Brave souls change hearts and minds!

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Photo: “This is My Brave” cast in Wheeling, West Virginia 

There’s a special feeling when we can be a part of something far bigger than we could ever accomplish alone.  This is my overwhelming feeling of having participated in Youth Services System and NAMI Greater Wheeling’s “This is My Brave Show,” which was held last night at the historic Capitol Theatre in Wheeling.

Audience photo

Photo:  The Experience Church Worship Team & Audience

If you aren’t familiar with “This is My Brave” let me shed some light on it for you.  It’s a national non-profit organization co-founded by the amazing Jennifer Marshall.  The purpose of the show is to allow those who live with mental health conditions (mental illness & substance use disorders) to share their stories through creative expression-poetry, original music, essay.  The intent is to impact the stigma of mental illness through story telling.

The sixteen cast members in our show inspired the audience and made a lasting impression on all those who attended.  Those who shared struggle with and persevere daily through challenges related to depression, anxiety, panic attacks, schizophrenia, bipolar disorder, binge eating disorder, suicide attempts and alcoholism.  Our show had an added bonus with the Experience Church Worship Team (aka-the band), kicking off the show with their inspiring and impactful musical talents.

The audience feedback has been nothing but positive.

Many people have said the IQ on that stage was beyond impressive.  Translation – people with mental illness can be smart.  Multiple people said, “it was fascinating to see the broad range of socio-economic levels and diversity of those impacted by mental illness.  Translation – mental illness does not discriminate.   One gentleman said, “I’m not affected by mental illness and I never realized what people go through.  This show helped me understand what others deal with.  I’m so grateful to be here tonight.”

And…the overwhelming comment by numerous people, “This show is inspiring.”

This morning I received this amazing quote from one of our cast members, Mr. Bill Hogan.  Bill writes,

“I have been involved in a bunch of stuff in my almost 90 years but never have I been so “electrified” by a group or an event as I was last night.  I love the word mystery and last night the wonder of it all, that unidentifiable power that charged the people on the stage as a group and as individuals was wonderful and gave everyone in that theater, on stage and off , a sense of joyful peace.  Everything was lined up the way it is supposed to be.
I am thinking of a quote  by W.B. Yeats  “ Go forth teller of tales. And seize whatever prey your heart desires.  Have no fear. Everything exists.  And everything is
True. And the earth is but dust under our feet.”  I am truly blessed to have been fortunate enough to have been part of a great happening.”

And that my friends sums up my feelings of being a part of something greater than myself.  Being part of a movement to shed light on mental illness, one person and one story at a time.  As Jennifer Marshall says, “Storytelling saves lives!”  Indeed it does.

Jennifer Marshall and Cast Photo:  Jennifer Marshall speaking to the cast of “This is My Brave” Wheeling, West Virginia

I’m Mentally Ill But Don’t Pity Me

I see you there trying not to stare at me. When I glance at you your eyes quickly dart away. You pass me by and are afraid to say “hello,” out of fear as if what I have may be contagious. When you do make eye contact you search my eyes to see if I am “sane.” You are one of those people who have seen me in my worst moments.

Don’t pity me for life could be so much worse if I lived during the time when the mentally ill were institutionalized. I may have been placed in an ice bath or had a lobotomy. You may have left me restrained for days on end. I could have been deprived of my most basic human needs. In your effort to “treat” me I could have been sprayed with a hose.

You wonder why we fear the mental health system. You wonder why we mistrust and question everything they tell us is good for us. We are vulnerable because we need help, yet often don’t know where to turn.

Don’t pity me for life could be so much worse. We hear the stories about psychiatric institutions closing and we see the remnants of old historic asylums turning into haunted houses. Is there any wonder why? Human suffering cries out from the lonely graves of those who came before us and weathered the storm of archaic psychiatric practices.

Yes the mentally ill have been a persecuted group for hundreds of years. But things have gotten better—haven’t they?

Don’t pity me for life could be so much worse. It’s hard to look at me now that I am mentally ill. I’m not welcome in your group anymore. I don’t fit with your perfect lives for mine is rather messy. But with these words I write I have a voice, I have a chance to make a difference.

Don’t pity me for life could be so much worse. Yet you look at me with such disgust and use my illness to make jokes. I am a human being who happened to inherit a mental illness. Yet I refuse to sit quietly in my chair.

