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.

Angels Among Us ~~ Shirley

We never know when we make a small gesture how it can change a person’s life. Shirley Santo smiled at me from the choir loft at church. She couldn’t have known that her smile meant the world to me. I was almost eight years old and painfully shy. For three years I had been holding onto a belief that there was something wrong with me. My belief was accompanied by a fear that I was unlikable and unlovable.

“When I spotted the older sister of a neighborhood playmate in the choir, I poked Mom’s arm and pointed, ‘Look, Mom, there’s Shirley, Fred’s sister.’

 

Shirley noticed and smiled at me. I scrunched close to Mom and buried my face in her arm. When I peeked out, Shirley wore a big grin. … Each week I anticipated the smile she never failed to flash. It spelled love.” Pages 25-26 in A Long Awakening to Grace

Then one day I arrived home from school to find Shirley visiting with my mother. She had come to ask me to be the flower girl in her wedding. I had never felt so special in my life.

Shirley Santo and Ralph Cole’s wedding held during the 1950s blizzard

An interesting aside: Shirley and Ralph were married in Sidney, Ohio, in the aftermath of the 1950 Thanksgiving blizzard, the worst in Ohio’s history. The snow was so deep (20-30 inches) and the winds so strong (40 miles per hour), cars couldn’t risk being on the road and confronting drifts as high as 25 feet in some areas … more like 5 feet in the Dayton area. I remember walking to the church for the rehearsal, my mother carrying my gown. As you can see from the picture, it was a beautiful wedding.

photos.medleyphoto.8403426 from The Dayton Daily News

As the first person to challenge my self-defeating belief, Shirley is my first Angel. If she is still alive, she would be in her late 80s or early 90s. My last contact with her was in 1980 just before my ordination. At that time, I was able to find her and let her know where the love she had extended to me thirty years previously had led. I wanted her to realize that she had always held a special place in my heart. I’m grateful that I was able to let her know before we lost touch with each other. I am no longer able to track her down.

Sixty-seven years later, during this season of Thanksgiving, I am eternally grateful for all the Angels in my life … and for today, I am particularly grateful for this very first one.

Angels Among Us ~~ Rachel

Yesterday I did a favor for Rachel. She recently moved, is still feeling overwhelmed with organizing her new space, and I’m pretty good at organizing. It is the least I could do for this angel … a small repayment for her kindness to me during difficult times in my life.

Rachel

Rachel first appears in my memoir on page 176 in the chapter titled, “Daunted.” It was 1989 and I had just left my marriage of almost twenty-three years. It was moving day and Rachel noticed my daughter and me working hard all day carrying stuff into my new home. We were exhausted, and I had neglected to make plans for dinner.

“As we carted in another load, Rachel came by to welcome us to the neighborhood. She invited us to dinner at her house. … A single parent with two teenage daughters, Rachel lived two doors down. Her invitation felt like a good omen. I hoped a friendlier neighborhood with girls near her age living close would make my daughter more comfortable moving in with me.”

Then she appears ten years later on page 259 in the chapter titled, “Fire Walk.”  Rachel is more extroverted and fun-loving than I am, but our friendship survived my move away from the neighborhood where we first met.

I was even more exhausted and rattled in 1999 than I had been on moving day in 1989. I was in the midst of a crisis with my daughter. She needed appropriate clothes to wear to a funeral and I didn’t have the time or energy to take her shopping.

“Rachel appeared with a bag full of clothes she and her daughters no longer wore. In the bag was a nice dress and shoes for my daughter to wear to the funeral.” 

When Rachel arrived at my home with these clothes, she saw the state I was in. I had so much to do and couldn’t even think straight to get started. Rachel helped keep me focused for the tasks at hand and helped me accomplish them.

Rachel sees a need and jumps in to help. She is known for helping many others. When reminded of her generosity, she is surprised because she has forgotten all about it. That’s just the kind of friend she is.

Yesterday morning as we worked on organizing her kitchen, our conversation deepened as we both reflected on what I wrote in A Long Awakening to Grace. She is not the first friend to note, after reading all that I went through with my children, that they didn’t feel they had been there for me … had not been a good friend.

