On Pain and Healing: How a Headache Helped Me Understand My Sister’s Schizophrenia

 I had a headache.

Oh, I often have headaches, but this one was far worse. It struck the left side of my head, like a metal spike protruding from my eye, going through my teeth, and ending down at the edge of my throat. It kept me up at night, it disrupted my work, it drove me crazy. And for the longest time, I didn’t even want to tell people I had a headache, lest they think I was using it as an excuse to hide my laziness.

My little sister lives with schizophrenia, social anxiety, and depression; has come close to killing herself at times; has been through divorce; has lost a child through miscarriage; and has been through an exhausting journey of self-discovery, which she wrote about in her book, The In-Between. As she spoke to me about dealing with the pain in her life, I told her about my headache.

“Yes,” she said, with a laugh. “That’s what it’s like.”

Surprised?

My friend Rita has fibro myalgia, which means her nerves are in a constant state of anguish without any physical cause. Yet she is the first one to sympathize with whatever minor wound I’m dealing with. “Pain is pain,” she says. It doesn’t matter if that pain is couched in fancy medical terms like schizophrenia or fibro myalgia or if it’s just a headache.

Everyone has felt pain. Everyone has had to deal with pain. Therefore, everyone has the capacity to help another person going through pain.

When my sister was first diagnosed with schizophrenia, I had no idea what that meant, what was going, or how to help her. I wanted to help, but I didn’t know how. As I’ve grown older, I learned more and have a better understanding of how to help them with the healing process. To me, it all begins with empathy.

Walking in Another Person’s Shoes When Those Shoes Don’t Fit

I learn and understand the world through empathy. By that I mean, I put myself in another person’s shoes and try my best to understand what they might be going through. I do this by creating parallels. Maybe I can’t understand this big, massive thing, but I can understand this small thing and compare the two. Like the headache. I can grasp a headache.

When my sister describes how she can’t sleep at night, I recall how the stabbing in my head kept me awake. When she is frustrated by how schizophrenia keeps her from doing normal tasks, I recall how the headache kept me from focusing. No one could see my pain, but I knew I was experiencing it—yet I was afraid people would think I was making it up, using it as a crutch, as an excuse. And so I kept my mouth shut. I didn’t want to complain. I didn’t want to admit how terrible the pain felt.

Notice how I react to pain, gives me perspective. It helps me to figure out what I would want and need in in a similar situation and gives me the power to act.

This is important, especially when the other person is unable to express their needs. My sister has described her disease as being “like drowning.” When she’s in the most pain, when she feels like she’s dying, when she desperately needs help, it’s like there’s water in her mouth. She can’t cry out for help—let alone tell others how to respond.

Empathy creates a bridge. It helps me at least guess what my sister might need, even when she can’t tell me. Of course, it helps to be able to know for sure—usually by talking to her during calmer times. Once I make my guess, I can tell her and she’ll let me know if I’ve got it or missed the mark. Clarity helps.

Beyond this practical application, I think there is something spiritually healing about empathy. To know that someone understands you, that they are willing to share in your pain, that you are not completely alone—this helps. Even if the person doesn’t always understand what you’re going through, it helps to know they’re trying.

Healing the Pain, Not Fixing a Problem

I think there is this insidious notion in our society that everything can be “fixed.” Bad teeth? We can fix it. Overweight? Try our diet. Not attractive? Here’s some plastic surgery. Going through a traumatic experience wherein your brain is flooding you with pain every day? Take some pills. Everything will be better.

Except that it doesn’t work that way. Not everything can be “fixed.”

One of the eye-opening things I’ve learned about the schizophrenia is that there really isn’t a cure. The medicines manage the symptoms—sometimes—but the disease is still there, re-configuring the brain. If that’s too obscure, my friend with fibro myalgia takes powerful opioids every 4-6 hours to keep the pain from being overwhelming—but the pain never completely goes away. A slight bump will cause her agony, whether or not her pain pill has kicked in. The situation is the same for my sister. She’s always in pain, and there’s absolutely nothing I can do to stop it.

