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.

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.

 

Unexpected and Continuing Gifts of Grace

People often ask memoirists why we write the story of our life.  Writing is for me a spiritual practice — an exploration of the deepest terrain of my soul. I felt compelled to write my story. In the beginning stages, I couldn’t have told you why.

In my studies on the art of writing memoir, I learned of the importance of writing honestly about our shortcomings … of not glossing over our flaws and failings. I was determined to be as honest as possible. That meant facing head on a fear I had lived with from a young age … the fear that there was something wrong with me that made me unlikable and unlovable. You may remember that I kept Brene Brown’s book, Daring Greatly, in the book cubby above my writing desk.

At the end of eight years of writing A Long Awakening to Grace, I received a whole new perspective … my life finally made sense. The writing proved to be healing and transforming … an unexpected and welcome gift of grace.

Publishing what I wrote was another matter. I needed to let go of a coping mechanism I had used since childhood to avoid criticism … being quiet and invisible.

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.

Except for my twelve-step support system where it was safe to be open and vulnerable, I lived a double life. I avoided people and activities where I might need to reveal my life beyond the superficial. In my professional associations, I didn’t talk about the nitty gritty details of my personal life, even with colleagues I trusted.

Publishing my memoir was a big deal. In exposing my flaws and shortcomings to my readers, I risked the possibility of actualizing my childhood fear of being judged unlikable and unlovable. My editors even prepared me for such a possibility.

“Vulnerability is the birthplace of love, belonging, joy, courage, empathy, and creativity. It is the source of hope, empathy, accountability, and authenticity. If we want greater clarity in our purpose or deeper and more meaningful spiritual lives, vulnerability is the path.” ~Brene Brown

 

The truth of Brene Brown‘s words revealed itself in these comments from readers:

“…it took courage to be so open and vulnerable.”

“…your honesty and vulnerability shown through … You are a true hero in my eyes.”

“Your willingness to be vulnerable and open about your challenges and struggles and self-criticism leave me in awe.”

If there are readers out there judging me, they are keeping quiet. If and when judgment comes, these voices will override them:

“You memories have given me hope I can survive the past two devastating years.”

“…your sharing has given me strength and courage. …your brave vulnerability has been healing for me and I am extremely grateful.”

“Your story confronted me and gave me hope.”

“Your book will bless many people.”

 

More words of wisdom from Brene Brown:

“Courage is contagious. Every time we choose courage, we make everyone around us a little better and the world around us a little braver.” Brene Brown

And then last week, an awareness began to float to the surface of my consciousness. I’ve put it all out there … my worst stuff … for the world to see. I no longer need to hide. I’m truly free … another unexpected and welcome gift of grace.

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

Another Step Forward

In my July 2016 post titled A Second Chance, I reflected upon my daughter’s inability to continue working and need to move in with me following her surgery. I wrote, “The treasure I found is the ‘opportunity’ my daughter’s living with me gives. I am being given a second chance to extend love to her, up close and personal, in ways the immature self of my past was unable.

It is a bit of a miracle how well we have adjusted. My friends who watched me struggle in the early months are amazed at how my relationship with Nicole has evolved. I’m kind of amazed myself.

During my five months of struggle to accept our new reality, I realized that my relationship with my daughter was more important than keeping my home perfect. I intentionally let go of having my sanctuary in perfect order. That is something the immature me from my past could not have accepted.

To my delight, my daughter has worked to respect my need for order and beauty in my living environment. She is neater than she used to be and has voluntarily assumed responsibilities without my even having to ask. That has meant a great deal to me.

Then, about a month ago, she approached me and said, “Mom, if I could afford one of those walk-in tubs, would you let me get one?”

 

I knew she couldn’t afford it, but told her to go ahead and explore it. I thought her realizing that for herself was better than my nixing her request, something my immature self would have done.

And so she made a date with a salesperson to come talk with us. As I listened to his explanation of the benefits, my perspective started to shift. I thought this might work well for me, too.

As long as Nicole lives with me, I don’t have the option of moving into an assisted living facility. I’m not ready for that yet, but foresee the day when it might be a welcome option. The salesperson spoke about home healthcare aids having an easier time bathing frail, elderly people. That would address one of the issues I might face as I grow older.

The salesperson went outside and left us alone to make a decision. Nicole asked me, “What are you thinking, Mom?”

Later, as I reflected on our conversation, I realized that our relationship  had shifted from a hierarchical mother-daughter one to a more equal partnership.

I told her what I realized about how the tub could benefit me as well. Then I addressed the issue of finances. “This is how much money you have to put toward it. This is how much I could put toward it. The rest we would have to finance. That means we would need to reduce our monthly expenses.”

