Winning against bipolar disorder with my faith as my anchor

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“As I lie in my bed trying to squeeze out the suicidal thoughts, the horrific pain of being all alone without one friend in the entire world, and the mortifying realization that in that moment I couldn’t care for myself, I turned to what had always gotten me through the tough times.  I turned to my anchor, which is my faith in God.”

There are a lot of stereotypes and misunderstandings about bipolar disorder and those of us who live with it on a daily basis are subject to these misperceptions.  Just last week I was giving a talk at a conference on the stigma of mental illness and addiction.  Most of the feedback was positive, but there was one person who said, “Bipolar disorder is an excuse for bad behavior.”

What?

After speaking for an hour on stigma and sharing some very personal stories about bipolar disorder, the needle never moved in this person’s mind.  And then I realized most people have absolutely no clue what those of us who have lived a lifetime with the impact of bipolar disorder have struggled through.  I’ve never once thought bipolar disorder was an excuse for anything.  A reason, yes.  An excuse, never.

My first episode was way back in 1999.  I was a director in a corporate office with a multi-million budget to manage.  Not only did I have a manic episode, I had a psychotic episode.  I ended up in an inpatient psychiatric care facility, which made me feel crazy.  And when people questioned my views and insights, I wondered if they thought I was crazy too?

Over the next 12 years, I struggled through 10 hospitalizations, a three-week stay in jail and worst of all losing most, if not all of my friends and some family members.  No one wants to be around people who are not mentally well.  It’s just a fact.  Maybe after a first episode, people may give you the benefit of the doubt.  But when the struggle goes on, everyone including family members get worn down.

I was fortunate.  I had a few strong and tough family members who have borne witness to my entire journey.  They stood with pride when I became an Olympian.  They dealt with their own disappointment when I started to struggle with my mental health.  And they hung on to see me recover and flourish again.  They believed in me when I didn’t believe in myself.

I was also isolated for a long stretch of time.  I went weeks without having any family member in my home.  But I had two things that helped me bear the unbearable pain and suffering of relentless depression and suicidal thoughts.  I had my three dogs who I absolutely consider a gift from God.  And I also had my faith.

As I lie in my bed trying to squeeze out the suicidal thoughts, the horrific pain of being all alone without one friend in the entire world, and the mortifying realization that in that moment I couldn’t care for myself, I turned to what had always gotten me through the tough times.  I turned to my anchor, which is my faith in God.

Did prayer instantly solve my struggles?  No.  But it gave me hope.  And in those moments of struggle and despair, hope is the one thing that kept me going.  And that is why I feel anchored, even though managing bipolar disorder can wear me down.  I keep going because I’m driven by a higher power.  I’m driven to help other people.  I have found my calling.  And I am grateful to have a purpose.

If you’re struggling with a mental health condition, I can tell you the first thing you’ve got to do is work on getting stable.  If you have bipolar disorder, a treatment plan is 99.9% always going to include a medication regimen.  There’s just no and’s, if’s, but’s or reason to think you’re going to be the only person in the world who can manage a chronic, severe mental illness without medication.  If that’s your choice and it works for you – great.  But from experience I can tell you it’s not gonna work out well.

Secondly, I believe in mind, body and spirit.  When you combine getting stable with a personal recovery plan, spirituality is a big component of being well and balanced.

It helps to take small pieces of this very overwhelming journey to manage a mental illness.  And the one thing that’s required to have a healthy and happy life is a lot of hard work.

For those of you reading who have family members struggling, I just want to reach out and give you a big hug.  It’s not easy being you.  But whatever you do, don’t give up hope.  You’ve got to become the best salesperson in the world in selling to your loved one the whole idea that it’s okay to get help.  In fact, it’s a sign of strength to reach out.

Finally I want to finish by saying thank you to all my readers.  I’ve been blogging now for over four years.  Those who’ve been with me along the way know what journey it has been.  Thanks for all your support.  It matters.

Amy

 

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.

How does Orange is the New Black handle Mental Illness

If you are a Netflix viewer you may have recently watched Season 4 of Orange is the New Black and could not have missed the storylines with mental illness.  It was not a subtle portrayal.  Mental illness was everywhere.

The character who saves another inmates life was hearing voices and experiencing delusions.  They gave us the back story and she was a person with mental illness who lost her job as a journalist when her mental illness started to get worse.  Loly ends up homeless and eventually arrested for disorderly conduct.  She gets slammed on the ground by two police officers who come upon her because people in an upscale neighborhood were complaining about her being there.  The police throw her on the ground and handcuff her while calling in to dispatch how she may be “drunk” or “psychotic.”  This is how she ends up in prison.  The police officers obviously don’t have crisis intervention training nor mental heath first aid.

