Moved by “God Know’s Where I am”

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My heart is breaking. I just finished watching an interview of Linda Bishop’s family about the documentary “God Know’s Where I am.” It’s a story about a woman who was released from a state mental institution floridly psychotic. She was given no medication, no money and they didn’t even make a phone call to her daughter or sister that she was being released. Turns out even a judge ruled she was sane enough and didn’t need a guardian.

So much for sanity.

Linda left that institution and wondered through the woods where she came upon an empty farm house. She stayed there for four months surviving on apples from a tree and water from the melted snow. She kept account of her daily activities by writing in a journal. Winter came and she eventually starved to death.

She died with all her civil liberties. She died with her rights on. She died an early death. She died a victim of an inhumane mental health care system that fails people every single minute of every single day. Lives are discarded like a piece of trash.

My eyes are watering with tears. I’m not a crier. But I see myself in Linda’s story. I was the inpatient who was released from the hospital floridly psychotic. Fortunately, I was released to my family. But days after arriving home, I took off on the road again only to find myself lost in the wilderness. Wandering lost, cold with frostbitten feet. My life was sparred.

The system failed me. But I survived in spite of it.

There isn’t a day that goes by that I don’t pinch myself with how lucky I am. I am one of those people society gave up on. Thrust into a broken, incompetent mental health care treatment system. But here I sit today. Sad for the people who weren’t, haven’t been or will not be as fortunate as me.

I’m very unsure of what to do with all of my emotions. For many years working as an advocate has served me well. Now, my heart is heavy with all the tragic stories I bear witness to. Feeling helpless against a giant system with no fix in site.

The heavy, dark sadness stirs my soul. I want people to have civil liberties, but I don’t want people to die with those liberties on. We must do something to change this atrocious system.

To watch the documentary “God Knows Where I am” you can find it on Netflix.

 

 

No one wants to have a mental illness

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Yesterday morning I awoke to a text message from my sister Sherry who also lives with bipolar disorder. She wrote, “I hate bipolar illness.” It didn’t take long for my wheels to start to turn.  Of course you hate this illness.  I hate bipolar too.  I don’t like how it interrupted my life and made my path much more difficult. But I know I can only entertain those thoughts of dread for a little while. If I spend too much time hating bipolar and the fact I have it, I lose out on life.

The fact is no one wants to have a mental illness. It’s hard to come to terms with when we get an initial diagnosis. It’s even harder for loved ones to watch as people destroy their lives because they refuse treatment. I’ve walked in those shoes, so it’s not a judgement simply an acknowledgment of what can happen.

I’m standing on the side line right now watching a young man blow up his life because of his refusal to accept his diagnosis. He’s manic and psychotic. At only 27 years old he’s burning through friends like an out of control forest fire. Soon, he’ll be all on his own to one day, hopefully, pick up the pieces of what is left of his life. I hope that’s soon for his sake.

I’ve spent a great deal of time learning about bipolar disorder and quite frankly other mental illnesses. One the reasons people don’t get help is because no one wants to have a mental illness. I said that once, right? Well, when I was diagnosed with a mental illness it felt like a personal failing. It was as if somehow I had brought it all on myself. There wasn’t much compassion or understanding or anyone who I knew to turn to with questions. I was all alone in my struggle.

Because I felt like it was a personal failing I kept denying it existed. Eventually I did get treatment, but it took a long time to find the right treatment regimen. It was even longer before I learned the necessary lifestyle changes I was going to have to make. On average, it takes 8-10 years from the initial diagnosis before someone gets the proper treatment and that’s if she ever does.

Startling. Right? How can anyone jump right in and accept she has a mental illness, follow a flawed treatment regimen and trust health care providers who too often don’t know jack about what they are treating.

It can get really dark and toxic pretty quick. This is why I only allow myself to entertain the dark side from time to time. I am human, unfortunately. Ha.

The bottom line for this post today is to say no one wants to have a mental illness. But constantly focusing on all the negative things about it are counter productive. Of course I hate my illness. But to be honest it could have been far worse. All things considered I’m one of the lucky ones.

No one wants to have a mental illness but if you do have one please get the help you need. Your life depends on it.

Amy

 

What do pneumonia and depression have in common?

