A look back, a look ahead.

January 4, 2019

My house still looks like Christmas. Decorations adorn the mantel, the lighted trees still bring a smile to my face, and the nativity sets remind me why I celebrate Christmas. I bask in the joy of the season until January 6, the feast of the Epiphany when my faith remembers the three wise who came bearing gifts for the infant, Jesus.

I remember a past Christmas as I look to the new year ahead.  Now, I see it with clarity. I understand why things happened the way it did. I can see how my actions affected the situation. Let me explain.

Fourteen years ago, the joy of the Christmas season eluded me. Our daughter lived in the clutches of schizophrenia as her brain betrayed her. She lived in a world of paranoia, fear, and confusion. We’d moved her back home with us, but we didn’t understand what she faced. Our Christmas celebrations teetered between explosive and devastating as her brain disorder caused her to fling unfounded accusations at family members. Fears of a disjointed family unit swirled in my thoughts. Would our family unit survive? How do we survive?

We sought help from others who’d walked a similar path before us. We didn’t turn against each other. Instead, we worked together to find her the treatment and support she needed. Friends and family lifted our spirits as they assured us of their prayers as they visited us and Amber when she spent weeks in a hospital, brought her small gifts, and someone even brought a casserole to lighten our load.

As I look back, I know God worked through them and we weren’t alone, even though I felt like it.  Over the next few years, Amber learned about her illness, accepted it, and the treatment she needed for long-term recovery.  Fourteen years later, and I continue to thank God for the miracle of her recovery. She works full-time, has a social life, and makes me proud with her determination to give back to the world around her.

Because of my experience, I developed a new purpose. I want to reach out to other families caught in the snares of mental illness. I want to walk beside them and give them hope. This month, support groups resume in our area and I plan to attend the sessions. Together, we can learn more about the brain and how to help our loved ones – and ourselves in the process.

In a quest to grow as a person, I set some goals for 2019:

1. I continue to write a daily devotional book where I deal with mental illness. In it, I think about Bible verses and the lessons I’ve learned about faith as I struggle with the messiness of life.  I strive to steady my gaze on the Lord and invite readers to join me. I don’t know if a publisher will pick it up. I hope it happens. Plan B and Plan C bounce around in my head if it doesn’t.
2. Last year, I started my first novel. I vowed to finish it this year. I’m excited to see how the story ends.
3. My TBR (To Be Read) pile looms above me on my bookshelf by my chair. My list to read this year includes biographies, fiction, and spiritual enrichment.  Nonfiction/Biographies: Crazy by Pete Early; Fiction: a couple of  novels by Lisa Wingate that I picked up at a yard sale, Lilac Girls by Martha Hall Relly, Orphan Train, and Last Girl Seen by Nina Laurin; Spiritual Enrichment: Thomas Merton, Miracles in Our Midst,  Having a Mary Heart in a Martha World, Having a Mary Spirit in a Martha World, and several books of prayer reflections. When I read a variety of authors, I learn more about the craft.
4. Last month, I started on an organization spree for my house. It’s something that no one else notices, but it sure makes me feel wonderful to have nooks and crannies in a neat order. I plan to continue until I make it through each closet. It may take more than this year, but I’ll stay calm and carry on.
5. I want to improve my stamina. My children gave me a wrist device to check my steps, etc. I get up and walk when it tells me I’ve sat too long. My last goal for 2019 is to meet the daily challenge it gives me in steps and stairs. So far, so good. Only 361 days to go.

Thanks for stopping.

Bye for now.

Virginia

 

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Happy Mother’s Day to me.

 

My daughter  Amber has schizophrenia and I’m glad I’m her mom.

“She’s lucky to have you for parents.” “She’s doing well because of you.”

I’ve heard this often. I usually answer them, “I’m glad I’m her mom.”

Schizophrenia tried to steal Amber from the life she envisioned for herself. Her brain disorder bombarded her with symptoms after she graduated from college and headed into the world to follow her dreams. Paranoia, delusions, visual and auditory hallucinations, distorted thinking, and confusion crippled her for many harrowing months. As she spiraled out of the reality I knew into a one that made no sense, I thought I lost my only daughter forever. The relationship I envisioned for us slipped away as the whirlpool of mental illness sucked her away.