By the end of season four Loly gets locked up in the forensic psych unit for allegedly murdering someone.  She starts to scream and cry while the audience is shown someone in the background who is yelling and is restrained forcefully.  Everyone in the prison knows you don’t want to get sent to the “psych unit.”  It does foster a bit of the stereotypical way we view inpatient psychiatric care, then again it is a prison so the psych unit might be portrayed appropriately.

The one thing that bothered me about this scenario was the fact that she had to have a mental illness and be accused of murder.  Everything else was really handled so well.  It is likely that a consequence of untreated severe mental illness can be joblessness and homelessness.  It happens more frequently than we like to believe.  But the murder part I could do without (spoiler alert:  she actually didn’t do it but thinks she did).

Then there was the character Mr. Heely.  He is the inmate counselor who walks into a lake with the intention of taking his own life.  In just the right time he gets a phone call from work and realized Loly’s delusions about saying their was a dead man buried in the garden were actually true.  By the end of the show he is voluntarily admitting himself to inpatient psychiatric care that is actually scripted quite well.  The last season shows him sitting on his bed knitting – minus the knitting needles which they don’t have in a psych unit because people may use those to hurt themselves – the gist is right on the money.

The courage of him taking himself to the psych unit is amazing.  One of the few men on the show and he admits himself for psychiatric care…wow!  This is a little more hard to believe because it is very difficult for males to admit they have a problem let alone seek treatment.  But good for the show creators to lead us in the proper direction of how it should be done.

One of the main characters is called “Crazy Eyes.”  She actually had been doing quite well with her mental health until the last few episodes.  But as the name implies she does have a tendency to get a little “crazy.”  She gets violent after being provoked and beats someone up.  She goes into a “zombie” like trance and then has a horrible accident.  The way the character has been developed you know she is a short fuse away from having some type of tragic accident.  But she is also vulnerable and that point is made very well.

Overall, I would have to give the creators of “Orange is the New Black” an A- in trying to tackle mental illness.  They obviously put a great deal of thought into how to delicately dramatize a person’s fragile mental state.  A significant amount of time was spent teaching us about hallucinations and delusions through a character’s suffering.  I like how they did not shy away from any of it.

I can see how all of it might just be very close to reality.

 

 

 

It’s Time to Ring the Bell

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This is a Mental Health Bell:  A Symbol of Hope – which was created in 1953 made of all the chains and shackles from mental asylums in the United States.  The bell is now the symbol of the oldest mental health advocacy group – Mental Health America.

I am a person who lives with bipolar illness and I am also an activist.  I desire to be a part of social change.

There is a movement in the world of mental health awareness.  More people are beginning to come forward and own their illness publicly.  Where you see the most of this happening is with social media.  There are many twitter accounts and blogs of people who live with mental illness advocating for change.  Expressing their viewpoints openly, honestly and courageously.

But what is the change we seek?

I am interested in bringing awareness of mental health conditions and eliminating stigma so people will not feel ashamed to seek help.  I don’t want to feel patronized or discriminated against because I have publicly declared I live with a mental illness.  I chose to share my personal struggle because I wanted to help participate in social change.  I want the young people I talk too to know you can live with a severe mental illness and still be successful.

But I have to tell you even in the places where you would think pure advocates would exists stigma flows well.  There is a term people use to describe those of us who live with a mental illness it is called “consumer.”  I don’t care for consumer because it implies that I am different from everyone else.  It rings with “less than” and sort of implies I am my diagnosis.  But the word is not going away anytime soon.  And neither are prevailing attitudes about people who live with a mental illness.

Change takes time

In 1909 the first Mental Health Advocacy organization was created by a man named Clifford Beers who lived with bipolar illness.  He was hospitalized for three years and was subjected to poor treatment at the hands of his caretakers.  At one point he was placed in a straight jacket for 21 days.  He was also a profound business person on Wallstreet and a Yale graduate.  A year after he was released from the institution he started a movement that helped change lives.

Now is the time

I have discovered that now is my time to ring that bell.  With so many courageous people who have lived before me to show the way on how to become an activist, I am up for the challenge.

The time is now to join the movement.  If you are reading this blog I want to encourage you to get involved in social change.  Join an advocacy group, write a blog, tweet, form a support group, use your voice and ring that bell!

“I decided to stand on my past and look my future in the face.”  ~Clifford Beers, Founder Mental Health America

 

 

 

 

Life with Bipolar Disorder

Have you ever stopped to think what it may be like to live with bipolar disorder?  Probably not, unless you have a loved one who is impacted by it or you are personally affected.  So I want to take a few minutes to describe what living with bipolar disorder is like for me.

First of all, living with a mental illness affects your self-esteem and confidence.  There is not many things worse than getting a psychiatric diagnosis by our cultural standards. This is why I get so passionate about mental health awareness.  You cannot receive treatment for something if you don’t know what you are dealing with and yet the moment you get that “label” it can change how you think about yourself and how others see you.

