Tuesday, February 2, 2010

Telling the Truth

     Why tell your story? I posted "my story" on this blog last Friday. Why did I wake up during the night with anxiety and worry? It is not as if I haven't shared my story before. It is not something that I have kept private. My youngest daughter, Linea, and I travel around the country presenting information about mental illness and adolescents, sharing research, best practices and resources. We share our own experiences. But something about seeng the faces of those with whom we tell our story makes a difference to me. When "my story" went out on the world-wide web I could not see the faces. I couldn't tell if there was acceptance or rejection, understanding or disdain, or a shared human-ness or a distancing. I tossed and turned. I heard the voices, "Why would you want to tell people?"
     A short recap on "the story": I was teaching a graduate class about children and adolescents with emotional and behavior disorders when Linea was "pulled out to sea". (The irony of it all!) Within that short winter quarter she was brought home from her second year in college, too ill to live 2,000 miles away and unable to continue in her studies. By the time the quarter ended she was hospitalized for a severe depression and soon diagnosed with bipolar disorder. At the time I decided to tell the truth to my students, my colleagues, my family and friends. The truth became more frightening and horrifying as the weeks and months went on. Sometimes I told the truth because I had no option other than simply disintegrating with the fear and the sorrow; with the inability to make things better. I wanted to find anyone who could fix my daughter. I wanted to share my grief and perhaps lessen it. I was unravelling. But my watchful mind was noticing the impact on others as they accompanied me on this journey in both small and large ways. There was an honesty that had perhaps not been there before. There were small changes in attitudes and there were the occasional "ah-ha's", so valued by a teacher. There were many who shared their own story or of someone whom they loved, often for the first time outside of their immediate family. In the beginning I most likely told my truth because I had no ability to do otherwise. I could not keep it hidden within me without falling apart. But as we moved forward and through this initial diagnosis and treatment Linea found stability. It was a wild and unpredictable time but finally, in fits and starts, it settled itself. (Unpredictable - What a mild word for that time of chaos and mayhem!)
     Linea and I settled into an agreement with this illness. I respected it, I hated it, I accepted it and eventually I chose to embrace the possibilities that came with it. These possibilities included joy and thankfulness for every minute and day of stability. It also deepened an honesty between Linea and me, and within our family and our friends.
     Linea and I had the wonderful opportunity to hear Kay Redfield Jamison speak about her own battle with this "insidious disease called bipolar". She noted that people are often unaware of the many who are living with mental illness and who are stable. It is much easier to keep one's story hidden when stable. It is much easier for me to put away the story of my daughter's mental health condition when she is stable. It is much easier to forget it, to pretend it is gone forever. But it does not go away. Stability is an every-single-day effort to stay healthy.
     Linea and I have spent hours discussing this and we are in agreement that we have a responsibility to share her and my story for the 1 of 6 adults and 1 of 5 young people who struggle with a mental health condition and for those who are unable to share their own story. I know many people who are not comfortable sharing such intimate information with either their closest friends, their employers or the world. I know many people who are unable to do so because they are too ill and using all their energy to stay afloat. It is okay.We are blessed with resources, knowledge, information and the ability to speak about our journey. We have a responsibility. We join BringChange2Mind, a non-profit organization created by Glenn Close, the Child and Adolescent Bipolar Foundation (CABF), Fountain House, and the International Mental Health Research Organization (IMHRO), to fight the stigma of mental illness and provide resources and hope to millions of people one story at a time. It still provokes anxiety but it is also freeing. Thank you for reading my story and allowing me to sort this out in my own mind. I would be honored to hear yours.


jdcoughlin said...

There is nothing like hearing another person's truth. Not their heroic battle, but their story, the nitty gritty bits that in one way or another we all understand. It does empower us and strengthen us when we can see that life is a journey, not always magical, for every single one of us.
PS Love the picture of you and your daughter. The both of you enjoying and sharing.

Meg said...

I love hearing your story Cinda. As you know I share my journey with my son and bp on my blog but I do it anonymously as he is a minor child and until he is 18 I feel like he is not capable of giving consent to share his story publicly. I find it so helpful to hear everyone's stories though and in your case it's so helpful to hear Linea's side as well as she is old enough to have a good grasp on what is going on with herself. Keep spreading the word :)

Amanda said...

