Consumer or Hero?

I just returned from the Washington State NAMI (National Alliance on Mental Illness) conference where my youngest daughter and I were honored to present to a wonderful audience of people from all over the state. Our topic was entitled, "From Trauma to Empowerment". Our audience included professionals in mental health care, family members and "consumers". Isn't that a strange word for someone who is living with a mental health condition? A consumer is someone who uses services or buys products.  So, yes, many of the people at the NAMI conference are indeed consumers. They see psychiatrists, psychologists, medical doctors, therapists, vocational rehabilitation specialists, clinicians, dietitians, etc. etc. and more etc. They purchase medications, therapy, yoga, exercise sessions and much more. But in addition to "consumer"

I would call every person with a mental health condition a hero. Personally I have witnessed most of what my daughter has gone through with her diagnosis and treatment of bipolar disorder. As her mom, I, too, have been "brave" but nothing close to what is called for from those in the trenches of mental illnesses. I spoke with so many people at the conference for whom each and every day takes the utmost strength and courage to move through it and forward to the hope and possibility of recovery. These heroes include the R.N. who has struggled for the last three years to treat a severe and debilitating depression yet managed to get herself across the state to attend this important conference. It includes the man who has moved into stability, helping others with their own illnesses. He achieved stability, finally, after years of attacks from schizophrenia, forcing him into the fog of a broken mind and without the ability to live the life he has today. The heroes include the people who were not there, but represented by loving family members. These people struggle through each day in a treatment facility, very aware of the pain and anguish of illnesses that knock one off center and force a tenacity of spirit that most of us have never known.

When an illness strikes the body we muster our forces to manage it. We read and study and ask questions and find support groups. When mental illness strikes, the attack on the brain may not allow for the person to put together a "wellness plan". It may only be possible to make it through one day at a time. Bravery. Courage. And, once a person is approaching some stability, they must continue with this amazing strength to continue treatment, stay steady and fight each day to be well. Most of the people at the NAMI conference are not only in this fight for themselves but for others. Each day they live as heroes, in their own lives and for other individuals and society as a whole. If you aren't aware of the work that NAMI does consider joining, volunteering and/or donating. I cannot cheer loudly enough for the heroes in this battle!

A Conversation with Cinda and Linea, Brought to You by CABF

Linea and I were honored to participate in one of the podcasts on Flipswitch. Flipswitch is for teens and young adults and addresses living well with mood disorders. It is one of the many resources offered by our friends, the Child and Adolescent Bipolar Foundation (CABF). You can check it out at the "Interview with Linea and Cinda".

Each week, the Flipswitch crew takes on a 'piece' of the mood disorder 'puzzle'. Researchers, celebrities, artists, moms, and teens share their perspectives in the interview portion of the show. Click here to subscibe to the podcast. I hope you enjoy this!

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)

Happy Summer!

It is summer and I don't want to miss a single sunny day, warm night under the stars, fresh raspberries and peaches, salmon on the grill, or chocolate ice cream. I am still reeling (can you BELIEVE it!!??) when I remember that we just sold a book to a national publisher. I have finished summer quarter and am now writing grants and preparing for presentations this summer and early fall. But this darling boy reminds me to live in the moment. I don't want these precious warm months to slip away. It is time to replenish. Soon enough it will be rainy and dark at 6:00. Fall quarter will begin, students will return, and editing of the book will be on-going. Find a moment to enjoy these beloved summer months. Look into these eyes. Is this not the secret to happiness?

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.....

Empowerment!

Self-determination is incredibly important for the success of children and adolescents with or without disabilities as they move into adult life. I like this defination, "the ability to identify and achieve goals based on a foundation of knowing and valuing oneself" (Field & Hoffman). I teach my graduate students the importance of self-determination but these last few months I have been thinking about the next step beyond self-determination: empowerment and advocacy skills. These skills can be used to change inequalities, stigma and misconceptions about disabilities but also can be extremely positive for the individual. I have watched this occur over the last four years with my daughter Linea. From my perspective, the first part of her journey was to accept and acknowlege her diagnosis of bipolar disorder with a few steps forward and some backwards as she learned to manage a chronic illness. She has written about this journey in her blog. Eventually and sometimes simultaneously, she began to know and value herself in this new reality. She moved toward identifying and achieving her goals which included a strong commitment toward social justice. The memories of the inequalities we witnessed in the mental health system strongly influenced her. It has been amazing to watch her find her voice and to use her power. As she joins a large and national movement to eliminate the stigma of mental illness and assure understanding, support and resources for others she has become confident and powerful yet has maintained her humility and kindness. (Check out her post as a writer on the BringChange2Mind blog.)

The National Empowerment Center actually conducted research on the definition of empowerment in the mental health world. It includes 15 qualities of empowerment. An example of just 5 of the 15 include: 1. decision making power, 2. access to information, 3. feeling part of a group, 4. changing others' perceptions of one's competency and capacity to act, and 5. change that is never ending and self-initiated. Linea demonstrates all 15 of the qualities defined in this research. I am not sure how she moved from the initial diagnosis to empowerment. It is certainly a developmental process and support, resources, opportunities and her own temperaments and brillliance likely figure into this. Although not everyone has these opportunities I do believe we should ensure that all of our young people (and others) have the opportunity to be not only self-determined but empowered within their own lives and in their communities. This occurs through small, individual changes with a big impact on the world at large!