Three weeks has passed since I took a trip to Los Angeles and was fortunate enough to have received a SAMHSA Voice Award for my work with mental health advocacy.  It’s still hard to believe my work would be recognized on a national scale.  I’m truly humbled.

I’ve noticed a lot of mental health advocates who live with mental illness frequently talk about how much they struggle.  I’ve often wondered if those of us who talk a lot about recovery are giving hope or a false sense of what it’s really like to live with a mental illness.

Here’s my reality statement – Mental Illness is very often chronic and never goes away.  It’s not about false hope it’s about staying in the saddle and continuing to ride.  In other words, I have to push myself to keep my head up even on the days I don’t feel well.  Some days are harder than others. But I must fight to stay mentally healthy.

After I returned from Los Angeles I ended up with a really bad case of pneumonia.  After ten days of being completely miserable I was just tired of being sick.  To be honest I didn’t really get to enjoy the aftereffects of the award because I was incessantly coughing.  In short, I was miserable.

But the one thing that stands out in my mind about having pneumonia was a comment I made to my mother.  I said, “As bad as I feel…I’d rather have pneumonia than I would depression.  Anytime.  Any day.”

Now that I’m beginning to feel better I started to think about why I would say something like that.  The truth is experiencing fatigue, feeling unmotivated, sleeping all day, and clearly not having a positive attitude are symptoms no one wants to have.  I had those symptoms during my pneumonia.  But it was eerily similar to having a depressive episode.  And knowing this you can understand why I would never want to be depressed.

What’s funny to me is I’ve had family members say, “Isn’t there anything you can do for yourself?”  There’s lots of options when you’re treating symptoms of pneumonia.  There are few options when you’re going through a depressive episode.  The biggest difference I have found is that pneumonia is much shorter, even though the suffering is no fun.  There is light at the end of the tunnel.  I knew it was going to get better.

Depression, on the other hand, lasts for months at a time.  It’s dark and makes you feel terrible.  But one thing I know for sure is that no matter what causes the fatigue, bad mood, lengthy sleeping…one has to fight to stay positive.

The misery depression causes is a horrible feeling.  But I’ve learned eventually it will pass.  The key is to not give up the fight.

 

 

I have a serious mental illness and I don’t want to die young

No one ever said having bipolar disorder is fair.  Not only does it take years to find the right combination of medications, it also takes a great deal of time to sort out how to best take care of ourselves.  One of the biggest lessons I’ve learned is we must learn how to advocate for our best interest as patients.  We have to take care of not only our mental health but our physical health too.

Research has shown people who live with serious mental illness die 25 years younger than those in the general population.  There are many reasons for this statistic.  One of the main reasons is because the very medications which work to treat bipolar disorder have significant side effects.  Many cause substantial weight gain and that leads to obesity and type 2 diabetes.

Ask yourself the question, “When is the last time my psychiatrist talked to me about the side effects of all the medications I’m taking?” 

I’ll say upfront I have an excellent psychiatrist.  She’s helped me more in six years than all the doctors I’ve ever had combined.  What probably helped save me was her insistence that I have a blood test once a year to measure cholestoral and blood sugar levels.  Because one of the medications I take raises cholesterol and blood sugar levels.  All the medications I take cause weight gain.  Weight gain increases the risk for diabetes.

But my doctor never had the candid conversation about medication side effects and what the risks are.  Perhaps because it was imperative to work on getting my mental health stable first.  Her job is not to pay attention to my physical health.  And honestly I’ve been fearful of my increased risk for type 2 diabetes since I first started taking anti-psychotics (e.g. Risperdal, Seroquel, Zyprexa, Saphris, Latuda).

At the same time, when I haven’t been taking an anti-psychotic my mania went off the charts and I had dangerous psychotic episodes.  The trade offs for taking these medications come with a cost.

My day of having these medication side-effects and my lack of following a better nutrition plan has now put me in the position of having diabetes.  I’m not happy about it.  It was something I feared.

In my most recent visit to my psychiatrist my blood work showed I’m .01% away from having type 2 diabetes.  Which essentially means, I have it.  My worst fear came true.  But now that I know I’ll be following up with my primary care doctor and getting on a plan to have better health.

The number one cause of death for people with bipolar disorder is cardiovascular disease.  Managing bipolar disorder means managing overall health, not just mental stability.  Everyone who has bipolar or any other mental illness should make an appointment and see a primary care doctor at least once a year.  Learn the side effects of the medications and take them seriously.