If you adopt the attitude, even unconsciously, that the way you help someone is by “fixing” their problem, it’s going to be difficult for both of you. You will never be able to “fix” them and you will become frustrated by your lack of results. The person, meanwhile, will start to go from thinking they have a problem, to they are the problem—and that’s never good.

If, however, you focus on healing, you have a better chance of being more useful.

Here’s the difference: no one can actually heal another person. A person can’t even heal themselves. Imagine a cut on your friend’s hand. Can you make the bleeding stop? Can you fuse their skin cells together? Can you will scar tissue to form? The finest doctor can’t do it. The person can’t make their own body stop bleeding.

The body heals itself.

But there are certain circumstances that can help or hurt healing, and that’s where other people can offer help. To me, healing another person means helping create an environment where healing can occur.

Time to Rest

Whenever I get sick, the first thing I want to do is sleep. I need to rest. That seems to be how the body heals; it shuts off all energy-consuming functions, like conscious thought and exercise, and diverts all its energy toward healing.

It’s one of the most basic things we know about health, and yet, it seems to be the one we’re quickest to disregard. We have things to do. We need to work. And so we push and push, until the body either floods us with so much pain we’re forced to stop or it just starts shutting off functions on its own. I’m lucky in that my body just shuts off my willpower and puts me on procrastination mode. My sister will push herself until she passes out.

When someone goes through a huge, painful thing like schizophrenia, they need to rest. One of the best things to do, I think, is to give them the time and space to do so.

I picture someone with a broken leg. It takes a long time for that leg to heal. If you keep asking the person, “Are you feeling better yet? Hurry up and get better,” they’re going to feel pressure to get out of bed. But if the leg isn’t properly healed and they start playing soccer, they’re going to break that leg all over again—and this time, it will be worse. If they keep breaking it, over and over again, eventually, it won’t be able to heal properly at all.

My sister told me that taking a year off between high school and college might have helped. Instead, we expected her to hurry up and finish school, hurry up and find a job. As a result, she went from breakdown to breakdown, until she gave herself a year off to heal.

I’m not saying to keep the person bed-ridden or locked inside the house. Just try to be patient if they aren’t able to do “normal” stuff. Give them permission to rest, to go slow, to move forward at their own pace.

Small Acts of Service

When I want to help, I always think it has to be some grand act of heroism, like passing a Congressional law or launching a non-profit organization. Actually, I think the person most appreciates small, day–to-day acts of service, like driving them to the doctors, picking up their medicines, or making dinner. You know, the sort of things you’d do if someone had a cold.

Although I know I can’t actually make someone feel better, I do have one trick that sometimes helps: I distract them. I talk about books or movies or something they like; I read them parts of books or get them to watch a movie with me. This helps them feel good and gives them a brief respite from the pain. Plus, the company helps.

For my sister, one of the things that help her a lot is advocacy. This sounds big and scary, but it really means explaining to other people what she’s going through, so she doesn’t have to do it herself. For example, if there’s a family get-together and she can’t make it because she’s having a panic attack, letting other family members know.

It’s not so much that the acts are grand; it’s the consistency and the consideration behind them that adds up to something meaningful. Little things can make a big difference.

Knowing When to Step In

Most of this has been about healing, which is a very slow, low-action of process. However, there are times where there is a problem that needs to be fixed immediately.

For example, any time a person is bleeding. My sister used to cut herself or scratched long gashes into her arms to deal with the pain. If a person shows signs of injury, if they are suicidal, if their behavior is significantly worrisome, then you step in. You take them to a doctor and get them help.

There are times of crisis. These are the big, dramatic moments that we all dread. And they happen. As time goes by, you hope to get better at reading the signs. You check in on the person a little more often. You try to handle the problem before it gets too big.

I haven’t had much experience in these situations, so I have no words to say about this, except that my heart goes out for people in these circumstances. When people are in crisis, you need to act quick and decisively. When they are not, it’s more about patience and understanding. Most of the time, people are not in crisis—but the crisis can happen suddenly and without warning. It’s hard to know what stage they’re in or how to switch back and forth between these mindsets. I think it’s hard for the person as well.

