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.

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.

 

Devotion

Many readers of my memoir have been telling me what an amazing woman I am because of the way I maintained my sanity while dealing with insurmountable obstacles. I almost responded to one of them, “I’ve worked hard at it.” And then I stopped myself. I had recently been given another way of looking at my journey. I have poet, Bob Kamm, to thank for that.

Even though I am retired as an Imago Relationship Therapist, I continue to be enriched by this amazing community of people who are devoted to changing the world one relationship at a time. Check them out here. Bob  Kamm is Imago’s resident poet.

Bob Kamm

Bob shared with the Imago community a poem he had written and his reason for writing it. He said that the words “work” and “commitment” were losing their validity for him when applied to love.  “I took a fair amount of time to dig into this to try to express what I felt on the deepest level.” And then he shared his poem, “Devotion.”

You can hear Bob recite “Devotion” here between positions 8:52 and 15:07.

Bob’s poem touched me and  caused me to look more deeply into how I have internalized cultural messages about working hard in every one of life’s realms in order to receive good things…how the encouragement to be good little girls and boys plays out in our adult life, becoming our “Dominant Noun and Verb.”

I could see the truth of that for me as a Type A personality and why I responded to my friend as I had. Through Bob’s poem, I found a different way of looking at the actions guiding my life … a deeper element than “work” guiding me.

While Bob acknowledges that “work can be a great good,” it doesn’t speak to what calls to him when he enters the realm of LOVE, which he refers to as the “Ultimate Noun and Verb of Life.” When it comes to LOVE, he finds the words “devotion” and “vow” calling to him.

Through reading Bob’s poem, I came to a deeper appreciation for the word devotion as well as for devotion as a spiritual path. And I realized that the reason the readers of A Long Awakening to Grace can refer to me as amazing is because of my devotion.

From the age of ten, watching my extended family, scarred by the shadow of alcoholism, struggle to relate lovingly to each other and often failing, I knew there had to be “a better way” of loving.

“During my unconscious years, quality meant the better way to be family, an ideal that had fascinated me since I was ten years old. Under my fascination was a yearning to experience love, the greatest of spiritual gifts. Because I was not awake to the spiritual significance of my longing and love didn’t come in wrappings I recognized, I distorted it throughout a good part of my life.

I pondered love’s rough edges in childhood and searched for love’s balm in every relationship. I studied love intellectually and entered experiential training programs to learn about it empirically. Love’s expression encompassed my calling and ministry as a family and couple’s therapist.” ~except from A Long Awakening to Grace

 

 

I didn’t consciously make a “vow” to grow in my capacity to extend love. I experienced myself as being called to a path I could not avoid…like a mandate from The Divine. I worked hard, and I did grow in my ability to be loving in some very difficult circumstances. But because hard work didn’t provide the fruit for my labors I longed for, I would not have stayed the course. I would not have awakened to Divine Love and Grace. Thankfully, I was devoted to the inward call of my soul.

If you appreciate words flowing with wisdom as I do, you can check out Bob’s poetry and musings about life here. Gazing is just one of Bob’s books of poetry. He is an amazing man, and I’ll bet that has something to do with his devotion…to Love and to Living Life on a profoundly deep level.

The Greatest Love of All

Photo by Rick Guidotti of Positive Exposure

“Nicole is lucky to have you for a mother. You show her great love.”

These are words I frequently hear from those who know the lengths to which I go to find resources for her. I see this as my responsibility. I know it is a loving action, but I have the skills to do it and the only thing hard about it is finding the time to follow the leads and dealing with the disappointment of blind alleys and insufficient assistance and services.

Showing her love is something different in my book. Love is changed behavior and is, to my way of seeing, a powerful demonstration of love. It takes much more conscious effort. And it forces me to grow.

Nicole and I have both been showing our love by changing our behavior since she moved in with me a little over a year ago. After she reached adulthood, we tried living together before, and it didn’t work well. This time, we are both growing.

To ease the transition, I suggested we be intentional about giving each other a hug before going to bed at night. Expressing our love by hugging and expressing terms of endearment greatly reduced the tension in the air. It took about five months for us to begin to relax into a routine with each other that seems to be working for both of us.

Behavior I have changed:

  • I’m not as fussy about my home being neat and tidy.
  • I’ve stopped (except for a recent slip — I’m not perfect) screaming, yelling, and stomping when I’m frustrated or scared.
  • I take into consideration her preferences.
  • I watch TV programs she enjoys even though they are not my first choice and I wouldn’t normally give them the time of day.
  • I say “thank you” a lot more frequently.
  • I accept much more graciously what I cannot change about the way her disease affects her behavior.
  • When our needs clash, I engage her in problem solving to find a solution that works for both of us.

