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.

 

 

 

 

 

 

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It’s not sexy to be a mental health advocate

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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.

 

 

 

Getting passed the whispers!

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I was in the store shopping yesterday. It was a store I frequent quite often and they know my face well. I’d always had good experiences, but yesterday changed all that. As I went to check out I turned my back on the three ladies standing behind the cash registers. As I suddenly turned around they were whispering just loud enough that I caught they were talking about me.

Like most people, I assumed it must be bad if you have to whisper about someone. I told myself I wasn’t going to let it bother me, but of course it did. And the thoughts were off and running to the races.

I’m a very big woman. I’ve always been a “big girl.” Certainly taller than most women and for sure much bigger all the way around and because I stand out in the crowd I’ve taken my fair share of wise cracks and disparaging comments. So, it’s safe to assume if someone is whispering behind your back, it might not be a positive compliment.

Then…I went down this pathway about how I’m sure I’ve been a topic of some not so nice conversations about my mental illness. But I just keep pushing the envelope on that one. Don’t really think anyone has the **lls to say something to my face. But you never know.

A few days ago I sat down with a reporter from one of the local newspapers. He was writing an article for his weekly sports column called, “Unsung Heroes” When he ask me for an interview I was hesitant. I really don’t see myself as a hero. But I agreed because it was another opportunity to put mental health conditions in the spotlight. Another chance for people out there struggling to read that article and know they are not alone.

I never thought anything of it. I’d already written a book that was pretty revealing, so what’s another public newspaper article. Right?

Well, I’ve learned a few things about myself. #1) I’m not as sensitive as I used to be; #2) I’m still human; and #3) Raising awareness for mental health conditions/mental illness is my number one priority.

It’s nice to know when you find your passion. I fell into mine because I found other people who were taking up the flag in similar ways across the country. The interesting thing is there’s no one quite like me. What does that mean? Small town girl, All-American, Olympian, Fortune 500, mental illness, jail and mental health advocate—and as it all sunk in to my mind this weekend I realized the responsibility I have to continue on this pathway.

A calling as it turn out, is by far more important than the whispers that may come.

Click here…in case you haven’t gotten a copy of my book.

Remember – Mental Illness is The Enemy!

Several years ago I received a call from a friend of mine who wanted to tell me she was diagnosed with breast cancer.  It was a rather traumatic diagnosis for her to hear.  Certainly life threatening, but also treatable.  I was impressed with how she dealt with it.  She made cancer her enemy and did everything she could to fight against it.  And you know what?  She beat it.  She is now over 15 years cancer free.

What I’ve learned about mental illness is that it is also life threatening.  From the first time I experienced suicidal thoughts as a sophomore in college to the relentless dogging of “you should just kill yourself” tapes that played in my mind a few years ago.  I learned from the time I was twenty years old that depression was and will continue to be my number one enemy.  It threatens my life and makes me vulnerable at times to the hopeless thoughts that wander aimlessly into my brain.

The difference between cancer and mental illness is that there is a cure for many types of cancer.  There’s no such thing for mental illness of any kind.  Of course there are medications that make it more tolerable, but nothing that takes away all of the symptoms.  It’s a fight.  Sometimes a daily battle and other times an intermittent harsh reality of living with a chronic illness.

If you ask most people if they were afraid of cancer they would say, “yes.”  No one wants to get cancer.  But people are afraid of mental illness for all the wrong reasons.

Many people have no concept of what it’s like to suffer from so much anxiety a person can’t leave their house.  People still believe a person with depression just isn’t trying hard enough and he’s just plain lazy.  Those with bipolar disorder are labeled as trouble makers and moody.  People with schizophrenia – just plain crazy.

When my friend went to the doctor for her breast cancer consultation, I went with her.  As a matter of fact, I jumped on a 2 hour plane flight to go to her doctor appointments with her.  I wanted to show support.  I wanted her to know she wasn’t alone in the fight against her number one enemy.  The disease that was threatening to take her away from all of us much to soon.

This is how we all should rally around those who are struggling with mental illness.  The enemy is not the person who has the illness.  The enemy is the mental illness.  It’s the disease that causes an interference in thinking, emotions and behavior.  It affects the most important organ in our entire body – the brain.

Yet, those who have mental illness are often left to fend for themselves.  Especially when they aren’t fun anymore.  When the struggle is the most difficult and support is truly needed, many are left isolated and alone.  That isolation leads to a worsening of symptoms.  A more complex illness.

I want people to know that my bipolar disorder is a serious life threatening illness.  I manage it well.  But the moment I let my guard down, the minute I miss a day of taking medication, the days I don’t get enough sleep, is when the enemy threatens my life and everything I have worked hard for.  The enemy nearly destroyed me and I’m not going to let that happen again.

I just wish everyone knew mental illness is the enemy.  And if we are not diligent it will continue to steal our loved ones from us in one shape or form or the other.  Sometimes the difference is having a team to fight the illness with us.

The next time your loved one complains of depression symptoms or has a panic attack, offer compassion and a kind word.  Sometimes all it takes is saying, “Are you okay?  How can I help?”

 

“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.

 

 

Football & Recovery

I am an athlete.  I might not be in Olympic caliber condition, but I will always be an athlete.  I am not the greatest fan in the world, but I did watch the superbowl.  I really could have cared less who won or lost, but I became fascinated with the way Tom Brady handled being behind by so many points.

