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.

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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

“Is bipolar disorder contagious?”

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I’m driving home from the store with my 82 year old mother and we start talking about my book, “Bipolar Disorder, My Biggest Competitor,”  In many ways the book has unleashed good ole’ Esther.  Since I wrote about some of her struggles with bipolar disorder, she has talked more about it in two weeks, than I believe I have heard in more than 30 years.

Tonight she says, “People need to understand when you’re psychotic you don’t know what you’re doing.  But people don’t understand.  They think there’s something wrong with you and that they’ll get it too if they hang around you.”  “Mmm…is bipolar disorder contagious?” I asked jokingly.  “Some people think it is.  Like you have some horrible disease and if they come around they’ll get it.”  I laughed and we continued our drive home.

Then it hit me, after 30 years my mother finally articulated how bad she felt when her relatives stopped coming around.  They literally stopped inviting her to their houses.  She became an outcast.  The “crazy” sister.  Shame on them.  It’s not like all their lives were perfect either.

So, as a family member of a loved one with mental illness, I’m quick to defend my mother and sister.  But when it comes to me living with a mental illness and becoming an outcast myself, I sort of just give everyone a pass.  I suppose it’s because for so long I felt like I caused my own suffering.  It was my fault I had those episodes.

I ask my mother, “Who was there when you went through your first tough time?”  “You were,” she answered.  “Your dad didn’t know what to think.  But he would come in the house and ask me if I was doing alright.  He didn’t understand it, but he tried.  I’ll give him that”  I smiled and said, “There were a few people who I could have thrown under the bus in my book.  They did some not so nice things.  But I wanted to take the high road.  And truthfully, I didn’t want to spend time having a pity party for myself.  My life is far too blessed to feel sorry for myself.  I am exactly where I am supposed to be.”

However, as we drove further down the road I realized Esther really did have a point.  Some people treat bipolar disorder like it’s contagious.  As if a brain disease can magically rub off.  Perhaps that’s why they stop answering calls, not returning text messages or give you all your pictures and press clippings back, as one uncle did with me.  He had become ashamed of who I was, and when I needed him most he turned his back on me.

At the end of the day I just move on and say, “I’m not crazy, just contagiously bipolar.”  Whatever that means.

 

 

I witnessed stigma in the making today.

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Today I had the opportunity to attend a lunch n’ learn on bipolar disorder.  The gentleman presenting was a clinical psychologist who I have known from being on a working group together.  He is a very nice man.  However, today I witnessed one of the things that contribute to the stigma of mental illness in an astounding way.

His talk started out very informative about bipolar disorder signs and symptoms.  He explained really well about mania, depression and everything in between.  But then the whole talk took a downward turn.  He started sharing six stories about people he had involuntarily committed.  If the story had been told from a factual standpoint on how people with bipolar disorder can put themselves at risk, I would have been fine with it.  Except the stories told were laughed at and even the audience laughed as well.  At one point a YouTube Video was shown of a man who said he was experiencing a manic episode.  It was over the top.

I guess you had to be there to really understand my perspective.  I did not want to be rude and get up and leave, so I sat through a very painful hour of stigmatizing people with mental illness as crazy, looney and psycho with no hope for recovery.  At one point I considered raising my hand and saying, “I am one of those bipolar type I patients who have recovered.  What can you say about me?”  I decided against that strategy.

What I did do is tell the organizer who joked about having a manic episode based on all the criteria he just learned that the talk needed to be more balanced.  Yes there are people with bipolar disorder who run naked in neighborhoods.  Yes there are people with bipolar disorder who are homeless.  But there is also another side.  These people are someone’s wife, husband, friend, daughter, son, brother, sister etc.  .

Rather than embarrass the speaker I decided to have a private conversation with him at the end.  I said to him, “I have bipolar disorder type I.  Did you know that?”  “No I didn’t know that,” he said rather surprised.  And then I said, “I have my own sensational stories.  But I am also an Olympian, have a master’s degree and have worked in Corporate America for many years.  And by the way, people do recover.”

I think he was shocked that I said that to him.  Of course I was very diplomatic, but it really struck a cord with me.  I will have the opportunity to speak with this audience in March.  I plan to spend a great deal of time talking about stigma.  I hope what I say will help repair some of the damage that was done today.

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.

Should mental health disorders be treated with medications?

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I did not realize it but there is a population of people out there who do not believe mental disorders are illnesses. They don’t believe in the “disease model” for mental health issues and believe people should not be treated with medications. When I heard this I wondered what makes a disorder worthy of an illness label? And why wouldn’t there be something wrong with the brain if you had a psychotic episode?

Some people actually believe a psychotic episode is a “normal” response to certain life events. They also believe most people would do better without anti-psychotics than with them on board.

And then there is the evil empire pharmaceutical industry theory, which says pharma pays big bucks for drugs to be developed and approved so they can make profits, as if the sole purpose for all the scientific work is some preconceived conspiracy. Pharmaceutical companies did not create schizophrenia or bipolar disorder. Sorry but I’m not buying this theory. They research compounds that make a difference and when they are successful they make lots of money. This is the American way. Without the profits there would probably be few life saving medications.

