Jessie Close: A Late-Life Diagnosis

Months ago my friend, Linea Johnson, asked me to write about how it feels to have been diagnosed with bipolar disorder so late in life.  I was 49 years old when I went to McLean Hospital near Boston and was put on several medications that finally began to bring me some relief from depression and mania.

My immediate reaction to Linea’s request was, “oh, I can write that easily and quickly!”  The opposite has been true.  When I explored my feelings about how my bipolar behavior kept me from so much, I felt such angst, such sadness, that I became overwhelmed and unable to write about it.  But I persevered.  These are not questions I hadn’t thought about over the years.  They are questions that stay with me.

Linea’s request brought a lot into focus and caused me to realize that I have spent the last seven years learning how to listen to myself.  The medications I take are an integral part of self-discovery.  I lived many years without medication, then I was put on the wrong medication, and I drank alcohol even with medications on board.  Self-discovery began happening when I finally began to feel normal: not manic, not depressed, not anything but me.  And sobriety.  Then, further down the road, I crashed up against a wall of shame and disappointment.  When I began thinking about it I realized how many careers I’d run away from, how many wonderful opportunities I had thrown away because of either being manic on the job or depressed into a stand still.  When depressed I usually quit whatever it was I was trying to do, when manic I alienated people with my loud and energetic, inappropriate self.

I walked away from a career in radio because of depression and attempted suicide.  I walked away from a possible career in television because I was too afraid that my mood would change and I’d be incapable of doing what the job called for.  I didn’t know what I was dealing with, just that I “switched”.  I ran away from a career in journalism because I drank so much one night that I didn’t show up the next morning for an important interview, with Rosalyn Carter of all people.  I was fired.  And yes, several years ago I wrote her an amends.

When I thought about the past, which I have done for years now, I suffered all that I’d done to the people I love, from affairs to pretending I was sick when hung-over or depressed.  I would see myself in my mind’s eye, see that I was a nothing, a nobody, a person deserving of contempt.  But then, because of medication, I couldn’t run away anymore.  I couldn’t lie down with shame.  I wasn’t depressed so I became productive.  I wasn’t manic and could no longer blame a happy mood or overly long work hours on mania.  I was forced to take stock of myself but it became inherently clear that I didn’t know how.

I was lost in a lifetime of conflicting reasons, moods, real sadness and clinical depression.  How was I ever going to figure out what had been real sadness, depression, real happiness, mania, and all the vagaries in between? And drinking made it all the more complicated.  I remember vividly, when I quit drinking, standing outside my house screaming “I don’t know how to be angry! I don’t know how to be sad!”   “I don’t know how to be anything!”

Even now, seven years later, I search my mind and body when I’m feeling up or down.  I search for indicators of mania or depression.  If the feeling is uncomfortable for too long I call my psychopharmacologist and we do a few tweaks on my medication.  I’m usually feeling better in a short while.

I do believe that without living so many years with untreated bipolar disorder I wouldn’t have had such a difficult time with focusing on what’s real and what isn’t.  I think all of us who suffer from bipolar disorder wonder when our mood shifts dramatically; we question whether it’s the disability or situational.  It’s taken me many years now to figure out those parameters but I’m getting pretty good at it.

What a Weekend!

“No change can happen without action.” ~ Glenn Close at the Society for Neuroscience Conference

Although this past weekend was an exciting one for many reasons, on Saturday November 13, 2010 something huge happened – a game changer, if you will.  It is something that can, and most likely will, create a future in which shame is replaced with dignity, misinformation with truth, discrimination with understanding, and isolation with community.  Can anyone guess what I’m talking about now?  If not, then you’re probably not a fan of BringChange2Mind on Facebook (which you should be), but if you can, then you’ve been paying attention to your Facebook page or reading the Huffington Post!

So, what happened this past weekend?  Well, Glenn Close – along with her sister Jessie Close and nephew, Calen Pick – were asked to open the Society for Neuroscience’s 2010 Conference as the “Dialogues Between Neuroscience and Society” keynote speakers.  At the end of their fabulous speech, Glenn, Jessie and Calen launched…(drum roll, please)…The BringChange2Mind Principles!

