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.

Showered with Blessings II

I couldn’t sleep the morning of my 75th birthday, so I came to my desk and opened my e-mail. There was a message from “the Debster” as she is affectionately known in the Story Circle Network‘s Works-in-Progress writer’s group. My second publishing angel had appeared and blessed me with the best birthday gift possible.

The Debster

Debra Winegarten is a force to be reckoned with. The women in our online writing group are constantly amazed at her energy and all she accomplishes. She’s an author, publisher, college professor, master marketer, public speaker, extraordinary friend, and lover of life. And she has taken a special liking to me after we tied for third place in an SCN Lifewriting contest. We have become heart sisters.

Deb is an extrovert and a favorite activity of hers is going to book and speaking events, not just to promote her books, but to meet and touch people’s lives. She recently told us a poignant story where she profoundly touched the life of a woman who had just lost her husband in an auto accident. Even after the event, she went out of her way to meet a need this woman had expressed. She sees this as her purpose and her books are just the venue that puts her in people’s lives. I love that about her.

Now, I’m an introvert, and I don’t find putting myself out into the world easy. Deb knows that. When she learned I was going to San Francisco to the Myotonic Foundation conference, she went into action.

When I opened my e-mail the morning of July 15, Deb’s message said, “I found a ticket from Austin to San Francisco for $300. Can I room with you? I’ll sell your books while you schmooze with people at the conference. And I can be your Facebook paparazzi.”

I was stunned. It is hard for me to fathom her willingness to take time out of her busy schedule to support me, not to mention spending $300. It wasn’t easy for me to accept her generosity. But I’m living into a new part of myself these days, and I gratefully accepted. I am thrilled to receive Deb’s support. The conference will be even more meaningful because we will be sharing the experience together. Because of her example, I’m looking forward to seeing how other’s will touch my life and how I might be able to touch theirs.

And there is more to come. My blessings abound. Stay tuned.

 

Showered with Blessings I

It all began in late April when my manuscript was vetted by a prestigious hybrid press. I received the contract but just couldn’t sign it. It would have wiped out my savings and more. And my manuscript wouldn’t be published until August 2018.

I shared my dilemma with local writer, Jude Walsh. She suggested I join the Dayton Area Writers for dinner that Saturday evening, June 24. April Wilson, another local writer and champion for self-publishing would be there, and I could meet her.

I remembered the time of the meeting incorrectly and arrived one and a half hours late. Only three writers were there. Several regulars had other commitments that night. Holly and Jude were leaving about the time I arrived. April stayed while I ate dinner, and we talked. It was fortuitous that I arrived late, because this conversation would likely not have happened had I been on time.

April proceeded to sing the praises of self-publishing and tell me about her success as a romance author. I was impressed.

Then she asked me about my project. I told her about my memoir, the contract sitting on my desk, and my difficulty in signing it. When she heard how much money it would cost me to publish with this company, she sang even more praises for self-publishing.

Then she offered to help me self-publish my book. She says she loves to mentor authors. And she was willing to do everything that needed to be done to get my memoir out into the world without charge.

I was stunned and asked her, “Why would you do that?”

She said, “Because you’re a nice person, and I like doing it.”

Then I told April about the conference I was attending where a major part of my target audience would be. She wanted to know when that conference was being held? When I told her September 7-10, she said, “Then we need to have your book done by then so you can take it with you.”

My eyes bugged out. “Is that possible?”

“It’s very possible,” she replied.

And we went to work. And I learned how amazing April is! I’m a perfectionist and wanted to make sure my memoir was as professionally published as if that prestigious publisher had done it. She has gone above and beyond to make that happen.

Tonight we have a date to send the finished product off for printing. I am in awe. My hard work over the past four years and a lifetime is coming to fruition.

And this was only the beginning of my shower of blessings. There’s more to come. April is only the first Angel to appear. Stay tuned.

 

Remembering: Our Foundational Moments

On Wednesday, July 5, while my friends Kathryn and Sharon visited, another seminary friend, Pam, came for lunch. I wish I could convey in words the energy created in my home as we visited with each other. It was palpable and filled me with gratitude for these women and for the opportunities we have experienced in our lives.

Sharon (from Pittsburgh), Linda (from Dayton OH), Pam (from Austin), Kathryn (from Wichita)

I met Sharon and Kathryn in 1975 when we all began our sojourn with United Theological Seminary here in Dayton, Ohio. They graduated in 1978, a year before I did. Pam came to United later and had never met Sharon. Because Kathryn stayed in the area for a couple of years and I worked at the seminary for six years following my graduation, we had both met Pam.

