BringChange2Mind

April 8, 2011

Grief

Filed under: Story — Tags: , , — BringChange2Mind @ 1:12 pm

Today we are going to talk about grief. Not necessarily grief from the loss of a loved one, but grief of the diagnosis. In these past four months I have been trying my damnedest to be healthy and stay well. I had made sure that I was not only continuing to take my meds, but I was also maintaining healthy habits such as exercising (yoga and running), meditating, and additional stress relieving activities like my new found hobby: knitting. I have tried to be patient and kind to myself and have worked with my psychiatrist to increase and adjust medications to help me get over this bump. But as I found myself continuing to go deeper or simply stay in the “pits of despair” I found myself moving into the same mind-frame that I experienced when I was first diagnosed with bipolar. I found myself feeling, to put it simply, angsty. I found that I was reverting to the teenage-angst felt when life just doesn’t seem fair. When you realize, why me? And why now? I found myself getting angry at whoever or whatever has done this to me. And if there is no one to blame, then just why? And though I continually feel that my bipolar is part of me, though not all of me, and that I wouldn’t want to get rid of it. I simply wanted it to go away, or even a little while.

So I suppose my question to the world is, and specifically to anyone suffering from a chronic condition or disease, how do you cope and come to terms with the fact that you may continually have dips in your health, even if they continue to become increasingly easier?

I know that for me they have become easier, this is by far better than my initial diagnosis, but it is still terribly frustrating sometimes to know that I may have this occur again and again. All I know is that I will get through this and it will continue to get better, but some days, on my most 13-year old angst ridden days, I can only continue to say, this sucks.

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March 22, 2011

Keeping up with Family and Friends

Filed under: Guest Blog — Tags: , — BringChange2Mind @ 1:06 pm

I compare myself to my family members and friends all the time.  I spend many unproductive hours beating myself up because I need to rest but feel it’s a waste of time.  I feel guilty when I rest and am unable to rest because I feel I should be doing something constructive.  I should know better by now.  When I’m tired I get symptomatic.  I have bipolar disorder and I take medication for it but when I don’t rest the medication has a hard time working for me.

One of the many doctors I’ve spoken to says ‘sleep is medicine’.  I know it is but…  I know I have to take care of myself but… I’ll just finish this or I’ll just do that THEN I’ll rest.  In the meantime my symptoms raise their ugly heads.  Confusion, dizziness, nausea, feeling separate from, feeling like I’m in a fish bowl looking out are all symptoms I feel when I’m overtired.  I also have an almost overwhelming urge to flee wherever I am, to be quiet until the feelings pass.  Husband #5 found it disconcerting that I would crawl into our closet and shut down; I felt safe in the dark, on the floor, even when I was lying on shoes.  If I don’t respect the fact that I’m symptomatic I get worse and basically am not worth much to myself or anyone else.  So why is it so difficult for those of us with mental illness to take things easy?

Many of us have family members who are creative people with daunting energy.  In my family it’s my son Sander, 28, who is prolific, my sister Glenn and my powerhouse father, who died two years ago of a massive heart-attack.  I have envied those three and have watched their successes when I could barely put two sentences together (depression) or was as wild as a hare (mania).

But wishing doesn’t the person make.  I remember telling my mother that I was going to study French and flying so I could be a translator/pilot.  This was a long time before we knew I suffered from bipolar disorder.  And I told her I wanted to be a doctor like my father.  I’ll never forget her looking at me, both times, and saying, as kindly as she could, that “I don’t think that would work for you.”  I met the same discouraging attitude about many ideas I had, manic or not.  My parents knew something was wrong but didn’t know what it was.  My mother saw me go through so many cycles that she would try to shut down my ideas before I got in too deep.  Whatever it was, my mother knew my high energy would sooner than later turn into what she called ‘exhaustion’ which is what we now call depression.  We were all bewildered back then.

Now that I know what it is I’m dealing with I can approach my chosen activities and work with the humbling knowledge that I must pace myself: I must weigh what it is I’m doing with everything else I’m doing, in other words, I mustn’t overload myself.  There are few things that I dislike more than resting or putting something aside, even when I know it’s best.  When I delve into my feelings it becomes evident that I’m embarrassed to not be working myself sick.  It’s a bitter pill to swallow that others can work themselves into the ground without becoming ill, especially when they’re family members.  I’m a competitive person but competition isn’t the name of this game.  I’m certainly vain but vanity has no place in this.  Staying alive and living well is what it’s all about.  I believe that my family and friends understand more than I give them credit for.  I believe they are thankful that I have learned to pace myself and know how much I dislike limiting my workload.  It must be a relief for them.  I know it’s a relief for me.

February 2, 2011

Jessie Close: A Late-Life Diagnosis

Filed under: Guest Blog — Tags: , , , , — BringChange2Mind @ 10:29 am

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.

November 22, 2010

Food and Coping

Filed under: Story — Tags: , , , , , , — Linea @ 6:10 pm

photo by Linea JohnsonCoping with a mental illness is hard. Living with the thought that this is a life-long thing is painful. And sometimes, even when we are happy and “stable” we find ourselves trying to cope with this fact.

I am about to admit something big. I, as many of you readers know, am very open and honest with the public and even strangers, but this one is very hard for me. In my past I didn’t know what a mania was. In the depths of that hurricane, when everything was whirling around me I tried to find my own ways to cope. I found that my doctors kept giving me the wrong medications leading me to get sick or manic and I decided I would find ways to soothe it myself. So I tried alcohol. I tried drugs. I tried self-harm. And eventually I altered my relationship with food to an unhealthy place thinking that it made me feel better.

