Angels Among Us ~~ Alice

Friends who have read my memoir and especially those who have accompanied me on my journey the past eight years of bringing my book into the world have been remarking about how just the right person has come along at every juncture in my life to take me to the next level. That, too, has amazed me. If I ever doubted that the Universe has my back, writing and publishing my memoir has dispelled any lingering uncertainty.

Shirley, the Angel in my November 24 post, and Alice, the Angel I am featuring today, were people from the church who extended love to me at times in my life when I needed to know that I am Divinely loved, that I am a person of worth, and that I am capable of much more than I realize. The Universe had plans for me I couldn’t even begin to imagine.

I’ll bet if you think about it, you can point to a person or persons from your childhood or youth who changed the trajectory of your life. That one person for me is Alice.

Alice

Alice moved to my hometown when I was about twelve to serve as the parish worker in our church. She appears in two places in my memoir because her influence in my early life was great.

Because she was new in town and didn’t know many people, she welcomed frequent visits from my friend Saundra and me. We always had fun at Alice’s apartment. My most precious memories, however, are the times when I was alone with Alice. I carried the following secret in my  heart related to Alice. When she read A Long Awakening to Grace, she was shocked to learn about it.

“I remember most how Alice made me feel. When we spent time alone, she treated me as someone important to her. She listened as though interested in what I thought and how I felt. She didn’t seem to consider it ‘weird’ talking about serious topics. She gave me the individual attention I received from no one else. I felt ‘at home’ with Alice and wished she could adopt me so I could live with her.” ~Page 27 of A Long Awakening to Grace

And then, when my high school graduation was nearing, Alice changed my life’s path. She asked me what I planned to do after graduation and recommended I go to college. I didn’t think I was smart enough, no one at home or school had suggested it, so I hadn’t given it any thought. I am forever grateful for her suggestion. And I’m grateful I was wise enough to follow it. Going to college opened opportunities that I would otherwise not have had … including meeting people who could take me to my next level of my development.

It took fifteen years and a second recommendation for me to heed her next suggestion. Alice was the first person to suggest I consider a career in the church.

“‘You should think about being a parish worker like me.’ … I tucked Alice’s recommendation in the back of my mind …” Page 11 of A Long Awakening to Grace

Alice’s suggestion led me to Bowling Green State University and a major in Business Education. I didn’t know myself well back then and chose a major that wasn’t a good fit for me. I took a circuitous path through United Theological Seminary, Living in Process and Imago Relationship Therapy trainings that revealed a counseling ministry as a better fit.

And now, after publishing my memoir to such high praise from readers, I wonder what life might have been like had I pursued creative writing. Even though I was selected by the faculty to be the editor of our high school newspaper, that was a possibility that never occurred to me. I knew no one and had never heard of anyone who had followed such a path.

It is not too late, however. What lights up my life these days is increasing my learning about the craft of writing. Despite my eighteen-year-old attitude that I wasn’t smart, thanks to Alice, I have emerged at seventy-five into a life-long learner. It is what makes my life meaningful.

“Conscious aging is about having meaningful goals for our elderhood that spring from our authentic selves and using the power of intention and inner work to make our vision a reality. It is about having the courage to aim high in an unconscious world.” ~Ron Pevny in Conscious Living, Conscious Aging: Embrace & Savor Your Next Chapter.

On Being Relational

David Letterman

“I’m here tonight because of hundreds, probably thousands of people who helped me.” ~Dave Letterman upon receiving the Mark Twain Prize for Humor.

When I heard Dave Letterman acknowledge that he was successful because a lot of people helped him get there, my admiration for him expanded. Not that I disliked him before. I’m just an “early-to-bed” kind of person and miss all the late night shows.

His words demonstrated to me that he is a “relational” guy. He named some of the people who helped him and acknowledged the talents of several who he believes deserves the Mark Twain Prize every bit as much if not more than he does. I liked that.

In the 1990’s I trained with Harville Hendrix. He and the woman to whom he is married, Helen LaKelly Hunt, co-developed Imago Relationship Therapy. I retired in 2012, but still value this community of therapists and their partners who devote their lives to improving their own relationships and helping others do the same.

