A story of bipolar disorder and courage

Courage

It takes courage to pick yourself up after any kind of loss or hardship.  But the kind of courage I’ve seen from my friend, Hunter has been filled with real live parallels and life lessons.  Hunter is a 27 year old who has bipolar disorder.  And he is currently staying in a state mental hospital as a result of a psychotic episode.

Hunter is a brilliant young man who had his first psychotic episode while he was in college at the University of Colorado.  He was quickly diagnosed with bipolar disorder, but like me and many other people, he didn’t realize how serious one must get about learning how to manage the condition.

From the time of his first episode about four years passed.  He struggled with inpatient hospital stays and never really got stabilized.  After a manic and psychotic episode Hunter had the misfortune of being arrested and charged for running into people in the drive through lane at a McDonalds.  He wasn’t thinking clearly, got scared and ran into the car in front and the car behind him.  No one was hurt.

But…

Hunter was thrust into the criminal justice system.  After nearly two years in jail his case finally made it into court.  He pled not guilty by reason of insanity and was sent to Patton State Hospital in California.  A year has already passed since he has been there.

Even though he has been through so much and doesn’t really know when he will be released, he maintains a positive attitude.  Yesterday he talked about the possibility of him getting a job in the hospital and perhaps taking a class.  Some days he finds it difficult to get out of bed and go to his video class.  He struggles with coming to terms with why he didn’t get the help he needed.  He wants to release his emotions, but he’s just been through so much it’s very difficult.

Although I haven’t been institutionalized for more than three weeks, I can relate to Hunter.  It wasn’t that many years ago that I struggled to get out of bed.  The grief process I went through over the losses I experienced was intensely consuming.  And sometimes the loss of my very promising business career and lifestyle that matched haunts me.  But it also gives me the wisdom to share in real time with Hunter authentic emotions.  It gives me the ability to simply say, “I understand.”

Experiences and stories don’t have to be the same to touch upon a deep level of compassion that exists for one another.  There is no one with bipolar disorder who has not struggled.  It’s a very difficult illness to manage.  Some people deal with it by harnessing the positive extra energy one can have while hypomanic.  Others try to make sense of their psychosis experiences.  Some people paint it as a gift.  Personally, I choose to call it a worthy opponent.  Something I must continually work at to beat.

Those of us who live with bipolar disorder all have one thing in common:  we all have the courage to get out of bed in the morning.  It gives us the ability to face the fear of experiencing sometimes disabling symptoms.  It challenges us to remake our lives and deal with disappointments.

It takes courage to not give up trying, even though it may be hard to keep on going.  Hunter is one of the most courageous people I know and one of the most important people in my life.  He encourages me, inspires me and fuels my passion for mental health advocacy.  He is my example of a person who forges ahead even though he doesn’t know what the future may hold.

I hope I can do the same thing.

“Courage is being scared to death…and saddling up anyway.”  ~John Wayne

 

 

 

 

 

 

 

 

 

 

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A Letter To All The Bipolar Warriors

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Every so often I take a look at the blogs I have written over the past four years and see which ones people view the most.  Tonight I noticed one of the most popular was “Rebuilding a Bipolar Life.”  It was written almost four years ago.  It had to do with my quest to work on my spiritual self.

Another blog that has been very popular has been “Bipolar Disorder Destroys Life and then what’s next?”  It was written a little over three years ago.  If you’ve been following my blog or Facebook page you probably know I have found my “what’s next.”

After reading the blogs and comments I’m inspired to write a letter to my fellow bipolar warriors about some of the things I’ve learned from reflecting back in time.

Dear Bipolar Warriors,

I’m not sure where you are in the journey of living with bipolar disorder.  You may be newly diagnosed and confused as heck about this illness.  You might still be struggling trying to find the right combinations of medications.  Like me, you may have experienced a significant amount of loss because of bipolar disorder.  Maybe you’re kicking it and have mastered how to live well with bipolar.  Wherever you are on the journey here are a few things I’ve learned along the way.

Living with a chronic mental illness is challenging.  Okay.  That’s clearly an understatement.  There are challenges with people who are close to you understanding the illness, accepting that sometimes you’re not always going to feel well and giving you a chance to live to your potential when you are well.  There are complications with relationships.  It all gets better over time.

Some days it gets frustrating to have to fill pill boxes (I fill three weeks at a time).  But looking back I can tell you there was a time when I would sit on the edge of my bed, dump the pills in my hand and begrudge having to take them.  I would think, “I’m sick.  Why me?”  Then I would swallow them and go to bed feeling “less than.”  Fast forward over three years, it’s just part of my every day habit.  The pill boxes make it easy.  It’s a habit and I rarely ever forget to take the medications.  That’s what has been keeping me healthy.

But.  It doesn’t mean I have to like the whole process.  I don’t like having to call in the pharmacy for all my meds.  It’s a pain.  Some days I wish I didn’t have to do this, but it’s all part of managing the illness.  Without meds I have no idea where I’d be and I’m not ever going to take that chance to find out.  One could say, “Been there, done that.”  If you’re curious about that journey you can find my book  “Bipolar Disorder, My Biggest Competitor” on Amazon.