Cinda, it was nice to hear your story. I am really good friends with Jamie, Linea's roommate while she was in Chicago, and I was able to meet Linea on a random visit to our hometown in Idaho.
In Junior High, my voice coach, family friend, and mentor had bipolar disorder. Her younger sister was one of my best friends, so even though I may not have been present for the times she was manic, or so depressed they had to take her to the hospital, I often sat and listened about those times and had to reschedule voice lessons. Eventually things got to the point where she no longer could be my voice teacher and she spent time in the hospital. At the time I didn't know all the details, but I missed having such a beautiful person in my life.

Jamie talked to me often during those days before and after Linea went home. It was a scary time for everyone, I'm sure. It is really good to know how well Linea is doing now, and I think the blog, the website, the seminars, and the book are all amazing ways to make your story into something that can help others.

Jen said...

One story at a time is how mental illness will lose its stigma, when people understand that there is no shame in this and they can be loved just as much and are just as deserving of acceptance for who they are as everybody else on our planet. The human race is getting there, with the acceptance, I think! It is people like yourself who encourage and help others realise this. Jen.

coolkid said...

2nd time lucky, i had a nice comment wrote and lost it before it posted

I love the fact that you have the courage to share your story and educate and support other people going through this

I feel that if you are mentally in the right place to open up and share that you have then realised and accepted that this is real, a fact of life and that you are recovering and moving on, you also take on the responsibility of sharing your experience so that you can help others

i too am writing my childrens story of their journey through asd, with my daughters permission

I have a neice with bipolar 2 and another neice being monitored for it also, my own daughter is a risk of developing bipolar so i am delighted to come accross a blog like this.

thank you for sharing and being so open, you are helping so many people as is your wonderful daughter

i wish you both the best of luck for your future xx

Elizabeth said...

I, too, have benefited from hearing your story and your beautiful daughter's. There is nothing more connecting than sharing one's story, nothing more healing and more strengthening. Keep telling it in your beautiful, honest and open writing and I will keep listening. Thank you so much and much strength and courage to you as you move forward.

Nancy C said...

Stories are important. They break down barriers.

It's helpful to know somebody who lived it, and your experiences are powerful tools to help and heal.

gayle said...

Our family thinks that our nephew is bp but we don't know for sure. Thank you sharing what you know so others may learn.

Katie Donohue Bevins said...

You and Linea are brave and generous to share. Your story helps others and offers hope to those who are struggling with mental illness. Your writing and your smarts have given me great comfort and hope. Thank you. Best, Katie

Carrie Wilson Link said...

I love all that you're doing!

Judith Ellis said...

Take courage, Cinda. We all have a story. Thank you for openly sharing yours. I have been blessed by it.

Corrie Howe said...

Cinda, your post really resonated with me. I sent you an email to your work address because for some reason when I send it to the other it always bounces back.

collegemom said...

It is so helpful and supportive to read someone else's story. I just put my college sophmore daughter on a plan to return to college. We had to drop everything and drive 10 hours about 15 days ago because her symptoms from her schizophrenia were so severe she could not attend classes. Thankfully her doctor was able to increase and change her medications to where her hallucinations subsided and she feels able to return to college. I had the experience of sharing what was happening with a friend. I was telling her of our scare of having the neurologist call us as we were driving up saying he wanted a second MRI because the results from her EEG at Christmas made him concerned about a brain tumor. Thank God the results were normal and she does not have a brain tumor. My friend actually said...wouldn't you rather it be a tumor instead of schizophrenia? I said "NO!!!". I would rather my daughter have schizophrenia than a brain tumor that could be cancerous, or that would leave her with a disability after surgery. We are learning to deal with the ups and downs and be happy for the good days and to realize how amazing she is to deal with her illness yet still go to college and be the amazing, talented, wonderful person she has always been and always will be.
Thank you for sharing your story and thanks to Bringchange2mind for all the support offered.

Eli said...

I could have written that. There is so much misunderstanding about mental illness, I feel if we try to hide things, we are contributing to the problem of stigmatization. I know that is not the way that everyone chooses to deal with mental illness. After much discussion with my daughter, we decided we will be incredibly truthful and even proactive in getting the truth out there and reducing stigmatization. We have had no negative repercussions so far. I feel we have done a lot to contribute to people's understanding of bipolar. When my daughter was first hospitalized, she gave consent for the hospital to come talk to her classmates. It did a lot to take away the fear and uncertainty the other girls in her school had. We think that by telling our story, maybe young people who need help will not be afraid to seek it.
So, thank you for your blog. I cried the first time I read it because it so mirrored our story and is so moving. I can't wait for the book and I would love to hear you two speak.