Elephant in the Room, Part 3

I learned about the elephant in the room, the situation everyone knows about but no one discusses it, when mental illness entered our life in 2004.

In reality, it may have been there before then, but I didn’t know the signs. As a result, it entered in silence, much like the elephants that entered our campsite in the wild in 2011.

I think the elephants are magnificent creatures. For one thing, they live in families with a matriarch at the helm. The older the matriarch, the more successful they manage their family. Her experiences help the herd adapt to the changes in their circumstances. Why? Elephants have an amazing memory, according to Scientific American. She uses it to the advantage of the herd.

When schizophrenia attacked our daughter, Amber in 2004, our family reacted in a way that was similar to a matriarchal pachyderm. We surrounded her. Our experiences guided us to protect her and help her into recovery. Our extended family and friends rallied around us and we used a herd mentality to fight off the invader and chase it into submission.

I think elephants resemble mental illness. They can enter in silence.

As a result of my experience in the wild game parks in Africa, I learned they can leave a path of destruction behind them. Left unchecked, they ravage a landscape in search of food. Mental illness can do the same. Sometimes, if left alone with no advocate or management, it can devastate lives.

destructionThere’s s a fable from India about six blind men in a village. They heard about an elephant and set out to discover it. Upon their return, they had six different reactions about what an elephant is like. Each man touched a different part and knew only how that section felt. They couldn’t agree on what it resembled – a wall, a pipe, a tree, a pillar, a hand fan, or a rope. In reality, each man was correct for it was what he had observed. So much like mental illness, each person, each family experiences it in a different way. That is what they know, therefore it is correct for them.

So I don’t compare our journey through mental illness with any other one. Each of us are on a journey, but mental illness shares  common symptoms. I think we all feel frustrated stressed, heart-broken, hopeless, and at times, alone. We get angry at the unfairness as it strikes those we love. But I can take my feelings and turn them into compassion, support and a resilient attitude. I can strive to continue to learn about mental illness, give to research so that scientists can unlock the answers. And I can dream of the day that everyone can enjoy a life spent in recovery.

I vow to continue to bring awareness to the elephant in the room, to spread a message of hope, to erase the stigma that surrounds mental illness and to reach out to those who struggle. I want everyone to know that it is a biological issue, not a character flaw. One day I hope to see everyone who battled mental illness strut and wear a t-shirt that states, “Survivor.”

Sticks ‘n Stones

Sticks and stones may break my bones, but words will never hurt me.”

I heard this childhood rhyme on the school playground many times while I grew up. Usually it was after one classmate hurled an insult at another.

I thought about these words after a recent social media post left me feeling unsettled. I had read a Facebook post by an acquaintance that read, “Am I Bipolar, or what?” The person went on to question her choice in music. I groaned as disappointment set in.

Really? I thought how can you compare a choice in types of music with Bipolar- a debilitating brain disorder? I felt the comment made light of an illness and perpetuated stigma – as if a person had a choice to be Bipolar or not. I made a public comment expressing my concern with the choice of words and the spread of stigma. This wasn’t the first time I had expressed my displeasure about making light of mental illness. But in the past, I sent it as a personal message. I’m not sure why I didn’t choose this route and instead posted my comment on the person’s page that day. There wasn’t a reply, so I didn’t add anything further.

Later that day, I had a phone call to tell me that my comments on the post had upset my Facebook friend. The caller admonished me, pointing out that it was indeed a correct use of the phrase, bipolar. The caller had looked it up and read the description from the dictionary.

I didn’t intend to offend my Facebook friend, so once I knew that I had, I sent an apology in a private message and removed my post. My friend’s response assured me my observation was understood – that it was a result of my well-publicized passion for mental illness. Somehow, I didn’t feel better. I no longer believe the childhood chant. Sticks and stone can break bones. Words can hurt. Period. I had just done it to a friend in my effort to educate. It made me think about words and how they hurt.

Social media enables us to use words to hurt on a broader scale. Words that drive a nail into our wall of defense, now seen by scores of individuals are repeated and hammered permanently into our self-worth and we tend to believe them.

The Facebook interaction left me pondering the tide of word censorship, the use of words and my view on the subject. Have we become a society that is too sensitive to common words and their new implied meaning? I thought about bipolar, the word that started all of this and decided to explore it. Before 2005, I wouldn’t have given the word a thought. But, in 2005, I became involved in the world of mental illness. I’d always known that it existed, but I didn’t think I’d become an advocate for those affected.

