From Hospitalization to NPR

Yes, I know this blog is waaaay longer than is suggested by the blogging experts. If I blogged more often perhaps it wouldn't be! This was posted on The Balanced Mind Foundation. Check out this wonderful organization!!

It has been an incredible three months. It started in May with the release of Perfect Chaos, the book my daughter and I wrote together. This was followed by book launch events, national interviews, presentations, book readings and signings all across the country. Linea spoke in the opening session of the National Alliance on Mental Illness conference in June and received a standing ovation from over 1,500 people. A week later, she was hospitalized. She spent ten days in the psychiatric unit at a major hospital in Seattle. Shortly after her discharge, we were interviewed for Tell Me More, an NPR program that just aired on August 14th. The host, Jacki Lynden, caused me to reflect on this most recent stage of my life, a life affected by my daughter’s bipolar disorder.

“Were you angry after this last hospitalization?” Jacki asked me during our discussion. "It seems you have the right to be." I hadn’t really thought about anger but I think it was there, buried beneath many different and conflicting emotions. There was sadness, relief, fear, pride, anger, acceptance, hope and many more emotions that I will likely need my therapist to help me define. Yes, I was certainly sad that once again my beautiful daughter was hospitalized with a depression that was quickly escalating into the I-am-not-safe zone. “WHY??? WHY??” was running through my head, and this certainly may have been anger speaking. But I felt immense relief that she was receiving the care and treatment she needed. I also experienced a higher level of acceptance of this nasty illness and a strong belief, colored by past experiences, that her symptoms would be treated.

As well, I felt a huge sense of pride in her ability to care for herself and to ask for help when she needed it. We have been on a journey for more than seven years with a goal of Linea managing her health conditions. She met that goal. Her dad and I were out of the country when she knew she needed help. Linea recognized her symptoms for what they were, she put a support plan in place to ensure she'd be safe, she spoke with her medical team over a weekend when offices were closed, and she, once again, was completely honest with her family. We arrived home on a Sunday and she called to say, "We need a family conference." I went with her to her psychiatrist on Monday and she was hospitalized that afternoon. She even managed to call her medical insurance company just hours before her hospitalization to ask if she needed to do anything more than let them know what was going on.

It was also easier because we had all been through this before. I neither felt anxious when telling our family members and friends, nor did I feel compelled to provide support as they struggled to understand the illness and Linea’s symptoms. The phone calls and conversations took much less energy than during her previous hospitalizations. They moved into support mode quickly and efficiently.

There were still thoughts, deep in the night, about what brought this on and what could have been done to prevent it. Were the activities surrounding the book the cause? Was sharing our story the reason? Should we have not launched this book at this level of energy? Our dear friend Dr. Delaney Ruston (filmmaker, Unlisted: A Story of Schizophrenia) called me from across the country to see how Linea was doing. She said at first she was thinking that perhaps Linea was exhausted from all the book activities and then she said, "One of the main things I got from Perfect Chaos was that this illness is not caused by outside factors. Linea is ill because she has bipolar disorder, not because she didn’t do something good enough or did something wrong."

Managing one’s lifestyle, rest, sleep, stress, diet and exercise is an important part of managing bipolar disorder but it is not an absolute guaranteed cure. Linea is continuously learning to balance the life she wants with a chronic illness. This is a chronic illness that can be well-behaved, providing opportunities for a person to live in recovery. But it can also snap and snarl and need extreme attention until it can be tamed once again. When it causes problems, I do not want to give Linea the message that, somehow, it is her fault. She had been doing everything possible; lots of sleep, tweaking medications, seeing her psychologist weekly and her psychiatrist every two weeks, rigorously doing all the therapy suggested to her and yet, she still became ill again. She has a brain disorder.

Treatment worked once again and she is happy, moving back into work, having fun with friends again and relishing living in recovery. Will it last? How severe might the next episode be? When might it happen? We don’t know. If anything, bipolar disorder has taught us to appreciate every moment of health and happiness in all of our family and friends. Life is short, full of challenges and surprises yet, somehow I think we all live with seeds of hope inside of us somewhere; seeds wanting to fully blossom and allow us to live every minute noticing the good things, the small things, the kind people around us, the millions of moments we shouldn’t take for granted.

