BringChange2Mind

August 22, 2010

Acceptance

Filed under: Youth — Tags: , , , , , — Linea @ 4:56 pm

Building off of my last post, “What’s Going on Here?!” -The Diagnosis Story, I want to talk about the next step: Acceptance.

In my experience, the next step after the diagnosis is, “No no no no no no no!” It is the three year old rolling on the floor screaming, “I don’t want this!” “Make it go away!” As a person over sixteen however, we eventually have to pick ourselves up and go on with our day.

We cannot sulk forever, nor can we scream and kick for years, but unfortunately for many (myself included) we do this anyway. For me, screaming and kicking was drinking, partying and drugs. For me, it was self-harm and anger. I tried to accept the fact that this was something that would be a part of me (not all of me) for the entirety of my life. At nineteen years old I had a lot of life to live, which felt to me like hundreds of years of dealing with this burden.

I think one thing that might have been helpful for me was a list of things to accept, or at the very least, begin to think about accepting. I don’t know if I would have accepted these at first, but had I known what to plan for it may not have felt so confusing, endless, and terrifying.

Here are the things I would have told myself to accept:Photo by Linea

  • Accept the fact that this is a part of you, but not you. This one feels impossible, but in the end it is the most important thing to come to terms with. Say, “I have (insert diagnosis here). It is there. I cannot force it to go away. We must learn to live together in harmony because it is a piece of my body that I cannot remove.”
  • Accept the fact that you have to take care of yourself. If you take care of yourself you can begin to treat this and though it will not go away, it can start to feel better. It might even be something you forget about from time to time.
  • Accept the fact that you might have to take medication. Your brain has chemicals that you cannot control by thinking. Read brain science books. Learn what is really happening in there.
  • Accept that if you take medication you may have to adjust it once, twice, or constantly. This is one I wasn’t told, and am therefore still coming to terms with. I had the right cocktail, but it didn’t work forever. Now I have to accept that I must keep working and experimenting to find the right balance again.
  • Accept that not everyone gets it. Sad I know, but some people just don’t know what depression is or OCD or bipolar or schizoaffective disorder or borderline personality disorder or any number of other mental health disorders. Some people just don’t understand why you have a hard time leaving your apartment or why you have to wash your hands another time. But coming from the optimist I try to be, I think in the end everyone wants to understand and care, even if they don’t know how. And that is something they have to accept.
  • Accept that eventually you may have to tell people. You may even have to feign courage and go for it, because, whether you want it or not, it is a part of you. It does affect your life. It does affect your relationships. This part is hard, it sucks, but you have to accept it.

This is my list of things I wish people had told me. Maybe I wish it because I am a detail-oriented, type A, “plan your life” kind of person, or maybe it is just helpful for me to think about the bigger picture. You do not have to accept all of these things at once, and I suppose you don’t have to accept all of them ever, but I have to tell you from experience, had I not accepted these, or at least thought them through, I wouldn’t be where I am today.

What are other things we can accept? Please help to start a conversation by writing some of the things you find important to accept in the comments section.

Next time…Self Advocacy!

August 5, 2010

Why I am an Advocate, by Brandon Staglin

I have schizophrenia, and sometimes I think about whether I have let my illness define my life. I work for my family’s nonprofit, International Mental Health Research Organization (IMHRO), as a mental health advocate. If you asked me when I was a kid what work I would want to do, the last thing I would have said was to take on a family enterprise. I used to value my individuality above anything else, and dreaded being corrupted by conformity. Thanks in part to my illness, my values have shifted since then.

Brandon Staglin

I had a psychotic break in 1990, the summer after my freshman year at Dartmouth College. A friend managed to get me to a psychiatry ward. At first, I could not accept that I had a mental illness. I had a life plan, to be an astronautical engineer! I would not be cut down by a schizophrenia diagnosis.

Three nights into my first hospitalization I decided I would get out of the psych ward immediately. I was unable to sleep, furious, and refused to take meds. A nurse was on her way with an injection to make me sleep. I would not let her violate my consciousness! In fact, I would just knock the syringe from her hand and walk out of the unit before she could do anything. …Of course, when I tried that, several nurses wrestled me onto a bed, strapped me down and gave me the injection.

Now I understand their perspective, but at the time I felt mistreated. Still, when I woke up the next morning I realized I needed to get better somehow and get on with my life. Hard though it was, I agreed to a treatment program.

I was able to return to college, get my engineering degree, and secure a job designing communications satellites. I kept my illness under my hat.

When I had my second psychotic episode in 1996, it became clear to me that I could no longer work as an engineer. The job was too stressful for me, I admitted, with disappointment. But, my wonderful parents offered me a position in the winery they own and run, Staglin Family Vineyard.

A few years later, a film director was interviewing our family for a wine film he was making for international release. The time came when the director asked my parents what had inspired them to start their annual fundraiser for mental health research, the Music Festival for Mental Health. I made a split-second decision. I did not want to hide my illness, such a large part of my life, any more.

“I can tell you about that.” I told him my story.

The director, a little hesitant, asked, “Do you want me to keep this out of the film?”

I blinked, and said, “No, by all means put it in!”

Although my disclosure (and our mental health advocacy) ended up on the cutting-room floor, a change had taken place in me. I volunteered to help produce the Music Festival in its next year.

I began to talk more openly about my disorder. People were interested! When asked why I was so gung ho about helping to raise awareness, I explained that mentally ill people could be misunderstood by the public. Often, even caregivers found it hard to understand their patients’ suffering. I realized as I spoke that I wanted people with mental illness to be understood, to retain their sense of self-worth. I thought then, “This is something I can help with.” When asked, I began giving interviews for local radio and TV.

The next Fall a Music Festival patron, Liz Browning, sent me a link to a Seattle Post-Intelligencer article about her son’s experience with schizophrenia. The health care system had failed to treat Marc adequately, the article reported, and after years of progress of his disease, he may have been beyond therapy. I was heartbroken for her and for Marc. This issue was much, much bigger than what I had experienced.

Since then I have met many people whose experiences with their own illnesses have inspired me. In September 2009 I appeared in the BringChange2Mind PSA. Talking with the Closes, the other principals and the people who helped to produce it showed me how much passion there is behind this cause. The momentum of that day caught me up and has never let me go.

Today, my job as communications director and blog-writer at IMHRO enables me to pursue my own passion for the cause. Has my condition defined my life? Yes, to some degree–and I like it. It has given me a new direction which I hope makes people’s lives better. And, it has led me to compassion and patience. I love my life and would live it the same way again, illness and all.

To learn more about the Staglin family and the International Mental Health Research Organization (IMHRO) please visit their homepage: http://www.imhro.org/

To watch a video clip of Brandon and his mom, Shari, sharing their story with BringChange2Mind, please visit this link: http://www.youtube.com/watch?v=Pa3CddPGD8A

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.

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