An Accurate Movie about One Family’s Experience with Mental Illness

“Mental health isn’t all of me, but it’s a massive part of my journey and a massive part of my whole being.” — Adwoa Aboah

I watched the movie, Canvas, last night, and I don’t think I’ve ever seen a movie that so accurately depicted the complexities of schizophrenia from so many different perspectives. Having grown up with a mother who had schizophrenia during a time when there were few resources or options to help her, I know first hand what it was like. I am glad to see a portrayal that was spot on for a change.

The movie was set in Miami, Florida and is about a woman named Mary who has schizophrenia, and the impact her illness has on her husband, John, their son, Chris, and most of all her own life.

The movie did an excellent job of portraying what it was like for John to move from having hope during the initial acute phase of his wife’s diagnosis with schizophrenia into a period of numbness, anger, and grief as he realized her illness was chronic and was not responding well to the options that were available at the time. John felt as though he had lost the person he married but it was obvious he still loved her very much. I’ve spent a lot of time talking with my dad over the years about how it felt to have your dreams and hopes ripped away by this illness. But I had never fully grasped the depth and intensity of the sadness he must have felt loving someone so much and “losing” the person who had been most precious to him. The woman he knew when he married her was different now and that was a tremendous loss. This movie honed in on the reactions, emotions, and coping mechanisms that John used to deal with Mary’s illness while trying to take care of his family. John faced mounting medical bills because of poor health insurance coverage of mental illness and job loss because it was hard to keep up with all of his responsibilities. This is a familiar story for families that have gone through this type of situation, and ours was no exception.

Although John was doing the best he could as a father, Chris’ needs often went unnoticed due to the magnitude of the situation. From a child’s perspective, the sadness, embarrassment, bewilderment, and fear are a daily fact of life. This movie realistically portrayed the experiences I had growing up.  I was angry at my dad for not paying more attention to me. I was sad to watch my mom being taken to the state hospital by the sheriff, embarrassed that the neighbors and my friends were talking about her, and I was ashamed of her bizarre behaviors. I was bewildered and didn’t understand why it was happening to our family and angry that my prayers weren’t being answered. Most of all, I had a hard time shaking my underlying fears. I feared my mom’s strange behaviors and her paranoia towards me, and I feared that I would some day end up like her.

The way neighbors, friends, and relatives responded to Mary’s illness in the movie resonated with me as well. People’s reactions to our situation ranged from abandonment, blaming, shaming, and shunning, to huge acts of compassion from the most unexpected people. We often felt isolated and alone and were especially appreciative of the people who stepped in to help, making us meals, babysitting my sisters, and keeping my mom company when she was having a tough day.

I have often wondered how it felt for my mom to be taken away against her will and placed for months at a time in a state hospital. It was painful to watch that aspect of her life being portrayed so intensely in this movie. I can only imagine now what it felt like for her to ripped out of the security of her home by the sheriff while resting peacefully on the couch, taken away from her husband and children, stripped of all privileges, and kept in such a scary place where she was treated more like a criminal than a patient. Especially since these acts actually confirmed her delusions that everyone was conspiring against her. The scenes in the movie of Mary sitting at the payphone in the hallway talking to her husband with despair in her voice were particularly poignant and reminded me of the phone calls we used to get from mom. And I, like Chris, often wanted to avoid talking to her, because I didn’t know what to say. I recall to this day how after my mom was released from the hospital the first time, she always carried a roll of quarters in her purse in case she had to go back and needed to call us.

Yesterday I awakened with the thought that I am tired of thinking about mental illness. I want to move on and live a normal life. I want to stop trying to be an advocate and let someone else take over. I want to put it all behind me and never look back. But the truth is, it feels like it takes more effort to clamp this part of myself down than it does to let it out. For so many years growing up, I was at war with myself, holding it all in, keeping it all locked inside, trying desperately to appear “normal” and to become “normal”. I struggled with severe anxiety and an eating disorder from my mid-teens through my late twenties.  It took years to recover, and much longer to deal with the emotional scars that were prone to re-surface during times of stress. After I became a nurse, I realized how many others are facing the same challenges or much worse, and my desire to do something more to help was reawakened.