Listen to Linea describe where she is today on NPR’s Tell Me More! http://www.npr.org/blogs/health/2012/08/14/158768330/familys-fight-again...

June 29, 2010: What WERE we thinking?

I wrote this almost two years ago, June 29, 2010. I am fascinated reading this now, one week before the release of our book, Perfect Chaos (St. Martin's Press, 2012). It all still holds true!

One day after Linea's graduation we received an offer from a major book publisher for our book. WOW!! We were and still are ecstatic! First came the news from our agent that the editor wanted to talk to us. Two working days later we received an offer from the publisher and after a couple of days of back and forth with our agent we accepted it. We were both completely excited and the whole thing seemed impossibly surreal. The book proposal went into submission the week of June 1st and we received the offer the next week. Our agent told us the speed of this was quite unbelievable particularly in this current market but we attribute it to her ability to push us further and further with a better, more concise and compelling proposal. The excitement continues but the first night (very late into the night, actually) it hit me. This is the real thing. Our book will be published. In stores and on bookshelves across the nation and perhaps beyond. What WERE we thinking? Suddenly I was insecure. The "what if's" flew like bats into my bedroom and into my worrying mind. What if we had bad reviews? What would a negative comment do to my daughter? What if my colleagues thought I was not "academic" enough by sharing a very personal memoir of a devastating illness? I hadn't had such small (what about the cover??) and long-range (what will my grandchildren think about this twenty years from now?) worries since I the births of my two daughters. Around and around my mind went until finally it settled on trust in our work, our agent, our editor and the world at large. We are committed to sharing our story with continued efforts to increasing understanding and support for people with mental illnesses and their families and to reduce the stigma surrounding mental illness that adds another layer of pain to these illnesses. What a journey!

It's All in Your Head!

Are people more willing to pay to avoid physical illness than mental illness? The study might surprise you! I have been so busy with my daughter's and my book, released May 8th (Perfect Chaos - St. Martin's Press, 2012)! I haven't blogged much so thought I would share an article in which I interviewed with the author, Reyanne Weaver. It is a rather long article but I think also very interesting. Take a look at EmpowHer. It's not until the second page that I FINALLY get to give my opinion so if you are interested, keep reading!!

An excerpt, "“Neighbors and friends rally around someone with breast cancer while the doctors determine which treatment option is best based on sophisticated diagnostics,” Johnson said. “I do not believe the same level of support exists for a woman who is hiding in her home battling the overwhelming [effects] of depression.”

It Was More Than Teen Angst...

Depression affects students of all academic levels, social positions and economic statuses.
Depression in children and teenagers has devastating impact on the crucial stages of social, emotional and cognitive development, with far-reaching and negative impact on these young lives.

One in five young people have some sort of mental health condition; one in eight has a serious depression.

Despite these daunting statistics, a mere 30% of these students receive any sort of intervention or treatment. The other 70% simply struggle through the pain, doing their best to make it to adulthood. If this were the case with child and adolescent cancer there would be an outcry from the public.

I know these statistics well. I know that educators have a unique opportunity to recognize and support students struggling with depression yet often are either unaware or simply aren’t sure of the severity or need for intervention and therefore do nothing. Parents may well be in the same camp. Is it “teenage angst”? Growing pains? Typical of a child who may be in the middle of a family crisis? A young person having problems with friends, feeling left out or deserted?

My daughter’s depression snuck into her life during her high school years (if not before) and even though I was teaching about depression to graduate level students, I did not recognize it for what it was: severe, life changing, and needing intense treatment. Yes, I knew she was anxious and sad and confused about her friends and their own issues. I knew she worried about where and what life would hold after she graduated from high school.

I was concerned enough to talk her into seeing a psychiatrist and therapist. Both diagnosed her with depression. The very words “clinical depression” startled me. She was still getting high grades in college preparatory course, participating and excelling in piano and voice as a young musician and keeping up with her friends and activities. She spent a few months taking an anti-depressant and then, unbeknownst to me, dumped the remainders down the toilet. We spent hours talking and she cried and she said she felt better and then she worried and then she thanked me for listening to her. We all assumed it was “situational”. Whatever the cause, it was depression.