This attitude changed in 2005 when I learned about the world of mental illness by default. I had a stream-lined education when schizophrenia manifested in our twenty-four-year-old daughter. But through the grace of God, I found the organization, NAMI (National Alliance on Mental Illness.) Through this group, I found guidance and understanding. My attitude toward mental illness changed. Along with that came an awareness of my own use of words. I no longer tell someone, “You’re delusional,” when I think their logic seems confused. I’d witnessed my loved one suffer the mental anguish that accompanies delusions. I catch myself before I tell someone, “You’re crazy,” and replace it with “I think that’s silly” or “I don’t agree.” Why? Because too often I’ve heard it referred to as a component of a mental health condition.

I decided to explore word censorship by typing bipolar into the google search engine. The first definition referred to having or relating to two poles or extremities, such as north or south poles. The next one stated: a biological disorder of the brain. Most people call it mental illness. Reading this made me think about my use of words.

This led me to another question: when did bipolar become a term for the previously named Manic Depression? More internet research gave me the answer. On April 14, 1980, the Diagnostic and Statistical Manual of Mental Disorders (DSM) changed the classification diagnosis – thirty-seven years ago.

So, with that knowledge I had to ask myself again, “Am I over-sensitive about the use of the word bipolar? And if the answer is yes, do I have the right to call people out on social media? Does this help the cause or just hurt feelings?

I stewed about it for hours before I came to the conclusion: I rarely hear the word bipolar used anymore except in reference to mental illness. Yes, bipolar can mean opposites, such as north and south poles with magnets or undecided because of opposing views. But I also realized for most of my life, I’d only heard a more common phrase, “polar opposites” that referred to indecision. But the most important revelation: I can only control my own words.

“Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen.” Ephesians 4:29 I like this verse. It says a lot to me.

When I publicly chastise others for their use of words, it sounds judgmental. Is that building them up? Isn’t a better approach to lead by example? Or to share my view privately with an explanation why I prefer to use alternate words?

I know me. I will wince when I hear others make fun of mental health hospitals, call someone delusional or crazy, or refer to indecisiveness as bipolar. But I will hold my tongue in public or keep my fingers off the keyboard. A better approach for me is to explain my view on the use of words with compassion and a gentle spirit. In addition, I plan to choose my own words with care, being mindful of how they will affect others. Because sticks and stones may break my bones, but my words can also harm others.

WOW!

good things can happen from bad circumstances when I learn from them; when I share them with others.

I’m doing a happy dance today because of yesterday, May 24.

Let me explain. Earlier this year I submitted my book, Broken Brain, Fortified Faith to two different awards. One award: the Catholic Writers Guild Seal of Approval (SOA.); the second one: the coveted Selah Award.

What are they?

From the website for the SOA: “The purpose of the Catholic Writers Guild Seal of Approval is to help Catholic bookstores and venues in their determination of the Catholicity of a work. This reassurance from a professional organization can assist authors in marketing alogo-color-cwg-soa-copynd promoting their works. Books are also judged by their editorial integrity as well.

Readers can be assured that SoA books will not offend their faith and have a certain level of editorial quality.”

At the end of March I received notice that Broken Brain, Fortified Faith had received the SOA.  I did a happy dance!

On May 2, I received an email that Broken Brain, Fortified Faith had made the finalists list for The Selah Award. From their Facebook page: “The Selah Awards, which are awarded annually at BRMCWC, are awarded to books within Christian publishing that are considered excellent within their genre.”

Talk about excited!

Last night, the Blue Ridge Mountain Christian Writers Conference (BRMCWCSelahs_Seal_WINNER_2017[3098]) announced the Selah awards for the top books in each genre. Since I couldn’t go, I tuned in via twitter which posted as they were announced. I’m glad I was alone during the awards. As I read my name in the twitter feed, “Winner, Memoir, Virginia Pillars — Broken Brain, Fortified Faith (Familius) contd,” I cried tears of gratitude  –  and no one watched.

If you’ve read this blog, you may understand that I didn’t think of myself as a author. I didn’t write much until I hit my 50’s. (Yes, you can teach an old dog new tricks.) Even as I met with success, I didn’t consider myself in the same category with the award-winning authors. I just didn’t. I’m too new in the world of writing and publishing.