Live and Learn

I have one last thing to say. I wrote this article, not for my sister, but for my mom. She came to me after trying to read my sister’s book, upset at home much my sister suffered and how little my mom even knew about it. How could she have not seen the signs?

But she didn’t know because she didn’t know. Nobody knows, at first.

You learn. And it’s hard and it can be painful and you make mistakes. And I’m writing this because I have made mistakes, so many mistakes, but I have learned. And maybe by sharing, I can help other people to learn as well.

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.

Book: Review: The In-Between--An Honest, Imperfect Telling of Life with Schizophrenia

Title: The In-Between

Author: Jaime Lang *

Genre: Memoir
* Full disclosure: Jaime Lang is my sister. 

Summary

Aramyst was supposed to lead an Exceptional-Normal life: to have a nice job, a nice family, and succeed in the American Dream. Then came the rumblings of schizophrenia, depression, and social anxiety, along with the burgeoning realization she was gay (or transgender?). Burdened with this double stigma, Aramyst struggles through the typical markers of young adulthood—friendships, first loves, and fitting in—with a loosening grip on reality and a “demon captain” urging her to suicide. It is only through making peace with herself that Aramyst is able to escape from “The In-Between,” a realm between real and unreal, life and death.

Review

This book isn’t really about being gay or having schizophrenia, so much as it is about the struggle to be honest with yourself. Unable to discern real from unreal, Aramyst learns to mistrust herself—that she is wrong and that everyone else is right. Coupled with an environment that sends the message that being gay is immoral, Aramyst comes to the conclusion that she is evil. She learns to hate and tries to destroy herself—ripping herself apart from the inside out.

Although her journey is dramatic, the telling is simple, almost child-like at times. I was surprised by how much I could relate to this book. Who hasn’t had some inner, negative voice telling them all the ways they’re stupid and how they’ve messed up their lives? Who hasn’t wanted to destroy the undesirable parts of themselves, pretend they don’t exist, will them out of existence? I felt compelled by the author’s honest voice and it wanted to keep reading, even through the painful stuff.

And it is painful. The subject matter of THE IN-BETWEEN can be hard to read, although not for the reasons you’d think. For all the trigger issues of self-harm, hospitalization, and suicide attempts, it’s actually the day-to-day parts of life that are most intense: the friendship and relationship dramas, the desire to be loved, and the feeling of rejection. In a world that’s upside down, the big, scary stuff is mundane, while little bouts of human interaction are paralyzing.

In the middle of a book, while reading about a relationship I knew wasn’t going to end well, I had to stop and skip to the end, in order to reassure myself that everything would be all right. The good news is that there is hope, but it is not what you expect. Everything doesn’t go back to normal, the problem fixed, everything isn’t fine and dandy. Instead, Aramyst finds truth and wisdom buried within her pain that gives her the courage to move forward.

One objective criticism I have with THE IN-BETWEEN is the abundance of misspellings and grammatical errors. It caused me to grit my teeth, again and again. This is not a professionally published book. This will not appeal to those looking for a polished memoir. But it is an honest telling of life with schizophrenia and I’d recommend it for anyone who wants to get a better idea of how this form of mental illness can affect real life people.

 * * *
As a side note, Jaime Lang also does art and photography, which you can view on her website: https://www.dreamsofjuly.com

Weekly Update: 9-30-15 Schizophrenia and Taco Tuesdays

Announcement: I will be selling copies of THE CHANGELINGS as well as a few of my homemade cards at the El Dorado High School Holiday Boutique (1651 Valencia Ave., Placentia) from 10-11 this Saturday, October 3rd. Various local authors to sign from 9:00-3:00.

Announcement: On Saturday, October 10, NAMI is hosting a 5k Walk in William R. Macy Park (1810 E 17th St.,Santa Ana, California 92705) at 10:00 AM (check-in begins at 8:00) to raise money and awareness for Mental Illness.