Second, treatment is available and in most cases it works.  The downside is that it can take ten years to find the right combination of medications that work for each person.  Now for a moment imagine what it would be like to constantly change medications.  I believe I have taken more than 30 different meds before finally finding the right combination.  It is a long frustrating journey.

Third, medications have side effects.  It takes time and sometimes learning lessons the hard way before you understand for most people you can never stop taking medications for the remainder of your life.  No matter how many articles I have found where people say they get along great without medications, in my experience it is never an option for me not to take bipolar meds.  Even though the side effects of weight gain and slow metabolism feed into that whole idea of lack of confidence and self-esteem, it is still far better to be overweight than mentally unstable.

Finally, once you have recovered no one would ever know you live with an invisible illness.  You cannot see bipolar disorder and unless I hadn’t told the world I live with it you would never know.  This is one of the many benefits of recovering and that I can attest is something you can do!

Living with bipolar disorder is just a fact of life for me.  But the journey was long and arduous before I could get to this point.  If you are a family member of a loved one who lives with bipolar disorder keep the faith your loved one will get better.  And if you live with bipolar disorder keep on fighting it will get better.

Mental Illness A Family Disease

This past week I have come into contact with several people who have loved ones who are struggling with mental illness.  I can understand their pain because I have lived the experience myself.

I remember the day when I was 19 years old and found out my mother had almost died during a mental health crisis.  I had just arrived home from a rather tumultuous freshman year of college, my Olympic dreams nearly shattered and my mother, my biggest supporter unable to help me and in fact needed me to help her.

When someone you love has a mental health crisis you don’t have a lot of time to come up to speed on all the terminology that healthcare professionals start to throw around.  Psychosis, manic-depressive, schizophrenia, involuntary commitments, state hospital vs. private institution, etc..etc…etc.

We didn’t have the internet over thirty years ago, so I packed up my notebook and headed to the library.  (After all these years I have still kept my notes). I was on a crash course to understand a jargon that was foreign to me.  Cancer I understood.  Mental illness I could not comprehend and yet I had to find a way to help get my mother back again.

It was one of the most difficult times of my life.  People who do not have a loved one with mental illness cannot understand the enormous amount of pressure it is to keep secrets about why someone is or is not available.  In some ways it is like their lives get erased, if only temporarily.

For me in all my youthfulness, went about telling people that my mother had a mental breakdown.  Most often I got surprised and shocking looks and often a change in conversation because people did not know what to say.

The sad thing is here we are over 30 years later and things have not changed much.  We are still talking about the stigma of mental illness, our society continues to fear what they do not understand and people living with mental illness still live in secrecy and shame.  And those family members with loved ones still don’t have a basic understanding of mental illness.

The only way I know how to help with change is to talk about mental illness and continue to share my personal journey in the hopes it may help other people.  I dealt with my difficult situation the only way I knew how which was to talk about it.  It helped even if most people did not understand.

One of the most unsatisfying lessons has come full circle.  Someone who I had admired most disappointed me the most during my mother’s illness.  But sadly years later this person who showed no compassion would be struck with her own mental illness.

There is no mincing words:  mental illness is a cruel disease that affects the entire family.  The best thing we can do is be kind to one another.  You never know if your family will be affected by mental illness too.

More than a Label

Today I have reached a milestone in my recovery journey.  I no longer think of myself as mentally ill.  Oh yes, I still have to live with bipolar disorder and manage it, but I have been enjoying a period of sustainable wellness.  To be honest, I never thought this day would happen.

For several years I battled very severe depression with brief moments of manic episodes, but none that were ever enjoyable.  I fought countless days to function and wondered if I would ever become a contributing member of society again.  Well, the days have arrived.

In this recovery journey I have read numerous articles about people who got sick and then got well and moved on with their lives.  I could see it was possible, but I did not know if it would be possible for me.  But now here I am.

Because of where I have evolved too, I no longer feel the need to write about pain and sorrow.  I am not drawn to write about my past demons.  I am at peace with my past and so it shall stay there.

But what I hope to do is write about how I have recovered.  The ins and outs the ups and downs.  The journey has been nothing short of a miracle and at any time along the way I could have chosen to give up.  But…I didn’t.  That’s the biggest secret and it is obvious….you can’t give up no matter how tough it is and how much it hurts.  You must persevere and continue to expect a good outcome.

So I am beginning to live my newly created life.  Filled with dreams and possibilities and potential.  I have learned I am so much more than my diagnosis, I am truly beyond bipolar disorder.  Although there was a time in my life when it completely consumed me.  By the grace of God that time is over and that book has ended.

The new book has begun.

If you have a mental illness I want you to know that it is possible to get well.  You can have a satisfying life and contribute to your community.  Believe in the possibilities.  And most importantly don’t give up.  You may be very surprised how things turn out.