Behavior I’ve noticed that Nicole has changed:

  • She’s less messy around the house.
  • She’s forthright in her dislike of my frustrated/scared behavior.
  • She watches some TV programs I enjoy even though she finds them boring.
  • She initiates and takes responsibility for household chores without being reminded. (I really like it that she has taken responsibility to clean up the kitchen after I cook.)
  • She kids with me about my quirks.
  • She respects my need for silence and uses her headphones when I’m writing, meditating, or reflecting.

I know Nicole would rather live independently and I would prefer that, too. But that is not likely to be possible anytime soon. So, in the interim, we show our love through changed behavior. In my book, that’s the greatest love of all. And this is not what I set out to write today. Interesting.

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?”

 

Changing How We See

“Your eye is the lamp of your body; when your eye is sound, your whole body is full of light; but when it is not sound, your body is full of darkness.” ~Luke 11:34 RSV

In my October 8 post, “Scales Falling From My Eyes,” I shared how my former students enthusiasm about seeing me again and sharing about the difference I had made in their lives led me to go back to my motel room, look in the mirror, and say to myself, “Linda, I think it’s time you started looking at yourself differently.”

When the student is ready, the teacher appears

I find it interesting and awe inspiring how the Universe conspires to help us grow. Almost as soon as I said those words, I was led to listen to Susan Cain’s book, Quiet: The Power of Introverts in a World that Can’t Stop Talking. I was aware of Susan’s book at least three years ago and knew I wanted to read it, but somehow I didn’t get to it until just the right moment to be able to garner its wisdom for me.

Teacher Number 1

quiet

In Quiet, Susan addresses how our society moved from being a “culture of character” to a “culture of personality.” Whereas we once valued good deeds performed when no one was looking, we now value magnetism and charisma. Instead of Abraham Lincoln as our ideal, we now idolize movie stars with just the “right” facial features and body types.

Listening to Quiet, I heard  Cain point out just how significant appearance is in our society. That has become abundantly clear in a most hurtful way in our recent presidential election. Our success in life is judged by the standards set for supposedly “the most beautiful people in the world.”

Awakening to the effects of our “culture of personality’s” influence on me, I didn’t like what I saw. I didn’t like it that I felt the sting of viewing myself negatively because I fall short of our society’s standards of beauty. I didn’t like it that I look longingly at the women who do possess our society’s standards of magnatism and charisma. I didn’t like the difficulty I have seeing beauty in those who don’t fit our cultural standards.

I wanted to rid myself of this scourge.

Teacher Number 2

In my October 29 post, I wrote about meeting Rick Guidotti at the Myotonic Dystrophy Conference held in Cincinnati on October 22. As an award-winning fashion photographer, Rick has photographed women and men who are considered the most magnetic and charismatic among us … our culture’s most beautiful. But he grew frustrated with being told who was beautiful and who he had to photograph. Because he sees beauty in diversity and finds it in places where others wouldn’t even think to look, he changed his life and is making an enormous difference in the lives of many others.

Because he SEES beauty in everyone

 

The mission Rick committed to through Positive Exposure is to transform the way the world views beauty. Wow, do we need that today. He wants to change public perceptions of people living with genetic, physical, intellectual and behavioral differences. One out of five children  in the United States is born with a disability making the need for society to understand and respect children and adults living with these differences critical. Positive Exposure’s educational and advocacy programs reach around the globe to promote a more inclusive, compassionate world where differences are celebrated.

Rick’s book, Change How You See, See How You Change features over 50 genetic syndromes through portraiture and personal narrative, giving expression to each individual’s heart and soul. It invites readers to see beyond diagnoses to the humanity we all share.

Thank you, Rick, for changing how I see.

I look forward to seeing how I change.

Now that my eyes opened to my faulty way of seeing, some synchronicities (The Divine’s way of remaining anonymous) began popping up all over:

More Teachers

A Tribute to Discomfort

On Pushing Through A Struggle:

“There’s incredible amounts of raw human and natural beauty happening everywhere.” ~Cory Richards

 

 

and

Sir Elton John speaking about his modernist photography collection:

“I was seeing through different eyes. I saw beauty that I’d never seen before.” Sir Elton John

Link

Glass Tears

 

 

and

thriver-soup

Heidi Bright noticing my attempts on Facebook to find beauty in the midst of cultural ugliness and sent me her latest blog post with this quote from Elsie de Wolfe:

“I’m going to make everything around me beautiful. That will be my life.”

