On the Ropes

Linea and I just returned from presenting at the Wisconsin State Transition Conference. We shared information about bipolar and the issues around transitioning from high school to post-high school for young people with mental health conditions. Although I have presented for many years to many audiences presenting from a personal perspective is different...and scary. We are providing information and research but also a very personal story. The participants at the conference, held at Wisconsin Dells, could not have been more receptive and supportive. It is all worth it when we hear from people that have also been diagnosed with bipolar or have family members that have and are inspired, even in a small way, by our story. Thank you, Wisconsin, for your warm welcome! Let’s get rid of the stigma and prepare young people to advocate for their needs and be proud of their strengths. Let's make sure that there are services and support for young people when they turn 18 and may not be under their parents' health care. But, I learned even more than those that came to our presentation.

See, I am afraid of high places. My palms sweat simply watching a movie with the actors dangling even 20 feet above the ground. I am terrified when my feet are off the ground. It doesn’t matter if my brain tells me I can’t possibly fall. I did something highly unusual at Kalahari Resort where the conference was held. The first night we were there I had watched Linea and her dad climb all over the ropes course. I took pictures and turned away to catch my breath when they walked across the skinny planks and ropes. But then, I, most fearful of high places, managed to walk across (and back through) the ropes course. Yes, I know I was there for professional reasons but I did it. Know why? Prior to this huge event (ropes course!) we had a small dinner in the bar at the resort where a band, including special education teachers, was playing to the great delight of the conference participants. Wisconsin is different from Washington State in that you don’t have to be 21 to be in a bar with a band. Mingled with all the teachers and school psychologists and DVR personnel were young people with disabilities, also attending the conference. As I watched them dance I was so inspired. The kid in a wheel chair that bumped down the stairs on his own and backwards to get out on the dance floor so he could spin with the little blond girl…the young man in his Packer’s jersey that was dancing away very happily all on his own…the young man dancing with two girls at once and did it so gracefully. You all encouraged and touched me in a way that caused me to say, “I’ll do the ropes course.” And I did.

Linea's blog

My daughter Linea wrote so eloquently in her blog (http://www.lineajohnson.blogspot.com/) about depression and shared a beautiful poem by Jane Kenyon. It resonated in my heart so strongly. As parents we also worried and dreaded and tried to intercept any down draft creeping in to grab our daughter. She and I went through times when I would wonder (and ask) if something was coming back. As an intuitive mom I had been so right in the past but as she moved toward recovery my worrying intuits would become hers and would do neither of us any good. As I wondered and checked to see if she was "okay" she wondered and worried that maybe I saw something that she hadn't.

I am very certain that she can handle anything that will come up and that she wants to live a safe and healthy life, doing all she can to make that happen. When I have little fingers of worry trying to sneak past my resolve to trust I remind myself that this is my own and familiar feelings of fear and worry not a sign of Linea’s current health. My anxieties about her were the adrenalin I needed to keep me going when I had to. Now I am finally in the same space that Linea’s writes about: should it return in full force rather than the ebbs and flows she now knows I trust that she can “handle it” and so can I.

Her dad and I talked about how frightening it was when we felt we were on the edge of something bad happening yet how much more terrifying it is for the person in the midst of the battle. Someone in a flare-up of a mental health condition may not have the ability to make the call for help. Families or friends may need to step in. Figuring out how to step back out is sometimes a tricky dance. Linea has come so far since her hospitalizations and been through so much but she is now managing her own life.

My job is to love and support her as she leads the way.


Painting by Jordan Swain, "You have my sympathies" http://www.jordanswain.com/

Prince Thomas

This baby boy was born to my oldest daughter and her husband in February almost one year ago. Our first grandson, the first great-grandson, the first nephew, the first great and great-great nephew...and the first boy in a family of mostly girls and women. You see why I call him the prince. What a wonder to have a new baby in the family! How incredible to see your daughter and son-in-law become amazing parents...overnight!! I know he has turned their lives upside down and inside out in a good way and he gives us all cause to think about family. How we live and interact with each other as a family and support his growth will make a difference in the man that he will someday become. I wish for us all love and patience and kindness as well as joy and silliness and play for our own lives and for his.

Hand Dancer

I am not as serious in my day to day life as the first two postings on my blog might suggest. I listed "hand dancer" as a special talent on our website. You know what hand dancing is, right? My daughters are particularly attuned to this talent given I have practiced it throughout their lifetimes. The females in my family love to dance. If you are in a place where full body dancing is impossible hand dancing suffices. Hand dancing is something that is dependent on the music. Listen to "Steppin' Razor" (Chrissie Hynde) from the Breathing Fire album. Can you resist hand dancing to reggae? How about Allen Toussaint's "Soul Sister"?

Although I have followed the new laws regarding handless cell phone use I am unable to give up driving-while-hand-dancing. Sometimes I need to keep it below the view of the person in the next car. But hand dancing is portable. You can do it almost anywhere and in as big or as small of steps as you want. One can even finger dance if need be.

Of course full body dancing is always best. As low and tired as I can be, dancing revives me. What could be better than a two-daughter dance to Cyndy Lauper's "Girls Just Want to Have Fun" with grandbaby Thomas sitting on the floor bouncing to his own rhythm? It is time to let my dancer come out in public. If you have a hidden hand dancer somewhere inside, don't hesitate to bring him or her out. I would love to look at the car stopped next to me in traffic and see some awesome new moves. Don't we all have that silly and fun side down there somewhere?

What am I doing?

