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

Facing the Truth

Her blinders have been removed

She has taken her gloves off and removed her coat

She sits in stillness with peaceful knowing

Knowing from the soul

Inspired by the spirit

 

The storm came along with no warning

It whirled and twirled devastation

Leaving people shocked, hurt, stunned and dismayed

The creation of fear perpetuated

Numbness permeated and opened wounds

 

Left behind were the remnants of missing pieces

The young woman and old soul stood strong

But the powerful force of the storm threw her to unconsciousness

When she awoke it was apparent to her she was the storm

Crushed by the aftermath of viewing what she left behind

 

Deeply saddened with what she unknowingly had done

Egoically embarrassed, ashamed, and guilty

Incapable of seeing what the mirrors were telling her

Her prayers were answered one day

She ask to be shown so she could heal

 

She prayed for strength and courage

She prayed for forgiveness of self and others

She lay helpless crying for hours in her bed

She faced her naked body and viewed her own destruction

 

Overtaken by grief, hurt, sadness, disappointment

But inspired by unconditional love

 

She is a person hurt by her past

She is a human being

She is not defined by labels

She is not willing to give up

She is walking her journey one step at a time

 

Who is she?  Who is this woman with such great strength?

She is not alone

 

@amyjgamble

amygamble.com

 

5 Reasons why I don’t like psychiatric medications – but I still take them

Overview

I am guessing you may have heard the reasons why people don’t like to take medications for psychiatric conditions.  It all sounds so easy, “It’s just like taking a blood pressure pill.”  “It’s no different than taking insulin for diabetes.”  Well, the truth is it is very different and there are several reasons why.  Here is the top 5 on my list.

#1 – They make you gain weight

There are few classes of psychiatric medications that do not cause weight gain.  With the exception of some medications for anxiety, almost all the medications for depression, bipolar and schizophrenia cause weight gain.  I managed to gain a slim 80 pounds!  It seemed like every time I was put on a new medication I gained 20 pounds.  I don’t know anyone who likes to gain weight.  But the reality is medications made me feel better and if I have to work at losing weight that’s just the trade off.  It is a valid concern for those of us with a mental illness.

#2 – Some make you feel like a “zombie” from the Walking Dead

Take a blood pressure pill and you rarely have a side effect.  On the other hand, take some high powered psychotropic drugs and you might feel like a zombie.  Usually this side effect goes away in time, but if it does not I encourage people to talk with their doctor to help adjust the medication or the dosage.  No one wants to feel worse and sometimes that is what happens.  Older medications are notorious for causing lethargy, work with your doctor there are many choices that might not make you feel as bad.  Above anything – don’t stop taking your medication without talking with your doctor first.  There can be some serious effects from stopping abruptly.

#3 – The Stigma of Mental Illness

It is the shame and misunderstanding that comes from stigma.  No one wants to feel as if they are not “sane.”  It is about credibility.  Not being different from other people.  We all want a sense of belonging, but not to a group that is discriminated against.  This no longer effects me much but in the past this really bothered me.

#4 – The medical community does not know the long-term effects

Less funding for research means less understanding for the long-term effects of medications.  Especially for a class of drugs called anti-psychotics.  They are used for many off-label conditions and the long-term effects are truly unknown.  What we do know is that people who have schizophrenia live on average 25 years less than other people.  We don’t know if that is related to medications or a number of other factors.  It’s hard to want to continue taking a medication without knowing what it will do to your body.

#5 – Branded products are expensive

The latest greatest products are extremely expensive.  Some drugs can cost $1600 a month making it impossible for people without great insurance to afford the medications that may have less side effects.  Generic drugs don’t cost much at all and some have been shown to be as effective as the newer products.  If you take 3 or 4 prescriptions a month it gets a little pricey.

So these are my top 5 reasons why I don’t like psychiatric medications.  But here is the disclaimer – I still take them because I know without them I can’t live a good life.  They help my symptoms and make it possible for me to live a “normal” life.  Without the medications I don’t know what would happen to me and I am unwilling to take the risk to find out.  But there are a group of people who don’t believe in them, I am not one of them.  Suffering is not worth going without a medication that is going to make you feel better in the long term.  There are trade offs with everything in life.

 

A letter to my younger self

Dear Amy,

I want you to know there will be times in your life when you will struggle with a mental illness called bipolar disorder.  I know it sounds complicated and the truth is-it is complex because we are talking about your brain.  But if you learn everything you can about how to manage your symptoms and find a good treatment plan you will do great.