And then other family members began to have their own struggles with depression, anxiety, suicidal ideation, and eating disorders reminding me there is still work to be done. I sometimes feel overwhelmed by it all now, but I know that I must persist in whatever way I can, allowing myself to take breaks when it becomes too much. I am reassured by the progress that has been made, and the way the next generation has so openly tackled the issues, using social media to shatter stigma and advocate for something better. I know that when I am ready to pass the baton, there will be others ready and willing to keep going.

For today, I will appreciate the strides that have been made and I will be grateful for all the grace and beauty in my life.

Advertisements

I’m Back

Santorini, April 2018; honeymoon

I’m back. In the five months I’ve been off work, I had aspirations to write a book, blog more, figure out my true calling in life, go on some wonderful adventures, get involved and volunteer more in the community, and most importantly find my voice. I had some great starts, but a small inner voice of self-doubt kept nibbling away at my resolve, and a bigger voice called “life” kept me grounded in the real issues of the day.

No matter how much I try to reinvent myself, those cleverly disguised doors that appear to be opening to new vistas bring me right back to where I started. As much as I want to deny it or fight it, or run from it, I am forever a mental health advocate.

Since December, I have been trying to lend support to loved ones as they struggle with serious mental health crises. It is heartbreaking and yanks at my soul in a way that is hard to describe. It brings me back to the days of feeling helpless as I witnessed my mom’s descent into paranoid schizophrenia. In the years since then, I have learned that mental illness comes in many forms, major depression, suicide, mood disorders, obsessive compulsive disorders, eating disorders, panic attacks and anxiety, none of them less terrifying or heart breaking than the other. The people I know who have struggled with one of these are too many to count, and I know that each person is doing the best he/she can with limited resources.

When it comes to helping someone who is going through a mental health crisis, I feel rather inept, as I walk the finely dotted line between thinking I have the answers to knowing I don’t have any answers, unsure about whether to encourage or dispense advice, to show false optimism or tough love. Shoving my own personal feelings deep down so that my disappointment doesn’t show through when it seems like someone I love is slowly being ripped away from me by some mysterious illness.

I have been in a dark place before. I have worked my entire life to never go there again, knowing the fragility and resilience that exist within me. I have invested countless hours in counseling, reading self-help books, attending support groups and conferences, developing my spirituality, and conceding to taking a tiny pill to treat my anxiety disorder. I don’t understand why anyone wouldn’t work as hard when faced with their own mental illness, but then I grew up with the consequences of ignoring such illness first-hand, watching my mom go in and out of one crisis after another. Her choices were limited and there was no simple answer. Her only real choice was to be treated like a criminal, and who would want that?

I am hoping soon to become part of an organization that is working on a small piece of the puzzle to help correctly diagnose and treat mental illnesses. I wonder if I have the will to keep on immersing myself in mental healthcare, having spent a lifetime trying to figure it all out with some moments of real sadness. Yet, I don’t seem to be able to get away from it; therefore, I must find the strength to forge on, searching for better treatments and educating people to fight the stigma that works against finding answers.

So here I am, back again. A mental healthcare advocate, blogger, and warrior of sorts.

Why Do I Blog About Mental Health? – A 2-part Question

Blog for Mental Health

Part A – I love to write

child-writing-credit-istock-91513956-630x420I am obsessed with writing I still remember my first diary that I kept tucked under my pillow.  I remember how it smelled, how it felt to put the tiny key into the shiny gold key hole, unlocking a space where I could write down all of the things that were swirling around in my head.  I remember thinking that my brain was like an attic, and every time I wrote it felt like I was sweeping up its dusty corners.  I felt like the little mermaid swimming into her secret world under water, safe from everything above the ocean’s surface.

sisters at beach

Writing gives me something to do with all the memories that pop up unexpectedly at inappropriate timesI have learned from experience it doesn’t pay to impulsively spout off a random story about my mom’s propensity to hear voices at the dinner table, when others are sharing their stories about family mealtime.  The awkward silence and puzzled looks on people’s faces quickly taught me to refrain from this type of sharing.

Writing is an acceptable way to deal with my obsessive thinkingMost days I wake up with a bunch of thoughts coming down the shoot, like chocolates on a conveyor belt.  I have found that it is easier to write them down than to engage in the many other unhealthy outlets that I have experimented with over the years.  There are the words I share here in my blog, and the ones I reserve for my journal.   Both venues provide an outlet to release the thoughts and feelings that visit themselves upon me every day.