Her immediate response astounded me. “I’ll give up watching the Hallmark Channel.” That is a major form of entertainment for her. I suggested we visit some friends who have cut the cord with cable and explore alternative ways of watching our favorite programs. She agreed and we are in the process of taking this step.

I told her we could make a game of saving money.

I mentioned that she spends a lot of her grocery money on snacks, that they are expensive, and they aren’t good for her anyway. She is definitely her mother’s daughter. She loves potato chips as much as I did before a stent being placed in my heart in 2005 convinced me they were a luxury I could no longer afford. Nicole has not eaten a potato chip since we made this decision. Another huge decision for her.

The hardest thing for me to give up was having the house cleaned once a month. We decided to do it ourselves and we did a pretty good job working on it together. That is truly a miracle in itself. Still, I hope we will be able to add that back in after our other cost-cutting endeavors.

Nicole’s tub was installed last week. Here she is showing it off to Jacqui, who is living with us for awhile., having just returned to the States after a year in Taiwan. (And Jacqui hasn’t turned gray. She was being silly and wearing a wig.)

That tub is definitely evidence that my relationship with Nicole has entered a new phase. We have both shown evidence of maturing in our ability to demonstrate our love for each other. I am eternally grateful for this step forward on both our parts.

P.S.: I treated her to a bag of potato chips this week. I thought she had denied herself long enough. 🙂

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

A Life Well Lived

November 7 1933-November 5, 2016

Wayne B. “Dutch” Brady ~ ~ November 7 1933–November 5, 2016

“A life well lived,” the priest repeated. New to the parish, he didn’t really know my uncle. He couldn’t have known how true his words were as he paired “a life well lived” with “the importance of family” to my Uncle Wayne.

When I spoke with Terri, Uncle Wayne’s and Aunt Rosie’s youngest daughter, I asked her to tell me about his death. He had fallen, had a bleed in his brain, his kidneys were failing, and he had been in the hospital, in ICU, for a couple of days. On the day before he died, he was stepped down from ICU and  his vitals were improving.

At one in the morning on the day he died, Terri was awakened by a call from his nurse. He was agitated and they couldn’t calm him down. He was calling for Terri. The nurse asked if she would come.

When Terri and her husband arrived about an hour later, she had a meaning conversation with him that she told me she would treasure forever. During the visitation held on Wednesday, November 9, I heard more about that conversation from Aunt Rosie and Terri.

Uncle Wayne told Terri to write down everything he was about to tell her. He had his financial affairs in order and told Terri where she would find what she needed to take care of her mother after his death. Uncle Wayne’s hobby had been woodworking. He told Terri to write down the names of each person and the gift of his tools they were to receive. Once he had accomplished that, he relaxed and declared, “I’m going to die today.” By 2:25 that afternoon, he was gone.

During his funeral on Thursday, one of Uncle Wayne’s granddaughters sang with tears in her eyes. Her strong, rich, melodic voice led us in singing the most uplifting of hymns. Later she told me she had chosen all the music for his service. I’m sure Uncle Wayne was beaming his pride from the other side.

At the luncheon following his funeral, I was invited to sit with the family. In my mind’s eye, my cousins were still teenagers — my last significant contact with them. Now they are parents and grandparents. I marveled at the family these two produced.

wayne-rosie-wedding

April 16, 1955

 From these two came four.

Tim, Ted, Tammy, and Terri

From those four came twelve.

Grandchildren, the center of Uncle Wayne’s and Aunt Rosie’s lives.

And from those twelve have come nine.

Great grandchildren who  may never know the importance of their great grandfather’s intention for his life.

But they will benefit from it.

Around the table, I observed my uncle’s children relating to their nieces and nephews and grandchildren with such fondness and care. I watched Ted’s daughters wrap their arms around their father with obvious affection. He beamed devotion as he returned their endearments.

I couldn’t help but notice the contrast with the family gatherings of my youth after my parents, brother, and I moved to my mother’s hometown, New Bremen, Ohio. My mother and her three sisters talked loud and bickered with each other, jangling my nerves. Uncle Wayne, only nine years older than I and like a big brother to me, tried to lighten things up with ornery antics.  At ten years old, I came to see their behavior as the scars they bore as a result of growing up with a violent alcoholic father. I didn’t know my grandfather because my grandmother divorced him when my mother was pregnant with me.

In my forties, I read about patterns of behavior members of alcoholic family’s adopt in order to survive. To my surprise, I found myself in those patterns that get passed down from generation to generation, even when the active alcoholism or addiction is not present. I recognized in myself the hero child/lost child patterns.

I thought my family would enthusiastically support my archeological dig into family history. As astute as I had been at ten about the source of their scars, I had no appreciation for the depth of the pain just below the surface of their merry-making, fun-loving personas that often grew contentious. At first, my mother tried to answer my questions, but one day she said, “I don’t want to talk about this anymore.” With that she closed the door.