Recently one of my friends and colleagues, Ani, told me that Harville no longer likes the word psychology because of its orientation toward individuality.  I agree with him because, in my opinion, we’ve gone too far with the “pull yourself up by your bootstraps” mentality that is pulling our culture apart.

Click here for an interview with a linguist that gives the interesting origin of that phrase which started as an insult and has morphed into an admirable quality and cultural demand that is not serving us well.

Harville has coined a new word that I think is much needed in our times. His word is “RELATIONOLOGY.”

Harville Hendrix

It seems to me and many people whom I respect that our culture is based on an illusion of separation. No matter how it looks, we are not separate. We are one. And much of the loneliness and angst we experience in life comes from the emotional distance that results when we act out of a belief that we are separate.

Think about what means the most to those facing terminal illness and death…their loved ones…be that family or close friends who are like family. Trophies, awards, accolades, and material wealth mean little if we aren’t surrounded by those we love. Somehow, when our life is going well, we often forget what matters most.

I am receiving a lot of positive responses to my memoir, A Long Awakening to Grace. Some of them are beyond my wildest imaginings. I am being referred to as an amazing woman. Those are words I never expected to hear and I enjoy hearing them and am grateful to receive them.

However, I am keenly aware that whatever writing and publishing success I am experiencing…whatever growth has turned me into an amazing woman…I must attribute to Divine guidance and the many people who came into my life during my journey to grace as “God with skin on.” I call them angels.

My blog series, “Angels Among Us,” is to acknowledge those people. I have indeed been blessed. I have a lot of material to continue writing this series for a good long while.

Once I’ve acknowledged all the folks mentioned in my memoir, I have more angels to write about … those who taught me to write well, those who helped me revise my manuscript, those who gave me advance praise and blurbs, those who helped me with the task of publishing, those who helped design the cover, those who are currently mentoring me with marketing (something I am attempting to do from a relational paradigm) and those who are writing wonderful reviews. The list goes on and on. I am so blessed.

It is clear to me that A Long Awakening to Grace is not all my doing.

And so, I ask you, as you read about my angels, to reflect on your own. We all have them. If we look up from our cell phones and social media long enough, we might more easily recognize them. And I think we could all benefit from paying more attention … for taking time to appreciate who matters most in our lives.

Please join me in giving a hearty hip, hip, hooray for this new word in our vocabulary … a word with the potential for drawing our culture back to our spiritual roots. We are all one … interconnected … created to be relational beings. We have so much to learn about and so much to benefit from embracing …

RELATIONOLOGY

Have a Happy Thanksgiving with those who matter most to you.

Another Welcome Gift of Grace

In my last blog post, I wrote: “For many years as an adult, I hid. I cut myself off from old friends who would have wanted to know what was going on. I didn’t want to tell them.”

When our family moved from Middletown to Kettering, OH in the early 80s, we left behind a whole group of tight-knit church friends. I didn’t include in my memoir the story of the house church some of us founded, a most meaningful experience for us. But that is another story for another time.

This week, I reconnected with one significant friend from my past, LaVerne, my daughter’s first piano teacher. LaVerne, her husband Dick, and their three children Dale, Bruce, and Sandra were active members of The Church of the Continuing Creation, our house church.

After her husband died, LaVerne moved to Houston, TX, to be near her daughter. My memoir brought us back together.

LaVerne

LaVerne and I have been friends on Facebook for awhile, but we hadn’t talked in several years except for a visit I made to her shortly before she moved to Houston. I was still in the process of writing A Long Awakening to Grace. I trusted LaVerne to give me honest feedback about how she experienced me in my relationship with my then husband. She had many opportunities to observe us in the 70s. I wanted to be as candid as possible about my part in our relationship not working.

But because some of what I experienced with my children was still too painful to talk about, I didn’t share much with her about that part of the story. She learned about it through reading my memoir.