When I heard this view point I was a little shocked. It seems we have come so far with people understanding mental illness as an actual “illness” instead of just a state of mind and something you can control without any intervention. I suppose it really makes a difference as to what mental disorder you are talking about—but who gets to decide what is a serious mental illness that needs medication and what is a disorder that can be controlled with a behavioral modification program. Explain this to a person having a full-blown psychotic episode.

I am all for differing opinions and debates. It’s healthy discourse and keeps everyone in a position to back up what they say. But I’m really confused about why psychiatry continues to have so much controversy in utilizing treatments. I agree that not everyone who is prescribed an anti-depressant or anti-psychotic needs one, but that’s just how it is with every therapeutic class of drugs. There is always over-utilization and under-utilization of different medications.

I have suffered with bipolar disorder most of my adult life and have finally gotten to a point where the medication regimen seems to have stabilized me. I’d hate to go back off all my medication only to find myself very sick again. It’s hard enough to fight depression while trying different medications let alone stopping all medication all together. And I can’t afford to leave mania untreated because it almost always results in a psychotic episode. As far as I’m concerned psychosis is a dangerous state of mind and I don’t want to experience that again.

Just because we can’t see the broken “brain” on x-ray doesn’t mean it’s not broken. There are many diseases that we do not understand the cause. We can’t always know conclusively how a medication really works. Sometimes you have to use common sense and be okay with the unknown. Sometimes you just have to take a leap of faith and trust that people studying mental illness treatments are doing so with ethics and integrity.

 

 

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.

 

 

 

I Live with a Mental Illness…OK?

I want the day to come when it’s completely acceptable to say I live with a mental illness.  It’s ok with me that I say I live with bipolar disorder, but what about all the people out there who have preconceived notions about what bipolar disorder is?  What about those who think having a mental illness makes me “less than?”  What if I lost my job because I said I have a mental illness?  What if I was ridiculed for identifying myself with a group that is so entirely discriminated against?

Well it’s just not ok to say you have a mental illness.  It’s as if you are putting a Scarlet Letter on your forehead that opens you up to judgment and ridicule and ultimately “what will they think about me.”  Or am I being the one who is carrying self-stigma to the party?  Is the fact I know stigma exists one of the reasons why it has any power over me in the first place?

I don’t know all the answers to those questions.  What I do know is that my confidence and self-esteem have been affected because I have been sick and had to recover.  In that recovery process I have chosen to redefine my life into two separate lives—1) before the illness and 2) after the illness.  The hard part was coming to terms that my life changed so dramatically after being diagnosed with a psychiatric illness.  Even more specifically, my life did indeed change because I became ill and there is no way to sugar coat it.

As I go through the various stages of recovery and acceptance for “what is,” I often look for perspective—ways I can compare my onset of illness and the way perhaps a physical illness might have effected someone I know in a similar fashion.  I know of a man who goes to the gym I work out in and he was left partially paralyzed after a stroke.  He used to be a fitness buff and still finds the strength to come to the gym several times a week.  Even though he is physically disabled I am still amazed by his inner strength.  And yet I see the sadness in his eyes as he struggles to ride the bicycle, something that is relatively easy for me to do.  His physical struggle is obvious.  My mental struggle is something I can most often hide or at least I think I can hide.

What we have in common is the ability to remember what it was like before an illness came into our lives and changed the course of our life.  Yet I know comparing life before and after gets to a point where making comparisons are no longer helpful, they are counterproductive comparisons and only hinder recovery.  At the same time, it is helpful to be brutally honest about where you are on the road of life.  I’ve decided that it was time to reinvent myself by making new dreams and focusing on goals that I can achieve.  Basically redefining my life in the present with all my circumstances considered.

So that leads me to where I am…blogging about mental illness.  Hoping for a day it becomes socially acceptable to say “I live with a mental illness” and that does not make me any less of a person, if anything I’m a stronger person because of all my experiences.  But I’m not going to wait until someone says it’s ok to talk about it, I’m going to talk about it long before the general population agrees with me.  The truth is eliminating stigma does start with me and knowing that answers a lot of my questions.

The Importance of Stigma Busters

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It’s one thing to get diagnosed with an illness it’s another to have the fear of the diagnosis itself prevent you from seeking treatment.  The stereotypes and prejudice that exists with mental illness are deeply ingrained in our society.  I remember when I was grappling with accepting my bipolar diagnosis how I prayed to God to give me any disease but a mental illness.  My own self-stigma kept me from getting the treatment I needed and caused me to suffer far more than was necessary.

Stigma has had negative impacts in other diseases too.  Not too long ago even women who were diagnosed with breast cancer faced enormous Stigma.  Now the support for breast cancer awareness is enormous and that’s a good thing.  Maybe one day we’ll have the same kind of support and awareness for mental illness.

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Illness of any kind is difficult but when you are trying to muddle your way through understanding a complex stigmatized disease it makes the road to recovery even tougher.  It’s as if someone puts enormous barricades on a road and tells you to drive right through them to reach your destination.  And heaven knows there are enough obstacles in the pathway without adding Stigma to the mix.

Lot’s of people suffer with mental illness without getting treatment because of Stigma.  Creating awareness is one of the keys to busting the chains of Stigma.  Is there one thing you can do today to help break those chains?