What are The BringChange2Mind Principles?  You can read about them here but, if you want me to quickly explain them, I guess I can do that too.  In the past, various organizations have made commitments to change their policies and behavior, which includes altering discriminatory practices in South Africa by signing the Sullivan Principles, ensuring equality for the LGBTQ community by becoming Signatories to the Equality Principles, and caring for the environment by adhering to the CERES Principles. It is in this spirit of positive change that the BringChange2Mind Principles will make a real difference for people in their families, workplaces, and communities.

After the exciting launch of The BringChange2Mind Principles Glenn, Jessie and Calen sat down for a Q+A with Dr. Michael Goldberg, President of the Society for Neuroscience, and Dr. Thomas Insel, Director of the National Institute for Mental Health.  This casual conversation focused on ways to de-stigmatize mental illness in our society, how the new principles can help fight the stigma, and the ways in which scientific research can help in this fight.  They also took questions from the audience.

The most interesting thing I’d like to point out is the fact that there seemed to be more comments than questions.  They came in the form of resounding support for Glenn, Jessie, Calen and the whole BringChange2Mind organization.  Now, I know most of you are used to getting tons of encouragement about your advocacy work from those around you, but it’s incredible to hear it from the people who are doing advocacy work from a different perspective – from people who are in the laboratories finding ways to possibly prevent mental health concerns like depression, schizophrenia, bipolar disorder, and borderline personality disorder.

Aside from the epic launch of The BringChange2Mind Principles, Glenn, Jessie and Calen also spoke on Friday night at the International Bipolar Foundation’s event, “An Evening of Change with Glenn Close & Jessie Close”.  The Close Family decided to speak from the heart on Friday night and focused on the importance of family when addressing mental illness, and their journey with BringChange2Mind.  The night ended with a “Fund-a-Need”, which helped raise money for the International Bipolar Foundation and BringChange2Mind.

Overall, the weekend was a huge success. The Close Family was able to meet incredible people ranging from the top neuroscientists to dedicated mental health advocates; they were able to connect with the individuals who they fight for on a daily basis; and, what I think is the biggest feat, Glenn, Jessie and Calen were able to launch The BringChange2Mind Principles in front of an audience of thousands of people.

Speaking of The BringChange2Mind Principles, have you taken the pledge?  If not, I encourage you all to go here and take the first step towards decreasing the stigma surrounding mental illness.

BringChange2Mind in Seattle, by Cinda Johnson

We were two moms and two adult children chatting at the dining room table after a Seattle dinner of salmon on the grill and salad. We had met each other in person less than three months before yet we were bonded as close as family. Calen and Linea talked about their experiences hospitalized because of psychiatric illnesses. They talked about their “breaks” (these weren’t school breaks!) and how it affected their relationships with their friends. Jessie and I talked about the pain, love and profound respect we experienced as we traveled with our children through their illnesses. Jessie and Linea talked about when suicide was stalking them and how they stayed healthy and stable. We talked about my brother and the others who were no longer with us. Calen connected with Linea as they discussed how sharing their stories and voices as advocates for mental health treatment and understanding had strengthened them. It was just an ordinary evening, yet profound in our shared heartache, heartbreak, recovery and thankfulness.

Linea Johnson, Cinda Johnson, Jessie Close, and Calen Pick

Calen Pick and Jessie Close were in town to present at Seattle University’s College of Education celebration of the 75^th year of educating teachers, school counselors, school psychologists, community mental health counselors, principals, superintendents and leaders in higher education. There were a few questions around campus about the connection between “celebration” and “mental illness”. Calen and Jessie spoke of their own battles with mental illness and their slow road to recovery. They shared their commitment to the very mission of Seattle University, “…empowering leaders for a just and humane world.” Yes, there were a few in the audience who looked uncomfortable as Calen described his hallucinations and Jessie her battle with alcohol in addition to her bipolar disorder. But the vast majority applauded the courage and willingness to put a face to frightening illnesses; two beautiful, wise, and “normal” (whatever that is) faces to which the audience could relate.

