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Linea Johnson is a recent graduate from Seattle University, with a major in English and Creative Writing. Prior to transferring to SU, she completed three years at Columbia University, Chicago, in a musical performance program. Linea recently worked as an intern at the World Health Organization in the Mental Health department. She is a national speaker and writer, advocating for understanding and support for people with mental illness and the elimination of stigma.
Cinda Johnson, Ed.D., is a professor and director of the special education graduate program at Seattle University. She is also the principal investigator and director of the Center for Change in Transition Services (http://www.seattleu.edu/ccts). She is a national leader in the area of transition from high school to post-high school settings for young people with disabilities. She has written articles and book chapters in the area of secondary special education and transition services including youth with emotional and behavioral disorders and mental illnesses.
“Perfect Chaos is an open-eyed, sometimes raw, always astoundingly honest account of a family’s unanticipated battle with mental illness. Cinda and Linea’s awe-inspiring resilience and the sheer courage of their emotional transparency moved me to my core and deepened my empathy for all those touched by mental illness, including beloved members of my own family. It is about the fierce, transformative love between a mother and daughter and how they both learn to share their truths.” --Glenn Close, Actress and Co-founder, Bring Change 2 Mind
“A remarkable story about remarkable women! Linea and Cinda brilliantly light a path to hope, understanding, and acceptance as they smash through the stigma of brain illness. Be inspired by the strong voice they give to patients, relatives, care-givers, and especially to those unable or afraid to show their wants, needs, hope.” --Patrick J. Kennedy, Former US Congressman and Co-Founder, One Mind for Research
“Perfect Chaos is as much a map as it is a memoir, a powerful resource for families and individuals navigating the confusing and painful world of bipolar and mental illness. The dual-narrative of mother and daughter allows for twice the insight and inspiration. From the giddiness of mania, to the crushing depression and yearning to end it all, Linea captures the experience of being bipolar with raw honesty and a fresh voice. Cinda's passages illuminate her life on the sidelines, alternately feeling determined and unshakable or heartbroken and helpless. Her refusal to give up on her daughter, and Linea’s will to live, resulted in Perfect Chaos, a brave and realistic, yet life-affirming message of hope to families and individuals living with mental illness.” --Claire Fontaine and Mia Fontaine, authors of Come Back: A Mother and Daughter’s Journey through Hell and Back
"PERFECT CHAOS is the definition of mental illness. I read most of Cinda and Linea's words with tears in my eyes. Living with bipolar disorder myself I didn't find one untrue word, not one exaggeration in this exemplary book, only the truth. This brave and honest book will educate people who have little understanding of mental illness and allow those who live with mental illness a knowing that they are not alone. I have a feeling I'll be buying PERFECT CHAOS by the case to distribute to those who don't understand." --Jessie Close, Co-founder, Bring Change 2 Mind
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Cinda
We began the many tasks of preparing to move Linea back to Chicago. Were we doing the right thing? Would Linea be okay in Chicago? Her doctor wasn’t convinced, nor were we, but she pushed and pushed. She would lose her schol- arship if she didn’t enroll fall semester. She would lose her medical insurance if she wasn’t a student. She told us she would lose her very self if she had to stay in Seattle. Please, please, I prayed, let this be the right decision.
After many long discussions and decisions made and changed and changed again, we decided to drive from Seattle to Chicago, more than two thousand miles of highway along I-90. We took the southern route and pulled a U-Haul ?lled with Linea’s and Jamie’s possessions, including a full-sized keyboard that had moved home from Chicago, a small hide- away couch, the squishy green Goodwill chair that had fol- lowed her home from her apartment with Jean, and boxes of books. We were looking forward to a road trip and spending time with Linea and Jamie before leaving them in Chicago until Thanksgiving. What did we know?
We drove through a record heat wave that followed us from Idaho to Illinois. We had to unleash the U-Haul more than once for vehicle repairs. Jamie questioned whether the dif?culties getting to Chicago might be a message telling us not to go. I wondered the same.
We barely made it to Chicago in time to unload and return the U-Haul on schedule. Jamie and Linea’s new apartment was two blocks from the music building, and I hoped that the convenience to her classes would help Linea stay steady and well. We set up the beds and pulled out the couch. We took the girls to dinner at Miller’s Pub, full of memories from hap- pier times. We came home and fell into an exhausted sleep with the unfamiliar sounds of the city banging at the win- dows and hopefulness whispering in my ears.