So we began our visit by sharing how our lives had unfolded during the past thirty-nine years. And then we began to reminisce about our experiences at United — foundational moments for each of us.

Chapters 7 and 9 of my memoir, A Long Awakening to Grace*, recount how I was encouraged to enroll in United and some of my experiences while I was there.

Sharon, Kathryn, Pam, and I were among the first wave of women attending seminary in large numbers and we brought our curious minds and passionate hearts to our studies and the relationships we formed. We found our professors excited about the depth and breadth of the thinking of women students as well as our enthusiasm for our studies. Because women being called to ministry was a boundary breaking experience, we came with fresh perspectives.

We were unaware at the time how refreshing our presence proved to be for the faculty. One professor in particular had a reputation for being tough. But we didn’t experience him that way. He just loved quality work and expressed gratitude for women students giving it to him. He rewarded our efforts generously.

“Whoever believes in the good in people, draws forth the good in people.”  ~Jean Paul

All of us experienced being mentored and encouraged by faculty members to pursue the paths we were drawn to follow after graduation. The four of us looked back with awe at our professor’s generosity. We are all grateful to have attended United during this pivotal time in her history … a time when the faculty created a curriculum and an environment that drew out the best in those of us hungering to experience and live in alignment with the heart of Christianity.

“You shall love the Lord your God with all your heart, and with all your soul, and with all your strength, and with all your mind; and your neighbor as yourself.”  ~Luke 10:27

 

“This is my commandment, that you love one another as I have loved you.”  ~John 15:12

*A Long Awakening to Grace is slated for publication the end of August 2017.

Noticing

 

On Monday I had an opportunity to notice how I am being affected physically and mentally by the threats to the protections put in place after the 2008 financial crisis and to the Affordable Care Act. I can’t afford to lose what I lost in 2008. My daughter can’t afford to have another healthcare crisis if she is no longer covered by health insurance.

As a responsible person, a major focus in recent weeks has been consulting with financial and estate planning experts to once again make sure everything is in order. With my daughter’s changed circumstances … moving in with me and no longer being able to work and live independently … changes need to be made. As a single woman, I find it difficult to make these important decisions alone.

 

Spiritually, I know my daughter and I will be fine no matter what the future holds. I have experienced miraculous gifts of grace in the past, but as my memoir attests, my awakening tends to be long. And, it seems, I have been caught up in fear and dread again. I’ve been afraid to tap into my savings, including investing the money I’ve saved to publish my memoir. We might need it to deal with an emergency in the future.

During lunch with a friend on Monday, something had shifted. She is serving as a caregiver for her mother and is in a similar situation as I. She is single and needs to make decisions related to her mother in the same way I need to make decisions related to my daughter. She needed a listening ear. She said our conversation was very helpful.

And our conversation was helpful to me, too. It gave me an opportunity to notice a difference in myself. It was as though the light had burst through the dark clouds that had been hovering over me. I felt totally present to her, a contrast to my experience of myself in recent weeks.

My stomach has been tied in knots, I’ve lost sleep, and most noticeable to me, I’ve had difficulty with holding information in my mind and with word retrieval. But while listening and responding to my friend, I held onto what she shared and words I felt proud to utter and she found helpful flowed easily from my mouth.

And what could this difference be attributed to?

“But even the hairs of your head are all numbered. Fear  not, therefore; you are of more value than many sparrows.” ~Jesus of Nazareth in Matthew 10:30-31

Over the weekend, I received a gift of grace. Just a reminder that I am really not alone and that I never know who will show up and offer just what I need at just the right moment. I felt as though a weight had been lifted from my shoulders. And what a difference it makes in the way I move through life … in the way I was able to respond to  my friend.

I can let go of all the fear and dread because my daughter and I are being cared for and carried by a power greater than our own.

Thank you, Universe, I needed that reminder. As You know, I learn best through experience.

🙂

 

The Blessings of Friendship

Many years ago, I received a compliment from Anne Wilson Schaef, author of many books and someone with whom I trained in Living in Process, a spiritual way of life. After observing me during a weekend workshop, she called me over and said, “You do friend well.” I have never forgotten that and I try as best I can to live up to that. Of course, I sometimes fail, but I do my best to make amends and change my behavior. Because I have so little family, my friends are very important to me.