Mental illnesses are insidious and terrifying but also treatable, manageable and even offer opportunities to connect to others with honesty and love in ways we may have previously not been able to do. Although both Jessie and Calen and Linea and I speak to large audiences sharing our stories in order to assure understanding, resources and care for the millions of people with a mental health condition, it is the personal connections that strengthen this movement. Linea and Calen are examples of the power of young people stepping forward and changing the face and understanding of mental illness yet they are two young people in their twenties who love books and walking and music and art and deep philosophical discussions. Jessie bravely shares her own experiences struggling with bipolar disorder. Yet she and I also connect at a deep and lasting level of “mom”; mothers who will do anything possible to keep their children safe and wish with every fiber of their being for their happiness and safety.

Seattle University's 75th Anniversary Celebration

BringChange2Mind is a powerful movement with almost 13,000 Facebook fans and emails and requests for help coming in every day and from all over the nation. Requests that are responded to within 36 hours! This movement is taking hold and taking off. The conversations on Facebook are powerful, the walks across the country with our NAMI partners were life-changing for many, and the support and understanding developing within this community is awe-inspiring. Together we are an influential and significant grass-roots movement started by Glenn Close. Yes, a famous actress but also a sister who is connected to every family with a mental illness because she knows. Just like the connection around the dining room table, into the community and across the country. This BringChange2Mind community gets it. Together we can change the face of these illnesses and together we can be the leaders needed for a just and humane world for all people, particularly for those with mental illnesses.

What NAMI Walks Mean to Robin, by Robin Walker

I feel like the majority of my motherhood career has been like pushing sand against waves from the ocean, always leaving my spirit feeling washed up and wiped out. I have put in countless years trying to swoop my son under my wing to protect him from himself, his illness and the residual effects it has had on his life, it has been isolating. Many a night I collapsed in my bed with the feelings of defeat and many a morning I felt as if the very thought of getting out of bed was going to break me. It took that brokenness in me to surrender.

I attended Al-Anon for numerous years and worked the 12 steps of the program. I admitted I was powerless over alcohol – that my life had become unmanageable. I came to believe that a Power greater than myself could restore me to sanity and I sought through prayer and meditation to improve my conscious contact with God, praying only for His knowledge of His will for me and the power to carry that out. I surrendered. I experienced two alcoholics and their disease in my life, I was broken and then I surrendered.

One would think that if I could grasp the concept and understanding of AA’s 12 steps as a teenager and young adult that I could apply that to anything in my life as I matured, but somehow I lost that understanding, I lost me. I was so busy taking care of my son. I wanted to give him everything I craved as a child; acceptance, unconditional love, a sense of pride. I started at conception, talking to him inside me throughout my pregnancy. Then when he was born I would tell him daily how special and wanted he was. I have never loved anyone more than Korbin and I know never will.

So when mental illness struck I didn’t understand. I couldn’t grasp how “he didn’t feel like anyone would miss him if he wasn’t here tomorrow”. I couldn’t wrap my head around it! I told him, and showed him, how loved he was. I made that my priority in my mothering. When we hit “rock bottom” three and a half years ago it felt like another defeat and I broke….again. Korbin was going to be okay, he would continue to get treatment and gain coping skills, but this didn’t fix my brokenness. I had to claw my way up and out of the pit I was in. I needed to relearn my steps to recover and even then I didn’t feel complete.

My sense of feeling complete came on the weekend of May 8th, 2010, at the Portland, Maine NAMI walk. I had been busy with my volunteering for BC2M and advocating to end the stigma of mental illness. I was coordinating the BC2M walking teams across the USA and I felt good, empowered, and proud to be a part of such a revolutionary campaign. On May 8th I lead one of our BC2M walking teams in Portland Maine and fully grasped what I was a part of. It was the first time in 12 years that I didn’t feel isolated, it was a day I will never forget. There I was with my son in our BC2M t-shirts not feeling shame because of the illness. We were surrounded by people just like us, we were surrounded by our good friends and family. I saw BC2M shirts on others, some with diagnoses. It was so powerful to watch and experience that live. I listened to Jessie and Calen speak and there were tears in my eyes as I watched them….I felt “normal” for the first time since being a mom, I was hearing the same things I was feeling.