I have had a unique opportunity to reflect on this as I was working my way through the final edits of the book that I wrote with my daughter, Linea. Her work is “real time” journals written in the midst of her depressions. As I read her words and mine I thought about what I should have done differently and eventually thought about what I did well, from a mother’s perspective, not a professional’s.

There were a couple of things I would have done differently but they are both big ones.
I assumed she knew that if she did not like the first therapist she saw she could go to another one. She didn’t know this. And if she did it would have been very difficult for her to change therapists or doctors without a lot of support from me. She didn’t know she could, she didn’t know how and she didn’t want to hurt anyone’s feelings.

I would have been much more cautious about her depression and encouraged (harassed? forced?) her to continue under a doctor’s treatment for much, much longer. As she says now, “Everyone benefits from a therapist!”

I think I did a couple of things right and Linea certainly contributed and taught me many things during our journey. We had and continue to have a very honest relationship. I know she didn’t tell me everything and it was only after reading her journals that I knew how severely depressed she was but she did talk to me about her worries and fears. I tried to never be judgmental or shocked by anything she told me or anything I read. I always trusted her to do the best she could and I always believed in her fierce desire to be well but I eventually realized that the depression was way beyond what she was able to handle on her own. It just took me too long.

My knowledge and understanding of the research and treatments for depression have shifted due to my personal experiences as a mother as well as a daughter of beautiful and strong women who battle depression. Depression is a brain disorder. Yes, there is situational depression but this, too, can turn into a depression that changes the thinking process, messes with memory, pushes away friends and family, causes physical symptoms and, as my mother says, is “more painful than any physical pain” she has ever experienced. And she has experienced much physical pain in her lifetime. I spent too much time trying to manage and “fix” the environment around Linea rather than helping her find the treatment to fix the illness going on in her brain.

I am thrilled with the Balanced Mind’s new partnership with Erika’s Lighthouse. I am moved and inspired by the voices of the young people featured on the videos. I encourage all of you to share with others and take full advantage of the webinars, resources and materials available about depression. Let’s make sure that our young people who have depression receive treatment and that everyone knows the symptoms and where to seek treatment for depression. Depression is treatable. Untreated depression is deadly.

Posted on The Balanced Mind blog.

Tell me why? "...disarming all hostility"

Linea and I are reading our book again, preparing to work with our editor in September. As I read I often need to stop and walk around for a bit, drying my eyes, and centering myself back into this safe place in which I currently reside. Reading it pulls me back into all the fear and uncertainty yet I know there is a hopeful ending. I read a few passages that remind me again why we chose to share our most private lives, agonies and all. The following excerpt was written during Linea's first hospitalization. We are in the psychiatric ER in the largest trauma hospital in Seattle:

"We are finally called into the lock down unit of the psychiatric ER to stay with her. There is no information from anyone. There are no windows. The doors are locked. The nurses are harried. The three of us sit in a tiny room with a gurney and one chair. We don’t know what to expect or what we should expect so we wait. A nurse comes in briefly and answers our questions by telling us she has no information.

As we wait in the ER we listen to the nurses as they determine that two of the patients will need to spend the night on gurneys in the hallway because there are no mental health beds available in the city or anywhere nearby. These patients are homeless and there is no place for them to go. They have no mother or father or aunt or son or friend with them to campaign for their treatment or figure out the “ropes”. Alone, they face a dense maze of very dangerous ropes.

Even as sick as Linea is, she is aware of the inequity of the mental health system and her own strong sense of humanity pushes through her illness. Linea questions why she, an upper middle-class white girl with no obvious problems in comparison to these patients, should be the lucky one and get a bed. She questions whether she should have told her doctor how sick she was.

“I shouldn’t get the bed. Tell them that I can stay in the ER tonight. Let someone else have my bed. I can go home with you,” she cries. She becomes more upset as decisions are made on who will stay and who will go.

As we wait, we listen to a man at the end of the hallway sob and cry and weep off and on for hours until his sedation kicks in and finally all is eerily quiet from his room. At this point in our journey I am not yet used to grown men crying like children who are hurt and want their parents, believing their pain will never stop. It is only the beginning of my education in this kind of pain."