I am a strong proponent of finding the right combination of medications.  Besides my own story, I have my mother and sister’s examples and almost all the people who I have met needed medications to deal with this very tricky illness.  But it’s a bear finding the right ones.  Don’t give up.  Keep trying.  If you don’t like the doctor you are seeing, find a new one.  Learn about the medications for bipolar disorder.  Click here to find information on medications.

I can also share with you that recovery is possible and very likely if you have the knowledge, determination and access to care necessary.  But it’s also the hardest thing I’ve ever done in my entire life.  For those who don’t know, I’m an Olympic athlete and that was pretty darn challenging.  Recovery makes training for the Olympics seem easy.  And let’s not forget recovery does not mean “cured.”  It means different things to different people.  For me, it means I can use my talents and skills and contribute to my community.  It means I live a peaceful existence.  And I mange my illness to the best of my ability.

But.  There are other warriors out there who are in pain.  They’re having a frustrating time with dealing with bipolar.  Medications are causing bad side effects.  I understand.  What I can tell you from experience is don’t give up.

I’m gonna sum it all up and say what has worked for me might not work for you.  But I can tell you that you must have a desire to get well, dedication to find a successful treatment plan, discipline to stick with the treatment plan and the determination to beat this very challenging competitor.

Good luck warriors.  You are not alone.

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.

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

Finding my vulnerability

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“I found it much easier to stand up for other people who may not be able to advocate for themselves than allowing others to help me.  When I finally reached rock bottom and I said those words to my sister, “Help me.  Please help me.”  It was the most vulnerable moment of my adult life.”   Montana Jail Journal- January 18, 2013

In my opinion mental wellness has a lot to do with personal growth.  I know it sounds trite to say, but I was on an expedited train of personal growth while I sat in a small jail cell in Montana because of an under-treated mental illness.  I just didn’t know it. Sometimes when the only thing one can do is think, read and write personal growth opportunities are abundant.

I’ve been reading Brene Brown’s most recent book, “Braving the Wilderness: The Quest for True Belonging and the Courage to Stand Alone”.  I’ve been fascinated with her work and all the many lessons I’m gaining as I read and digest each chapter. I was pleased with myself that I had actually been practicing some of what she suggested.  Having been in pure survival mode from bipolar disorder for many years to finally being well enough to embark upon self-reflection and personal growth is making me very happy.

She writes a great deal about belonging.  It seems like a paradox to talk about standing alone, braving a wilderness and belonging.  But this quote kind of sums it up–

“Because true belonging only happens when we present our authentic, imperfect selves to the world, our sense of belonging can never be greater than our level of self-acceptance.” 

This statement rang so loud to me.  All the people who live with a mental illness who are living in shame at this very moment came to my mind.  I’ve been there, I know what that’s like to not have self-acceptance, and therefore not belong.  I’ve felt like an outcast with the people who were closest to me.  When you blame yourself for having a mental illness it’s kind of hard to experience a deep level of self-acceptance.

As I’m blessed to experience a time of peaceful knowing, I keep thinking about all the people who need to hear, “you have a mental illness and it’s not your fault.”  When I sat in an Idaho psychiatric hospital and I let those words resonate inside of me, I could feel the shift in me emotionally.

Self-acceptance is something people pay a lot of money to get.  But it’s really not anything you can buy.  It comes from within.  It’s an internal, quiet voice of strength that tells you you’re okay.  It also means that we accept all of who we are–all our life experiences.

This is something very difficult to do when handed the additional challenge of having a mental health condition.  Think about it-if you’re fighting depression the last thing on your mind is accepting yourself.  But here’s the catch, when we accept our experience for what it is it can actually help us to heal faster.  And certainly if not to heal, than to have the energy to fight depression.

Funny thing is…I can read Brene Brown’s quote and smile.  I have experienced it and believe it is true.

Reading her book prompted me to watch her Ted Talk on Vulnerability.  I could probably watch it 100 times and still learn something.  But this whole idea of vulnerability peaked my interest.  Because as much I hated jail, it was a time in my life when I asked for help.  I was extremely vulnerable.

Yet, though I had a long journey ahead of me, those three weeks in jail changed my life.  I was learning to embrace vulnerability.

There is much of Brene Brown’s research that can really be applied to understanding why it’s so difficult to eliminate the self-stigma of mental illness.  I hope to take a deeper look at that and write about it on a future blog.  Until then, check out Brene Brown’s work.  It’s very enlightening.

 

 

 

 

 

 

It’s not sexy to be a mental health advocate

BeVocal_Logo

October is breast cancer awareness month.  I didn’t know that until eight days into October.  My realization started when I went to the local grocery store and every other cashier light (you know the one that tells you when their open) was pink.  And they were asking for donations at the register for breast cancer research dollars.  Still didn’t realize it, because people ask for money for everything now.

