BringChange2Mind

February 18, 2011

Returning

Filed under: Story — Tags: , , , , , , — Linea @ 6:12 pm

The topic of today’s blog is about returning. Many of you may have noticed that I have disappeared from the world of computers, Facebook, and blogs. For health reasons I have needed to step back and take care of myself. But now I am back. Now it is time to talk about that very tricky act of returning after a mental health leave.

The act of returning is a mixed feeling, one of excitement, one of hesitation, one of “am I ready?” and sometimes one of pride. Returning to the world, whether it is the world of work or the world of friends is something fragile, scary, and intimidating. Though sharing our story of ill health after this leave may not be necessary, taking our time and energy to reemerge  into a past existence and those necessary life responsibilities is many times essential

So how do we do this you ask? How do we re-enter the world after it has crumbled at our feet? Do you tell your story or not? Co-workers, families, and friends may have missed you, become worried, become mad. How do you take care of yourself when you are so far behind in your responsibilities but have to catch up? I don’t have the universal answer to these questions but I do have my own experience. Perhaps sharing some of my own story will inspire you to reconnect yourself. Perhaps some of it will spark your own ideas about returning that you will hopefully share in our comments section.

So here is my path…I have disappeared for almost three months due to a severe depression and eating disorder. These are things that I’ve dealt with before but still remain difficult. This disclosure is not something that everyone should have to share and when asked, a mere, “I was dealing with some health issues that I would rather not discuss, but I am slowly getting better” will suffice. This has often times been my answer, but with close family and friends it is different. For them I tell the truth. However, even your closest friends may not fully grasp your struggles. For them I simply ask for support of my decisions. They may not agree, but it is my struggle and if they care they will stand beside my choices and intelligent attempt to seek what’s best for me.

The second struggle I am experiencing is getting back to my old responsibilities and work load while simultaneously taking care of my needs. This is something I have yet to master. How do I reemerge into such a busy life? How do I step back into relationships? Even the small things, like using Facebook feel overwhelming and exhausting. This is something I have to take one step at a time. I remember years ago when I was really sick for the first time someone told me to take things one step at a time. My wise grandma clarified however, saying some days you have to take minute by minute, but some days you have to take second by second. When getting out of bed in the morning feels like a second by second job, Facebook becomes minute by minute.

I am taking my time. Returning takes a lot of breaks and lots of time to breathe, sit and meditate. Re-emerging is like stepping out of a cave into the sun. Stunning yet blinding. But slowly I am adjusting, slowing I am emerging.

How do you return after a health crisis? What tricks have you or a loved one learned?

August 1, 2010

“What’s Going On Here?!” -The Diagnosis Story

Filed under: Youth — Tags: , , , , , , , , — Linea @ 8:07 pm

“What is going on here?!?”

These were the thoughts that were rapidly firing in my head as I tried to figure out why I just couldn’t be happy and go out with my friends, or why I just couldn’t slow down and relax. For the longest time I hated myself for not being able to fix “it”.

In this society where we are told we should “just smile” or “walk in the sunshine” we assume it is our fault for not trying harder. We assume we are weak or bad for not perfectly controlling our mind and our body. We assume that there is something wrong with our personality as opposed to our chemistry. When I was first depressed to the point of suicide I got into a cycle of feeling agonizing pain of depression, exhaustion and defeat from not being able to fix it and an extreme hatred for my lack of strength and drive to pick myself up. It wasn’t until I was in the hospital on a suicide watch that I was given my first tentatPhoto by Linea Johnsonive diagnosis, Bipolar II.

Now, I grew up with a special ed teacher mom and a vocational rehabilitation counselor dad. I grew up being taught the importance of being sensitive to disabilities, the equality between every person no matter their difference and the importance of providing access and help to those with specific needs that may be different from my own. I grew up obsessively reading the DSM, diagnosing my pets with various illnesses. So when it came down to it,  I knew about disabilities. I knew all about “differences” and the normalcy of said differences. I knew all about what the word “label” meant in that community and knew that one should not use a condition to classify the whole of a person.

Maybe this is why it hurt so much when I was first diagnosed. Maybe deep down in my heart I knew just how little the rest of the world knew about disabilities. Maybe I knew the discrimination and misunderstanding that came with a mental illness label, because I found my mind screaming “No. Not me! I am not BIPOLAR. I am not like that. I’m not CRAZY”. To me, someone who found every disability as simply another thing that makes us unique and special, this diagnosis made me into something I didn’t want to be. It grouped me into a category that was “bad”. And whether or not the people in this category were “bad” or not, societies view and opinion of them was. I was not going to be in this category. I had spent my entire life trying to be perfect, flawless and this was the biggest flaw I could ever imagine.