It was important to me that someone significant to me from my past know my truth. In fact, a Facebook message I received from another member of the house church when my memoir was first published brought me to tears. Karen was a teenager in the house church and her mother, Wapella, was one of my dearest friends. Unfortunately, Wapella died before my memoir was published. Karen said:

“Linda, I read your book this weekend and was very moved. I smiled at the memories of people from our past and shed a few tears during certain passages. Thank you for sharing your insight and pain.”

When I knew LaVerne, also one of my closest friends, wanted to read my book, I asked her to give me honest feedback after she finished reading.  And thankfully she called me Sunday evening instead of sending a text. We talked for two hours.

“Through memoir people get to know us, the inner details they never knew. Glad you rekindled your relationship!” Linda Joy Myers, founder of the National Association of Memoir Writers and one of my teachers.

Not only did LaVerne not know the inner details of my life, she knew little of the outer details. She seemed to hardly know how to respond. She just kept saying “Wow!” She also told me that she talked with her children about reading my book, telling them, “I lost touch with Linda a long time ago and her life just kept getting worse.” She wondered how I am “still standing.”

As Linda Joy, author of two memoirs, Don’t Call Me Mother and Song of the Plains, and several books on writing memoir, knows … it is the inner details that most interest friends.

Most of the conversation with LaVerne centered around the deep, inner details of our lives. She didn’t seem to recognize her musical talents as gifts that are every bit as spiritual as my contemplative writing and involvement in groups that delve deep into soul. But by the end of our conversation, she seemed pleased to appreciate that fact at a deeper level.

LaVerne is an extrovert with a great sense of humor. She finds people fascinating and loves to interact, often initiating contact through humor. People enjoy and trust her almost immediately. That is a gift I wish I had. While I find people as intriguing as she does, I have a much more difficult time initiating conversation.

And, now that, in LaVerne’s words,  “…we broke the barrier we’ll talk often to check up on each other.” Before we ended the call, we reaffirmed our friendship and love for each other. What a blessing. Another gift of grace that has come as a result of publishing A Long Awakening to Grace. I am once more filled with gratitude.

 

Angels Among Us ~~ Karen

Probably one of my greatest fears growing up was being rejected and judged as inferior. That fear was front and center for me in 1999. I had been searching for twenty-two years for the reason behind my children’s puzzling behavior and had given up all hope of ever knowing its cause. As most parents do, I blamed myself. I didn’t know it at the time, but I was about to experience a miracle that would reveal the origin of their behavior.

Professionally, I offered Imago Relationship Therapy and relationship coaching as an outreach ministry of a local church. Because of my embarrassment about my children’s behavior and my fear of how members of the congregation would react if they knew, I didn’t talk about my children at church. I kept secrets.

“No one at church knew much about my personal life. They knew I had adult children but didn’t ask about them, and I offered nothing about their circumstances.” ~excerpt from A Long Awakening to Grace

To my horror, my secret became known in a very public way. I prepared myself for the judgment against me that I was sure would follow. I served on the Christian Nurture Committee, and the next time they met, I braced myself for their disapproval. I was so very wrong. They gave me nothing but compassion. From that I learned that I was projecting my judgment of myself onto them … and many others … something I probably still do far too often today.

I had lunch yesterday with Karen, one of those committee members who has remained a friend all these years later. She has most definitely been an angel in my life.

Karen

“We’ll pray for you. We’ll add your names to our prayer group.”

 

“‘And I have a friend with a prayer group at her church. I’ll get you on her list, too,’ Karen chuckled. ‘In fact, we’ll see to it that every prayer group in town puts you and your daughter on their list. We’ll cover all the bases.’ She gave me a reassuring hug.” ~excerpts from A Long Awakening to Grace

Karen is an extraordinary woman who is an angel in many lives. She makes a difference in her family and in our community, utilizing her many skills as a volunteer. A retired teacher, she currently tutors at the literacy center. She told me over lunch about helping a man learn to read the Bible so he could do that in church, helping a woman learn to read children’s books to her grandchildren, and a woman learn to read so she can upgrade her work skills. That’s just the kind of woman Karen is.

Karen exudes enthusiasm for life and one of her favorite activities is having dinner with friends. She became so engrossed in reading my memoir, in order to finish, she turned down a dinner invitation. As soon as she turned the last page, she called me. “I just had to talk with you.”