The next day, Linea had an appointment with a psychia- trist. Her doctor in Seattle had given us his name, and he came highly recommended by both the medical community in Seattle and my own search online. I had spent hours on the phone scheming to get our medical insurance to cover him and the psychologist working in his practice. He was outside our insurance’s preferred providers, but someone within the company told me that if I could not ?nd anyone else to take her they would consider this doctor. I called more than twenty of?ces until I found ten that told me they were not taking new patients or they would not take patients Linea’s age. I documented this and sent off a letter to our insurance com- pany along with a letter from Linea’s Seattle psychiatrist. I somehow convinced them to make an exception for these "nonpreferred" providers to care for Linea.
Linea seemed to be stable, although given the trip that we had just been through it was hard to tell. One evening some- where in the middle of the nation, we watched a sunset the likes of which we do not see in Seattle. Linea said, "I wish I could get excited again about a sunset." That comment stuck with me. It con?rmed my belief that she was "stable" but not where she wanted to be. Her joy seemed to be gone.
We met with her new doctor, ?lling in her history in addi- tion to what he had in her medical ?les, providing informa- tion for insurance and Visa card numbers. The psychiatrist, like Linea’s doctor in Seattle, was a kind, gentle, quietly brilliant man. It had been his suggestion that Linea also see a psychol- ogist in his practice so that they could together get to know her, manage her care, and check with each other if necessary. As I left, he said to me, "We will take care of her. Think of us as her family away from home." In that moment, I believed him, and he would soon live up to his words.
We finished everything we needed to do in Chicago, and it was time to leave Linea and Jamie. I wouldn’t cry. It was time to go. I had to trust her. She said to me, "You have to believe that you can trust me. I think I have proven myself." It was true. Her ?ght to live was a battle and she had won the ?rst round. And yet I wanted to stay with her, live with her, take care of her, and keep her safe. But I couldn’t. I held her to me and whispered, "You will be okay. Keep safe. I love you so."
We headed west to Washington. Curt and I had thought that after leaving Linea, we would have our own time together, that we would be happy as empty nesters once again. But the worry followed us back to Seattle and the exhaustion stayed.
Linea
Something’s wrong. I can’t be happy. I will never be happy. They give me a big room. A cute apartment. A beautiful life. A good job. Friends. I don’t care. I can’t enjoy this. Every new addition is another thing to be sad about. A big room to mope around in. Another place to create sad memories of pain.
I have been longing to and have just started once again to cut myself. Fuck, what is wrong with me?! I’m such a freak. It feels so good, though, and everything I was just going to com- plain about and whine about feels slightly better. The loneliness, the sadness, the need to cry. It’s gone.
I tried to puke today. I tried to get rid of the fat that is push- ing out of my body, but it didn’t work. I stuck my anger as far back in my throat as I could before I tried the toothbrush, and neither worked. I’m so sick.
I have forgotten to take my pills for four days in a row now. I am quite literally going mad. I have been too caught up in the fairy- tale lifestyle of an independent dweller to care. Too busy having sleepovers with boys, skinny-dipping in Lake Michigan under a full moon, playing basketball, reading books, and now it’s back to kill me. I am restless. My mind is going crazy. My thoughts are racing so fast I can’t function. I am going nuts.
I began reading Italo Calvino’sIf on a Winter’s Night a Traveler,and I thought my brain was going to explode. There was so much going on and so many switches between thoughts, that on top of my regular crazy thoughts I started to think even faster. I had to stop and stare at the wall for ten minutes just to cool down.
Today I went to the library and read everything I could about Andy Warhol’s Factory. I can’t stop reading and thinking, so I went up to the roof and screamed at the top of my lungs, and by the time I got back to the apartment I still couldn’t stop pacing and swaying.
I am losing my mind. I have this yearning to be part of some- thing great. Be something great. Be in art. I can’t stop thinking about it and I need it so badly I think I’ll explode. I honestly think this is what I have been longing for.
I told my psychologist that I feel lonely when I go to the Art Institute and that I need something, that I’m trying to I'll something and I can’t be satisfied. I try to do it with boys and drugs and booze. Sex and love won’t accomplish anything. This need won’t go away. I started cutting again because I needed to fill this void. Of course I can’t tell anyone about that, not even my psychologist, because there is no way to truly express this. I just need something. I need to be a part of something. My own some- thing.