Stressful.  Frustrating.  Emotional.  Yet he never quit.  You can dislike Tom Brady and the Patriots, but you cannot discount the fact that this guy never gave up.

In my world of recovery and mental health advocacy I cannot think of a better comparison for how I feel about my recovery journey.  I made it all the way back.  I looked back today and thought about how many years and I do mean years, where I struggled relentlessly.  It doesn’t mean that those years never had a good time or two, it just means they were long, hard, and draining.

As I sat in my new NAMI of Greater Wheeling office today I really just wanted to pinch myself.  I started on this mental health advocacy journey three years ago and since then I have worked my way to becoming an Executive Director of a non-profit organization.  One that focuses on advocacy for people with mental illness and their family members who support them.  I have found my passion and my cause.

If you knew where I was four years ago, you might not believe I could make a comeback.  If you want to find out what happened and how I did it…watch for the release of “Bipolar Disorder, My Biggest Competitor.”  It will be released on August 22!

No matter what people say about me the one thing they can never discount is the fact that I never give up.

 

Why having a mental illness makes you strong

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I have been putting the final touches on a book I am writing, “Bipolar Disorder My Biggest Competitor.”  It has made me look deeply into myself as a character in a story.  It is the strangest thing reading about this character and knowing it is me.  But this experience has had a profound impact on how I see myself–sometimes victim, sometimes hero, and yes sometimes villain.  But always strong.

If you live with a mental illness you know exactly what I am talking about.  The times when you lie in bed feeling miserable and wish the depression would stop haunting you.  And then you do it–you make yourself get up and get out among the living.  In that moment you beat it.  You won.

How about the times when you thought you might never get well again, but kept battling and recovered?  Even in those darkest moments you found the beacon of hope glaring through the fog.

Then there are those times when you get “the look” from other people who know you live with a mental illness.  It strikes the chord of paranoia and you wonder, “What is she thinking about me?”  But you coach yourself through it and tell yourself, “It is okay.  I really don’t know what she was thinking.”  You overcome the negative thoughts.  You beat “the look.”

What about those days when the trusted family member makes a joke about your mental health?  You feel horrible but can’t get any compassion from the people closest to you.  But you hang in there and keep fighting.  You hope tomorrow will be better.

Believing mental illness makes you strong is opposite of what people have told us about it.  Remember every battle you have had to fight, every bit of shame and guilt you have faced head on, and every medication you have to take just to feel somewhat “normal,” these are the things that make you strong.  Stronger than you may think you are.

 

Time to Talk Mental Illness

It’s hard to believe it is 2017!  I am not sure where the time has gone, but I do know after all these years of living with the stigma of mental illness it is for sure past time we talk about it.  There are so many anti-stigma efforts and I do feel like we are moving the needle some, but it is not enough.  And from my perspective it is not happening fast, it is a slow drip-drip-drip.

I never thought I would have to live with some illness called bipolar disorder that many people really did not understand and if you said you had a manic episode they really would not know what you meant.  Really I wasn’t sure what it meant for many years, until I studied it so much so I could manage it.  In reality, everyone with bipolar disorder experiences it a little bit differently.  Clusters of symptoms may be the same, but how we behave and handle our illnesses are generally not a carbon copy of it.

We have to talk about mental illness because quite frankly it is so complicated it is hard to understand.  Some illnesses are easier than others but I would argue for even the people who have anxiety disorders they will find not everyone understands how debilitating that can be.  Many people believe you should just be able to take a pill and “get over it.”

With 1 in 5 Americans living with a mental illness that equates to about 20% of the populations.  Yes, there are far less of us who have severe mental illness like bipolar disorder, major depression and schizophrenia, but we still represent million of people.  This really means that everyone knows someone who has a mental illness…and if you think you don’t it is probably simply because they don’t talk about it.

I want you to ask yourself the question, “If I found out my best friend had been struggling with severe depression for years, would that change how I felt about them?”  What about if you found out your sister had been struggling with postpartum depression with psychotic features would you know what that meant?     How about your boss at work who seems to have major mood swings between being very gregarious and not talking at all.  What do you say?  What do you do?

If we don’t talk about mental illness we will continue to find ourselves in these socially awkward situations where we don’t know how to react or what to say.  Granted it is not as bad as it used to be, but it could be a lot better.

Of course I don’t believe everyone should write a blog or a book about their struggles with mental illness.  But I do believe people should not have to be afraid to tell others they are struggling with a mental illness.  It is truly a shame to have to keep something a secret that occupies a great deal of time and effort.  Managing a chronic mental illness is a HUGE effort.  There are doctor and therapy appointments, medication side effects to deal with, prescriptions to refill, and symptoms to deal with.  It is at times a very hard road to journey on.

My one wish is that other people could feel more free to talk about it so there will be a greater understanding.  Maybe then those who live with mental illness will feel more supported.  Maybe then there will be more research dollars to help fund better treatments with higher efficacy.  Maybe then there will be better access to care.  Maybe then people with mental illness won’t be housed in jails and prisons.  Maybe then our society will be more compassionate.  Maybe….just maybe people won’t have to suffer in isolation.

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