Linea was in the psychiatric unit of the hospital for much longer than a "night or two" as we initially had hoped. Over the next month she became an intimate member of a group of people whom most turn away from on the streets and elsewhere. I, too, begin to know these patients as people. People who deserve much more than they receive. People who deserve care and understanding, support and....love.

Would someone suffering from a heart attack in the U.S. not be able to find a bed or treatment? Would a mother be too embarrassed to bring her daughter clean clothes if she were in the hospital for a kidney stone rather than a depression?

If we could read the secret history of our enemies, we should find in each man's life sorrow and suffering enough to disarm all hostility (Henry Wadsworth Longfellow)

What WERE we thinking?

One day after Linea's graduation we received an offer from a major book publisher for our book. WOW!! We were and still are ecstatic! First came the news from our agent that the editor wanted to talk to us. Two working days later we received an offer from the publisher and after a couple of days of back and forth with our agent we accepted it. We were both completely excited and the whole thing seemed impossibly surreal. The book proposal went into submission the week of June 1st and we received the offer the next week. Our agent told us the speed of this was quite unbelievable particularly in this current market but we attribute it to her ability to push us further and further with a better, more concise and compelling proposal. The excitement continues but the first night (very late into the night, actually) it hit me. This is the real thing. Our book will be published. In stores and on bookshelves across the nation and perhaps beyond. What WERE we thinking? Suddenly I was insecure. The "what if's" flew like bats into my bedroom and into my worrying mind. What if we had bad reviews? What would a negative comment do to my daughter? What if my colleagues thought I was not "academic" enough by sharing a very personal memoir of a devastating illness? I hadn't had such small (what about the cover??) and long-range (what will my grandchildren think about this twenty years from now?) worries since I the births of my two daughters. Around and around my mind went until finally it settled on trust in our work, our agent, our editor and the world at large. We are committed to sharing our story with continued efforts to increasing understanding and support for people with mental illnesses and their families and to reduce the stigma surrounding mental illness that adds another layer of pain to these illnesses. What a journey!

Dearest Daughter, A Love Letter on Your Graduation

As we approach your graduation week-end I think about all the love letters we have written each other over the years. You have written me letters from joy and pain, excitement and anguish. I have written you love letters during both the happiest and the darkest times.  How proud we were when you graduated from high school and soon left Seattle for Chicago, a scholarship in hand and a goal to complete a degree in music performance! Yes, there was fear and long, anxious talks with plenty of tears while you struggled to decide where to continue your musical studies. Depression crept around the edges of your life and sometimes moved in to flatten you but mostly you held it at bay. Once you decided on Chicago there was no stopping you. Your dad and I were astounded at your success your first year in your program. I had many opportunities to watch you perform and navigate your college, the city and your life. I felt so much pride in your independence!

The second year of college your life and ours was torn apart by an insidious and unexpected disease. It was not in "the plan", was it? After the pain of almost losing you, the fear of "what's next?" and the gradual acceptance and partnership with this new way of life, you have moved forward, taking us with you. Life changed for you and for us as you eventually changed majors and universities and continued to pile up classes in the arts, philosophy, literature, poetry, and wrote and wrote and wrote some more. Can you believe that throughout all of this we wrote a book together? You opened your heart and soul to me and soon, to the world. I learned so much writing with you. You have taught me to push outside of my comfort zone, to question my thinking, and to trust your brilliance, maturity, and wisdom.

But here is the point of my love letter. Yes, plan for your future but don't miss a single moment of today. You are truly special. You are unleashing your power on the world. Relish each moment. You are surrounded by love. Not only Mama and Popi but your fierce-loving sister and little Thomas, who's worship-love for you will only grow over the years. The two grown boys have your back and would do anything for you. We will never leave you. Yes, you are surrounded by love. You have done more in your life already than most people your age and there is so much more to come. Oh, my youngest baby, I have told you this so many times and if I could give you any gift it would be: Trust the Universe. There is a plan for you and you need do nothing but stay authentic, honest, brave and open. Love, the Mama
    Relish each and every moment in time.....