On the other hand however, there was the small, scared, childlike voice inside of me saying, “its not my fault”. Even writing this today makes me tear up when I remember just how hard I tried to make myself feel “normal”. I tried so hard to control my emotions, but the more I tried, and the more I failed, the more I punished myself. I had two competing voices in my head, the blamer, “It’s all your fault! If you tried harder we wouldn’t be where we are today!” and the blamed, “I try so hard. I’m not good enough. I deserve this pain.” It was a dangerous downward spiral that became even worse when it moved from mental to physical hatred. Finally having a diagnosis validated those “it’s not my fault” cries of the blamed. It allowed me to start being a little bit nicer to myself.

It took me a long time to be nicer to myself, and in many ways it is still a very difficult struggle. The diagnosis, for me,  was one of the most life changing parts of my illness. It forced me to come to terms with the blamer and the blamed. It helped me realize who I really am and whether or not a label (BIPOLAR) defined me.

At first I felt that the words were etched into my forehead. I felt that with one word I was someone completely different. Years have taught me that my diagnosis can never define me. It may define some of the traits of my illness, but it will never define my exact reaction to those traits. Through my diagnosis I have been able to take the blame away and realize that this is simply something  unique about me. A blessing and a curse that makes my life slightly different from other peoples’ lives. Though the label that accompanies the diagnosis was painful, I have finally  found the most important thing of all, the map towards treatment. And with treatment lies stability.

June 27, 2010

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 75th 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.

June 9, 2010

Finding Dry Land: Linea’s Story

There was a moment in my life when I almost drowned.

Living in the largest dorm in the country with three best friends, experiencing my first serious college boyfriend, living what I thought to be the perfect life of a college kid, I couldn’t have dreamt of anything better. That is, until I turned my back to the ocean and was swiftly and dramatically pulled in by the undertow.

One moment I was there and one moment I wasn’t. It was as if I had suddenly had my brain replaced by someone weaker, angrier, sadder. I didn’t know where I was or what I had set out to do anymore. I couldn’t understand what went wrong. I couldn’t understand why I was suddenly seeing violent images every time I closed my eyes.

Though I didn’t know it, this was a dramatic and intense case of depression. I stopped eating. I broke up with the man who was, at that time, the love of my life. I stopped leaving my room. I stopped all contact with the world, and whether I pretended I was there or not, my eyes were empty.

This went on for several weeks. Floating around Chicago, the city that I had worked so hard to get to. To me this went on for a lifetime. I floated out to sea.

Then my boyfriend, who was now just a friend-friend, called my parents. He called, and just as swiftly as I was pulled under, I was pulled out.

Completely.

My dad arrived from Seattle no less than ten hours after he was called. My life, my room, and my thoughts were packed up and shipped out. Flown back to Seattle and, in my mind, never to return.

Nothing could have been more painful. Nothing could have been more dramatic to me at that point and place in my life. Nineteen years old and suddenly I was forced to leave my friends, my life, my freedom and everything that I had built within the last two years of hard-earned independence.

I arrived home tired, cold, and wet, water still in my lungs.

The next couple of years moved from an undertow to a tsunami. My mind moved quickly from a “simple” depression to a devastating suicidal obsession. Looking back I am amazed I am even here to tell my story.

In the next year and a half I spent time in hospitals for suicide prevention and for overdose recovery. I spent time in apartments, manic and drugged and depressed and dangerous. I spent so many hours feeling completely out of control of my mind and so many hours trying to fight against it with every form of self-medication and self-harm I could find that I am amazed I have the ability to form thoughts or press my fingers to these keys.

It took me a long time to come to terms with what was happening. After having a “wait and see” diagnosis of bipolar disorder II at nineteen I spent many, many months fighting the label and implications before I received my final, “for sure” diagnosis of plain old bipolar I. My months and years of fighting only made things worse and it took me a long time before I realized that if I was good to myself and my body, my bipolar would be good to me. Who knew stimulants could make you manic or alcohol could make you devastatingly depressed? Though it seems obvious, I sure didn’t.

Once I finally gave in and decided to change my life things began to turn around again. Though it took lots of self-care and finding the right doctors, counselors, and meds, my stability allowed me to live the life I had always dreamed of living. My stability was more than just taking care of myself and finding the right help however, it was also my amazing luck to have the opportunities and support network I do. It was this fact that inspired me to begin to make a difference in the mental health world.

Having spent time in the worst psych units with the saddest cases I realized that things must change. I realized that people need to talk about these things. People need to be able to talk about their thoughts, lives, and feelings. We need to be able to share our stories.

So…here I am today, graduating, speaking at conferences, in classrooms and auditoriums, writing and collaborating with mental health and education professionals, working with amazing mental health organizations, writing a book, and volunteering with BC2M. Through my experiences I have realized that I needed to make a difference, and through my opportunities I have hopefully begun to do so. I am so excited and pleased that I have the opportunity to make the differences that I am seeing.

Today I have found my way back to dry land where I can finally stand on firm ground, and it is here that I will help others do the same.

Photo by Linea Johnson

May 8, 2010

2010 Fountain House Luncheon

Photo courtesy of Leslie Barbaro

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 3rd, 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.

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