'Perfect Chaos': Mom And Daughter's Bipolar Battle
JACKI LYDEN, HOST:
This is TELL ME MORE, from NPR News. I'm Jacki Lyden; Michel Martin is away. They say it takes a village to raise a child, but maybe you just need a few moms in your corner. Every week, we check in with a diverse group of parents for their common sense and savvy advice. Let's start with some recent news.
Congressman Jesse Jackson Jr., from Illinois, has been away from work for a couple of months. Yesterday, more details came out, about exactly why. The Mayo Clinic, in Minnesota, says the congressman, son of the famed civil rights leader, is being treated for depression and bipolar disorder.
Bipolar disorder is something Cinda Johnson - a professional in youth disabilities and emotional disorders at Seattle University - never suspected her daughter Linea might have. Linea was a bright student-athlete and mature, and ready to pursue a music career. And her mother thought her ups and downs were just a sensitive teen's angst. But when college came, the mood swings became impossible to ignore and finally, suicidal. Yet Linea's parents, despite their professional background, were as beleaguered as any parent might be by their daughter's descent.
Linea and her mom, Cinda Johnson, share their story in the memoir, "Perfect Chaos: A Daughter's Journey to Survive Bipolar, a Mother's Struggle to Save Her." It came out this summer. They're with us now; welcome to the program.
LINEA JOHNSON: Thank you.
CINDA JOHNSON: Thanks.
LYDEN: This is a remarkable book. It's informed by your journals, Linea; and by your honesty, Cinda. How are things going now?
LINEA JOHNSON: Well, things are going great today. They were not going great about a month ago, because I was just hospitalized for the third time. I had electroconvulsive therapy, and it ended up being a really great treatment for me. And I, honestly, haven't been this happy in years. So they're going really great today.
LYDEN: I want to come back to your ECT therapy. You're very unabashed about it, and talk a little bit about what that's done for you. But let me come back to this: The journals that you've included in this book, Linea, I thought really just spoke so frankly. Maybe you could begin by reading from one.
LINEA JOHNSON: So this is from page 9 of "Perfect Chaos."
LINEA JOHNSON: (Reading) I don't choose to act this way or that. I don't choose to have crushing depressions or extreme manias. I don't choose to need extra help from my family or friends. I don't choose to sometimes feel like killing myself. Why did I do the things I did in my life? Did I ever have a choice? I was given a gift, and a curse, at the same time; and the only choice I ever had was how to accept it. I feel because I feel, and sometimes my feelings are more extreme than most people can imagine. But I always try my best.
LYDEN: What kinds of feelings were you noticing that you thought, deep in your heart, were maybe a little more acute than anything your friends were feeling?
LINEA JOHNSON: The level of acceptance I had in myself, was much different than my friends'. I was always judging myself much more harshly. And the level of sadness, I felt, was much more extreme than my friends'. And it got to the point where I couldn't do a lot of the activities I was doing in my life because I was just so tired, and so sad, that I needed to take breaks more often than my friends.
LYDEN: And Cinda, what were you noticing about your teenager? You had already successfully raised your older daughter, who's seven years older than Linea. But a crisis did come along in her adolescence. Tell us what was going on.
CINDA JOHNSON: Linea was way less verbal about her issues when she was younger. And she wasn't argumentative, and she didn't do those - sort of typical things that 13-year-olds do. But when she got into her high school years, she just had so much anxiety, and so much middle-of-the-night depressions and worrying about things. And I - looking back, particularly as we were editing the book, I realized the mistake I made was, I kept looking for something outside of her to fix. And as we went through "Perfect Chaos" again and again and again, I was just like - as someone who teaches about bipolar disorder, I was like, wait a minute. This was a brain disorder. It was way beyond what we could fix. It took a number of years to really get that this was not something that we could rearrange her schedule, or we could spend hours talking about, to fix it.
Whereas with my older daughter, things would - you know, blow up and blow over; and it would be fine, and we would move forward. With Linea, it was always underneath the surface, even when she was able to carry on her life. And if I just jump with the journals, I think that the most incredible thing about Linea's journals - and as I was reading it outside of my mother head, I was reading her writing and saying, wow. This is like an inside look of someone going through the initial stages of a mental illness. I was just blown away by how she could describe the mania and the depression and the anxiety. And on one hand, it was horrifying. But on the other hand, it was fascinating to be able to get into someone's mind like that. And her doctor said as well. So, yeah.
LYDEN: When you were a teen, there was a little hint. There was a friend of yours, Linea, where this kind of really crashed for you. And this was a friend who had trouble with self-mutilation, and you - you had to sort of get involved with her story.
LINEA JOHNSON: She was dealing with a lot of depression at the same time as me, but she had started cutting. And at the time, I was the only one that really knew. Well, I think her sister might have known, but I was really the one she was confiding in. But I noticed they were getting closer and closer down her wrist, and deeper and deeper. And it just got to the point where I couldn't keep it a secret anymore, and I had to tell someone.