That has nothing to do with their friendship. When something came out in the open, friends responded, including Rachel. Otherwise, I wouldn’t be able to write this “Angels Among Us” series. My friends couldn’t know the extent of what I was dealing with because I mostly kept it to myself. When I needed to talk about my family struggles, I saved that for my support group meetings.

When I was with my friends, I wanted to enter fully into our social activities. I wanted and needed a break from family matters. So many friends, including Rachel, are now learning the details. What is meaningful to me is that my story seems to touch some of their own tender places and they now feel free to share with me. Our eyes moistened as Rachel and I bared our souls in her kitchen. And then we did what good friends do, we gave each other a big hug.

Thank you, Rachel, for being an angel in my life … in days long past and currently as well.

Ranting

This is the first time in my memory that I have used this forum to rant. I think the gray-haired among us will relate. Lately, I’ve been tearing my hair out over technology. I do fairly well for someone my age, but I have my limits.

When my computer works well, I’m grateful to be able to interact with a world beyond my neighborhood, city, and country. When it isn’t working, I invariably can’t understand why and don’t know what to do to fix it. Sometime in September, the Jetpack plug-in just disappeared from my website. That meant my subscribers were not receiving my blog posts. And I didn’t know it until after I had posted twice, one being a very significant post. I also received feedback from another writer about my website. It needs an update. It couldn’t have come at a worse time.

Because I have no whiz-kid grandchildren, I have to “fork-over-dollars.” And in that realm, I also have my limits.

The months of September and October 2017 have been filled with anxiety and frustration as I’ve attended to several time-consuming matters, some of which involved an outlay of dollars:

  • updating my will and trust,
  • dealing with the Jetpack and other website issues (update still not resolved),
  • getting leaks to Nicole’s new tub and around the old tub in my bathroom fixed

Others were designed to save me money as the prices of everything are increasing in 2018:

  • finding the lowest gas and electric carriers
  • finding the best, most affordable health insurance supplement

Correcting the mistake made in my 2016 taxes involved both an outlay and a savings:

  • finding an affordable tax preparer and
  • receiving the refund I was owed

And that doesn’t take into account the hours spent dealing with the Equifax breech and collecting the documents the Job Center needed to determine if Nicole will still be eligible for medicaid help.

And then, of course, there is life:

  • grocery shopping
  • cooking
  • cleaning (to pay for Nicole’s tub, we let our house cleaner go)
  • doctor appointments

All that interfered with what I really wanted to do:

  • promote my memoir
  • prepare my home for Jacqui’s return from Taiwan so she could  move in

What frays my nerves and pushes me close to the edge of insanity is:

  • automated answering systems

It is next to impossible to get a human being anymore. And what should take minutes, takes hours. It is unbelievable what all is involved in getting instructions or the answer to a simple question. I even found an article about it here and here and here.

Twice this week, I was put in a queue and promised a call back. I’m still waiting.

Monday, we cut the cord with cable TV. Upgrading our internet was a breeze. Changing phone carriers and learning to use our new streaming device was not.

Thank God for Jacqui. She is far advanced beyond Nicole and me in her understanding of technology. And she is willing to help. Nicole and I have made progress in understanding how to use Apple TV and Hulu and we still have a ways to go. I’m happy with the dollars we are saving.

An awareness I didn’t expect, after witnessing Jacqui’s very different manner, was noticing how contracted and defended I have become. I approach armed and ready … alert in every interaction to being taken advantage of and cheated out of my hard-earned money. Of course, the customer service representatives are not to blame. They don’t make the policies. They are just trying to make a living. And they bear the brunt of our increased stress. And that isn’t good for any of us.

I firmly believe that the rampant greed and contentious climate in our culture today contributes to our stress. Clearly I’m not alone as the articles I referenced above prove. Whew!! However, watching Jacqui joke with customer service representatives and extend kindness to them brought me up short.

Being tense, anxious, defended, and contracted are not ways I want to be.