Part B – Mental Health is Important

Mental illness impacts all of our lives – Since I have opened up and shared with people about the mental health issues in my family, many people have begun to share their experiences with me.  It turns out that at one time or another most people have experienced a mental health issue or have had a family member or close friend who has grappled with depression, anxiety, eating disorders, bipolar, alcohol or substance abuse, or any of the many other neurological imbalances that can affect the human brain.

convention_Header

Relief from symptoms and recovery are possible – We can’t give up on searching for the best treatment options. These things are within our reach if we support organizations, legislation, research, and individuals’ efforts to seek optimal mental health.

em skatingBlogging provides a positive outlet to cope with my own personal experiences –  Although it has been many years since I had an eating disorder, the underlying issues of anxiety and depression must always be managed.  I still live with the scars left from living with my mom’s mental illness (schizophrenia), and still strive to learn from my daughter’s struggles with depression, a suicide attempt, and an eating disorder.  For some reason, my life has been defined in part by these experiences, and I want to maintain a positive outlook.

Blogging is a great way to connect with other people who feel passionate about mental healthI appreciate and celebrate all of the many wonderful mental health bloggers who open up their lives, hearts, and souls, giving a glimpse into the many facets of living with mental illness.

champagne_glasses

CHEERS TO ALL OF THE MENTAL HEALTH BLOGGERS

“I pledge my commitment to the Blog for Mental Health 2014 Project.  I will blog about mental health topics not only for myself, but for others.  By displaying this badge, I show my pride, dedication, and acceptance for mental health.  I use this to promote mental health education in the struggle to erase stigma.”

 

The 85% You Don’t Know About Someone

scott playing trumpet

Yesterday I received in the mail a 5″x8″ envelope from my sister-in-law containing some songs my brother had written and a couple of poems written by my mom.  I read without emotion, pushing the thought of their untimely deaths to the corner of my heart that has learned the art of numbing itself.  As I skimmed the sequence of lyrics drafted into two columns on the lined paper, I was most curious about the ones that were scratched out.   I couldn’t help but to think “Come on Scott, this is so cliché”.  Without the tune to go with it, the lyrics seemed somewhat remedial.  I was  disappointed that this is all that was left of the music career my brother never was quite able to launch.

scott's trumpet

For the past five years I have been obsessing about asking for his shiny silver trumpet, believing it was the one object that would keep me connected to him.  I was heartbroken when I found out it had been donated.  We had both played trumpet for years, although his interest and talent in music took him much farther than I, who used it like everything else in my life, merely as an instrument with which to nourish my social life.

sj1974 editedUnable to register the phantom pain created by the memories of my lost brother, I read with mild curiosity the two poems my mom had written.  I felt a bit uneasy seeing this vulnerable side of her.  I had catalogued her as an illness, schizophrenia, for so long that the words she had written seemed more like an anomaly than something she could have really been feeling.  It was much easier to think of her as some character in a scary movie than as a human being who had a wide spectrum of feelings just like the rest of us.  She was the person who banged her head on the floor and spun around the family room in circles for reasons not apparent to us.  The person we laughed at and made fun of for her strange behaviors like accusing the dentist of putting rocks in her head and planting a microchip to the B channel in her teeth, or telling the waiter at our favorite restaurant that she smelled condoms.  It was hard to imagine that this woman who had pressed her nose up against mine, face red with rage, screaming that I was the devil, actually had a soft human side.

sj1974 edited

My mom’s mental illness was only a part of who she was.  Like skin that makes up about 15% of our bodies, her illness was what we noticed most about her, and therefore we let ourselves believe we had learned everything we needed to know.   Untreated, it was difficult to see past the illness, and despite my efforts to connect with her when I was younger, I was never able to break through that protective layer.  That’s why these simple poems that she wrote mean so much to me now.   I wanted to believe there was more to her and now I know it was true.

NAMI | About Psychosocial Treatments

PICT0030

The article below from the NAMI website contains some great tips about treatment options that can be used alone or in addition to medications, depending upon the nature of one’s mental illness.  Recovering from a mental illness takes time, effort, dedication, and as much support as possible to prevent one from becoming discouraged with the ups and downs of the process.  Don’t be afraid to try some of these suggestions, especially if you feel like you are stuck in a rut and unable to move forward.

NAMI | About Psychosocial Treatments.