I only asked Uncle Wayne once to tell me about his father, someone I could only remember seeing once when I was eight. He told me he had no use for his father. “He never helped, Mom. He never supported his family.” Seeing his pain, I never asked again.

After hearing Terri tell me the nature of her meaningful conversation with her dad, the import of his agitation became clear to me. He could not relax until he knew Aunt Rosie, who has health problems of her own, would be cared for. To the end, he was determined not to be like his father. He would take care of his family. Once he had given Terri all the information she needed to take over for him, he was ready to leave behind his pain-ridden body and move on for his next adventure.

A life well lived. May he rest in peace knowing he accomplished his intention. He loved and took care of his family well. And with that, he broke the chain of generations of family wounding and pain.

“Good job, Uncle Wayne. You got it right.”

 

It Takes a Village

One of the presenters at the Myotonic Dystrophy (DM) Conference held at Cincinnati Children’s Hospital yesterday noted that it takes a village of doctors and researchers to address the issues associated with DM.

I thought, “It also takes a village to live with the issues associated with myotonic muscular dystrophy.” I was grateful to make some in-person connections.

Connecting with the DM Village

When Nicole and I walked in, Jane Shields from Indiana greeted us immediately. She recognized me from our Facebook caregivers’ page. Here are pictures of Jane and her family. Later we ate lunch at the same table.

shields-family-at-dm-conference

The Shield’s Family from Left to Right Andrew, Kelly, John, Matthew, & Jane

Immediately after being greeted by Jane, Ted Salwin walked up. He is the leader of the Indianapolis DM support group. Ted has gained a lot of wisdom while dealing with his wife’s and son’s DM and generously gives so much of himself to the DM community. He blesses many of us in myriad ways. Sadly, he has lost both his loved ones to this disease. But that hasn’t stopped him from his involvement in the DM community. He and I are Facebook friends and it was a thrill to meet him in person. I spontaneously reached out to give him a hug.

Ted proudly wearing his DM Warrior sweatshirt.

Ted proudly wearing his DM Warrior sweatshirt.

Kathleen Cail helped organize this conference. She said they hoped to attract at least twenty people. Sixty people registered. People were there from as far away as Rochester, New York and somewhere in Illinois. And I actually met someone from Dayton. She just happened to sit next to me in the family support group. It was the first time either of us has met someone from Dayton dealing with this disease.

kathleen-cain-facilitating-faminly-support-group

Family support group being facilitated by Kathleen Cail (black boots)

family-support-at-dm-conference

Bonnie from Dayton with dark ponytail.

The Faces of Hope

John Kissel, Nicole’s Ohio State University neurologist, was our first presenter. He co-directs the MDA clinic at OSU. DM is one of his areas of interest and he is a principal investigator for a promising study of a therapy that could lead to a cure for DM. Here he is checking his messages after talking with John and Jane Shields during our lunch break.

dr-kissel-jane-john-shields

John Kissel, M.D.

Lubov Timchenko, heads a laboratory located at the University of Cincinnati, where research is being done on the molecular pathophysiology of DM. She is a renowned expert researcher in the development of molecular therapies that will hopefully lead to clinical trials and a cure. She was our second presenter. I connected with her after lunch and she agreed to let me take her picture if I was in it. Here we are:

Lubov Timchenko, Ph.D.

Lubov Timchenko, Ph.D.

I didn’t get a picture of our third presenter, so this one is from the web. Joseph Horrigan is a pediatric neuropsychiatrist who recently accepted a position as the head of clinical development with AMO Pharma. Dr. Horrigan is leading a team that designed and commenced the first clinical trial specifically targeting congenital and childhood-onset DM.

dr-horrigan

Joseph Horrigan, M.D.

I did get a picture of two of the people who work with Dr. Horrigan at AMO pharma. Talking with them was exciting because they told me the drug they are developing will help with the executive function deficit aspect of DM, the feature of the disease that has most affected our family.

Joff Masukawa and Lisa Wittmer

Joff Masukawa and Lisa Wittmer

In his presentation, Dr. Kissel mentioned Shannon Lord and asked if any of us remembered her. I think I was the only one in the room to raise my hand. She is one of the founders of the Myotonic Dystrophy Foundation and unfortunately died of cancer in June of 2013. Click her picture to read an inspiring tribute to her.

shannon-lord

Shannon Lord

Dr. Kissel mentioned that Shannon advocated strongly to researchers and doctors to deal with the effects on the brain as well as the muscles, noting that it is easier to deal with muscle issues than with cognitive and personality changes.