So I worked with my mom to figure out who to tell and how to tell, and how to get her help; and eventually, went to a teacher at school, who eventually went to a counselor at school. But it was really mishandled. And the counselor ended up not dealing with it very well, and made it so that I was kind of the bad guy in the situation. And I had to follow her out to her car, to get her knife; and I had to follow her around to her classes, as she was crying, to go get her backpack. And so it just ended really, really badly. She ended up not talking to me for a very, very long time. And that was really when, I think, one of my very first depressions began - was just the way that that was handled, and just being so overwhelmed with everything that was happening at the time; while at the same time, losing a friend.
LYDEN: I bring that up, Cinda, because going through something like that, one could see where you think, well, if we just get past this, it'll straighten out...
CINDA JOHNSON: Mm-hmm.
LYDEN: ...even for a professional like you, who is teaching signs of bipolar disorder. But maybe there is something that people should be looking for.
CINDA JOHNSON: I agree. And I think that - you know, now, when we talk about bipolar disorder and "Perfect Chaos" with audiences, they're always like, what should we do about it? And we always talk about, know the symptoms and the signs - like we would a physical illness in our children, you know. You know when to take your child to a doctor, when a sore throat starts to - you know, a fever starts to spike, their personality changes; we take them to a doctor. But you get so kind of used to the upheavals of the teen years that you think that you're going to get through it - versus, you know, maybe you should go to the doctor sooner. And I actually did take Linea to a psychiatrist, at that point. But unbeknownst to me, she didn't like the psychiatrist. She didn't like the way the meds made her feel. She ended up flushing them down the toilet. And you know, I look back and, you know, hindsight is always best. But perhaps - be more proactive, would've been a good thing, and really following through; and knowing how many kids have a mental health condition in high school.
LYDEN: If you're just joining us, this is TELL ME MORE, from NPR News. I'm Jacki Lyden, and we're talking about the memoir "Perfect Chaos: A Daughter's Journey to Survive Bipolar, A Mother's Struggle to Save Her." Our guests are co-authors, mother and daughter; Linea Johnson and her mom, Cinda Johnson.
Could you read a passage from your part of the book, Cinda? This is so exhausting, for a parent; just totally consuming. I think a parent might naturally be angrier, to some degree, about having one's own life sort of taken away, than you seem to be in these pages. But read to us - share with us what you have on here, about the magic charm.
CINDA JOHNSON: This was after some - one of these phone calls, and one of these really severe depressions. And I wrote: (Reading) What magic charm could I possibly do, to take this all away and make her well again? Nothing I said seemed to calm the raging sadness that had overtaken her. Not quiet sadness but raging, painful, horrifying sadness. I could only be by her side. I could sit on the bathroom floor and on her bed, and be in the same room with her. But I couldn't enter that dark and terrifying place that was consuming her.
LYDEN: You know, to some degree, when I think the word "symptoms," I think, you know, it's so obvious - although maybe not in the initial stages, but when somebody really almost cannot live - Linea, you would sometimes say, "I can't take this." And Cinda, eventually you and your husband were able to say, "this" is life. This means - "I can't take this" means "I can't take this life."
CINDA JOHNSON: Exactly. And in fact, my husband - Linea's dad - was talking about this the other day. And he said for him, the darkest spot was when she said, "just let me go." She was in the hospital. It's like, "stop trying to save me; I don't want you to." And for him, that was the low point. And at that point, I was saying, "you can let go because I am not going to. You're in a safe place, and I am not letting go." Yeah, it was this euphemism for "let me leave this world."
LYDEN: Would you talk about coming to the hospital the first time, when ECT enters the picture? You're on suicide watch, Linea. Describe that for us.
LINEA JOHNSON: So I was extremely, extremely suicidal. And I would basically, look around a room and find everything I could use to harm myself with. I would find cords or find light bulbs, or anything like that. And I would have to have an H.A. watch me because I would go for them, if I could. And I remember there was even a point where there were some staples in the wall, and I had to have my dad remove them because I was afraid I would put them under my fingernails.
LYDEN: And I just want to interject, the H.A. was the hospital assistant.
LINEA JOHNSON: Yes. And so I had a hospital assistant watch me 24/7. They watched me sleep, even. It was very difficult because of course, you don't have any privacy. And they would watch me talk to my family, and they would watch me go to the bathroom. And it was, it was very difficult.
LYDEN: And Cinda, when the doctor says you should try electroconvulsive therapy, what was your reaction?
CINDA JOHNSON: I, honestly, did not know that people still did ECT. Or if they did, it was not to people like my daughter. It was maybe some last-ditch effort in some mental hospital somewhere, when they've given up on someone. So I was just - it's - hate to use the word; I always use the word "shocked." I was shocked by it. But I was absolutely, so totally surprised. My family - to try to tell my family about it - my mom and my dad; Jordan, Linea's sister, was completely against it. So it was very difficult the first time, you know, at that moment.