This morning, after I calmed down a bit I picked up one of my daily devotionals. I sat stunned as I read yesterday’s reflection. (I hadn’t taken the time yesterday –  shame on me.)

As I read the words written by Twila Belk in her book, Raindrops from Heaven, I had a feeling of empowerment.

May 24When I work in tandem with the Holy Spirit, powerful things happen. My mouth moves, and messages come out that I didn’t even have in my head. And those messages impact lives. It’s so much fun! Thank you for giving me stories to tell and for the power to get them said.”

“It IS fun!”

Don’t get me wrong, the story I wrote was NOT fun. Anything, but, and I’d never wish the situation on anyone. But happen it did, and to our family. But the second installment of my story is fun. The writing, the publishing, the awards! Now, I truly believe even when I didn’t feel capable to write and share our story, the Holy Spirit guided me. I asked, listened and then moved forward.

If reading our story, or my thoughts in this blog helps another person, then I feel it gives the journey I took meaning.

Rejoice with me. It can happen. And to top it off, the award came during Mental Health Awareness month. Broken Brain, Fortified Faith shares my struggles as my daughter battled schizophrenia. Now, I hope, countless people are aware! Plus, as a final bonus, I get to put award stickers on my book and my press release reads: “Award-winning author.”

Wow! Somebody pinch me.

One Mother’s Story

…the cruel nature of mental illness. One family who did everything to help their daughter.

Today I want to post another mother’s story.  A librarian I met recently sent me this link to a regional newspaper, The Cedar Rapids Gazette, where this story appeared during Mental Health Awareness Month. It illustrates the cruel nature of mental illness. One family who did everything to help their daughter. They loved her, they enveloped her with support, they searched for the proper treatment and doctors. And yet, recovery continues to elude them. And this mother’s heart remains shattered.

One Mother’s Story

My heart feels heavy for this family. Even though I don’t know them personally, I feel as though I do. Their story shares so many similar traits with other families I meet. And my heart continues to break with theirs. But sitting around in sadness doesn’t help the situation.

I can only resolve to remember that we, as a culture, have so much work to do. I personally feel compelled to pray for answers for others who battle each day and their families. I want to support the families and the individuals who feel hopeless and helpless in the face of an unrelenting, cruel illness. I vow to strive to bring awareness to those who misunderstand this biological illness and somehow think it’s a character flaw. I want to continue to donate to help fund the research to unlock the mysteries of the broken brain.

Mama Bear…

As the woman shared her story with us, I knew we had a Mama Bear in our midst.

As I go out and speak with people at libraries, book clubs, and organizations, I meet some amazing people. Last night was one such night.

The first woman who joined us came because she thought I was the author, Nancy C. Andreasen, MD, PhD who wrote The Broken Brain. This book revolutionized how we look at mental illness. The gal who joined us last night saw the title of my book , Broken Brain, Fortified Faith, on a library flier and thought she came to meet Dr. Andreasen.  I can see how the two books could be confused, and I must say – I didn’t ever mean to put myself in the same category as Dr. Andreasen. I read her book The Broken Brain at the beginning of my journey with my daughter. I learned so much from this wonderful woman whose writing taught me that my daughter’s brain was broken as the symptoms of schizophrenia manifested in her. Because I read The Broken Brain, I could react with compassion, instead of anger. And so, I feel honored to be mistaken for her.

An understandable mistake brought this woman, and the two other people she enticed to come thinking they would meet the author. As you might imagine, I thanked them from the bottom of my heart for their time and attention. They added much to the discussion. I hope by the end of the evening, they were glad that a mistaken identity had taken place and felt our conversation was worth their time.

Also joining us last night was a Mama Bear. I’ve read never to mess with a mother grizzly bear and her young. According to bear.org, 70% percent of killings by grizzly bears are by mother bears defending their cubs. It won’t end well, for the instinct of a mama bear is to protect her cub at all costs.

As the woman shared her story with us, I knew we had a Mama Bear in our midst. By this I mean, she protects her daughter, fought for her and for the proper treatment she knew her daughter deserved. This amazing mother is still in the fight for her child and I can tell that she will defend her daughter as their story progresses.

This woman left me filled with hope. One day, I hope all families will react as this Mama Bear did and continues to do. She advocates for her child. She demands a treatment plan instead of just a release from a facility. She stands by her child. She prays for her child. And she gives her child freedom while at the same time she watches out for her. So much like a mother bear in the wilderness who lets her cub find food as she keeps a watchful eye.