So, I am increasing my motivation by embarrassing myself here and revealing one of the worst parts of me. My plan for change is:

  • determine what I want and need before the call or encounter
  • breathe deeply
  • set my intention to be kind to the rep and to my body
  • and to assertively ask for what I want and need.

These are skills I have possessed for a very long time. I plan to start being intentional about using them again.

 

 

 

 

 

 

 

 

 

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.

Deciding to Change

This post was originally written on September 4. It is a bit dated. I’m late in posting it because when I returned from my trip to the MDF conference in San Francisco (September 7-10), my experience there was more pressing. Then I had computer problems and my September 11 post was finally able to be delivered on October 9. I hope to be back on track now. Thank you for bearing with me.

The television program commemorating the twentieth anniversary of Princess Diana’s death on August 31, “Diana, In Her Words,” portrayed Diana maturing before our eyes. At first shy and reticent, she peered through her eyelashes as she held her head down, a close-lipped smile spreading across her face.

Later, with her shoulders back and her head held high, her eyes glistened as she flashed broad smiles.

During her interview for the program which was used this year to commemorate her death, Diana reflected on the moment she decided to change. Instead of succumbing to the self-defeating behavior issuing forth from her fear and jealousy, she resolved to focus outward on the downtrodden, making advocacy for them her life’s work.

She decided to align her efforts with a purpose larger than herself.

 I remember the moment I decided to change.

“… I felt ripped apart, like a fraud living a double life. I hated the incongruity …. It needed addressing, and I felt ready to face the challenge. I felt ready to make a change. And a big change was what was called for.”  ~excerpts from A Long Awakening to Grace.

 

“Unnerved at first, I felt as though I had been dropped into an alien world.” Page 125 of A Long Awakening to Grace

“It is in facing your conflicts, criticisms, and contradictions that you grow up. You will remain largely unconscious as a human being until issues come into your life that you cannot fix or control and something challenges you at your present level of development, forcing you to expand and deepen. It is in the struggle with your shadow self, with failure, or with wounding, that we break into higher levels of consciousness.” ~Richard Rohr

Almost thirty-three and a half years later, I am eternally grateful that I made that decision, took the steps to change, and stayed with it when the going got rough. I would not trade where I am today for where I was in April 1983. I learned that in that so-called “alien world,” I received the life-giving nurturance I needed to blossom and thrive.

As I listened to Diana reflect on her life and as I reflect on my own, I wonder ~~

What in your life do you need to change … or have you found the need to change in the past?

What step is the still, small voice of wisdom within encouraging you to take … or did encourage you to take in the past?

If you have decided to make a change, in what ways are you wiser today than you were when you took those first faltering steps? 

What change could you currently pursue that would lead you to higher levels of consciousness?

Exploring questions like these are the kinds of conversations that fuel my enthusiasm for life.

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

Making Outrageous Requests

My SCN sister writers and I have been learning how to make Outrageous Requests. Our teacher, Debra Winegarten, is a master at it. She says the important thing is to ask. We never know what response we will get … “Yes,” “No,” or a counter offer. I’ve been practicing.

Outrageous Request #1:

Last February during my daughter’s appointment, I asked Dr. Kissel, “Do you have time to read anything besides medical-related literature?”

John T. Kissel, M.D.
Chair, Dept. of Neurology
Director, Division of Neuromuscular Medicine
OSU Wexner Medical Center

He said he did.

“Okay, then I’m going to make an outrageous request.” I pulled a packet from my bag and handed it to him. “Would you read my memoir?”

His eyes widened. The packet was huge because my approximately 80,000 words were double spaced and printed on one side of 8 1/2 by 11 paper.

Then I said, “If you like it, I’d be honored if you would give me a blurb for my back cover.”

“How soon do you have to have it?” he asked.

I didn’t know. I was still in the final stages of working with my developmental editor, and my manuscript hadn’t yet been copyedited. I hadn’t submitted it to that prestigious hybrid publisher for vetting.