But I want you to know fighting your way back to health will be the hardest thing you ever do.  There is such a stigma with mental illness a lot of people are not going to understand.  You will find out who your real friends are and who you can rely on.

More than anything be true to yourself.  You don’t have to publicize you live with bipolar disorder unless you want too.  But you MUST be honest with yourself about your illness.  Some people can survive and thrive without medications, but you are not one of them.  In fact, most people with bipolar disorder need medications and there is no shame in that.

Whatever you do-don’t deny there is a problem.  It will set you back in life to pretend this serious illness will magically disappear on its own.  When is the last time you ever heard a brain tumor disappearing without intervention?  As much as you want it to go away, you can’t wish this away.  The sooner you accept it the faster you can get well and live your life.

You are going to need help along the way.  Doctors and therapists can be tremendous support on the road wellness.  But remember they are also human and not perfect.  They will make mistakes sometimes.  You have to find the right fit for you and never be afraid to ask questions or even disagree with providers.  The best ones will welcome an open dialogue.

In life we don’t get to choose what we get and what we don’t.  You are going to feel frustrated at times and you may have moments when you think, “what’s the point?”  But I want you to hold on to hope and never give up trying.

There will be times when you reflect back and thank your mother for giving you the gift of faith.  You may not be overtly assertive about your relationship with God, but you will get down on your knees and pray for God to get you through the tough times.  Without your faith you won’t make it because you will have some very difficult times and that will require a great deal of faith.

You will get a good handle on bipolar disorder and once you do the sky is the limit.  So don’t ever let anyone tell you to keep your dreams small.  You are good at dreaming big and I want you to keep doing that as long as you live.

Finally, take one day at a time.  Everything you need will be provided for you, maybe not what you want but what you need.  And when you figure all this stuff out don’t forget to reach back and help other people.  Because at the end of the day that’s what life is all about.

Your friend,

Your older self

Are you addicted to Bipolar Disorder?

Recently I watched a video clip about ABC’s new show Black Box. If you haven’t seen Black Box it is about a neuroscientist who also lives with Bipolar Disorder. The strange thing to me is that they say she is “addicted to bipolar,” because she loves the manic highs. I don’t think I have ever heard it put that way before, but I suppose it is because I have a rather opposing viewpoint. (You can view the video here Black Box Video)

When I retrospectively look back at the times I have had manic episodes, I really don’t find a lot of positive aspects. During those episodes I have bought things I didn’t need, got involved with some people I would never let my dog talk too, almost lost my life, and really the list goes on and on. High intense manic episodes have made me want to adhere to a treatment regimen that works not seek out more mania.

I don’t dislike Black Box but I wonder what the basic viewer thinks about bipolar disorder as a result of watching it? To my knowledge the main character has yet to experience deep levels of depression—which we all know is where the disorder spends most of its’ time. We also know that in treating bipolar disorder it can take an average of 10 years before finding the right combination of medications. Not so simple as saying the character could have a wonderful, symptom free life if she only took her medication as prescribed.

If I have stopped taking my medication it is because of a few key reasons:

1) I didn’t think I had bipolar disorder—I was in denial

2) The side effects of the medications were so bad I couldn’t tolerate them

3) I started to relapse and didn’t recognize I was getting sick—so I stopped the meds

There has not been anytime in my history with this illness that I said, “I love the mania and I am addicted to it.” Most of the time I didn’t even know what the mania was let alone want more of it. It was more like living with something that was so natural to me. My normal was experiencing “highs” and “lows” and I thought everyone experienced the same kind of thing. I’ve never known what normal is because I’ve never had normal for an extended period of time.

Do I miss the mania now that I have a treatment regimen that works? If I miss anything it is the energy to do things, some of which is controlled by medication and some of it is a side effect from medication. What I miss more than mania is a life that was fuller before I got so sick with bipolar disorder that I could not function.

I know it’s hard to portray characters in the media with mental illness, but I wish they wouldn’t glamorize bipolar disorder. I wish they would take real live people and tell their stories. I doubt that many of us who have really suffered with this illness would say we are addicted to it.

Feeling “Less Than”

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There are days when I see myself as “less than.”  Less than what?  Less than the general population who gets up and goes to work everyday.  Less than the people I used to work with who have risen high on the Corporate America success ladder.  Less than even some people who have recovered from mental illness and seem to have left their struggles in the dust.