Letter to My Mom

red_rose_(20)Dear Mom,

It is hard to believe it has been twenty years today since you passed away.  There were many times during the past 20 years that I could have used a mom to help me figure things out.  There were many times when I was growing up and your illness was at its peak that I longed for the loving touch of a mother.  I don’t hold it against you.  It wasn’t your fault that you had such a devastating illness with no real options for treatment.  I always felt empathetic towards you, even when your illness made you say and do things that were hurtful to me.  

I hope that someday soon people will not have to go through what you and our family went through because of some stupid disease.  Researchers are getting closer to figuring it all out, and studies are confirming that schizophrenia is a neurological condition like Parkinson’s and epilepsy, not something that can be controlled by human willpower.  I hope this knowledge will help to identify ways to relieve the symptoms and possibly even cure this disease that has ruined many people’s lives.

It is sad that you passed away at such a young age, only 3 years older than I am now.  I can’t imagine leaving this world behind when I have so much to celebrate; a beautiful new grandchild, my two daughters who have grown up to be such wonderful women, family and friends that I  treasure, and the successes I have had in my career and personal life because of you.  Yes, you didn’t know it, but all of the tough times you and our family went through made me stronger and more determined.  I want future generations of our family to continue to grow and be better than the generation before, and to this end I vow to lead the kind of life your illness prevented you from living.

I’ll never forget the last time I saw you and how we said good-bye.  We shared few words but I felt a pull between us.  The bond of a mother and child, no matter how tumultuous the relationship, is something that cannot be broken easily and in the end it was palpable through all of the regrets that were left unspoken between us.  I want to restore what was lost because of an illness that was out of our control.  I can best do this by focusing on finding ways to enlighten people about mental illness and contributing my time, effort, and resources to advocate for effective treatments for illnesses like yours, that have been so difficult to treat. 

This blog was created not to dwell on the past but to honor your memory.  In this, the fifth decade of my life, I realize that our stories are told whether we say them out loud or live them.  I am no longer ashamed of where I came from and want to tell my story in order to help others with similar experiences.  My mission is to shatter the prejudice and ignorance that led to the mistreatment of the mentally ill throughout time.  I can’t help but to feel angry about the people who have gone before you that were ostracized, isolated, institutionalized, tortured, exorcised, and killed due to people’s fear and ignorance about mental illness.   Society has made a lot of progress thank goodness, but the misconceptions remain and the answers that will lead to a better quality of life for people with schizophrenia and similar illnesses are not quite within our grasp. 

Under the care of a loving father, your children were able to lead a relatively normal, happy childhood, in the comfort of the home he provided for us, nestled on a quiet street in the suburbs.  In that community you were protected from some of the dangers that many with mental illness face, and we were able to thrive and find healthy outlets when things got challenging.  Because of this, I am now in a position to try to make things better through my advocacy efforts. 

Hardship is a part of life that we all encounter at times.  You showed incredible resilience despite the daily hardships you faced.  I do not regret being your daughter and being a part of that experience.  

With Love from Your Daughter,

Amy

 “And so our mothers and grandmothers have, more often than not anonymously, handed on the creative spark, the seed of the flower they themselves never hoped to see — or like a sealed letter they could not plainly read.”Alice Walker

This fact sheet was posted on the NAMI’S website and shows the far-reaching impact of mental illness.

Stop Minimizing Mental Illness: Worst Things to Say | Breaking Bipolar

Stop Minimizing Mental Illness: Worst Things to Say | Breaking Bipolar

I read this on the HealthyPlace.com website and thought it made some excellent points about the importance of providing support to those with mental illness in a non-judgmental way.

.

Tragic Consequences Illustrate Need for Change

When I heard about the beating death of Kelly Thomas, a homeless man who had schizophrenia, as he cried out for help and screamed for his father, I experienced a deep sense of frustration and defeat.   This video clip of the incident brings to mind many questions and is a clear illustration of how far we still have to go to help the mentally ill.    Limited  treatment options and  resources, and lack of awareness about the nature of mental illness still contribute to the neglect and mistreatment of those who need help the most.   Until mental health is treated exactly the same as any other health condition, these atrocities will continue to happen.  I wonder if the police officers would have  treated someone having a diabetic crisis or heart attack the same way.  

I Thought I Could Change Her

Gradually the mom who spent hours rocking in a chair or sitting at the table playing scrabble or solitaire was replaced by the mom I had known before she went into the hospital.  Convinced there was nothing wrong with her and distressed about the magnitude of side effects she developed while taking the large dose of anti-psychotic medication, she decided to go off of it, and her paranoid delusions returned with a vengeance.