I want you to stand up for me and fight for better treatment. I want you to hold my hand and walk with me in my journey for a good life. I want you to understand my pain and suffering, but take note of me as a survivor. I am not a mere shadow from the past; I am not someone you can just push aside.

Don’t pity me for life could be so much worse. If you don’t do anything just say a little prayer. I am here to fight for a better tomorrow and I am not going away.

Don’t pity me because I believe life can be so much better.

 

Mental Illness Makes You Tough!

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Living with a severe mental illness is not for the faint of heart. You really have to be tough “minded” to handle the many trials and tribulations we face. Consider being able to successfully utilize your mind to climb the corporate ladder only to have that same mind fail you by losing touch with reality.

Imagine having your sister make her way through college and graduate with honors. Then a few years later imagine getting a call from a social worker, four hundred miles away, telling you your sister was placed in the psychiatric ward for evaluation. Forty plus hospitalizations later and an immeasurable amount of heart ache for everyone involved just can’t be described with words.

Imagine being a freshman in college and learning your mother had a manic episode rolled into psychosis and jumped from a 30-foot balcony in her confusion.   Imagine the pain, despair, and confusion those emotions can be when you are living through it.

Some people would say they just “can’t imagine.” Besides who would want to put themselves in your shoes with such human tragedy. These are the stories that never make it to the vernacular of the general population. They have no reason or purpose for hearing or listening to some of the challenges those of us touched by mental illness have had to deal with. I’ve only briefly scratched the surface of my own personal examples. Sometimes they are too painful for even me to recall.

But this brings me to my point, you have to be pretty darn tough to pick up the pieces and move on from life’s disruptions mental illness causes. If you suffer from a mental illness, often a chronic disorder, you will have to learn how to live with it your entire life.  If someone you love gets diagnosed, you will have to learn how best to support him or her.   And the bottom-line is you learn how important it is for life to go on because it does with or without your active participation.

When I reflect back upon my numerous lived experiences with mental illness I think about how I managed to emotionally cope and deal with these major issues often without the help or support of other people. I was expected to accept the situation, cope with it, put on a happy face and move on.

It reminds me of a time when I was working as a sales representative for a Fortune 500 company.  I had just received a call in the morning that my mother had been taken to the psychiatric hospital and admitted. I was still relatively young and deeply affected by her hospitalizations. As a matter of fact when I picked up my manager at the airport I was holding back the tears.

We drove a little while in silence, until she finally asked me what was wrong. I debated for a moment but then I told her what had happened to my mother. She looked at me and said, “Well I guess you’ll just have to focus extra hard on selling your products today.” It was like someone had taken a knife and stabbed me in the heart.

I guess all the years of living with mental illness have made me a stronger person. It has also exposed me to the ugliness of stigma. The very idea that people can be so cold and callous about brain disorders and all the situations we have to deal with.

But as I write these words I truly believe the next several years are going to whiled a wealth of information about serious mental illness. I think we will see attitudes begin to change and people will start getting a clue about what we have to deal with on a daily basis.

I hope some people will finally realize how tough you have to be to live with mental illness. I can’t wait for that day to come and I can’t guarantee I won’t tell people “I told you so.”

Disclosing a Mental Illness

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Disclosing you have a mental illness is a very tough decision. There are so many issues associated with telling even your friends and family, much less being open about your illness in a public forum, like social media.  From my viewpoint if we are to actively change the stigma associated with mental illness it is important for those of us who live with mental illness to feel comfortable in disclosing it.

I recently read an acticle about disclosing your mental illness diagnosis on-line. The author was an advocate, but chooses to blog and advocate anonymously. I have no problem with her choice, but I wonder about the impact you can make as an advocate living anonymously? Isn’t it important to demonstrate that many people living with serious mental illness can recover and contribute to society?

When writing my blog I decided it was important for me to feel comfortable being completely open and honest about who I am. I wanted people to know I was not ashamed for having a mental illness. In fact, I have worked very hard to live my life without living in shame for an illness I did not ask for and believe is no different than a physical illness from that standpoint.

But then I started thinking about all the reasons why people could judge me and look at me differently because I live with bipolar disorder. I thought about the stigma associated with the illness and how people may judge my competency without ever talking to me or reading anything I may write. I began to fall into the trap of worrying about things that I cannot control.  I worked through my fears and doubts and moved forward with disclosure in a well thought out way.