In a perfect world, everyone understands that mental illness is not a choice. That loving them as we strive to find the correct treatment for them is the best way to handle the situation. The mom I met last night illustrates to me what the world could be. She works to learn everything she can about what her child faces and shares their needs with those around her. She brings awareness with her everywhere she goes. She’s not ashamed. And she loves her child through the hard days and looks ahead for better days to come.

Some day…some day.

Until then, let’s work as hard as the Mama Bear I met last night. Not only for our children, but for everyone’s child.

I live in hope. And I’m sure glad I met this mom.

Did you see it coming?

I feel privileged to travel and speak to groups about our journey through schizophrenia with our adult child, I hear questions that share common ground. I’ll try and answer some of them through the month of May, National…

I’ve been asked this question quite often:

  1. Looking back, did you see anything in her childhood that would indicate she could develop schizophrenia?

No, I didn’t see anything that I feel would indicate a predisposition to schizophrenia. As a toddler and young girl, she liked things neat and orderly. I think of her then as “particular about things.” She kept her room neat and tidy. She paid attention to details. I remember one incident when she was gone overnight and we let a guest use her room for the night. When he left, I thought I had put everything back in the exact place. But she noticed the tissue box had been moved. The day she turned thirteen, I think she changed overnight. She went from “always neat” to “her clothes carpeted her bedroom floor.”

Did I see anything else? Perhaps, one comment from her sixth-grade music teacher gave a slight indication. “Watch her,” she mentioned to me one day as I volunteered in the school library. “I see similarities in her that I see in my daughter who battles anorexia nervosa.” I remember feeling bewildered. I’m guessing I said that I’d watch her, but I didn’t see anything that alarmed me and quickly forgot. That comment was probably the only thing that I would call an indication of something looming, but dit it point to schizophrenia – no.  I didn’t remember it until years after she became ill with schizophrenia and I began to write about our journey. Basically, Amber seemed like any other teenager – busy with school, extra-curricular activities, and she enjoyed time with friends.

2. Do you have schizophrenia in your family history?

Yes, my husband’s aunt and my first cousin. But, if I look at statistics alone, it makes sense. One in one hundred people battle this illness. I have more than one hundred relatives, including aunts, uncles and cousins. My husband comes from a large family, too. For each of us to have a relative with schizophrenia follows the law of average. Amber developed it when medications and treatments had advanced beyond the treatment available to the aunt and cousin. As a result, she recovered and went on to resume a life similar to other women her age. Our other relatives – the aunt spent her life in an institution, and the cousin lives in a group home.

 

More Common Questions

I feel privileged to travel and speak to groups about our journey through schizophrenia with our adult child, I hear questions that share common ground. I’ll try and answer some of them through the month of May, National Mental Health Awareness Month.

 

  1. How did her brothers react?

Like us, they were concerned and wanted to help her. Our eldest son was the only one who lived close by. He stopped often to check on the situation and offer suggestions. He suspected schizophrenia and was instrumental in helping us move out of denial and into action. His support meant the world to us, even when he had to do the hard things. Our second son lived two hours away and our youngest son lived several states away. They called, learned what they could and offered phone support as best they could. They read books to try and understand what our family faced. After my sons read my book, Broken Brain, Fortified Faith, all three of them said, “I didn’t know it was this bad.” To which I replied, “How could you know if I didn’t tell you?”  If I’m honest, I didn’t know how. I could only try and cope with the situation.

      2.  Why didn’t you tell your family and friends at first?

At first I was embarrassed by Amber’s illness. I thought she could snap out of it if she really tried. But I was wrong – she couldn’t. She was trapped in a whirlpool of madness that sucked her down where we couldn’t reach her. In less than a month, her mental state crumbled until she became convinced that there was a conspiracy against her life. Every magazine, newspaper, and television program was about her. We felt we had to tell our families and closest friends after she verbally attacked another family member during a gathering. We opened up to our families via e-mails to keep them informed.  As a result of my frequent notes to them, our families and friends supported us in every way they could. They sent letters, notes, cards, visited Amber in the hospital, and someone even brought a casserole to our home.

Looking back, telling our families and friends was the one of two best things I did for us, and for Amber. We found the National Alliance on Mental Illness, plus we shared our situation with those close to us. These two things brought the support, love, and prayers we craved. And yes, I know, I have amazing people who surround me. Not all people react as they did and I am grateful for our family and friends. They are a gift.