The next day at my sister’s house for dinner, on Mother’s Day, I let the last cat out of the bag. We shared with the last of the family, and even in-laws, about our “secret”. It was freeing and I was finally at peace about mental illness in my family. I feel like the NAMI walk weekend was my first pure and authentic step into advocacy, I was an open book, I surrendered and trusted and now I was not only talking the talk but walking the walk, literally and spiritually. I was doing good works with my advocacy before for sure, but to be transparent….that changes it. I am stronger, wiser and free!

I am grateful for this opportunity to be part of the NAMI walks and to coordinate them. I have met some great advocates and feel blessed by that. I feel blessed by the BC2M community, for because of them I am sharing this joy. To have actually experienced my own walk was life changing and rates in my top three greatest experiences of my life. I encourage everyone to join a BC2M team to feel that sense of oneness. It is refreshing and it has made my soul well.

Robin (bottom center), Korbin (bottom left) and some of the BringChange2Mind family

(Robin Walker is one of our beloved volunteers who has been working night and day to bring BC2M NAMI Walk teams to your city. To find a walk near you please visit our BC2M NAMI Walk site. Here you can join teams in your area, learn how to start your own, or donate! We thank you Robin with all of our hearts!)

2010 Fountain House Luncheon

Glenn Close, Nancy Evans, Karen Pratt, Linea Johnson

I was diagnosed with bipolar disorder at the age of nineteen. At that point in my life a diagnosis was like being given a life sentence. I felt terrified, ashamed, and most of all, utterly alone. I felt that suddenly everything was wrong with me and that I was the only one going through this. Though I had wonderfully supportive family and friends, I thought that the only person I would be able to discuss this with was myself. Just me, scared and alone, in my own head.

Since then life has changed drastically. Five years later, having been stable for the last three, I was invited to attend the Fountain House Symposium and Luncheon: Visions and Voices, Understanding and Treating Psychosis; New Research, New Hope at New York City’s Pierre Hotel. On Monday May 3^rd, almost four years to the day of my first hospitalization, I was sitting with the Close family (Glenn and Jessie Close and Calen Pick), Nancy Evans, Executive Director of BringChange2Mind, Rosalynn Carter, author, activist, and former first lady, and Kenneth Dudek, President of Fountain House. Having spent many years hiding my illness I was suddenly at a table full of friends and people who “get me”, who “get it”. I was sitting at a table full of people with much larger resumes, bigger titles, and more impressive histories, and yet because of our shared understanding of mental illness we were all equal. We all understood one another. These are people who understand what it means to be psychotic, depressed, bipolar, etc. without even asking.

The event addressed never-ending hope through education, research, and personal stories. It provided infinite hope through community, courage, and love. The event began with the Symposium in which a panel of psychiatrists discussed psychosis. On the panel were Beth Baxter, MD, Donald C. Goff, MD and Jeffrey A. Lieberman, MD. Each panelist shared their own thoughts on psychosis before the Master of Ceremonies, Consuelo Mack, asked more individualized questions. We heard about the newest discoveries in research and the importance of early diagnosis and intervention. We heard Dr. Baxter’s personal story as a psychiatrist who also has schizo-affective disorder. And we heard the importance of sharing stories and the importance of research in the battle against stigma and discrimination.

After the panel the BringChange2Mind PSA and accompanying videos were played and Glenn Close was given the 2010 Humanitarian Award. Glenn’s speech was extremely powerful as she reminded us of the importance of saying the stigmatized words in order to take away their power. For example, it is important for me to say, “I have bipolar disorder” not simply “I have a mental illness”. After a short speech Glenn asked Jessie and Calen to come to the stage to share the award. Their speeches were moving and powerful and once again reminded me that I am not alone. They reminded me that 1 in 6 people have a mental illness, yet few are willing to talk about it.

Attending the Fountain House Luncheon renewed my drive and once again inspired me to share hope for all those afraid to share their own stories. I never want another person to go through the pain of feeling alone in their illness. Things are changing and I am so lucky to have been able to see it first hand at this wonderful event. We are going to change the world.