For all the reasons why you should never disclose your mental health issues, there are equally a number of reasons why it is a good idea for at least people close to you to know. I was always afraid people would not be my friend if they knew about my condition. The truth is some people didn’t want to be friends with someone who had a mental illness, as if I had some kind of contagious disease. But others seemed to accept it and offer love and support.

After deciding I was going to live my dream and become a Mental Health Advocate, I put a great deal of thought into disclosing my illness. My focus is on raising awareness and creating opportunities to have a dialogue about mental illness so that others may understand. I wanted to jump on the band wagon and help eliminate stigma. I really felt like if people knew I was an Olympic Athlete who was affected by a mental illness they could see that it does not matter what your socio-economic status is or what parade you may have walked in, mental illness can affect anyone. It also helps other people who are suffering with the illness to know someone else who is living with it.

So—for all these reasons I felt like it was a good idea to disclose my illness. I let my Facebook friends know the other day on a status update that I was a Mental Health Advocate, writer and speaker and I lived with Bipolar Disorder. The support I received touched my heart and gave me more strength to keep on walking down the disclosure path.

I can’t tell you what is right for you, but I can say I feel empowered to share my journey. And I am glad I no longer hang my head in fear or shame.

Mental Illness and Surviving the Memory Tides

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I think it’s fair to say those of us with mental illness “suffer.” We often experience pain and loss that is incredibly intense and cannot be put into enough words to describe how it actually feels. The cruel thing is we not only suffer with an illness we also suffer when we move along the process in recovery. Additionally, we are usually expected to suffer in silence because no one else can see our illness in x-rays or test results. They just don’t understand what they cannot see.

It has taken me a long time to understand the trials and tribulations of my own struggles with bipolar disorder. Sometimes I feel like I have been sitting in the middle of the ocean and for some reason I survived the “memory tides.” The memory tides hit you with high tides and you nearly drown in snapshots of your mental health journey. Then, for some unknown reason low tide hits and you get bits and pieces of the past without getting knocked over.

There have been times in my own healing process where I have literally gone back to bed because I have been knocked over by such intense memories it wore me out. I would just lie there in bed and let my mind take me wherever it needed to go. In the moment, I recognized I was processing the past and for some reason it was a necessary evil that I had to experience.

I have read that hospitalizations can be traumatizing. Depending on what happened in my hospital stay I would have to agree with that, even though I believe if you need hospitalization it is a safe place to go. But I can say that in my memory tides I have viewed my hospital stays in photographic frames. Play by play I see the faces of the doctors and nurses who cared for me.

Sometimes the memories are so intense I can recall the not so nice things and good things a healthcare provider may have said to me.   But worse than what people said is what they did when I was experiencing a psychotic episode. I have seen the paint peeled walls of seclusion rooms and felt the tight leather restraints around my wrist and ankles. I have had to learn how to cope with the pain of those memories as well.

More than 15 years ago, I was in a small community hospital and  was left in restraints for 16 hours. I was asleep almost the entire time, only waking up to realize I was tied to a bed. They finally let me up when I needed to use the restroom. I felt mistreated in that situation and it took me a long time to heal from it.

So when people say the word “suffer” to me I really get what that means. These experiences drive me to advocate for mental illness, because I don’t want other people to suffer as much or more than I did. In the meantime when the memory tides come I just sit back and brace myself for what I am about to see. Everyday gets better and one day I hope to replace those pictures with something much more pleasant.
 

 

Take the Stigma Poll

 

I am not a failure, am I?

Sometimes I Feel Like A Failure

Does having a mental illness make you feel like a failure? As much as I know I am far from a failure I still have my moments when I look at former colleagues and think, “What the heck happened to me?” Of course I know exactly what happened—mental illness dropped on my doorstep and interrupted my life, as I once knew it, but sometimes I have to remind myself of this fact.

Believing we are failures because we have a mental illness is really part of self-stigma. It’s fits right under the category of blaming ourselves for having an illness. I suppose it is in part a way to try and make some sense out of various behaviors and in an effort to take back some control over the situation we point our fingers at the person looking back at us in the mirror.

Self-Stigma: Shame & Blame

In times when I am suffering with a depressive episode I shame myself into believing it’s my fault, as if I really have any control over the illness. The shame makes the situation far worse and really adds to the bad feelings I already have about myself. I made a point to stop the shaming the last time I was sick. It’s already hard enough as it is to get well again but I learned I needed to be a better friend to myself.