I took seven painkillers. I’m going to take more because I’m only slightly numb. I just have to be careful not to take too many so I won’t get sick when I drink tonight. The pills have calmed me down a bit. I stopped pacing, but now I just feel depressed that I’m not anywhere or anything.
I want to be somewhere else, or something or someone other than me. But these pills kill a bit of the need. I need something stronger. Maybe the booze will help. I have to be careful not to let anyone ?nd out. I can’t fuck up again. This all has to be secret this time. This time I will be able to keep hold of myself before I am hospitalized. I can treat myself my way without going over- board. I know I can. I have to remember to take my meds so this won’t happen again. I can’t get much crazier.
October—After something like ten tries at antidepressants, they have finally given me Prozac. It’s amazing because already it has given me a boost of energy. I feel like I am walking on water and want to take as much as I can. I want to get rid of the outer time- release capsule and sniff all the powder inside. I hope it stays this good. They also put me on another mood stabilizer. It appar- ently has an appetite suppressant, and I think this could be a good way to convince myself to stop eating. Before, I could blame my eating on the antidepressant, so I ate more. Now I can just stop eating and blame it on the new pill.
I feel that the world that was weighing down so heavily upon my shoulders before has really only been part of my imagina- tion. What was so important? What was I seeing, feeling, hear- ing before this moment? What changed this? Why do I no longer see the spaces in the words like I did when I left the hospital? Why do I feel that was nothing? But I have nothing to say. Noth- ing to write. Nothing to tell. Nothing but endless bouts of bore- dom, pain, and longing for reasons unknown. What can I say but journal entries equal to that of a twelve-year-old?
I can write of longing. I long for love. I long for the hold of someone stronger than my own demons. Someone to save me from myself. To make my heart beat fast and my tongue stutter and my speech become quick and unimportant. Someone to whom I give my life. Gives me hope once again. I long to have a reason to stop this charade of disaster.
I can write of boredom, of filling the spaces with endless banter or drugs or alcohol. I can speak of times when I pulled at my hair and screamed off of roofs out of sheer madness. Rides on trains when the train went so fast the paint chipped from the walls and the lights blurred. Rides on trains when the train went so slow I could hear the rats running beneath. I can speak of times when I walked down the street so high that I couldn’t feel the people I ran over or hear the cars that honked. I can speak of boredom so strong I couldn’t help but drag a blade over my ?esh.
I can write of pain. I can write of the pain that develops when you hurt for no reason and have to ?nd ways to soothe it your- self. I can write of the pain that develops out of boredom and the pain that develops out of longing when you’re not strong enough to withstand the pressure.
But none of this matters. None of this gives me anything to write about. I feel more incomplete than I ever have in my life. There is no longer any way of expression worthy of this life. There is no form of art capable of expressing this madness.
Getting back to school has been dif?cult. I have been trying my best not to freak out. I will be playing the piano and get a sudden panic so that I can’t see the notes straight and don’t un- derstand what I am reading so I have to force myself to calm down and be normal. I get close to collapsing when I think of hurting myself again, but I have been okay so far. I will make it.
Last night I dreamed of shooting myself in the head. I was calm and happy and remember thinking, why haven’t I thought of this before? It is so easy! Then I pulled the trigger. I think I was in my closet. I haven’t dreamed of suicide in a long time. Every once in a while it pops up like a bad dream during the day. I walk by the practice rooms and see myself curled on the ?oor hyperven- tilating and start thinking about the redness. I think about jump- ing into trains at times when I least expect it. But it is nothing like the old days. I know I will be okay. I will make it this year. I think I will survive. I have been contemplating buying razor blades but ?gured that buying razor blades is just as bad as pick- ing up sleeping pills. I might just decide to sleep forever. One cut might not be enough. I will make it this year.
I don’t know if I can do it. I don’t know if I can stay out of the hospital. I am trying to be in school, trying to work hard. Trying to be safe. Trying to be good. But I can’t push too hard. I am feel- ing lethargic again. I am getting to that point where I lie around a lot. The point where I stare a lot. The point where I can’t quite function. Yesterday I bought a pack of razor blades. I decided I needed to stop using scissors and knives. I’m sick of sawing away at my ?esh. I’m sick of peeling away layers; I just want to slice with ease. I used the razor blade today and it was amazing. It is so much better and it bleeds so much more. It was beautiful. I dabbed the blood with a piece of toilet paper and almost the entire piece was bright red. This was so much better than before when there were only dabs of blood. Sometimes I think I need to talk to my counselor, but I don’t know if I want to go back to the hospital quite yet. I really want to make it through this time. I need to be normal for at least a little while longer.