I feel less than fulfilled with my current life.  I make a point of spending my time writing everyday, which gives me tremendous value.  But my overall everyday life pales in comparison to my past life before I was really hit with bipolar depression.

So I ask myself the question, how can I exists without feeling “less than” as a human being? For starters, I am aiming to make my comparison a little fairer.  What do I mean by making it fairer?  Well, it’s not fair to compare a basket of eggs with a basket of oranges. After bipolar disorder took me down hard I had to recover from a series of major episodes.  The fact that I am capable of doing all that I currently do is a tremendous success.  But comparing my life now with the past and before bipolar disorder really wrecked havoc is simply not a fair comparison.

I am willing to bet I am not alone in feeling “less than.” I am sure there are other people out there who feel like they were so much better before a mental illness disrupted their life. I want to say to them, “you are not alone.” It does not make you feel better to know other people suffer the same plight, but it certainly puts things into perspective. It allows you to realize other people are carrying the same or similar torch.  Plowing away each day, trying not to get caught up in letting the “less than” feelings dominate.

Part of the problem with feeling “less than” nags at the self-esteem and tears down self-confidence. Many of these feelings are so “normal,” but somewhere along the way we forget to address them. We end up with an overflow of bad feelings about ourselves and we don’t know what to do about them.

I have truly found that if I hit the nail on the head with something I at least have a chance at knowing what to do with it.  So if I call out a day when I am really feeling “less than” I will acknowledge that feeling. I can then talk my way through the bad thoughts I may have about myself.  The more I realize the thoughts are very “normal” for some reason the more strength I gain.  Instead of going through my day feeling worse about myself, I can grab onto what I do well and build upon that instead.

I have always heard it is not a good idea to compare yourself to others, so why would I want to compare my life to someone else? Not a good idea. I have to keep reminding myself that I am not “less than” just “different.” And that “different” is simply okay.

 

 

 

 

 

 

I’m Mentally Ill But Don’t Pity Me

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

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

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

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

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

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

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

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

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

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

 

Mental Illness Makes You Tough!

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

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

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

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

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

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

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

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

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

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

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

When the good day arrives!

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One of the things I learned in a recovery workshop is to create new dreams after having your life interrupted with a psychiatric illness. I created a dream to become a mental health advocate, but I soon learned that creating a dream is one thing and living it is another.

I think my impatience is a result of having too much time on my hands. Not all days but some days a few hours of free time can feel like sitting in the dentist chair having my teeth pulled. When I am feeling good and overall having a good day I feel like I can accomplish so much more.  But on those bad days, like yesterday, I have no desire to do anything.

I wish I had a crystal ball that could tell me when the good days would bless me with their presence. I could be so productive if I had something of value to do. But what kind of job out there rewards people for having outstanding days periodically? There are so few that I have found I need to get creative and figure out a way to utilize my time more wisely.

Yesterday I read an article about a research project that NAMI conducted. It said that people with mental illness had an 80% unemployment rate in the United States. From everything I have read it seems that most other countries fall about in the same statistical ratio. So what does this say about mental illness and employment? The article does not address those of us who may be underemployed, which is an entirely different issue too.

What are we supposed to do when we have those good days?  I guess reading and writing is one way to spend time in a valuable manner. I just have to keep from getting too frustrated with myself because I recognize having too much time on my hands is not the best thing for my mental health. I am a goal directed individual and the more goals I can have for myself the better I feel.

The problem comes when I start wishing there was an immediate “feel good” solution for me on those days when I am far more capable of doing complex tasks.  These are the times when I focus hard on positive self-talk. It’s really easy to go down the path of “let’s beat up Amy today,” even though I know it is not a healthy thing to do. I may say something like, “If I tried harder I could accomplish more.” “I need to be more organized with my time.” Then I get all excited about having a new plan of action and I wake up the next day and getting out of bed may be the best I can accomplish.

This up and down road makes it a harder to check off the “to-do” list. It also makes it more difficult to have consistent approaches to various goals ultimately making it harder to have achievements. Certainly it is not impossible, just more difficult.

If I had one wish I would hope for more resources to be placed in helping those of us living with a mental illness to have working projects where we could utilize our skill sets. Maybe a collaborative writing project where we contributed to a group writing project. I don’t know the answer. I just know I need something I can feel good about.