Fast forward to July 2017. During my mad dash toward publishing with April’s assistance, I contacted him and said, “If you are willing to give me a blurb, now would be the time.” He actually sent me two and below is the one I chose:

“One of my physician colleagues, when asked how he dealt with ‘such depressing neuromuscular diseases,’ replied, ‘I have the greatest job in the world because I get to work with heroes every day.’ This remarkable memoir chronicles one such hero’s quest to find an answer to a genetic riddle that had severely impacted her family for decades. The story is moving, meaningful, and inspiring and reading it has made me a better doctor. It is a tremendous resource for other families in similar situations.”  ~John T. Kissel, M.D.

We couldn’t fit all that on the back cover, so we edited to capture the essence of what he wrote. I think he will approve.

“This remarkable memoir is moving, meaningful, and inspiring. Reading it has made me a better doctor. It is a tremendous resource for families dealing with genetic riddles.” ~John T. Kissel, M.D.

What a gem of a doctor, Dr. Kissel is. I’m so grateful he is in my daughter’s and my life. The first time we saw him, he asked me how I was doing. He is the first doctor ever to do that. I breathed a sigh of relief. Finally we have a doctor who gets it.

Outrageous Request #2:

With time being of the essence, I didn’t think I had time for my original plan for my memoir’s cover. So I started looking for an alternative.

That artist/photographer from Paris I featured in my June 30 post had a project that fascinated me, Mimesis. I was drawn to one of Janiak’s images and thought it would be a good choice for the cover.

I imagined that, even if Jeb gave me permission, it would be way out of my price range. But I wouldn’t know unless I made an OR. And so I did. He didn’t respond immediately, but when he did, he was willing for me to use the image, at a fair price I thought. But because he is busy working on another project, he didn’t have time to draw up a contract. I didn’t feel comfortable not having a contract, but was proud of myself for asking. And I got a better response than I anticipated.

Outrageous Request #3:

It is also important to have another writer in your genre give you a blurb. One of my Story Circle Network sister writers is an award-winning memoirist from whom I have learned a lot. My memoir is better and deeper because of what Susan J. Tweit has shared in our group about the process of writing memoir.

Susan J. Tweit

When I read Susan’s memoir, Walking Nature Home: A Life’s Journey, I experienced her as a deeply spiritual woman. I knew she would understand the spiritual aspect of my journey.

I knew what all Susan had on her plate. I would have to make a HUGE OR. I gathered my courage and on July 16, I sent her an e-mail request.

It is customary to give another author at least three months to read and respond. Only if your writing and story are good enough, something an author would feel okay about putting their name to, do you get the requested blurb.

Susan had to think about it and see if she could work the reading into her already packed schedule. When I heard from her, she let me know there was no guarantee she would be able to give me a blurb, but she wanted to be supportive. She gave me a time frame and said if I didn’t need it until then, she thought she could get the book read.

I gave her five more days and told her I would be disappointed if she didn’t like my memoir, but would still admire her and would deal with it. I didn’t want her to feel obligated or pressured in anyway. I wanted her honest assessment. And so I waited.

She finished one of her writing assignments early and was able to work reading my memoir into her schedule. She didn’t need the extra five days. She saw my book as written in a way that will be helpful and inspiring to others. I was thrilled, as you can imagine, with her affirmation:

“A Long Awakening to Grace shows the transformative power of an open heart and questing spirit. Faith buoys Linda Marshall through decades of family pain and tragedy caused by a mysterious genetic condition. Over the course of this inspiring journey, love opens the way for profound healing.” ~Susan J. Tweit

Pure Gift … I didn’t even have to ask:

And then April, author of five novels and self-publishing champion and my mentor par excellence, generously gave me a blurb for inside the book. She captures another part of the story:

“Linda’s memoir is more than just a retelling of her life story. This work of nonfiction functions on so many levels. In addition to being a brilliantly insightful spiritual exploration and narrative about a rare genetic disorder, it’s the quintessential story of the American woman born in the 1940s, growing up in the 1950s, and dealing with stifling gender roles imposed on American women of that era.”

As you can see, I am richly blessed … and these past few weeks I’ve been experiencing showers of blessings. Please celebrate with me. I am so grateful.

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