LYDEN: Do you think that's because so many of us - especially those of us of an older generation - absolutely cannot think about ECT without thinking of Jack Nicholson, in "One Flew Over the Cuckoo's Nest"? I mean, if there's one image that maybe has completely made that frightening, that might be that movie?
CINDA JOHNSON: Well, I think that's contributed to it. I think there's a lot of stigma around ECT. But when we present even to young college student audiences, that's their impression of ECT. They are completely blown away, that it's still being done. And yeah, it's...
LYDEN: But Linnea, it's very much different, though, than it was 20 years ago...
LINEA JOHNSON: It's very, very different than it was 20 years ago. I got it when I was 19, and then I got it again when I was 26. And even in that span of time, they've changed it so that it used to be sine waves and now, it's called rectangle waves. So even in that span of time, it's changed dramatically.
LYDEN: And what we're basically doing is improving the brain's circuitry so that some of these impulses and this depression, which didn't respond to medication - so that that negative spiral is stopped. Right?
LINEA JOHNSON: Mm-hmm. And it was really - I mean, ECT is not necessarily for everyone. Some people do have bad experiences with it. But I have just had nothing but positive experiences with it. And the first time, when I was so suicidal and when I was, you know, checking the room for everything that I could use to hurt myself; after the first ECT, I stopped having those thoughts.
CINDA JOHNSON: I see it now as part of a treatment plan that works really well, for so many people. When we were at the ECT this last time, people come in and have a treatment, and go back to work the next day.
LYDEN: It's probably important to say that every person's mental illness is unique; that every...
CINDA JOHNSON: Yes.
LINEA JOHNSON: Absolutely.
LYDEN: ...that every brain is different; that the way one person absorbs a bipolar diagnosis of 1, and bipolar 2 - these are gradations of the illness; it almost doesn't really - it's just something one would consult with a doctor about.
CINDA JOHNSON: Yes.
LYDEN: It doesn't really matter. It's your own, unique story, and yet all these universal factors apply.
LINEA JOHNSON: Mm-hmm.
CINDA JOHNSON: That's what I think makes it so tricky; is that it is - it's got different symptoms on both ends of the spectrum. There's so many different treatments. It's amazing to me, that doctors can figure this out. But they do.
LYDEN: So you both give many, many talks, now, to people of all ages. But I would think certainly, college-age audiences must be particularly receptive. What's the most common questions that you get - Cinda?
CINDA JOHNSON: The questions that we always, always get are the hardest ones. And it reminds us, again, of how privileged we are with our resources, and with our knowledge and our family support. But the questions about family members that don't have treatment - that are perhaps on the streets; that have been rejected by their families because they haven't been able to get them stable - those are the questions that we get constantly; is, what about those people?
LYDEN: Ladies, why write this book? You didn't have to divulge your life stories to the world. I can see maybe sharing in a talk, or a group. But it's really going public, putting it out there in a book.
LINEA JOHNSON: I wanted people to actually know what's going on in the mind of someone who's living with bipolar disorder, or living with a mental illness.
CINDA JOHNSON: And for me, I would never have shared this book had Linea not wanted to. But from the very beginning, she noticed the discrepancies between her care and the people that were in the hospitals, with no insurance. And we heard so many times: You? You don't look like someone who has bipolar disorder.
And I think that it's important for us to give back - because we really have gotten so much. And I think it's also important to show people that you can live well, with bipolar disorder. I mean, Linea wouldn't have to tell anyone because when you meet her at her job, or out with her friends, or doing what she's doing, it doesn't scream bipolar disorder. She's living well. She has a job; she has a wonderful relationship with her boyfriend; she's got great activities. She wouldn't have to tell anyone. That's the point. That's the hope - you can live well.
And I think the other thing - it's an ongoing story. This recent hospitalization, in some ways - of course - it was disappointing. But in other ways, I was so proud of Linea. I mean, she managed this herself. We were there to help, but she told us what we could do to help her. And she did everything exactly the way that I would want anyone that had a chronic illness to be able to handle and manage their lives, to get well. So you know, it gets easier. But it is - it's a lifelong illness, and it doesn't go away.
LYDEN: Cinda Johnson and Linea Johnson are the co-authors of the memoir "Perfect Chaos: A Daughter's Journey to Survive Bipolar, A Mother's Struggle to Save Her." And they were kind enough to join us from NPR member station KUOW in Seattle, Washington.Ladies, it was really an inspiration to talk to you both. Thank you so much.
LINEA JOHNSON: Thank you, Jacki.
CINDA JOHNSON: Thank you.
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LYDEN: And that's our program for today. I'm Jacki Lyden, and this is TELL ME MORE from NPR News. Let's talk more tomorrow.
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