Read about Heidi’s experience finding beauty in the midst of a terminal cancer diagnosis in her memoir:

 

and

Then I picked up one of my favorite spiritual books, The Spiritual Dimension of the Enneagram: Nine Faces of the Soul by Sandra Maitri, and read this:

spiritual-dimension-of-the-enneagram

 

“Yes, I see who you believe you are, but let me  show you what and who is truly beneath those beliefs. Let me show you your jeweled possibilities.”  ~Sandra Maitri

 

 

 

 

I am beginning to see my jeweled possibilities.

Link

8a35f-smiley2bsun2bface

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.”

 

Rare Resilience

“Before enlightenment, chop wood and carry water. After enlightenment, chop wood and carry water.” ~Zen Proverb

My experience at the Myotonic Dystrophy Conference on Saturday, October 22, reminded me of this Zen proverb. The morning was full of hope as the doctors and researchers enlightened us about the progress they are making. In their work, they chop wood and carry water looking for a cure. Their excitement is contagious as they move closer to their goal.

Then in the afternoon family sharing group, I experienced almost immediate discouragement as we began to share our experiences of chopping wood and carrying water. While we wait and hope for a cure, we deal with many frustrating day-to-day challenges caring for our loved ones.

kathleen-cain-facilitating-faminly-support-group

family-support-at-dm-conference

shields-family-at-dm-conference

Nothing discourages me more than the overwhelming challenge of interfacing with or hearing others’ stories of interfacing with a callous bureaucracy that doesn’t understand or seem to care about our needs. I’m not sure I could take it all in, but this is what I remember from the group meeting.

Painful memories were triggered as I listened to parents share about challenges I faced in the past:

  • Two mothers of preschool children shared their challenge in finding a school with a suitable special needs program.
  • Parents shared their concerns about their children’s difficulty making friends and being bullied at school.
  • Several shared their challenges receiving social security disability and other vital services.

Fear surfaced related to current challenges Nicole and I face:

  • One Ohio mother shared that they have been on the waiting list for a medicaid waiver for ten years. Ten years. We just applied in July and knew it could be months. But ten years. I may not even be alive in ten years. I think I was the oldest parent there.
  • The difficulty finding suitable housing for our disabled loved ones. The facility where we applied told us about three weeks ago that it could be years before there is an opening.

Sorrow arose related to our fears for our children’s future:

  • We all worry about what will happen to our children after we are gone.
  • Because cognitive impairment, emotional blunting, and social apathy are features of the disease, our children manifesting these symptoms have little contact outside of their immediate family. We worry about who will love them after we are gone.
  • Who will care for them the way we do now after we are gone? That is why I held such hope for being granted a medicaid waiver. Then Nicole would have an aid and a case manager who would help her with the things she can’t manage that I take care of now. Apparently, if she hasn’t received the waiver before I die, my death will create an emergency that will generate approval. I wish we could be proactive so these services were in place before I die. Then, at least, I could die in peace.
  • One father related his fear that if they don’t leave their child enough money, she will be forced to live in inadequate and scary public housing.
Pam Speer Lewis, MDF Project Development Manager

Pam Speer Lewis, MDF Project Development Manager

I am so grateful that MDF has broadened their base beyond just looking for a cure, as important as that is. Talking with Pam Speer Lewis after this support group meeting helped lift my spirit. MDF is now advocating for easier access to the services that meet the day-to-day challenges DM families face. They have added “Care” to their mission of finding a “Cure” as their bracelet conveys.

care-cure-bracelet

I looked around our circle and felt such admiration for each person. Despite all our challenges, we keep chopping wood and carrying water, putting one foot in front of the other and doing whatever we can to make life better for ourselves and our loved ones.

Our last activity was responding in small table groups to two questions:

  1. What do you struggle with the most?
  2. How can we be of more help?

When I shared the responses from our table, I emphasized the need to support caregivers because some of us experience our own health challenges related to the stress of caring for our loved one. A much younger caregiver than I am at our table had experienced a recent stroke. Thankfully, he is recovering nicely.

As the conference was breaking up, a man who has adult onset came to me to thank me for advocating for caregivers. He told me a bit of his family’s story. He deals with his own challenges with DM as well as serving as a caregiver for family members experiencing a totally unrelated healthcare crisis. He knows both sides of the coin. My heart went out to him.

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I could not help but notice what rare resilience each DM Warrior in that room demonstrates — those who carry this rare genetic neuromuscular disease, those of us who love and care for them, and the doctors and researchers who won’t give up until they find a cure. We are quite a community.

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.

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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.

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

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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.

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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.

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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.

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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!!

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