My Story

We (the daughter and I) have decided to make February a month of sharing stories to fight stigma. So, along with our newly posted video on YouTube we are going to start sharing our stories and learnings on our blogs, starting conversations about it on our Facebook and Myspace site and commenting on it on our Twitter page. So, visit us, chat with us, and learn with us. Here is a piece of a very long story...

I had lost a brother to suicide. I knew to keep careful watch on my children’s mental health. I was qualified to do so. I dedicated 10 years of my life formally studying child and adolescent disability, and emotional and behavioral disorders in bachelors’, masters’ and doctoral programs. I have a vast amount of knowledge based on education, research and experience in the field of “transition services” for youth with disabilities. In other words, I know stuff. I have spent hours and hours teaching and working with kids who are failing in every aspect of their life. I have talked to parents as the wise woman who offered words of support and advice. I teach educators and school psychologists and school counselors as a professor in a graduate program. I teach them the skills to assess, educate and support children and adolescents with disabilities. I thought I knew a thing or two. I was not prepared.

Life was moving along and I was in a good space five years ago. Our youngest daughter, Linea, was off to college to study classical music performance and our oldest daughter was happily married and developing her own business in the world of art. My husband and I were ready to experience the empty nest. I didn’t know enough. I was not prepared.
Less than two years later I was flying back from Chicago one more time and I was crying. I sat in my seat and without making a sound the tears ran down my face over Minnesota, North Dakota, Montana, Idaho and Washington. Why now? We had brought Linea home from college with a severe depression. She was hospitalized less than two months later. She was suicidal, she was non-responsive to medications, she was ill beyond my wildest imagination and all the training and education and wisdom that I might have thought I possessed seemed worthless. She dug her way up and out of that depression but to a flat and grey place. She was back in school nine months later. And then she was hospitalized again. Her meds were changed. Her treatment plan was all consuming. She went back to school after each set-back and she continued to talk to me with honesty and love and a dim spark to be well and to live.

I had not let go through all the days and nights of this battle. Her dad and sister and our family spent those months in a place of hell but I fought with all my might to keep her alive. On that flight home from Chicago after she was finally back in school it hit me hard that I could not fix her pain. I couldn’t stop her thoughts or change what she did with those thoughts. I couldn’t be with her every minute and I couldn’t get into her brain and chase the terrorizing illness away. I could be there for her and I could be physically with her but I could not be in her. This was her battle and we could only support her in that fight. We could bring her home from college, we could hospitalize her and we could find the very best doctors in two cities more than 2,000 apart from each other but I could not keep her safe every minute of every day. I felt panic and terror. I sat in my seat for the five and a half hour flight and I thought and thought about this. I went around and around in my head and finally settled on my trust in her. Hadn’t she proven herself a valiant fighter? Hadn’t she asked for our help to hold her and be with her and stay close to her when she was near losing the battle? By the time the plane landed I had it figured out in my own mind. All I wanted was for Linea to find peace and happiness. I wanted her sense of humor and her excitement and joy in living to surround us all. I let go of my fear of her and me and our family being judged by others and…I let go of my pride. I know that everyone who truly loves Linea would not judge her. I am even prouder of Linea than of her gifts. I am humbled by her strength. I can breathe. Perhaps our story will offer hope to even one family.


"self-portrait" taken in hotel bathroom,
(presenting at conference in Savannah)

Karma and Impossible Things

One definition of karma is an action or deed which causes an entire cycle of cause and effect. Serendipity is good luck in making fortunate and unexpected discoveries. We have had a combination of both in the last few years and in our journey to meet our agent. My daughter and I have written a book together and are working to get it published. Before I tell you the fascinating tale of our agent, let me wax on (literary term) about writing for a bit. I know that there must be hundreds and hundreds of books that have been written but never published, laying around in drawers, on old floppy disks (remember those?) and on hard drives. But never published. Never read by an agent. Never sent to a publisher. It is hard, hard work to move a good idea or a burning need to write onto paper, day in and day out, writing, writing, writing. It is equally hard to find an agent by presenting a well-written proposal only to turn around and re-write the proposal again and again until it is ready to go out to a publisher. The majority of new authors or academic authors write in their time between (paid) work and family. I think it is alot easier to let a good idea or a somewhat completed book languish in the recesses of a dark hole somewhere than do all the hard work to get something published. The good news is that we signed with an agent October 1st in New York City. It was amazing and more than exciting. We spent a full year of work preparing all that was requested for this next step in the process of publishing a book. Now for the karma/serendipity part of the story.