Why Can’t I Be “Normal?”

If only I was normal I wouldn’t have to deal with all these things. Mental illness can take you out of mainstream society. It can interrupt your life with hospitalizations, frequent doctor visits, therapy, medication side effects, loss of work and all these things can cause a withdrawal from life. Stepping out of my daily course of living has made me feel like a complete failure. And then the voice of reason kicks in and I hear myself say, “If it weren’t for bipolar disorder life would be different.”

Finding Inspiration

I’m sure not everyone who experiences a mental illness has felt like a failure. But I am willing to bet many people have and I want to speak to those people. I want to tell them to lift up your head and hold it high; hold back your shoulders and walk with confidence; start believing you are so strong because you have faced off with adversity and you have won; you are a valuable member to the community; and you will find your way to recovery. Above all you are not a failure.

Mental illness can cause so much pain and many personal struggles. I have learned that I cannot give it any more power over me than what it deserves. I have approached it in a way that says, “I have a mental illness and it’s not my fault, and I’m going to pick up the pieces and move forward with my life. No mental illness is going to stop me from living a healthy, happy and productive life.” It’s my mantra and I believe it!

 

Mental Illness Recovery

The “Recovery Movement” in mental health has been around for several years. I have read different opinions about recovery and I think it’s important to understand what recovery actually means.

A Recovery Definition

According to the National Alliance for Mental Illness recovery is a process that includes having an initial diagnosis, learning about your illness and the treatments available, sharing information about your illness with friends and family and finally doing something to help other people with your illness. Nowhere in this definition of recovery does it talk about resuming your life where you left off before your diagnosis.

Before I read this explanation from NAMI I really thought recovery meant I could pick back up with my life as I once knew it. But realistically I had to learn that I had to accept the fact that I now had limitations I had to consider. I have heard the argument that everyone has limitations and while I agree with this I am coming from the standpoint of when you get sick and because of whatever illness you have, your life as you once knew it has changed. It has become a “life interrupted” by mental illness.

Severe Mental Illness

I will be the first one to admit I love it when I read success stories about people with bipolar disorder, schizophrenia, depression, post traumatic stress disorder or anxiety disorder (classified as severe mental illness) who are living examples of people who have been able to get out and work full time jobs. They have either gone back to work or have changed careers. I get excited thinking about the possibilities for my own life.

Overcoming Obstacles

At the same time, I have to be honest and tell you that we have tremendous hurdles in getting to this endpoint. Our disorders may go into remission but often times we still have to continue taking medications, going to the doctor and/or therapy visits, and closely monitoring our symptoms. So the most important point is that recovery in no shape or form means “healed.”   If anything it means people who have learned how to overcome many obstacles and lead a healthy, happy and productive life. I think people who are living with mental disorders have a strong inner strength. Part of recovery is being able to recognize those key strengths and use them to our advantage.

I am glad there is a recovery movement in mental health. I like the idea that younger people can be given a sense of hope that the proper treatment can help them go on to achieve their goals. But I also think it has to be tempered by the fact that severe mental illness is really difficult to manage and if you are managing it well you are a superstar in my book!

The “Hearing Voices Simulator”

On Monday Anderson Cooper from CNN interviewed Mental Health Advocate and Clinical Psychologist Pat Deegan. Pat, who also lives with schizophrenia, created a “hearing voices” simulator that Anderson experimented with. For 45 minutes one day he wore the IPOD that cranked voices into his ears. As part of the experiment he had to do puzzles and a math quiz while wearing the ear buds. If you are interested you can watch the interview with Anderson Cooper and Pat Deegan on CNN. It was fascinating to hear how much difficulty he had trying to complete tasks and it even affected him while walking down the street.

Since I have experienced a few psychotic episodes as a result of bipolar mania I was really glad to know this simulation existed. It is one thing to try and explain what “hearing voices” is like and another to have someone deal with hearing voices. I hope more people will have access to the simulator; especially people in the media who tend to cover mental illness only when a tragedy occurs.

Even though I want the media to better understand mental illness I still contend that one of the best ways to combat stigma is for those of us who live with a mental illness to continue to speak out about our experiences. Sometimes I forget that I live with and write about mental illness everyday. I have been a student of bipolar illness for the past 30 years. Not necessarily by choice but by necessity. My point is the words and their definitions come relatively easy to me.