She told me about her rejected dinner invitation. “Now you know, I never turn down a dinner invitation,” she chuckled. She went on to share how moving she found my story and how she felt for me with all I went through with my children. We made a date for lunch.

Over lunch yesterday, I enjoyed catching up with what is going on in Karen’s life and hearing about people from that congregation who I rarely see anymore. They are still very special to me. Karen wanted to know about how my daughter is doing and about my life these days.

After lunch, she had to rush off to take a neighbor woman in her 90s to the doctor. Like I said, that’s just who Karen is. As we prepared to leave, we made a pledge not to wait so long to schedule another lunch. I am so blessed.

Angels Among Us ~~ Miss George

Miss George appears first in our lives in 1982 and in my memoir, A Long Awakening to Grace, on page 93. She accompanies us on our journey for a year and through page 95.

She was the best teacher my son ever had. And that is significant because in all the schools he attended, most of the teacher’s only expressed frustration or worse with him. School was traumatic for Doug and for our family.

These excerpts from my memoir will give you a sense of Miss George’s quality as a human being and a teacher.

“…when it came time for my first parent-teacher conference, I braced myself. I suffered pounding tension headaches every time I entered a school building, even if just to watch one of my children perform in a program.” 

When I called Kettering City Schools three years ago to find her, I was told that I was not the only parent who had called looking for her. Miss George was an outstanding teacher loved by many parents and students.

This next excerpt from my memoir will show why I love her.

“She said, ‘Doug’s making good progress in his studies. He’s pleasant and cooperative in the classroom.’

I burst into tears. 

Miss George leaned toward me, a puzzled look on her face. 

… ‘This is the first time I’ve heard anything good about my son from a teacher in years.'”

 

The kindness she extended to our family will always be appreciated.

“After our conference, Miss George sent home ‘Happy News Telegrams’ and lengthy notes about improvement in Doug’s behavior and work. She often wrote, ‘I’m very pleased with him, and you should be, too.'”

Unfortunately, because of a serious health condition, after twenty-three years of teaching, Miss George had to give up the job she loved. Teaching defined her life and was the purpose for which she lived. Now she struggles with living day to day. But that has not dampened her spirit and attitude.

Saturday, I had lunch with her to gift her with a copy of my book.

Miss George

When I told her she was in the book, her eyes brightened and she asked, “Can you show me where?” I opened the book to page 93 and she read those two pages where she appears.

She was so excited and kept thanking me. In truth, she is the one who deserved my gratitude. She was an angel and a bright spot in our life. And when we are going through a rough time, we need such angels.

Saturday I could see that I was a bright spot in her difficult life. I’m grateful I had the opportunity to repay her in some small way for the enormous gift of grace she extended to us so long ago.

Angels Among Us ~~ Julie

In my memoir, A Long Awakening to Grace, I write about angels who appeared in my life. Some were there to teach me lessons. Some were there to give support during rough times. And some were there to show me that despite what I thought about myself, I was worthy of being loved. If you look back and reflect on your life, I’m sure you will be able to identify angels who attended to you in some way.

This is the first of a series I will be blogging about to feature those who contributed in some way to my awakening to grace … who appear in my story as an angel. Wherever possible, I look forward to re-connecting with every one of them in person.

Julie first appears in my life in 1999, during my awakening to grace, and in my memoir on page 240 in the chapter titled, “Summoning Courage.” She is there through page 259 in the chapter, “Fire Walk.” She was the nurse who showed up to give support during a rough time. And she went above and beyond. On two of those days, she stayed two and a half hours beyond her twelve-hour shift to minister to us. I was grateful she was a compassionate human being as well as a skilled nurse.

Julie & Linda

A few years ago I reconnected with Julie at the Neon Theater where her talented son was unveiling his film, “For Francis.” I hadn’t seen her for about fourteen years and wasn’t sure I would recognize her. But a relative of hers helped me find her and it was great to see her again and to let her know that I was following up on her suggestion.