Charlie wanted to talk. We went to dinner and he talked with nothing to say. He talked about what to do about me. He talked about what he should do because he is still in love with me. He doesn’t know if he should talk to me ever again. He wants to hate me. He doesn’t know how to deal with me.
He gave back the notes I wrote to him. I cried at the restau- rant. I cried for the ?rst time in months. I cried and told him they were his and that I’m sorry I fell out of love. I told him I didn’t mean to or want to. He said he wanted to know why, but I can’t tell him why. I can’t give him answers. I can’t help him feel bet- ter. I can’t ?x this. I feel like we broke up all over again. My heart was crushed. I went back to my room and sobbed.
Later, when I talked to Jamie, it all came out. I cried and cried. I talked of Charlie and Jean and how this depression is ru- ining all my relationships. I told her that I’m afraid to love again because I’m afraid I will fuck it up. I told her that I am afraid I will ruin our relationship by going crazy or being weird. I am so scared to say anything to anyone anymore because they will all just get scared away. The real me is just going to hurt everyone. The real me will scare everyone, but I can’t act fake anymore.
I can’t do this much longer. I’m having a hard time seeing the point in trying to have any relationships anymore. I’m hav- ing a hard time trying to see why to get out of bed or leave the house. The dishes have piled up like in the Broadway apartment. They are molding and crusting. My room is a mess. My life is a mess. I can barely force myself to go to class. This is ridiculous. I can’t do homework or concentrate in class. I can’t even think of ways to hurt myself.
I am really hurting here. The other night I told Jamie I thought something wrong was going to happen. I know what that means. I only say that when there is something bad about to happen. I only say that when I’m falling down again. I don’t know what to do. I don’t know how to hold on anymore, or who to talk to. My counselor just told me to hang in there. How am I supposed to hang in there when I can’t even get up in the morning? If this gets worse, I won’t be able to hang on to anything.
I don’t know what to do. Charlie is gone. Jean will never call back. I can’t tell my parents. Jamie tries so hard. My doctors tell me to hang on. I’m hanging on for my dear life, now what?
There’s something coming down my face and I’m not sure if it’s raining or I’m crying. The sky is blue. I’m sitting against a wall in a small alley off of Dearborn. It smells stale like the basement of my dad’s old hardware store. A stronghold for wood, nails, and blow-up pool toys. But I’m not in that safe dark basement. I’m in an alley next to a rancid Dumpster, and for the ?rst time in my life I truly want to run away.
I think about the teenage runaways that prowl the Seattle streets and wish I had such freedom. I wish that I had the free- dom to completely drown myself in mind-killing drugs. I want a way to forget whatever this is that’s happening to me.
My mind is racing. I don’t know why I’m here, but I remember walking. A frantic walk toward nowhere. I remember agitation. Anxiety. I remember walking around the Loop, passing business- men and watching their glances as they stared me down. My clothes wrinkled and falling off of me, my hair a giant rat’s nest on my head.
There’s something sticky on my wrist. I touch it again and it stings like hell. I’m bleeding. A small trench just above my wrist. A trench dug, I’m guessing, throughout the walk. Layer by layer taken away by agitated fingernails. What’s going to happen next? I’m rocking back and forth on the cement as some man empties the garbage out the back of a restaurant.
What do I do now? I can’t think straight, but I know some- thing must be done. I know it’s not normal to want to chop your ?ngers off with a butcher knife. I know it’s not normal to walk one hundred laps around one small apartment. I know it is not me to wish I was some junkie shooting up in an alley. Something must be done.
Cinda
We were back in Seattle and to our lives in our empty nest, lives in which we were behind in every aspect. Linea had talked to her teachers and had her old job back as a teaching assistant in the music department. She told me that her teachers knew what happened, but I didn’t believe they did. How could anyone have known how sick she really was? Or still was?
She was not doing nearly as well as we pretended, and I was not peaceful about her return to Chicago. About a month into the school year, she and her doctor decided that the medication she was on hadn’t moved her out of a depression.
He wanted her to try Prozac. Once again I was on MEDLINE and researching this drug and its side effects. I thought and worried about her all the time.