I never had an opportunity to meet Shannon in person, but did view a video of her presentation at the 2012 conference which used to reside on the MDF website. When she described her son, Hunter, it was like she was talking about my son, Doug. Decades of guilt and shame dropped off my shoulders as I listened to her describe the behavior and life challenges of a small percentage of those suffering from DM. Here was a mother who understood what I had gone through like no other could.

Dr. Kissel noted that researchers are only beginning to address the cognitive/behavorial aspects of DM in a serious way. I hope my memoir, A Long Awakening to Grace, adds to Shannon’s voice in advocating for and supporting this area of research.

While I don’t totally understand the technical aspects of the presentations, despite my pages of notes, what gave me hope is that DM is in the spotlight now, progress is being made on many world-wide fronts, and a cure is in sight.

The Myotonic Dystrophy Foundation has been leading the way bringing DM to the attention of some big players. I was unable to attend the national conference in Washington, D.C. held the same weekend I was in Port Clinton for the 50th high school reunion of my former students (September 15-17). Pam Speer Lewis, MDF’s project development manager, filled me in on some of the advocacy work accomplished at the conference.

Pam Speer Lewis, MDF Project Development Manager

Pam Speer Lewis, MDF Project Development Manager

Historically, it has been very difficult for people suffering from DM, a multi-systemic and little understood disease, to receive disability. Nicole and I are well aware of that.

At the national conference, people with DM, their family members, and an attorney who represents people seeking disability met with high ranking officials from the social security administration to educate them. Pam said they left with a much greater appreciation of the challenges faced and a better understanding of how to determine the eligibility for DM applicants.

In addition, representatives from the FDA were present to learn about the strides being made in researching drug therapies to alleviate symptoms and possibly cure DM. Gaining this knowledge will help facilitate the approval process, making these therapies available at a faster pace for those suffering from DM.

This was my first in-person connection with the DM community. I left the conference feeling eternally grateful for all the interest in finding a cure for DM and for the advocates who are trying to make life easier for those who have this disease and their caregivers. Sometimes it is hard to hold onto hope when you experience or witness DM’s ravages.

It takes a village to keep hope alive…Hope was alive in Cincinnati yesterday! Praise be!!

Healing the World

holding the world

As the world around me swirled (I awoke with vertigo this morning), I began listening to Chapter 2 of Krista Tippett’s new book, Becoming Wise: An Inquiry into the Mystery and Art of Living. I had barely begun listening when words of wisdom about the mystery and art of my own life circumstances emerged. 

“We are all healers of the world. It isn’t about healing the world by making a huge difference. It is about healing the world that is around us. That is where our power is. How would I live if I were exactly what is needed to heal the world?” ~Rachel Naomi Remen

Remen’s words remind me how important extending “conscious love” to my daughter is—the treasured “opportunity” that awakened within me while rummaging through the darkness that emerged when it became clear she would be living with me full-time for an extending period of time.

Remen’s wisdom, learned from her Hasidic Jewish grandfather, places this “opportunity” into a larger context. I am exercising my power to change the world.

My True Self, the higher part of me who already knows how to love, watches. I move through my days extending love in quiet ways no one around us would notice. The difference I make is not huge, but, in the week since I’ve been “consciously loving,” I do see a difference for my daughter…and for me.

I will continue keeping Remen’s question before me: “Am I living as though I am exactly what is needed to heal the world?”

The question Elizabeth Alexander asks at the end of her poem below touched my soul:

“And are we not of interest to each other?” ~ Elizabeth Alexander

Ars Poetica #100: I Believe by Elizabeth Alexander

Poetry is what you find

in the dirt in the corner,

 

overhear on the bus, God

in the details, the only way

 

to get from here to there.

Poetry (an now my voice is rising)

 

is not all love, love, love

and I’m sorry the dog died.

 

Poetry (here I hear myself loudest)

is the human voice,

 

And are we not of interest to each other?

And Fr. Killian McDonnell’s reminder in his poem below bestowed levity:

Perfection, Perfection by Killian McDonnell

(“I will walk the way of perfection.” Psalm 101:2)

I have had it with perfection.

I have packed my bags,

I am out of here.

Gone.

 

As certain as rain

will make you wet,

perfection will do you

in.

 

It droppeth not as dew

upon the summer grass

to give liberty and green

joy.

 

Perfection straineth out

the quality of mercy,

withers rapture at is

birth.

 

Before the battle is half begun,

cold probity thinks

it can’t be won, concedes the

war.

 

I’ve handed in my notice,

given back my keys,

signed my severance check, I

quit.

 

Hints I could have taken:

Even the perfect chiseled form of

Michelangelo’s radiant David

squints,

 

The Venus de Milo

has no arms,

the Liberty Bell is

cracked.

Such a rich way to begin my day. Thank you, Krista and Company!!
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