Through treatment, things changed. She entered the recovery stage and manages her symptoms through medication and self-care. She works full-time, lives on her own, manages her own affairs, and leads a social life that makes me tired.

Thirteen years later, I have my daughter back. My husband, Roy and I have an amazing daughter. And I feel that I gained a confidant and friend. As Mother’s Day approaches, I look back and see how our relationship evolved from mother/daughter through caregiver/patient, back to mother/daughter and now – friend.

Amber and I call each other almost daily. We talk about our day, the latest book we’ve read or movie that we’ve watched. We share our thoughts about faith, situations around us and giggle over silly stories. I ask her for advice and vice versa. But beyond my conversation partner, I look at where we’ve been and I am grateful.

I would not have chosen this off-road course of life for her, or for our family. But life throws things at us that we can’t avoid. In spite of the struggles, the stress, and the heartache we had, I found joy. I leaned on my faith to help me cope until I saw a glimmer of hope again.  I feel I became a better person because of her illness and the things I learned. Things I wish I knew years ago:

• Treat it like every other illness. Mental Illness is a biological illness. Scientists and researchers proved this. Molecular changes take place in the brain that are visible through brain imaging. So why did I feel embarrassed when Amber first became sick with the symptoms of schizophrenia? Would have I reacted this way to cancer or diabetes? Would I deny her illness? I think not.

• Accept the illness. “It’s not your fault” became part of my daily phrases I said to Amber. She didn’t choose this for herself. She didn’t understand why her world turned against her. I repeated “I love you, I’m here for you,” often. Once I accepted her brain disorder, I moved forward. I became her advocate, caregiver, and support.

• Early Treatment. Once I realized that Amber’s brain was in trauma, Roy and I took action. Early treatment made a huge difference in how her brain reacted to treatment. Once the doctors found the right medication, she began to heal. I learned that schizophrenia alters the brain by destroying the gray matter. Now, thirteen years later, she understands her illness and wants to stay in recovery.

• Support can help a loved one succeed. In our family, we moved Amber home during her recovery. After a lengthy hospital stay, I treated her as if she came home from a cancer treatment. I let her choose the level of activity she could handle. I didn’t ask for her help with household chores. I helped manage her medications and appointments. As she healed, she regained the stamina and wanted to do things for herself. With this came confidence in her abilities.

• Support for the family whose loved one faces mental illness makes a huge difference. Often time when tragedy strikes a family, the surrounding community reacts with compassion, support and financial help. But what happens to the family who deals with the tragedy of a serious brain disorder? Who steps in to hold them up? In our case, our families and friends did. They sent cards, letters, small gifts and visited Amber in the hospital. We received the same treatment, a friend even delivered a casserole! Now, support to other families ranks high on my list of priorities.

• Educate yourself. Education played a key role for me understanding mental illness. I learned what Amber faced by reading books on the subject. I also attended the Family to Family class through NAMI (National Alliance on Mental Illness) where I learned about the brain, symptoms, treatments and how to care for myself. I gained the tools I needed to cope.

• Be open. Once I shared my experience with others, I felt empowered and no longer isolated. My honesty allowed people to share their own journeys with me and we could support each other.
• Fight for them. I turned into a mama bear for her. I stood up for her when she couldn’t stand for herself. Roy and I sought the best treatment for her, switching providers if necessary. I filled out paperwork for her until she could do it for herself. Now, I get to stand to the side and root for her as she lives her life in a way that is similar to other women her age.
• Pray. I prayed daily for her and for me. For her to understand her illness. For the doctors to find the correct medicine to help her. And wisdom and strength for me to do the right things to help her recover.

Yes, I’m grateful Amber is my daughter. I understand schizophrenia is often relentless and vicious. And that not everyone wins the battle. But I’m grateful that if Amber is one out of one hundred people to have it, that she was born into our family. I’m glad we found the help she needed and that she recaptured a life of independence packed with work, friends, faith and family.

Happy Mother’s Day to me and to every mom who loves someone with a mental illness. We do the best we can! 

I want to pass it on…

Sometimes a song gets in my head and wants to stay.  The tune, the words play over and over in my mind in the quiet of my house. This morning it’s an old song from years ago called Pass it on. “I’ll shout it from the mountain top. I want my world to know. The Lord of love has come to me. I want to pass it on.”

