feelings, I was told to not hurt Jaime’s feelings.

A wall went up. My heart started to close off.

"A World Beyond" by Jaime Lang

At the time, I was ashamed that she was gay and I was afraid of having to tell other people. Even if I never said it, I’m sure she knew. This held me back from thinking of how it must feel for her and fully supporting her. But that wasn’t really why I was angry. It was not because she was gay, but because she didn’t tell me. I was tired of trying to guess who she was. I felt she’d deceived me so many times, I could no longer trust her.

We drifted apart. We were never completely out of each other’s lives—I photographed her second wedding to her wife—but we’d lost that connection we’d once had. It hurt my mom, who wanted a close family, but I knew my pain was still there and pretending it wasn’t would only make me more resentful. I needed distance, and so did she.

I did make one concession. I joined my parents for a NAMI (National Alliance of Mental Illness) class on schizophrenia. Despite my sister suffering with the illness for almost 15 years, this was the first time I really sat down to learn about it and hear from other families. It opened my eyes to how ignorant I was. I wondered why it had taken me so long to do this simple (but incredibly difficult) thing.

The classes came and went. We made small talk. Nothing really changed.

Then, last year, both me and my sister’s lives suddenly and abruptly fell apart. She got a divorce; my plans to become a teacher fell through. These disasters brought us together again.

By that time, I’d let go of some of my own self-absorbtion and become a better listener. My sister had started to figure out who she was and how to communicate it. We’d reached an understanding. Interestingly enough, we both published books at this time. Mine was a children’s fantasy book that had to do with estranged sisters. Hers was an autobiography book told, at least initially, in a fairy tale sort of way.

What I Read

Of all the things to cause me pain, you wouldn’t think that grammar and misspellings would be high on the list. And yet this was the very first thing that caused me to gnash my teeth in irritation.

I am a writer. I can edit. I volunteered to edit. But Jaime didn’t want my help. She wrote the book in a weekend and published it in about two weeks. She wanted to get it out there, in part to help others who might need it, but in part to be done with it. To close that chapter on her life. This was a personal project, for her, not a professional one.

That was hard for me to accept. Because it’s not just spelling and grammar.

The In-Between is about being honest with who you are and accepting yourself. Reading the book, I kept thinking, “I’ve been there. I’ve struggled with my own insecurities and learned how to face them. I could have helped. I wanted to help.”

But it didn’t happen. For whatever reason, this was something Jaime had to do alone. I have to accept that. Even when there are times I think I can help, my help may not be wanted and it may not be all that helpful. After all, there were times when she was going through rough patches, when I tried to give encouragement, I tried to give advice. I wanted to fix things. But I couldn’t.

Schizophrenia is not something that can be “fixed.”

I learned this the hard way.

For the most part, I’m not in this book. I think an older sister was mentioned once, early on. When I asked Jaime about it, she said that there wasn’t much to say. She was focusing on the big, painful things that shaped her life. Most of it is a critique on herself.

"Invisible Peoples Blame" by Jaime Lang

Yet there is one chapter that I took as an indirect but still very personal criticism. “Nice and Kind Are Not the Same,” is the title of Chapter 45. Here, Jaime/ Aramyst defines nice as not saying mean things, while kind is more akin to compassion, suffering with other people.

“In fact, it seemed that Aramyst had spent a lot of time surrounded by nice people who didn’t want to talk about ‘not-nice’ things and when Aramyst tried to explain what she was experiencing, they had quietly and politely left her to sort through all the ‘not-nice’ but very real and painful experiences on her own. They were nice, but that had not been kind.”

I know—in fact, I’m keenly aware—that I am guilty of this sort of behavior. I avoid ‘not nice’ subjects with a passion. And when I’m not actively avoiding the unpleasant, there’s a lot just don’t notice. I don’t want to deal with difficulties. I just don’t have time for it.

Jaime said that she didn’t put much of me in the book, because I didn’t really do anything bad. That may be true, but clearly, I didn’t do any good, either. I was inconsequential—or at least that’s how I feel.

And it hurts, because she’s been such a major part of my life. If I’ve grown kinder over the years, it’s in large part due to her. I suffered with her. This is not to say that I always sat there with her and cried with her and felt the pain as she did. No. Often I was oblivious to her sufferings. But she is my sister, and when she hurts, I hurt, too, whether I wanted to or not.

Kindness, I think, is not just feeling terrible alongside someone else. Nor is it, I believe, offering advice on how to “fix” things. I think kindness is about empathy and action—understanding what a person needs and then using that understanding to help them through it. I’ve come to the conclusion that kindness is a skill, one that begins with listening.

And that’s why I had to read this book, whether I wanted to or not. If my sister had the courage to tell me about her life, I needed to have the courage to listen to it. Both speaking and listening can be hard, because both risks judgement from those you are closest to. But it’s this risk that separates “being nice” from “kindness.”

* * *

I feel like I’ve talked a lot about myself in this post about my sister’s schizophrenia. It’s not that I mean to undermine or take attention away from her struggles. I just feel unqualified to speak, either as a medical expert or as a person who has to live with it. My point in writing this, in addition to expressing my own feelings, is to give some insight as to what the families might be feeling—to offer a parallel voice to my sister’s work.

Links and Resources

If you want to learn more about schizophrenia, here’s a good informational article from the American Psychiatric Association and here’s an article about it from NAMI’s website, which has links to other areas of support. My family and I got a lot of help from NAMI, or the National Alliance of Mental Illness, although resources vary depending on the area. You can check out their website here.

If you want to learn more about my sister’s unique experience with schizophrenia, you can check out her book, The In-Between, on Amazon or look at her website or read her blog.