In 1999, on the second occasion Julie stayed beyond her twelve-hour shift, she came to see how we were doing. While listening to my daughter tell a portion of our story, Julie looked at me and repeated three times, “You need to write a book about this.”

I’m not sure what went through my mind at the time, but this was not the first time someone had suggested I write a book. Compliments were scarce in my family growing up, but both my father and my brother told me on different occasions that I was a good writer and should write a book. I had no idea at that time what I would write about.

When I was in seminary, my professors praised my concise writing and the depth of my thinking. One of my academic papers was published in two University of Dayton journals. The one that thrilled me the most was, “Explorations: Journal for Adventurous Thinking.” I loved being thought of as an adventurous thinker. These experiences showed me that I had the capacity to write a book, but I still wasn’t sure what the topic would be.

I must have tucked Julie’s suggestion in the back of my mind because ten years after she made that suggestion, I took my first faltering steps in writing the story of my life. It was clear to me by that time that I had a story to tell.

Julie

Now, eighteen years after Julie’s suggestion, A Long Awakening to Grace has been published and launched out into the world. I recently had brunch with Julie to show her the culmination of her suggestion and to thank her for planting that seed.

Julie went home afterwards and read the book that day from start to finish. The next morning I received an e-mail from her that meant a lot to me.

I couldn’t put it down. I was mesmerized. Wow! I hope I can be that courageous a woman who can tackle obstacles with such grace in life. You, Linda, are a force! ~Julie Beck

In addition, her comment about my writing was music to my ears. She said that my words transported her right back into the hospital setting where she entered our lives. That is just what every writer wants to hear!

Julie and her husband have been going through their own rough time with health challenges. If my book gives her even a smidgen of the support she gave to us eighteen years ago, then I have fulfilled an important purpose for publishing and sharing my story.

Thank you, Julie, for being an angel in 1999 and for the suggestion you made about my writing a book. Writing my memoir gave me a whole new perspective on my life, helped me make sense of it, and was transforming. I am grateful to see that reading it made a difference to you. It is my hope that my journey will help and inspire all who read it.

Validation: “You make sense to me”

I believe that most of us long to be heard and understood.

Before I retired as an Imago Therapist, a major part of my work with couples involved helping them hear and understand each other. Imago Therapists teach couples a listening skill designed to promote understanding at a deep level, suspending a common need to be right until the other person makes sense to us even when we disagree with them. The partner receiving validation visibly relaxes. I experienced it as holy and sacred work.

I received validation for my experience as a mother from two books I purchased at the Myotonic Dystrophy Foundation conference in September. Not surprisingly, they were written by mothers of children with this puzzling multi-systemic neuromuscular disease that often goes undiagnosed for decades … twenty-two years in my experience.  

Marian Shannon Miller Lord

Shannon Lord died in 2013, the same year she first validated my experience. On page 277 of my memoir, A Long Awakening to Grace, I write about the decades of shame and guilt lifting from my shoulders as I listened to her validating 2011 presentation on the MDF website.

As one of the founders of MDF, her dying wish was to have her memoir published. An editor cousin and her husband fulfilled her desire and Larry brought Family Roots: A Mother’s Search for Meaning to the conference this year.

Larry Lord and Linda

Shannon was already an important person in my life. It is partly because of her encouragement to share our stories that I published my memoir. Reading her’s, I felt validated over and over. We shared many of the same feelings about our experience, we coped in similar ways, we asked many of the same questions and struggled with many of the same issues. We both searched for meaning in the midst of a disease that has robbed us of so much that others take for granted. I relaxed.

At the conference, I met Ann Woodbury. She printed her manuscript, Living with DM1: my family’s story, and made it available to conference participants. She is still in the publishing process. You may contact Ann on her Facebook page for more information.

Ann was part of a panel describing the experience of central nervous system symptoms in her husband and four children. From her description, I knew we had some things in common. After reading her manuscript, I again experienced validation for my experience as a mother. I relaxed.

Ann and I have messaged each other on Facebook and she commented, after reading my memoir, how similar our spiritual quests have been. I had noticed that, too, and found it interesting because our religious backgrounds are very different. Even though Shannon, Ann, and I come from very different backgrounds and are very different in many ways, we share a common bond.