I have moments of panic in the middle of the night thinking about "going public" with the story of my youngest daughter's illness. We are finishing a book together that is a very candid account of two years of hell. Linea's writing was honest from the beginning. Mine became so as I continued to write, rewrite and edit. Each layer exposed more of my truth (and my tears) as the process ever so slowly began to heal both of us in ways that are still somewhat of a mystery. I am sure that there are people who will wonder why we would ever do this. Linea’s dad (husband Curt) asked those questions. When we started putting our writing together and the idea of a book started to form he worried that this work would bring up painful memories best laid to rest. He questioned why we would want to revisit events that were very frightening to all of us. He wondered if by going public we would portray Linea as “the-girl-with-bipolar”. Through all of this he continuously said that he would support us in whatever we decided to do but he was very concerned. And, in the middle of the night, so was I.

The initial purpose of writing a book together was to offer an inside look at bipolar from our very personal experiences; a story of a young woman struggling through all the frightening symptoms (symptoms seems like much too benign of a word!) and her mother’s and families support, worry, love and anguish. The goal was to give voice to the many, many patients and families we met who were unable or unwilling to share their own story. We wanted to reduce stigma and increase compassion and care. But in the process of writing together, something unexpected happened for both of us and our family. We became stronger. I became stronger revisiting this story, thinking and writing about it from a deeper level. In my most terrifying moments I had held the pain at bay so that I could get through the day. By telling the story I faced this fear and pain and in many ways accepted it. I am not quite there yet when Linea says, “I wouldn’t want to change what happened to me.” I would give anything for her not to have gone through the pain that she did but I do know that our family is at a place of deeper relationships, trust and love after what we have been through. We hear from so many people who tell us, “…thanks to you and your daughter for your courage, thoughtfulness about helping others, and willingness to reduce stigma. You give the rest of us the courage to do the same.” But it is I and my family that has benefitted from telling our story. The truth will set you (me) free. And, as per Linea's blog, bipolar is an added wisdom. I want all my life experiences to add to my wisdom.

New Year 2009

It is a new year. I always have a sense of excitement and potential as our earth enters a new stage and, like many of you, feel a “beginning”. 2008 was a year of relative calm compared to the previous three. In December of 2005 I came home to find that our house had been broken into, dumped upside down and the possessions that were most important to me were stuffed into my own pillowcase and taken away, never to be seen again. Although none of my jewelry was of immense value it represented years and years of gifts and mementos from my loved ones and commemoratives of special occasions and journeys near and far.

I thought that 2006 would be a better year and the beginning of a new collection of memories and perhaps jewelry. But in February we brought our daughter Linea home from college in Chicago, barely hanging on with a severe depression. She was soon hospitalized in a psychiatric unit of Harborview Hospital and diagnosed with bipolar disorder. Our lives all turned upside down as she fought through the depression, suicide ideology, mania and, as she describes it, “when I went crazy”. By December of 2006 Linea was back in Chicago, managing to stay in her music program but barely hanging on as I tried desperately to find a way to keep her safe and tried to come to terms with the inability to do so. By December of 2007 she was back in charge of her life and her health. I begin to breathe again.

2008 ends with many changes in our lives and, a little new wisdom in mine. My insight came while listening to two wise women from diverse and far corners of the world. I was honored to attend two days of events with the 2008 Opus Prize recipients. The Opus Prize, hosted this year by Seattle University, was established to “honor the innovative humanitarian work of those dedicated to helping transform the lives of people facing a future with little or no hope, and recognizes and supports the winners' extraordinary life commitment to life-changing work.” There is a worldwide search to identify three amazing people to honor with $1 million and two $100,000.00 awards to further their work. All three recipients were inspirational beyond words but it was the two women who fell into my heart, dropping words into my soul that I will not soon forget. Their words became my necklaces and bracelets for 2008, available to pull out, touch and remember an incredible experience.

Krishnammal Jagannathan from Tamil Nadu, India, and Marguerite “Maggy” Barankitse, from eastern Burundi, Africa, both spoke from a place of peace, love and acceptance. Both had experienced horrors against humankind and continue on a daily and hourly basis to battle injustice beyond anything I can comprehend. Krishnammal, an eighty-two year old, 4’7” devout Hindu has spent her entire life working for a humane and just life for the Dalits, members of India’s the lowest caste and some of its poorest residents, previously known as “untouchables”. Krishnammal lives with the Dalits and owns nothing herself. She told us, “When you have too many things you must spend time caring for them.” She has chosen to spend her time caring for the “unique spirit, the unique soul, and the unique divine light” that is in all of us and makes us all, on the inside, alike rather than different. She does not worry about tomorrow. Marguerite, a bubbling, smiling fifty-four year old woman known as “Maggy” said to the room full of Seattle University faculty, “Why are you all so worried about the tomorrows? You must know that you have no control.” She laughed and went on to tell us that only by living every day with love and belief and hope do we have any possibility of affecting tomorrow.

I have held tightly to what I hoped was an ability to control my daughter’s future. I have been as vigilant as a mother can possibly be with the sole purpose of not losing her. I will always be ready and available to support her (and her sister and my husband and my grandson and my family and on it goes) yet I will wear this new bracelet given to me in the words of Maggie and Krishnammal…to live and love today. It is the only way to influence tomorrow.

To see the videos of Krishnammal Jagannathan and Marguerite “Maggy” Barankitse go to http://www.seattleu.edu/opusprize/recipients_marguerite.asp. The videos are a little difficult to find. These are located about halfway down the right hand side of the page for each recipient under “Learn More About” and the Opus Prize logo. Inspiring for a New Year!



Maggy and one of her many children