That was five years ago. But today, this month, I find myself struggling again. As you know from my last post I have hit a bump in this bipolar ride. I have at this point finally found a way out of the hurricane, but my coping habits have yet to return to normal. Today I once again find myself struggling on the line between disordered eating and an eating disorder.

Why is this the hardest thing for me to admit? Why do I hold such a stigma to this and not to my other symptoms and diagnoses? When I was young I didn’t understand eating disorders. I didn’t know that they were deeper and different things than vanity and our culture’s influence. Though these may play a part in my relationship with food it is something stronger. It is, as many people who are well-versed in ED know, much about control. Control of the changing climates of bipolar. It is also, for me, about punishment and anger. Punishment from an extreme perfectionist for not being able to “fix it” and anger for not being able to control my mood swings.

I find it very important to address eating disorders because I find these very misunderstood in our society. I feel that I am even hesitant to write about it because I still don’t fully understand the jargon, the reasons, and the power they hold. But I do find it crucial for us to have a conversation about healthy coping skills.

So here is what I am doing to try to find my way back to health: I am trying to take life one step at a time. I am trying to eat at least three meals  a day and sit with the anxiety that comes with this process. I find that even eating a slice of an apple is painful. I am trying to make a healthy schedule for my life so I can balance work and play. I am being open and honest with my family, my friends, and my medical team. I am using Cognitive Behavior Therapy (CBT) with positive self-talk and challenging the negative and illogical thoughts in my head. I am trying to breathe.

What healthy skills do you use when you feel your life is out of control? How do you take care of yourself when life is not treating you kindly?

October 26, 2010

Telling the Truth

Filed under: Story, Youth — Tags: , , , , , , , , , — Linea @ 12:00 pm

Recently I went to see my psychiatrist. I told him that I am feeling slightly moody and find myself creeping into these unintended, uncontrollable moments of frustration, hyperactivity, or utter exhaustion. We talked about the need to “tweak” my meds, and we talked about the likelihood of changing one out completely sometime in the near future.

I have been stable for a long time, aside from small yearly depressions that come around the anniversary of hospitalizations and traumatic events. This time however, it is more than a simple yearly depression, but that anxious rumbling of a depressed/hypo-manic mixed state. I don’t necessarily consider myself “unstable” but affected enough that I had to skip a couple of weeks of blog posts. Stability is really a funny thing. While I still consider myself “stable” I continue to have these little hiccups of symptoms. Moments where I would feel much better jumping on the bed for hours than I would trying to attempt even a partial night’s sleep. Moments where I feel so exhausted after having lunch with someone that I come home and pass out in seconds. Nights where I can’t help but cry myself to sleep. These things come and go, but in learning to manage these symptoms I have been able to remain steady and solid.

When I go through these hiccups and these “tweaks” in my meds I am always scared to tell people. I travel the country telling people my story,  and sharing frightening and often horrifying events but always reassuring them with the ending, “but I’m stable now”. And I am. Just maybe not perfect. And I fear telling people, “I’m great but I have been having issues with my meds”, or “I’m wonderful, but have been having small worrisome mood swings lately”, because I’m afraid they won’t get it. I’m afraid they will still be afraid for me. So I often tell them I’m fine no matter what.

As I speak and travel I meet lots of people with similar stories. And meeting people who share your story and hearing their struggles not only feels comforting as you are swiftly pulled from the aloneness of a diagnosis, but it also reminds you of all the pain you experienced. It reminds each individual of how lonely you really were and how different your life would have been had you just had this new friend with you from the beginning. It is strangely validating, empowering, and comforting, and yet, it is often painful to meet people with such similar stories of agony, near suicide, self-harm, self-medication, and more. It is beautiful because everything is suddenly okay. You have found yourself on solid ground. But you can’t help but remember how terrifying it is to dangle from the cliff. Because of this I not only have strong feelings of pain and grief, but I also worry that I will hurt these new friends by telling them my truth, either because of their own memories or because of their worries for me. I get so scared not to be “okay” after being a “poster child of wellness.”

But that’s not truly telling my story. That’s not being authentically honest.  The whole reason I speak is to let others know that they are not alone in their feelings. It is to let them know that I have some of the same worries, moods, instability, chaos and fear that they do, even if I come across as stable and put together.

These mixed emotions, the joy of finding friends with similar stories and the worry of letting them know I am not always alright reminds me to keep sharing, to keep being honest. My fear of sharing only brings me back to that place of isolation and aloneness. People should not be alone in this fight. People should not feel the need to hide when their emotions or behavior isn’t “normal”. People should not have to feel fear when divulging their truth. We need to change things now. We cannot let this continue to happen. The stigma and misunderstanding (my own included) that comes with these illnesses makes us so afraid to say, “You know, today I am NOT okay.”

We need to change things now and speak out so people do not have to be afraid. We cannot let so many of our children end up on the streets, end up incarcerated, or end up losing their lives by self-medicating because they are afraid or have been given the message that we should not talk about these things. We cannot let a treatable enemy like suicide claim so many victims because they are alone and scared. We need to talk about this. We need to change things fast. Please help us change things by sharing stories, by letting people know that they are not alone. In my mind the biggest way to fight stigma is to talk. Share your truth. We need to remind the nation that 1 in 6 adults suffers from a mental illness by sharing real stories from the heart. Please have courage, for all of us, and share your truth, whatever that may be.

Here is mine:
I am Linea. I have bipolar disorder and have been experiencing a somewhat extended hypo-manic, depressed mixed state, causing me to have to make small adjustments to my medications and it makes me anxious. However, I am completely fine. I am capable and happy doing all the work that I do because I know how to take care of myself. Things will not happen as they did in the past because I know how to handle my stress levels, how to keep myself from coping in unhealthy ways, and how to ask for help when I need it. I am stable. I have bumps. And it’s okay.

Now please tell me yours.

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

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