Meanwhile, I had gone from my comfortable world in junior high school surrounded by a small group of friends to entering a large high school and being in classes where I knew nobody.   My shyness and insecurities increased as did my weight from turning to food for solace.  I blushed whenever someone spoke to me, and walked the halls alone in between classes, scanning the crowds for any familiar face, but to no avail.  As the cold winter months descended upon me, I felt a sense of doom whenever my alarm clock rang in the morning and I had to get out of bed to go to school.  Fortunately I still had my friends at church and attending church functions as much as possible became my act of rebellion, as my mom forbade me to go because she thought it was a conspiracy.

My dad worked long hours starting up a new business and struggling to pay the medical bills, and my brother was a senior by now and rarely came home.  He had no tolerance for my mom’s behavior and would leave whenever she acted out.  I assumed the role of protector to my younger sisters and tried to spend as much time as possible with them.  The more out of control I felt at home and school, the more I developed rigid, black and white thinking about how things should be.

My mom and I had never gotten along well, and I developed a stubborn obstinence towards her in my adolescence that led to even more intense altercations.  The avoidance that had kept me protected as a younger child was replaced by a confrontational attitude.  Unable to truly understand her illness, I was desperate to make her get better.  I thought if I reasoned with her about the delusions she would finally realize they weren’t true.  The more anxious I felt, the more I focused on trying to change her, resulting in arguments that lasted for hours.   I needed her to get better so that I could feel better.

The only thing that filled the void was eatinging my favorite foods, but I soon became acutely aware of the resulting weight gain and tried to exert control by fasting for several days.  Each day I would resolve not to eat, but each day would end without success.  I began to feel hopeless, unable to change my mom, and unable to change myself.

Why Did This Happen?

I haven’t written in a few days now.  It seems I’ve stalled out in contemplating the next step, which will be the daunting task of revealing and examining my own experience with mental health issues.   Up until this point, I have presented the perspective of living with someone with a serious mental illness like schizophrenia, and I will continue to write posts on this important topic.   Nonetheless, since the title of this blog is Exploring Mental Health Issues, I would be remiss if I didn’t talk about the challenges of other types of mental illnesses which may occur during the course of one’s lifetime.

Like it or not, just as the organs in our body are vulnerable to any number of illnesses when under stress, our brain is no different and is vulnerable as well.  Coping with various types of stress over prolonged periods of time can make us susceptible to depression, anxiety, addictions, and many other emotional and mental health issues. This can be compounded by a genetic predisposition as well.   In my next blog, I’ll be taking a leap into talking about the coping mechanisms I acquired and how they led to my struggles with anxiety and depression.

Curiosity is lying in wait for every secret.
Ralph Waldo Emerson

But before I go any further, I’d like to switch topics and talk about another common theme that came up on numerous occasions as our family struggled to deal with my mom’s mental illness.  Over the years, I remember my dad questioning why this could have happened to my mom.   I had often asked the same question in the small circles of the church groups I attended, and the answer was usually the same.  “It is not up to us to question God, there is a reason for everything”.  Even though that answer stung, I soon found myself responding to my dad’s question with the same answer.  Eventually I felt guilty for even asking the question, as the answer seemed clear – don’t question God.  

I have found two levels to that answer and have learned to live in peace with both.  First, it is true that it really does no good to argue with reality.  It exists whether we accept it or not.  The reality of the situation is that my mom did have a mental illness, and I can ask why this happened to her all day long and still not be any closer to an answer that makes sense.  On a deeper and more reassuring level, I believe that asking why is useful when we aren’t looking for someone to blame but looking for constructive ways to move forward.   We were given an innate sense of curiosity for a reason — to learn and find answers.  When we are no longer immobilized by feelings of self-pity and asking “why me”, we are able to focus more clearly on finding solutions. 

Depending on where our talents lie, searching for solutions may take on many different forms.  Doctors and scientists are using their God-given talents to find the causes and cures.  Others in the medical profession are using their talents to find new ways to provide treatment, care, and hope.  Family and friends seek inner strength to help their loved ones and often volunteer to share their experiences with others going through the same thing.  When we are able to frame the questions properly, we are empowered to do great things, and therein lies the ability to make progress. 

I am happy that I am no longer searching for something or someone to blame, and that I am free to ask questions and be a part of the solutions.