A lot can happen in 25 years.  I’d like to be around to see it.

 

I have bipolar disorder and it’s not my fault

I’ve been really open about my struggles with bipolar disorder.  Before I had a good handle on this illness it really rocked my world.  I’ve come to learn that bipolar disorder will destroy your life if you don’t get the proper treatment and learn how to manage the condition.  It can be life threatening during times of severe depression episodes and suicidal thoughts.  It can put us at risk during manic episodes which often lead to psychotic episodes.

After my initial diagnosis I felt terribly ashamed.  The other day I was thinking about an analogy people might be able to relate to.  If you’ve ever had a night of drinking way too much alcohol and you engaged in embarrassing behaviors, the next day you might wake up with not only a hangover but guilty feelings about your behavior.  The things you said and did while drunk didn’t take away the fact you said and did those things.

This is what happened to me during manic and psychotic episodes.  I’d say and do things and then when I was stable I’d have to deal with the guilt of what happened.  The guilt leads to shame and the terrible tapes rolled in my head about what a bad person I was for having been sick.

But after many years of learning about bipolar disorder, I don’t feel badly about what happened to me while sick.  I’ve come to learn that I have bipolar disorder and it’s not my fault.  What is my accountability is now that I’m stable I need to manage my condition so well I won’t ever end up in a compromising position again.

But if for some reason I have break through symptoms, I’m not going to be ashamed.  I’m going to be proactive and do everything I can to manage my condition.  And if I have moments where I feel a little paranoid, make up a story or two based on that paranoia, I’ll live with it too.

One day people are going to realize mental illness doesn’t make you crazy, it just makes us vulnerable.  I wouldn’t blame myself for having cancer.  I’m not going to blame myself for having a mental illness.  And neither should the general public.

 

 

 

 

How I overcame suicidal thoughts

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The first time the dreaded suicidal thoughts came was the middle of my sophomore year in college.  I was a college basketball player at the University of Tennessee.  I had slipped into a deep depression. I felt like I was a failure and that no one would miss me if I just died.  I looked out the balcony of my apartment, where I lived on the Tennessee River.  I saw the bridge and considered leaping from it.

Then…I became terrified.  In my heart I didn’t want to die, but I did want the pain to go away.  The deep emotional pain of feeling so much stress and pressure from every area of my life.  The feelings of failure for not playing up to my potential.  The feeling of overwhelming stress after my mother’s near death from a mental health crisis.  My world was closing in on me.

I finally lie down in my bed and started to cry.  I prayed to God to help me get through the pain.  I didn’t understand what was happening to me.  I didn’t know I was experiencing my first bipolar depression episode.  I finally picked up the phone and called my sister.  She said, “Amy I think you need to go home.  You need to be around your family.  You need help.”  I listened.

I’m not going to lie and say fighting through suicidal thoughts has ever been easy.  Since the first time I experienced those thoughts I’ve struggled four additional times.  Two times I checked myself into the psychiatric ward.  One time I had no health insurance so I had to fight through the pain alone.

What worked for me is recognizing and understanding that suicidal thoughts often come when I’m not thinking clearly.  I learned that I can have those thoughts but I don’t have to act on them.  I also think about all the people who would be impacted if I took my own life.  At one point when I was struggling I would see the faces of all the kids who I worked with and I kept telling myself I did not want those kids to have to live with that burden.

Everyone has their own pain.  Depression effects people in different ways.  Hopelessness effect us all in different ways.  The pain of despair is very real.  What has worked for me is to get at the core root of why I am having those thoughts.  I think about them.  I analyze them.  I know if I act impulsively my act will be final.  There will be no tomorrow if I take my own life.

The problem is there often isn’t rationale thinking when suicidal thoughts start their haunting.  I’ve successfully handled my thoughts by fighting through the pain.  In my darkest moment I would focus on holding on for just one more day.  I’d pray to God to help me.

I’ve learned that pain, tough times and even bipolar depression are time limited.  No matter how horrible things have been in my life at times, things have always gotten better.

So if you’re experiencing a difficult time, don’t be afraid to reach out for help.  Things will get better.  Hold on for just one more day.  I promise things will get better.