* * *

 Since the beginning of September, my mom, dad, and I have been attending a "Family-to-Family" class hosted by NAMI (National Alliance on Mental Illness). The class educated people with a family member who is mentally ill about everything from the types of diseases and medicines, to communication and problem-solving techniques, to where to go during a crisis. 

My younger sister Jaime has recently been diagnosed with schizophrenia. This is only a small surprise as she was diagnosed with schizoaffective disorder as early as high school and has since bounced around with everything from social anxiety, depression, and PTSD. Naming the disease is actually a relief, since it means I can sit down and research it.

(This website offers a good insight into mental illness by portraying them as pokemon-esque monsters: http://www.earthporm.com/real-monsters/?utm_rcreplace_392=4650)

I should have researched it in high school, when symptoms first broke out. That was the crisis time, when it first came to light that my sister heard voices telling her to do violent things. At that time, though, I was senior in high school and it was my first experience of life going off the rails and I didn't know how to handle it. Later, I went to college and then to Japan, and my sister's condition began to stabilize, and I just sort of assumed she was okay.

But even though she's managing her disease, it hasn't gone away. So my mother suggested we all take the free class to learn about it.

Every Tuesday, my parents drive down from Victorville. We go to Rubios for their $2 fish tacos and attend the class together. And I have to admit, it hasn't exactly been a breeze. Some of the people attending the class have family members who are homeless or in jail. The heaviness of their sorrows sink into the soul. At the same time, it frightens me, since schizophrenia is a degenerative disease, which means it may get worse.

But a few things have made it more bearable:

1. Tacos! It's actually nice to go out to dinner with my family and spend time together, just hanging out and talking. We're scheduling in family time weekly, something I haven't done in forever.

2. Doodling. During class, when either the instructors are speaking or other people in the class are sharing, and I start feeling overwhelmed, I just start sketching. I'm still listening, but the drawing acts as a pressure valve, alleviating some of my stress. And, as it turns out, doodling actually helps pay attention. So there you go.

3. Understanding. It didn't exactly happen all at once. After a month of info dump, listening to other people's stories, and reading on my own, I'm only just starting to piece things together. What really helped was hearing about it from my sister herself, which tied everything together. 

One of the saddest things about mental illness is the stigma society attaches to it. If were to say my sister had brain cancer, it would cause an outpouring of pity. Schizophrenia sounds scary. Yet it is a disease. It eats away at brain tissue and causes the body to deteriorate. What's frightening about mental illness is that it shatters our illusion of control. We figure that, if nothing else, we are masters of our own mind. But if we lose our ability to reason, if we start to hallucinate, if the words we hear no longer make sense, how much control do we have?

 
This seems like a heavy, depressing topic. I guess there's no way around that. But the awesome thing about humanity is how they can adapt to almost anything, even turning negatives into positives. My sister uses art to express how schizophrenia affects her life. For me, just learning about what's going on, forces me to deal with my own fears and insensitivities. Yes, I'd like to live in blissful ignorance, but facing a "hard" situation and walking away with knowledge, makes me feel powerful. If I'm not in control, at least I'm aware of what's going on.

"Cup Full of Love and Happiness" by Jaime Lang

* * *

After ending last week with a couple of subbing jobs, I spent all of Saturday making cards. I've been getting digital stamps off Etsy, particularly from a seller called Aurora Wings. After the mess of colored pencils, paper, and glue had cleared, I ended up with 20 new cards, 5 of which were quickly claimed by my mother. Sadly, this is only the beginning of card-making season, as Christmas is right around the corner.

Some of my new cards.

Barreling round the corner like a monster truck without breaks is Nanowrimo. Although National Novel Writing Month doesn't officially start until November, I usually spend all of October brainstorming. This year, I want to try and lead a group to 50,000 year word victory, so I've got to organize that as well, but as usual, I've procrastinated. 

For anyone interested, this page has good resources for preparing for Nanowrimo: http://nanowrimo.org/nano-prep