Last Friday I was treated to a delightful day with a significant friend I met while I worked at United Theological Seminary in Dayton, OH. Pam coordinated the Harriet L. Miller Women’s Center while she was a student. After she graduated, she went on to Union Theological Seminary in NYC to earn her Ph.D. in Christian ethics and then to teach at California Lutheran University. She has written three books:

  • She Hath Done What She Could: A History of Women’s Participation in the Church of the Brethren
  • Women Don’t Count: The Challenge of Women’s Poverty to Christian Ethics
  • Globalization at What Price?: Economic Change and Daily Life

While all of this is impressive, that is not what I value the most about Pam. She is a down-to-earth friend for whom I have a lot of respect. Visiting with her is a delight. We hadn’t seen each other for many years (our memories are different about the length of time). I found her on Facebook a few months ago and we reconnected on-line. That’s what I love about the internet, helping us find friends with whom we have lost touch.

Yes, Pam and I did talk about our concerns for the future of our country and the world, how we see what is going on, our fears as well as where we find hope. But for me, those were not my most meaningful exchanges with her.

I feel safe with Pam and believe she feels safe with me as well, because our from-the-heart conversations inevitably go deep. On this visit, we shared our experiences of aging, the losses we are mourning and how we deal with loss, travels and experiences that have enriched our lives (my life was enriched visiting Pam in NYC while she was working on her Ph.D.), the ways in which life for us personally hasn’t turned out as we imagined and how we’re dealing with that, the ways we are managing retirement and life as it is, and what we are looking forward to at this time in our lives.

Pam & Linda at Cox Arboretum

We started our day with an early walk at Cox Arboretum, hoping to miss the heat of the day. A man noticed our taking pictures of each other, approached, and asked if we’d like him to take a picture of us together. After taking this picture, he said, “Remember, Jesus loves you.” We smiled, gave each other a knowing look, and affirmed, “Yes, we know that.”

After returning to my home, washing off the sweat and changing clothes, I gave Pam several choices for lunch. Because she had never eaten at a Bolivian restaurant, she chose Nelly’s.

I was thrilled when the waiter sat us in a secluded corner. We had a lot of catching up to do. Before long, their house specialty, Nelly’s slow-cooked Charcoal Rotisserie Chicken, arrived. Nelly’s has a reputation for serving the best chicken in Dayton and it doesn’t disappoint. Pam said it was the best she has ever eaten.

 

 

 

 

 

 

I knew when we scheduled this day, it would be over way too soon. These are precious moments for me. I’m blessed to count Pam as a friend and ever so grateful we are planning future re-connections.

Transcendent Happiness

As we gathered, the female’s in my writing group groaned about our topic of “Happiness.” Our lone gentleman just smiled.

Gary, one of the deepest and most reflective men I have ever met, noted that on July 4, 1776, our Declaration of Independence named the pursuit of happiness as our inalienable right.

And then on April 10, 2017, 240 years later, Gary received this from Sounds True, “Your experiences matter. And how experiences change your brain profoundly affects your happiness.”

Sounds True was advertising a Rick Hanson masterclass. Hanson has written many books including Hardwiring Happiness: The New Brain Science of Contentment, Calm, and Confidence and offers several masterclasses through Sounds True.

Hanson is a psychologist with a special interest in neuroscience’s research about our brain’s neuroplasticity and how we can rewire our brain to get our emotions back in balance. He says that happiness is far more than a positive feeling that comes and goes. It is a skill that you can develop. Bridging neuropsychology with the great contemplative traditions, Dr. Hanson helps people learn to let go of negative experiences to make space for positive thoughts and feelings.

When Gary received this advertisement about Hanson’s masterclass, he asked himself, “Am I happy? Do I need to take this class?”

He began to write his reflections on these questions and after three drafts, felt happy with his result.

Personally, I think “I felt happy with the result” is an understatement.

Gary realized that he is and always has been a happy person. He hadn’t known that in quite the same way and that led him to ask, “What is the source of my happiness?”

His answer was profound. “I am happiest when I am ‘Engaging the Transcendent.” He went on to share the various forms in which he engages the transcendent.

You can read what he wrote here.

How would you answer Gary’s question: “What is the source of my happiness?”
In what ways do you “engage the transcendent?”

 

Influences: My Father’s Shining Example

Robert E. Marshall 1918-2009

Robert E. Marshall
1918-2009

In 1951, when I was nine and my brother eight, our parents sold our house in Sidney, Ohio, auctioned off most of our belongings, and moved to Tarpon Springs, Florida. Leaving our numerous playmates and beloved neighbors was not easy. I remember the morning we left, sitting in the backseat of the car with my stomach in knots, holding back tears as we said our goodbyes to John, Celeste, and Annie Voress, neighbors who were like family. I had no idea when we embarked on this one-year odyssey that it would have such a profound influence on me.