Then, I went shopping.  Pink shirts for sale everywhere.  I was so impressed.  Everyone, unless of course you’ve been living under a rock, knows pink is the color for breast cancer.  It’s a highly successful awareness campaign that started in full force over twenty years ago.  Heck, even the NFL is “pinked out” in October.  As a mental health advocate I dream about the day when everyone knows mental health awareness is green and guys like Brandon Marshall (click here for Brandon’s mental health advocacy organization) don’t get fined $10,000 dollars by the NFL for wearing green cleats.

But when something is successful it warrants looking at their model and learning from all the good things breast cancer awareness advocacy organizations have done.  In fact, it all peaked my interest in finding out just how much money is spent annually on breast cancer research.

The answer-cloudy.  Mmmm….what do I mean by that?

Well, turns out that breast cancer awareness and research are lumped into one big estimated sum of $6 billion a year.  Of course there are critics who think all money should be research money.  But you don’t get research donations without awareness.

Why is this important to mental health advocacy?  Because the National Institute of Mental Health has an annual budget of only $1.5 billion.  The National Institute of Mental Health funds research for mental illness and neurological conditions (brain illnesses), like bipolar disorder, schizophrenia, dementia, depression, etc.  All of these illnesses have a fraction of money spent on research.

I compared the annual budget of the Susan G. Komen Foundation, a breast cancer advocacy organization based in Texas, (well known for the trademarked tagline “Race for the Cure”) to that of the National Alliance on Mental Illness, the largest mental health advocacy organization in the country.  I found the Komen foundation listed as #54 on the Forbes list of U.S. most wealthy charities with $250 million in annual revenue in 2016.  That’s for one year folks.  On the other hand, NAMI based in Arlington, VA has a little over $10 million in revenue.

In all fairness, NAMI has affiliaties in all 50 states who also have revenue, but I doubt even including all of them would break a $50 million in total revenue.

What’s my point?

How are we going to make sizable contributions as mental health advocates when the largest organization of advocacy only nets $10 million a year?  So many diseases to lobby for research on-so few dollars.  So many issues to battle, so few people to do the work.

And then there’s this…

#1)  STIGMA. It’s not cool to be a mental health advocate.

#2)  STIGMA. It’s not sexy to go out and raise money for people who have a mental illness.

#3) STIGMA. These illnesses are misunderstood.  They are often not looked at as an illness.

#4) STIGMA.  People are ashamed to come out and say they are living with a mental illness.

#5)  STIGMA. Policy makers don’t understand it, unless it effects them.

#6) STIGMA.  Family members don’t want people to know their loved ones live with a mental illness.

And…

I could go on and on.  You get the point.  We have limited resources for a very complex problem that most people don’t understand and many fear and are afraid to talk about.

So..if you’re reading this please pick up an advocacy banner.  There’s an enormous amount of work that needs done.  The Susan G. Komen Foundation started with raising awareness for breast cancer.  Mental Health Adovocates have to do the same thing.  We have to help one another do this work.

If you’re local to the Wheeling area you can start your advocacy work by showing up at the NAMI Greater Wheeling Walk on October 21 @Wheeling Park.  Registration starts at 10am.

And…

We even have cool tee-shirts.

 

 

 

Family members perspective matters 


I was having a conversation with my sister, Shelley about my journey with mental illness.  I’m not going to lie and say it was a pleasant discussion-it was tenuous.  Why?  Because neither one of us were appreciating our different perspectives.

She was coming from the place of a family member of a loved one with mental illness. The position which says, “If you had only taken your medicine nothing bad would have happened.”

I was coming from the place that said, “Bipolar disorder is a bit harder to manage than you think.  And by the way some of what happened wasn’t my fault.”

After a few days of letting the conversation sink in I came around to seeing what she was trying to say, “Mental illness is a family disease.  Every disappointment, every hospitalization, every tragedy is felt deep within the soul of family members too.”

I understood.  I have sat in the chair as a family member-my mother and another sister have bipolar disorder.  It was a long and arduous journey until they found wellness, until they recovered.  But when I look at them I don’t see bipolar disorder, I see a person.  I see a family member.  I forget about all the times it was difficult.

Family members who don’t have a mental illness have a right to their perspective.  But the problem arises when policy decisions and laws are made for people with mental illness without our perspective too.  Problems arise when we are blamed for our mental illness.

I also realized how much I had moved forward and let go of the past.  But the conversation we had brought back all the memories and flooded my brain with difficult times, struggles and nearly insurmountable challenges.  I was taken back by all I had to process.

Then, I began to think about others who haven’t spent every waking moment reading and advocating for mental illness.  It has provided me with an avenue of healing.  In my mind I’m no longer the distraught bipolar victim-I am a strong mental health advocate.  I challenged my sister to speak up for mental health and bring another family perspective into the light.

I realized all perspectives are important.  I try to understand the pain and sorrow family members feel when remembering what we went through.

But tomorrow is here.  I am alive and well.  And so are my family members.  What we do with our knowledge and wisdom, time and talents to help other people will not take away the pain of old memories, but will make us stronger in how we deal with them.

Giving a gift of understanding to each other is the first step in the process.