Because I am not in a partnership committed to practicing Imago’s deep listening skill, I value every experience of validation wherever I find it … even in books. Most often I find this deep connection when I read memoirs. Guess that is why I love them so much.

Being validated reminds me of the magic of Imago and why I choose to become an Imago Relationship Therapist. It is exhilarating when someone important to you takes the time to make sense of your experience even when they may not agree. As Harville Hendrix, the originator of Imago theory and practice, points out on page 136 of his book Getting the Love You Want … “a whole world opens up to you.”

 

Strength in Weakness

“…for when I am weak, then I am strong.” ~II Cor. 10b

Due to website problems preventing subscribers from receiving posts, this is a re-post of my September 11 post.

The most important instruction given to those writing a memoir is to be honest about our shortcomings and to be generous in describing others so as not to demonize them. That is why we are encouraged to wait until the stings of life no longer throb intensely before we embark on writing a memoir for publication … keeping our eye on writing a story that serves a larger purpose and can be useful to others. It is a process.

In my process, for years I poured out my agony in my prayer journals, writing about shame-filled events that I have always had difficulty talking about. Finally, I reached the point where I was ready to embark on seriously writing a memoir.

Writing my story in a way that might be beneficial to others forced me to dig deeper and discover the treasure hidden in my pain. As a result, I emerged with a whole new and transformed perspective on my life and the people in my life.

Still, shame and fear of judgment prevented me from giving voice to some of my most painful experiences. Now that my memoir has been published, I worried about how to handle book signings. What parts of my book would I be comfortable sharing verbally with others.

Knowing that writing honestly opened me to criticism, I have kept Brene Brown’s book, Daring Greatly, on the book shelf above my computer as inspiration to keep moving forward. And because my book is now published and it is time to share my story with the world, I have kept Deborah Winegarten‘s wise counsel before me.

A special sister writer, Deborah focuses on the greater purpose her books serve ~~ giving her opportunities to connect with others and be present to them in their need.

And so, this past weekend I took my books to the Myotonic Dystrophy Foundation (MDF) conference in San Francisco. And by the way, Deborah joined me at her own expense to give me support and sell my books so I could connect with other conference attendees. She walks her talk and has fun no matter what she is doing. A great role model for me.

Deb Winegarten selling A Long Awakening to Grace

The first morning before heading to my author table, I sat on the edge of my bed and set my intention … to be present to the needs of others as I connected with them and to be mindful of my larger purpose in writing this book.

Myotonic Dystrophy (DM) is a multi-faceted disease with numerous physical, behavioral, and psychological components. Because the physical is easier to address, researchers have put their energy there. However, the behavioral and psychological cause the most concern and produce the most emotional pain for those carrying the disease and their caregivers. I have shared a wish with other members of the community that researchers give more attention to this aspect of the disease.

My opportunity to share my concern came during this Friday morning session: “Bringing the Patient Voice to Central Nervous System Targeting Drug Development.” James Valentine moderated while five patients and caregivers shared their experience. Then the floor was opened to hear from conference participants. I raised my hand immediately because the panel had not addressed the concern that is central in my family’s experience of this disease.

After a couple of other people shared, Mr. Valentine handed the microphone to me. I pointed out that the panel had not addressed anti-social behaviors ~~ the behaviors that my son had exhibited. I pointed out that I shared a concern with one of the founders of MDF that researchers address these behaviors. Then Mr. Valentine said, “Would you be specific about the behaviors your son exhibited.”

I gulped. And then I reminded myself of my intention set that morning to focus on the larger purpose of my memoir and my attendance at this conference. I hoped research would prevent other families from going through what we went through.

My hands began to shake. I looked at Mr. Valentine and told him that it is still very difficult for me to talk about. And then, in that ballroom full of nearly three hundred people, I gave voice to the behavior that had caused our family the most shame and pain. I shared how I had handled this behavior, noting that others may judge me for that, but it was what I had to do to preserve myself. Mr. Valentine thanked me and said the information I gave is needed.