Dad dropped out of high school after his junior year. Sugar in his urine shattered his dream of joining the air force at the beginning of World War II and becoming an airplane mechanic. Never abandoning his fascination with flight and eventually the space program, he actualized his passion by focusing on car mechanics.

dads-gas-station

When we moved to Florida, Dad purchased a gasoline station. Because of the long hours involved, it became a family business. In order to spend time with Dad, Mom often worked there. Self-service was not yet a reality. Many a customer’s mouth dropped open when Mom approached their car to pump their gas. After school, my brother and I hung out at the station. I mostly remember causing trouble, but I’m sure we were given chores. I observed with keen interest this new environment, learning a great deal about the culture of The South, and being influenced by my father’s behavior and attitude.

The previous owner of the station attempted to teach my northern father how Jim Crow worked in The South. Jim Crow laws replaced earlier “black codes” which were designed to restrict and deny civil rights and liberties to African Americans. In 1951, they were part of the state constitution of Florida and mandated the segregation of public schools, public places, public transportation, restrooms, restaurants, and drinking fountains. The previous owner showed Dad how to cheat “negro” customers, though he used a derogatory term when referring to them. He didn’t need to tell Dad about the rules regarding the use of the one bathroom and one drinking fountain. “Whites Only” signs were prominently posted.

As soon as Dad took possession, those signs came down. I don’t know who influenced my father, but Dad always had a soft spot in his heart for the underdog. He treated his black customers with the respect they deserved. We developed a large black clientele.

“Blessed are the merciful, for they shall obtain mercy.” Matthew 5:7

When these customers needed work done on their cars but couldn’t afford to pay for it, Dad gave them odd jobs to do around the station in exchange. One day, a black gentleman approached my dad asking for a loan. Even though Dad wasn’t growing rich as a business owner, he loaned the man the money. I was there the next afternoon when this man, probably in his late 50s or early 60s, returned the money. “I didn’t need it after all,” he told my dad. Later, I overheard my parents speaking of the irony around the way blacks are viewed in relation to whites … comparing the integrity this black man displayed with the lack of character demonstrated by a white male employee who stole from us.

The Monday after Thanksgiving, I began listening to The Warmth of Other Suns: The Epic Story of America’s Great Migration written by New York Times Best Selling and Pulitzer Prize winning author, Isabel Wilkerson. Tuesday, I learned some shocking information about Florida I’m fairly certain my parents didn’t know … some facts that I’m sure the man who asked for a loan did.

Florida was one of the first states to secede from the Union in the months leading up to the Civil War and was one of the first in the South to institute a formal caste system designed to restrict black people after the war. Because Florida was shut off at that time from the rest of the world by its cypress woods and turpentine camps, it instituted its own laws and constitution, allowing this state to commit among the most heinous acts of terrorism perpetrated anywhere. Violence had become such an accepted way of life that a 1950 special investigation, just one year before we moved there, found that there had been so many mob executions in one county in the 1930s, there weren’t any negroes left to go to trial. In this culture, no negro man could have grown up without the fear of being lynched. That would have included the courageous man who asked dad for a loan.

I doubt when Dad removed the “Whites Only” signs and when he treated his black customers with fairness, he knew he was breaking the law, laws that continued in force until 1965. I’m sure he didn’t view this as an act of civil disobedience, even though that is what it was. I like to think his behavior wouldn’t have changed if he had known. It is the aspect of my father for which I carry the most pride.

“Blessed are those who hunger and thirst for righteousness, for they shall be satisfied.” Matthew 5:6

I didn’t know until this week the enormity of the action my father took when he removed those signs. To him, he was only showing respect for another human being. To me, he showed compassion for the struggle of those relegated to the ranks of so-called “losers.”

Dad demonstrated that same soft spot in his heart after we moved back to Ohio. At that time, New Bremen had about 1500 residents. Sometime during the next eight years before I graduated high school and moved away, black people were employed by the alfalfa mill on the edge of town. They lived in run down houses near the mill. I don’t remember seeing them in town except for one high school student two to three years older than I, a beautiful young woman who had the courage to attend one of the weekly dances held for teenagers at the hall above the hotel. I admired the farmer boy who asked her to dance.

I don’t think it was her family, but a fire destroyed the home of one mill family who bore the same last name as ours. Dad went around town collecting food, clothing, and household items for them. Someone asked him why he was doing that. He said, “They’re my cousins.”

