At a recent forum on mental health in San Antonio put on by Clarity Child Guidance Center, author Cinda Johnson spoke about her daughter Linea’s years-long descent into mental illness. She’s written a book about her family’s struggles. In today’s TPR Lifeline, Bioscience-Medicine reporter Wendy Rigby focuses on bipolar disorder. Here's a transcript of the interview.
Rigby: The name of the book is Perfect Chaos: A Daughter’s Journey to Survive Bipolar, A Mother’s Struggle to Save Her. Cinda, why did you decide to write this book?
Johnson: Actually it began with Linea journaling. And she wrote and wrote and wrote through all of the experiences that she had. And I said ‘let’s share this book.’ She said ‘well, you have to write your part.’ So I did and we ended up getting it published. We saw the inequities and inequality of treatment around mental illness as we entered this world of mental illness and felt like, you know, we have got to get our voice out there and advocate for treatment.
It shouldn’t be based upon where you’re born and who your parents are and how much money you have, the kind of healthcare you get. And we happen to have some resources that provided her good healthcare. But she was hospitalized with people that had nothing. And their outcomes are very different.
Rigby: Give people a little background. What is your daughter’s diagnosis and how long did it take to get to that diagnosis?
Johnson: Her diagnosis is bipolar disorder. She had a lot of anxiety and depressions in high school. But I assumed it was something outside of her: her schedule, her overachieving tendencies. But looking back, I’m certain that that was the beginning of her illness.
She was diagnosed when she had a major crash at 19 while she was at college in Chicago. But she came home and was hospitalized and was diagnosed at the point.
Rigby: What are some of the specific characteristics of bipolar you would like people to know about?
Johnson: It starts with these sort of hints of what this illness is. But it takes awhile to diagnose that. Often times it typically comes in at the end of the teen years. But students in their high school years often have symptoms. So on the one hand we don’t want to assume that every child that has anxiety as a 15-year-old is going to have bipolar disorder. But on the other hand I tell parents ‘know the symptoms like you would strep throat, for instance. You know, when do you take your child to a doctor to find out? And so, there must be at least three episodes of depression and of hypomania or mania. And that can take a couple of years before that falls into place.
Rigby: She said over and over again to you ‘I don’t know why I’m feeling this way. I don’t have any reason to be feeling this way.’ Is that something parents should look out for?
Johnson: Yes. I was giving her the message of ‘if you got more sleep…if your schedule was better.’ Which meant try harder and this would go away. Which really was the wrong message to give. But we both were going down that road of ‘how can we fix this?’ rather than ‘this is a brain disorder and we need a doctor.’
Rigby: How many times has your daughter been hospitalized and what kinds of therapies has she undergone that have helped her?
Johnson: She was hospitalized four times. She’s had electroconvulsive treatment which is not for everyone. I’m not, you know, pushing it. But for her, it saved her life.
Rigby: So she’s 30 years old now. How do you feel about her future?
Johnson: I feel very hopeful about her future. I’m at the point if something happened to me tomorrow, I know she’d be okay.
Rigby: You write in the introduction that love alone won’t save someone with mental illness. Isn’t it true that as family members, we think we can fix it all by loving them hard enough or well enough?
Johnson: Absolutely. And that leaves, I think, a feeling of loss that you couldn’t do it, a feeling of grief. And I think we need to be able to deal with those feelings. There’s something about mental illness that even though I know better, I still was wracking my brain to think ‘how could I have done something differently to have prevented this?’ And we know that’s not true. But it’s part of the stigma around mental illness.
People who do well with a mental illness don’t have to tell anyone. And so we don’t know how many people live productive lives and have jobs and have children and get married and have healthy partners in relationships. Part of it is sharing the book for that purpose…to share that story of hope.
Rigby: Cinda Johnson, one of the author’s of Perfect Chaos, thank for talking to us.
Johnson: Thank you so much, Wendy.