“Shame derives its power from being unspeakable.” ~Brene Brown

Immediately, other conference participants approached me at the table where I sat tearful and still shaking to give me hugs and thank me. Later, in the restroom, a new member of the board wrapped her arms around me and said, “You are the bravest of a roomful of brave people.” Another woman noted how I had shared with courage and grace. For the rest of the conference, I received hugs and expressions of gratitude. I was told there are many in the room who could relate to what I had shared.”

One of my new DM friends asked me, “Are you glad you shared?”

I replied, “Sharing that was life-changing! I got a monkey off my back.” I am aware that judgment and criticism may still come, but in the warm embrace of my DM sisters and brothers who know, the shame demon I’ve carried for far to long dissapated like the warmth of the sun burning off fog.

If you read my memoir, you will know how big that was for me. It is a huge piece of being faithful to the person I was created to be … to fulfilling my purpose for this sojourn on earth. I hear the God of my understanding, my True Self within, proclaiming, “Well done my good and faithful servant.”

“Before I formed you in the womb I knew you, and before you were born I consecrated you;” ~Jeremiah 1:5a

Strength in Weakness

“…for when I am weak, then I am strong.” ~II Cor. 10b

The most important instruction given to those writing a memoir is to be honest about our shortcomings and to be generous in describing others so as not to demonize them. That is why we are encouraged to wait until the stings of life no longer throb intensely before we embark on writing a memoir for publication … keeping our eye on writing a story that serves a larger purpose and can be useful to others. It is a process.

In my process, for years I poured out my agony in my prayer journals, writing about shame-filled events that I have always had difficulty talking about. Finally, I reached the point where I was ready to embark on seriously writing a memoir.

Writing my story in a way that might be beneficial to others forced me to dig deeper and discover the treasure hidden in my pain. As a result, I emerged with a whole new and transformed perspective on my life and the people in my life.

Still, shame and fear of judgment prevented me from giving voice to some of my most painful experiences. Now that my memoir has been published, I worried about how to handle book signings. What parts of my book would I be comfortable sharing verbally with others.

Knowing that writing honestly opened me to criticism, I have kept Brene Brown’s book, Daring Greatly, on the book shelf above my computer as inspiration to keep moving forward. And because my book is now published and it is time to share my story with the world, I have kept Deborah Winegarten‘s wise counsel before me.

A special sister writer, Deborah focuses on the greater purpose her books serve ~~ giving her opportunities to connect with others and be present to them in their need.

And so, this past weekend I took my books to the Myotonic Dystrophy Foundation (MDF) conference in San Francisco. And by the way, Deborah joined me at her own expense to give me support and sell my books so I could connect with other conference attendees. She walks her talk and has fun no matter what she is doing. A great role model for me.

Deb Winegarten selling A Long Awakening to Grace

The first morning before heading to my author table, I sat on the edge of my bed and set my intention … to be present to the needs of others as I connected with them and to be mindful of my larger purpose in writing this book.

Myotonic Dystrophy (DM) is a multi-faceted disease with numerous physical, behavioral, and psychological components. Because the physical is easier to address, researchers have put their energy there. However, the behavioral and psychological cause the most concern and produce the most emotional pain for those carrying the disease and their caregivers. I have shared a wish with other members of the community that researchers give more attention to this aspect of the disease.

My opportunity to share my concern came during this Friday morning session: “Bringing the Patient Voice to Central Nervous System Targeting Drug Development.” James Valentine moderated while five patients and caregivers shared their experience. Then the floor was opened to hear from conference participants. I raised my hand immediately because the panel had not addressed the concern that is central in my family’s experience of this disease.

After a couple of other people shared, Mr. Valentine handed the microphone to me. I pointed out that the panel had not addressed anti-social behaviors ~~ the behaviors that my son had exhibited. I pointed out that I shared a concern with one of the founders of MDF that researchers address these behaviors. Then Mr. Valentine said, “Would you be specific about the behaviors your son exhibited.”