A few weeks into the Prozac she had more energy. I was so hopeful that this medication would help her, that it was the answer. We still didn’t have a clear diagnosis, we hadn’t yet found a treatment plan that kept her stable, and I constantly questioned whether we should have supported her return to Chicago. But what if we hadn’t? She was miserable in Seattle and wanted desperately to return to her music program, her friends, and Chicago. She blamed her lingering depression on her life. She was supposed to be a college student, studying on a scholarship in an exciting city. She had planned this since she was in grade school. She had worked hard to get there. She was doing so much better, but she was de?nitely not the way she had been prior to her return from Chicago in January. Was this enough time for her to become stable enough to live alone? She wasn’t ill enough, nor could we force her to stay in Seattle even if we wanted to. I could only hope for the very best for her and try not to worry and worry and worry.
One Wednesday two months into school, she called me very excited about a ballet that she had seen. She talked on and on about the musical score, when, where, and how it was written, and how incredibly powerful it was. She eagerly told me about her plans to get a master’s degree and of her idea of doing her thesis on this particular time and arena of music. I didn’t know the ballet or the music, but I did know how much Linea loves to learn. She and I share the feeling of excitement that comes with learning something new and having it reso- nate somewhere within. That day she was as excited as I had known her to be since before she was ill. I was not exactly worried, but as I listened to her I wondered if it was the Pro- zac that had allowed her to move so quickly from the ?atness and distance she had struggled with just a few weeks earlier to excitement and joy. After we hung up, I thought about our call some more, and I began to worry. I convinced myself I was not thinking "mania," but maybe the Prozac was too strong a dose? Was I just pretending because I wanted so badly for her to be happy again? For her to be well, to not be getting sick again?
Saturday she called me at seven thirty in the morning and told me she had her apartment cleaned, she had done three loads of laundry, and she was practicing her piano and feel- ing absolutely great. She told me she finally had energy! She was thrilled. She didn’t sound as hyper as she had during the call on Wednesday evening. She was just very upbeat and talking faster than normal. I hung up believing that she was okay. Maybe this medication was the one that would work for her. It had been so long since I had heard her happy or ex- cited. I put my nagging feelings from Wednesday to rest and began to feel hopeful.
Sunday she called, again early in the morning, and told me, "My brain is racing. I feel like I can’t keep up with it. I feel so jittery." She said she couldn’t think straight and she was feeling very agitated and anxious. Linea said, "If I start running, I don’t know where I will end up. I might not be able to stop."
At the end of her conversation she said, "I am afraid, Mom." I was so very afraid, too.
"Can you call your doctor, or do you want me to? What can I do for you?" Maybe I should go to Chicago? Linea called her doctor and got an appointment for Monday morning. I had a sleepless night as my body remembered the fear and the pain and the prayers of the last hospitalization. We had all believed that the worst was over. But I realized it was more hopefulness than belief. Both Curt and I were very disheart- ened. We didn’t have our reserves ready for another battle, although we would do whatever it took. I knew that Linea was more frightened than we were; she didn’t know what was hap- pening to her. We spent a sleepless night, waiting and trying to reassure each other. Curt reassured me more than I reas- sured him. I was overwhelmed with worry.
On Monday, Linea called me after her appointment and said she was off the Prozac and now had anti-anxiety medica- tion. She still felt her mind was racing out of control and told me that she had "felt it coming" for the last few weeks. We didn’t ?nd out the extent of what she had been through—the drugs, the reckless behavior, the sleepless nights, the danger- ous outings, the cutting—until much, much later. That Mon- day, after her doctor’s appointment, she told me a small piece of those dangerous weeks. Over the phone, she whispered, "Mom, I have been scratching my hands. My wrists and my palms. I feel like my skin is . . . I don’t know what. I can’t stop doing it. I am making them bleed. I’m sorry."
I began to cry silently, keeping my tears from her. I felt I couldn’t withstand this any longer. I could not bear to see her in so much pain. But I had to.
Linea did not want us to come out.
"No, I need to handle this. I have to be able to handle this," she said.
I called Curt, Curt called Linea, I called Linea, and she called us three or four times during the ?rst part of that day. During her last call, on Monday evening, she told me that she was going to bed and hoped that she could sleep. She hadn’t been able to sleep for many, many nights. I couldn’t sleep, either.
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