We flew out to New York to meet with our agent with anticipation and a strange feeling of coming full circle. New York was a place of great hope for Linea. She first went there as a high school senior, singing with a college ensemble at an international jazz festival. While in Chicago majoring in music performance her goals were centered in New York. There were many actions in the next few years causing an entire cycle of cause and effect. She became ill and was diagnosed with bipolar disorder. She took a medical leave from school and was hospitalized. She returned to school and was hospitalized again. She fought and struggled and somehow was able to stay upright while trying to manage this new and insidious illness. Linea transferred universities and will graduate this year with a degree in English and creative writing as well a three years of credits towards a degree in music performance. After all of this, we were in New York City in the fall of 2009. As we followed the directions to our agent's office in Union Square Linea pointed to a bench in the park directly outside of the office. "I called you from there, crying", she said. "Remember?

I remember. It was her last year in Chicago. She and three friends flew to New York City. It was the week after Christmas and husband Curt and I had gone to the remote and beautiful Ucluelet on the Pacific Rim Trail on western Vancouver Island, British Columbia. It is a place as far west as you can get in North America. While in NYC Linea had her wallet stolen with all her identification, money and her credit and debit cards. She was barely well and didn't need any additional stress in her life. I was frightened for her as I stood in the pouring rain and the exact spot in order to get cell phone coverage while she cried from over 3,000 miles away. Yet she stayed steady and her friends stayed by her side as she filed a report with the NYC police and did all the trivial and complicated details involved in losing one's identify and money. Two years later we were in New York, signing a contract with an agent for a book about this journey, not twenty feet from where she had called me. Sometimes you just have to believe that there is a bigger plan for each of us. I have said to Linea so many times, "Trust the Universe." Even times when I didn't have much faith left myself but somehow I still had a tiny speck of curiousity and hope about what might come next. Sometimes I just had to believe in impossible things.

While we were in NYC we made a quick trip through Central Park. We came across the beautiful bronze sculpture of Alice in Wonderland, commissioned by George Delacorte and unveiled in 1959. Linea has always loved Alice in Wonderland. For about two months around age five she would only answer to "Alice". She knew most of the lines from the 1985 movie.

Alice laughed. "There's no use trying, "she said. "One can't believe impossible things."

"I daresay you haven't had much practice," said the Queen. "When I was your age, I always did it for half-an-hour a day. Why, sometimes I've believed as many as six impossible things before breakfast" (Through the Looking Glass, Lewis Carroll, 1865).

Karma? Serendipity? I never want to quit believing in impossible things.

New York City

Wow! New York City is an awesome place. Yes, true, I have never been there and was thoroughly immersed in the adjectives that everyone uses to describe this city. Huge, busy, crazy (cab drivers), crowded, anything you could want in food, shopping, sightseeing, ambience, culture (or lack thereof), ethnicity, music, etc. etc. etc. I loved it. Although this was a short visit the people that we had contact with were helpful and kind and certainly nothing like the stereotype of the New Yorker. (Speaking of stereotypes not everyone in Seattle necessarily wears Birkenstocks, drinks Starbucks and/or holds in their emotions). Anyway, I digress. We went to NYC to meet with our agent. Linea and I have written a book together and we are in the throes of getting this published (http://www.lineacinda.com/). Another step forward in this effort!

Less than five years ago we all supported Linea's dream to finish a degree in music performance and end up in New York. "Waiting tables while I tried to get music gigs," said Linea. Then she spiraled and crashed into a bone breaking depression that involved hospitalizations, medications, treatments beyond our comprehension and a diagnosis of bipolar disorder. With a big, wide and unpredictable detour she did not end up in New York in the music world. But she was in New York as we spent time with our agent in her office on Union Square discussing the publication of our book. Life is so mind boggling at times.