I gulped. And then I reminded myself of my intention set that morning to focus on the larger purpose of my memoir and my attendance at this conference. I hoped research would prevent other families from going through what we went through.

My hands began to shake. I looked at Mr. Valentine and told him that it is still very difficult for me to talk about. And then, in that ballroom full of nearly three hundred people, I gave voice to the behavior that had caused our family the most shame and pain. I shared how I had handled this behavior, noting that others may judge me for that, but it was what I had to do to preserve myself. Mr. Valentine thanked me and said the information I gave is needed.

“Shame derives its power from being unspeakable.” ~Brene Brown

Immediately, other conference participants approached me at the table where I sat tearful and still shaking to give me hugs and thank me. Later, in the restroom, a new member of the board wrapped her arms around me and said, “You are the bravest of a roomful of brave people.” Another woman noted how I had shared with courage and grace. For the rest of the conference, I received hugs and expressions of gratitude. I was told there are many in the room who could relate to what I had shared.”

One of my new DM friends asked me, “Are you glad you shared?”

I replied, “Sharing that was life-changing! I got a monkey off my back.” I am aware that judgment and criticism may still come, but in the warm embrace of my DM sisters and brothers who know, the shame demon I’ve carried for far to long dissapated like the warmth of the sun burning off fog.

If you read my memoir, you will know how big that was for me. It is a huge piece of being faithful to the person I was created to be … to fulfilling my purpose for this sojourn on earth. I hear the God of my understanding, my True Self within, proclaiming, “Well done my good and faithful servant.”

“Before I formed you in the womb I knew you, and before you were born I consecrated you;” ~Jeremiah 1:5a

Celebrations

It was a long day. My Michigan friends, Tom and Sarah, were visiting. Sarah and I grew up together in New Bremen, got married about the same time, and were pregnant at the same time in 1968. Their daughter, Connie, is two weeks younger than my son, Doug. While our children grew up, we visited each other twice a year, alternating between Ohio and Michigan. It had been two years since we had seen each other. The picture below shows Tom and Sarah with Connie, her husband and daughters.

Don, Carolyn, Sarah, Megan, Tom, and Connie

Nicole had an appointment with her OSU neurologist Tuesday afternoon, August 15, so I scheduled an appointment with a Columbus attorney in the morning. I no longer like driving the interstate and wanted to double up on these appointments. Sarah accompanied us to these appointments.

I had been referred to Matthew Gibson because he specializes in estate planning when there is a disabled child involved. Sarah sat in on the meeting and took copious notes for me. Nicole and I really liked him, but it was a stressful meeting. I had made an outrageous request of a friend to handle Nicole’s finances after I’m gone. We called her so she could ask the attorney questions. I hate having to ask friends to assume this responsibility and am grateful for their willingness.

Sarah, Nicole, and I had a lovely lunch after seeing the attorney and then headed for our OSU appointment. Unfortunately, we missed a turn and got lost and never made it. And so we switched gears from frustration at having to reschedule with OSU to excitement about what awaited us at home.

The proof for A Long Awakening for Grace was slated to arrive that day. My friend, Diana, wanted to be present when I opened it. We called Tom to make sure it had been delivered and then called Diana to alert her to our impending arrival home.

Jim & Diana

Diana and her husband, Jim, came with sparkling juice and wine glasses to toast the occasion. After the drum roll, I opened the package.

The big moment

My daughter cried. When I asked if she could share with me about her tears, she said, “I was just thinking about all we went through.” Then she joined in the celebration. I can’t tell you how much I appreciate her support.

Nicole

I’m so aware that in the midst of the chaos that surrounds us these days, we have much to celebrate. I am determined to notice and honor the emergence of joy and love wherever I find it. When we look, we find that it abounds. This day I celebrated with friends … the satisfaction of a job well done. Yesterday Nicole and I celebrated the wonder of the Universe, watching the eclipse from our front yard, chuckling at my space kitty’s interest as we watched the eclipse on Nova that evening.

Kiko

And as I write this, the second proof is due to arrive. Later, Nicole’s new visiting physician will arrive. We will celebrate again, in the midst of the ordinariness and extraordinariness of life.

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