If you’re experiencing suicidal thoughts reach out.  Call the National Suicide Prevention Lifeline at 1-800-273-8255.  Text the crisis line at 741-741.

People with mental illness do recover

I was sitting at the NAMI Ohio Conference today listening to several speakers share their story of living with a mental illness. Two people who had schizophrenia and one person with anxiety and depression. You may have heard of Wil Wheaton. I’m a little embarrassed to say I didn’t really know who he was. Turns out he’s pretty famous.

Anyhow, what struck a nerve was how fluidly the speaker’s discussed their mental health issues. How they each described in intimate detail how their illnesses effected their lives. And yet there they were on stage in front of hundreds of people appearing perfectly “normal.”

One man is an actor performing six shows a week. He works full time, has a fiancé and lives a full life. Doesn’t mean he doesn’t have his struggles with schizophrenia, but he has a good life.

People recover.

I thought of myself speaking to audiences young and old. I rattle any number of stories about my manic highs and psychotic episodes. And then I talk about having found my purpose as an advocate and speaker. Other than my extremely broad shoulders (lol) I look “normal.” Because contrary to what some people think those of us with mental illness can and do recover.

I never went back to my old life. In fact if I’m honest there was no old life to return. I literally had to start all over. And that’s not such a bad thing. But it’s difficult.

If you’ve landed on my blog tonight looking for encouraging words, I want to tell you you can get better. You can recover. You can live the life you dream about. It might be difficult to get there, but it’s possible.

No matter what circumstance you found yourself in because of your mental illness, you can overcome it. Don’t give up the fight.

People do recover.

Seeing the light in the darkness of depression

A lot of people struggle with something. Whether that’s having overly busy schedules, trying desperately hard to meet all of life’s demands and perhaps added challenges of dealing with life and a health condition. But what I’ve learned in trying to find a balance of all these things is that even in our most difficult times having hope can be the game changer.

In my role as a mental health advocate I often hear very challenging stories of people living with mental illness or their loved ones walking the journey with them. It’s not superficial conversations. These connections with other people are deeply personal. I feel grateful that I can be a person who can bear witness to the struggles of others, because even in those very trying stories having hope keeps people going.

Anyone who had ever been handed the card of depression knows how important finding something positive to hold onto gets one through the tough times. There’s a reason depression is the number one disability in the world. It causes the regular struggles in life to be much more difficult.

There’s an image I am using in my upcoming talk this week in Athens, Ohio. It shows an entirely dark room with a door open and a crack of light shining through. It reminded me of a day when I was sleeping 16 hours a day during a depressive episode. As I lay in bed I squinted my eyes when the sun slightly shined through the crack in the blind. A tear streamed down my face, as I held onto the hope that one day I would recover.

No matter your challenge, your struggle or the mountain your climbing, know that eventually if you keep striving toward the light-things will get better.

In my view hope is a life saver.

Humble lessons learned from my jail cell

“Guilt and shame played a large part in my inability to accept my progression of illness. I was so accustomed to being capable of problem solving, setting goals and accomplishing them. When bipolar disorder held me in its’ claws I felt so responsible. I felt like a failure. I had failed myself because there must have been something I could have done differently to have had a better outcome.” ~Jail Journal-January 18, 2013

Those were the words I wrote in a journal I kept while spending three weeks in a small jail cell in Montana. I usually don’t think too much about my time being incarcerated, but I shared my story today and give a talk next week, so I was looking for perspective.

I remember having these incredible realizations about what I was going to do with my second chance at life. I wrote about how I intended to help other people. I sketched out my vision for my future–and I’m actually living it as I write these words.

My humble reflection today is really about the lesson of acceptance. While I sat there in that cell I came to appreciate who I was as a human being. Seems like a strange place to find inner wisdom. But I used the time to write. It was my coping mechanism.

I set in motion coming to terms with how my untreated mental illness got me in such a jam.

“Guilty feelings nearly destroyed all my confidence and self-worth. Of course it did not help that I had gained 80 pounds from various medication side-effects and a wicked depressive episode. I had morphed into an unrecognizable person right before my very eyes and I hated the reflection looking back at me from the mirror.” ~Jail-1/18/2013

What I have come to powerfully embrace is that mental illness is not my fault. I humbly accept all of my life experiences as my journey. And the best part about all of it is…I no longer live in shame.

I accept me. Greatest lesson ever.