Why the feeling? I spoke last week with a NAMI (National Alliance on Mental Illness) group about our story and my book. I shared with them snippets of the agony I had when our daughter became ill and later received the diagnosis of schizophrenia. I felt hopeless, frustrated and terribly alone.

Fortunately, for our family, we found the proper treatment at the right time, she wanted to get well and we worked together for her recovery. Today, twelve years later, she remains in recovery.

She battled back from the harsh symptoms and went on to live a life similar to other individuals her age. She works full-time, manages all her own affairs and medications, and leads a social life that makes me tired. To say I’m proud of her is an understatement.

Why did it work this way for our family?

I wish I could give a concrete answer. I can only relay what happened in our family. But,  I believe we had a miracle. Yes, a miracle.

• We turned to professionals who used their expertise. We had psychiatrists who cared and included all of us in the discussions.
• Amber had a wonderful counselor/therapist who walked closely with her for many years.
• We learned about the illness that invaded our child through classes by our local NAMI organization. Understanding helped me cope.
• Amber’s best friend came to see her and take her out socially every week. This action kept her immersed in social situations with people her age.
• Amber was driven. She pushed herself past what her dad and I felt comfortable with as she took two steps forward and then one step back.
• I leaned on my faith. I tried to center myself each day by reading and praying to strengthen me.
• We had the support of our families and close friends.

Yes, I think this formula produced what I feel is a miracle – professionals + education + support + faith + Amber’s determination = recovery.

It saddens me to know this isn’t the case for many families. As I volunteer with our local NAMI organization, or to speak to groups about our story, I hear heartbreaking stories of individuals who battle and the families who love them. I know they want the best for their loved ones, just as I did.

• To them, I want to bring hope that recovery is possible. To not give up, to continue to search for answers, to ask for help, to keep hope alive.
• To others who come to listen to an author, I want to bring awareness to an issue that affects 1 in 5 individuals and 1 in 4 families. These families need a community to stand with them, to let them know they are not alone in their journeys.
• I want to start conversations so everyone comes to understand it’s a brain disorder, not a character flaw. My daughter certainly didn’t choose to have schizophrenia.
• I want to pass it on:  hope, awareness, and support.

Just in case you’re interested in the song, here’s one link:

Pass it On by Kurt Kaiser

 

We’re in…

 

Statistics show that one in five adults are affected by a mental health condition in a given year. 20 % of our population! I admit, I didn’t think about this much. It happened to someone else, another family – not mine.

From 1975 on, when Roy and I got married , my family appeared to be “normal.” By 2004, we had four adult children, all of them on their own. They worked or continued to study while Roy, my husband and I worked and enjoyed our jobs.

In late 2004, we became part of the statistic – 1 in 5 individuals affected, 1 in 4 families and the 1 in 100 individuals that deal with schizophrenia. I could not ignore it any longer. Over the course of a few months, I took a crash course in how to handle a loved one with a mental health condition.

I’m so grateful I found our local NAMI organization. The National Alliance on Mental Illness offered me a shoulder to lean on and the education to understand. As a result of their support, I was able to react to my situation with love and patience. I learned all I could by reading books on the subject and taking the Family to Family class. But that’s me. It’s how I roll. It’s how life has taught me to react.

Our story has a happy ending. Our child lived with us for four years and came to understand her illness. She worked hard to move into recovery and stay there. It’s been nine years since her first episode of psychosis. With the help of doctors, therapists, counselors, family and friends she fought against the symptoms and won. Today she works full-time, lives on her own and manages all her own affairs. She understands her need for medication, regular doctor appointments and a counselor she can trust.

To say I’m proud of my child is an understatement. We may be part of the statistic, but it doesn’t define her or our family.  She isn’t schizophrenic, she has schizophrenia and she manages her illness.

As a result of my journey, I work now to bring awareness and hope to the families whose loved one suffers.  I understand that when a child battles an illness, the family’s life changes forever, too.  Now, I feel compelled to support other families who travel a similar path. I work to offer awareness to a wide-spread issue and also to bring hope that recovery is possible. I dream of a day when it happens for everyone. Until then, I plan to continue to involve others in a discussion about mental health conditions. It affects us all.