“You are the salt of the earth;” Matthew 5:13a

001-2

2008

During the 2008 presidential election, Dad was an ardent supporter of Barack Obama. After the election, his health deteriorated rapidly as he grieved the loss of my mother who died early in the morning following Thanksgiving Day. He said he wanted to live to see how Obama fared in office. Sadly, he died on January 3, seventeen days before the inauguration. I have sometimes been grateful he didn’t live to witness the bigotry and obstructionism foisted upon our first black president. It probably wouldn’t have surprised him, but it would have only added to his grief.

In recent weeks I have been contemplating what influences people to be who and how they are. After twenty-six years as a political prisoner, Nelson Mandela transcended his anger and embraced forgiveness while his compatriots continued to harbor revenge? I read a story this week about a Muslim man who was shot in the face by a white supremacist after 9/11. His faith led him to forgiveness to the point he tried to save his assailant from death row and give his life to educating people about the transformative power of mercy and forgiveness. His actions changed the white supremacist’s attitude from hatred, which he had learned from his step-father, to admiration for this Muslim man and his parents who he realized were extraordinarily good people. These and other stories have caused me to reflect upon how influences in all our lives can be seen in our behavior for good or for ill.

I will never know the influences on my dad. Dad wasn’t a religious man, but in his interactions with those less fortunate than he, I see him doing his best to live “the way of love.”

“So faith, hope, love abide, these three; but the greatest of these is love.” I Corinthians 13:13

What I do know is that it is Dad who influences me to use my talents in the service of deeper spiritual values like respect, compassion, justice, forgiveness, authenticity, beauty. It is Dad who influenced me to write about Leymah Gbowee, Nelson Mandela, Victor Frankl, and Elizabeth Lesser, people who embody these values. It is Dad who influences me to continue to seek and lift up voices of wisdom, inspiration, and hope who bring light and enlightenment to our dark and murky world.

Thank you, Dad.

I have never been more grateful for your shining example.

1942

1942

1991

1991

1945


1945

Who has been a shining example in your life?

 What values have you adopted because of their example?

How have they influenced your behavior today?

In what way is your behavior contributing to “the way of love?”

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!!

A Synchronistic Meeting

sychronicity

After I retired, I joined a spirituality forum held at our local senior citizens’ center. A few members of the group gathered for a brown-bag lunch following our two-hour meeting. One day a new member joined us and during lunch mentioned that she was writing her memoir. I said to her, “I’m writing mine, too. We should become writing partners.”

Nita agreed to give my suggestion a try. That was in March or April 2012. With few interruptions until recently, we met every two weeks. This provided a structure to move forward. Every two weeks, I needed to have written something to read to Nita for her critique and vice versa.

As I listened to Nita’s story, it became clear to me that she was just the kind of woman I expected to judge me. Her marriage is fulfilling, her husband is supportive, she has four high-functioning children, and she developed a successful career. Of course, she faced challenges. Otherwise what would she have to write about in a memoir. But she handled her challenges with wisdom and skill.

My story is full of family challenges that it took me a long time to learn to handle with wisdom and skill. As we began meeting, I carried a great deal of shame and it took every ounce of courage I possessed to read some of my chapters to her.

Nita gave me excellent suggestions for improvement without an ounce of judgment. We developed a ritual of giving each other a hug as we came together and before we departed.

After we had been meeting for a year or so, I wanted to send Nita a card by snail mail. I searched for her zip code through google. Up popped a whole page of entries about Nita. I sat back in awe, exclaiming to myself, “Wow, she’s a famous artist! I had no idea.”

That gives you a picture of Nita’s character. She is confident and humble and doesn’t have a need to flaunt her success. In fact, she may not be happy with my writing about her success in this blog post. But, to me, it is an important part of our synchronistic meeting.

One day, after reading a particularly painful part of my story, Nita said, “I think I was chosen to hear your story.”

I replied, “It was definitely Divine guidance that brought us together.”

Recently, Nita and I were forced to put our memoirs on the back burner and take a break from meeting. My daughter’s healthcare crisis and her subsequent moving in with me took first priority. Nita’s publisher wanted her to put together a thirtieth anniversary edition of her first book, Exploring Color, and she needed to focus on that.

ExploringColor_CVR.indd

Links to Northlight and Amazon

My daughter is stabilized now and Exploring Color is out in the world to enthusiastic acclaim, so Nita and I are meeting again. Our memoirs are written and in various stages of editing. We no longer need to read passages for critique. But we find each other’s support invaluable as we continue the process toward publication. We still hug upon greeting and departing.

When I suggested to Nita that we be writing partners, I had no awareness that a “magical” connection was being made that would propel my soul’s longing forward. How blessed I am that Divine guidance chose Nita to be the first to hear my story.

1 2