Speaking My Truth

About a month ago I was reminded that not everyone knows or understands what a person who lives with bipolar disorder goes through. I was giving an old friend of mine a ride to the airport and he ask me why I wasn’t working in the profession I had been in for 18 years. At first I hesitated and then I decided I was going to speak my truth.

I said, “Well I’m not working in the biotech industry anymore, because when I had a bipolar depressive episode the company I was working for fired me while I was on disability leave.”

Jim replied, “That’s terrible. If you were depressed it must have been more depressing to get fired in the middle of being sick.”

“Yeah it was pretty bad. Right around Christmas time too.”

Jim looked at me and then asked, “What is bipolar disorder anyhow?

“It’s an illness where you experience extreme highs and lows and sometimes psychosis,” I was giving him the shorthand version of the illness.

“What’s psychosis?”

“Psychosis is when you see or hear things that other people don’t see or hear. Or you may get delusional believing things that are otherwise not true.”

Jim looked at me kind of strangely and then said, “Well sorry for asking so many questions I guess I just don’t understand. I’m really trying to understand.”

I was really pleased he took an interest and was willing to have a dialogue about mental illness.   I assured him it was no problem and he could ask me anything he wanted about bipolar disorder.

We rode in an awkward silence for a few minutes and then moved on to a different subject. Even though I admit feeling somewhat anxious I felt really proud of myself for having the courage to be open and honest. I figured the worst that could happen is I would lose a friend, and I already knew how to deal with that.

So I am a big proponent of more people understanding mental illness and especially showing compassion to those of us who live with it everyday. I have always been an Anderson Cooper fan, but now I like him even more. I hope he continues to do more segments on mental illness. The more people talk about it the better chance we all have in breaking down the stigma barriers.

 

 

 

Mental Illness is no “gift!”

I have heard people say having bipolar disorder was a blessing as if the positive things about me had to be related to the illness. Mental illness is no gift. I don’t think I ever sat around after having a terrible cold and said, “What a wonderful gift that I was so sick.”

I recently read a blog by Natasha Tracy, which was titled Do the mentally ill have to be extraordinary to be accepted? She makes several points about how most people with mental illness are simply average, everyday folks trying to get along in this world. Not all of us are off the chart creative artists, famous world changing researchers or Nobel Peace Prize winners. We are simply “normal” people who happen to have a mental illness.

If you think about it, it’s kind of a shame that we have to put people on a pedestal to find some kind of acceptance. I think it falls right in there under the good ole’ stigma category. If we aren’t exceptional than what is our value in society, after all we have a mental illness. Oh my, so taboo.

It makes me sad to think about how common mental illness is and how we as a culture still fail to realize this fact. Consider that according to the National Institute of Mental Health over 57 million people suffer with a diagnosable mental illness each year. I’m sure you’ve seen the statistics–about 1 in 4 Americans have a mental illness.

Mental illness is common—yes. Mental illness is a gift—far from it.

I remember a day when I went to see a new family physician. She had known me from my days as a local “famous” athlete (from a very small town). When she found out I had bipolar disorder she said, “I knew there was a reason you could make the Olympic team. It must have been all that manic energy!”

I was so stunned I didn’t know what to say. How could someone who was a doctor actually think having bipolar disorder helped me to become an Olympian? Ridiculous. If anything I had to overcome the depressive episodes in order to get myself out of bed. The last thing I would have ever thought was “how lucky am I to have depression. It’s just so great! I can’t wait for more weight gain, so I can be slower on the court.”

I’m always amazed at how people find ways to accept they have a mental illness. It is not my place to judge others, but if I am voicing my own opinion I would be hard pressed to ever find any illness as a gift. I think of things like, suffering, symptoms, a lifetime of medication, doctor visits, therapy, significant losses, and I just shake my head knowing there is no way I could ever be grateful for having bipolar disorder.

I believe accepting yourself exactly how you are is far more important than getting on the band wagon to appreciate mental illness as a gift. I accept myself for who I am and I accept that I live with a mental illness and believe that I am no lesser of a person because of it.   It took me a long time to get to this point. But nowhere along the way did I ever pay some kind of tribute to living with a disease. It’s just not logical.