For information about free education about mental health conditions go to National Alliance on Mental Illness Programs.

To find publications about mental health conditions visit the National Institute of Mental Health.

Broken Brain, Fortified Faith

 

 

 

My first award!

Last year I joined the Catholic Writers Guild after I attended their LIVE conference. This is a professional group of writers, artists, editors, illustrators, and allies whose mission is to build a vibrant Catholic literary culture (taken from their FAQ page.)

Earlier this year I applied for their Seal of Approval. On March 30, an email gave me the wonderful news that my first book, Broken Brain, Fortified Faith received the SOA. Basically this means that my readers  can read it with the understanding that this book will not offend their Catholic faith or annoy the grammar police.

Knowing I have the approval of my fellow Catholic professionals means a lot. I want to thank all the people who helped with my faith formation over the years and the editor who worked with me at Familius,  Lindsay Painter Sandberg.

Let’s continue to talk about mental illness. My journey through the scary world of schizophrenia is similar to almost every family that I’ve met. When we talk about it, we give them permission to share their pain and ask for support. I know I felt alone when I first discovered schizophrenia had invaded our daughter. I found help through the National Alliance on Mental Illness (NAMI) , this group of wonderful, supportive people.

I couldn’t write my story without including my faith journey, too. It’s part of who I am and how I made it without complete despair. So let’s continue to talk about that, too.  NAMI has an organization, FaithNet  for all those who wish to keep the two connected: mental illness and faith.

I hope one day those families and individuals who battle mental illness can feel comfortable going to their family, friends, and their church community for the support and prayers they need. I also hope for a culture where we talk about mental illness the same way we discuss cancer or diabetes. For it’s a biological disorder, not a character flaw.

 

 

 

Blog Review from Mary Potter Kenyon

Thank you, MaryPotterKenyon for your wonderful review of Broken Brain, Fortified Faith: Lessons of Hope Through a Child’s Mental Illness. Your words made my day. Our journey through schizophrenia was probably the hardest path I’ve ever had to take. But out of that period in my life came a resolve to reach out to other families who face a similar road. I like to bring hope that recovery is possible. Mental illness can be a life-long journey, but those affected can resume a lifestyle similar to others around them. It takes a tremendous amount of support, love, and dedication by the individual and those around them. I found help through NAMI, a wonderful organization providing support, education, and advocacy for mental illness.

I read with eagerness the latest news from Brain & Behavior Research Foundation, where money is distributed with grants to scientists who study the brain to unlock the mysteries of mental illness.

It’s also left my heart in a different state. I’ve become more compassionate, more mindful of the words I use, more deliberate in the actions I use on a daily basis. I practice the art of finding something each day to make me smile and try to bring the same facial exercise to those around me. Whether it be the person who checks me out at the store, a server at a restaurant, or any numerous places I encounter people, I try to bring joy.

Let’s work together to bring hope, healing, and faith to those around us. For I believe with all my heart, people who suffer from mental illness have a brain disorder – not a character flaw. They didn’t choose this for themselves. Science shows us again, and again the biological reasons for the illness. Let’s treat it as such.

 

Welcome to Virginia Pillars’ blog.

Welcome to the thoughts and musings of Virginia Pillars. My goal for this site is to share with you, my readers, my journey through an extremely difficult time in my life. And like most experiences in life, it changed me. But for today, I want to share my incredible, and exciting news.

My book, Broken Brain, Fortified Faith: Lessons of Hope through a Child’s Mental Illness is complete. The release date is September 6, 2016, although at this writing I know Amazon began shipping copies last week.

You may be asking, what’s the book about?

It’s about my journey into the world of mental illness with my daughter. In 2004, her brain broke and I didn’t know what happened or how to deal with it. The book is my story, how I coped, what I felt, and what happened to our family as we learned of her diagnosis, schizophrenia and entered her world, so much different what we perceived it to be. We had to learn about mental illness, about her specific brain disorder, medications, therapies, and all the things that accompany schizophrenia.

But how did my story get to this stage? How did I go from a confused, and sometimes angry mother to a published book?  I have been given a gift, a wondrous, incredible, unexpected gift. I’m excited to share this with my followers, as well.

Thank you for visiting. Please check back again.

Virginia