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.

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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.

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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!!

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.

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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.

Scales Falling from My Eyes

After the 50th reunion with my former Port Clinton students, I went back to my motel room, looked at myself in the mirror, and said, “Linda, I think you need to start looking at yourself differently.”

I arrived a little late for the reunion because I couldn’t find the Yacht Club. When I walked in, the class was gathered at the far side of the room for a group picture. I walked behind the photographer looking for Yvonne, the student who called me on June 29 (See June 29-30 posts). She spotted me, jumped up from her seat, and ran to give me a hug, exclaiming “My goodness you’re tall,” just as she had done when she walked into my shorthand class in 1964. She escorted me to my seat next to her husband before scurrying back for the picture.

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Miss Marshall and Yvonne on her tip toes. She refuses to call me Linda.

She reminded me why I had such an influence in her life. She came into my class a week late and was having difficulty catching up and grasping this strange shorthand language. She tried to drop out after receiving an “F” the first six weeks. I allowed other girls to do that but said to her, “You will get it. Just don’t give up.” Then, after receiving an “F” the second six weeks, she spoke to me again about dropping out. This time I looked at her with “very caring eyes” and said, “Yvonne, I have faith in you. You will get it. Don’t give up.” The next six weeks the light bulb went off and she got it, receiving an “A” every grading period from then on.

Yvonne also told me how strict I was while teaching typing (See July 1 post) and how disappointed she was that I only taught at Port Clinton for one year. The teacher who followed me was too lenient. She credits me with preparing her for the outside world. During her 39-year career, she used her skills at the U.S. Department of Interior and the Davis-Besse Nuclear Power Station. Every time she wanted a promotion and had to perform well on typing and shorthand tests to receive it, she said to herself, “Okay, Miss Marshall, you have faith in me so let’s get this done.” I had instilled in her the faith that if she wanted it badly enough, she could do it. And she did.

I am grateful I said what I said, but her career success says more about her than it does about me. Still, I am pleased that as a young woman of twenty-two, I had the presence to give her the support she needed.

Other students attending the reunion were also eager to tell me how they had used their typing and shorthand skills in their careers.

Joyce worked for three judges throughout her career.

Linda and Joyce

Linda and Joyce

Linda sidled up to me asking, “Do you remember me?”

Linda and Linda

Linda and Linda

In truth, I remember very little of my time in Port Clinton 52 years ago and in my usual fashion, what I remember reflects negatively on me as their teacher. Linda told me a delightful story that challenges these damaging memories.

She said it was unlike her, but when she came into my shorthand class, she found something funny. She sat in the back and created a disturbance with her giggles. “And there you were, a young teacher. (I’m only six years older than these students) I could tell you were frustrated, but you didn’t say anything for three weeks. I thought I should apologize to you.” She used one of her hands to make a slicing motion across her other hand adding, “Then one day you cut me in half. I was so embarrassed.”

I have no memory of this. I do remember having some difficulty in my student teaching keeping order in the classroom. I am a soft-spoken introvert, after all. But I must have learned. Still I have difficulty visualizing myself saying something that embarrassed her so much, and she wouldn’t tell me what I said.

But I’m glad I said whatever I said because Linda went on to say, “I got serious after that and I want you to know I did you proud. I worked for the State Department in Washington, D.C. for three years and walked by the White House on the way to work everyday.”

Sharon won this award and then said she wasn’t fast and accurate enough to use shorthand in her administrative assistant position. She thinks she tried to draw the characters so they would be perfect versus write them. Oh, Sharon, how well I know that “perfectionist trap.” At the reunion, she was having a lot of fun with and quite skilled with a camera.

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Linda and Sharon

Linda and Sharon

 

 

 

 

 

 

 

 

 

 

 

My last connection was the most remarkable because it really had nothing to do with what I did as a teacher but with who I was being as a person.

Linda and Judy

Linda and Judy

Judy and her husband approached me toward the end of the evening. She said, “I didn’t take any classes from you. I was in your homeroom. I thought you were beautiful and I wanted to grow up to be just like you.”

She wrote next to her senior picture in the commemorative booklet provided for the event,  “Thank you  for being such an awesome role model for us.”

While she wrote, her husband said, “Yes, she talked to me about you and told me how she wanted to grow up to be like you.”

I said, “This is blowing my mind.”

In 1978, fourteen years after I taught at Port Clinton, I had a conversation with Harold Platz, the professor who led my core group while I was a student at United Theological Seminary. I loved and respected Harold, one of the pivotal influences in my life. I think I was seeking his wisdom, sharing with him my puzzlement about how someone had reacted to what I said during a core group session. He looked at me with gentle caring eyes and said, “I don’t think you realize the effect you have on others.”

I didn’t know what to say. He was so very right. That was 38 years ago.

Throughout my life, I have often heard, “You are so hard on yourself.” Even when I have been in the process of making a concerted effort to be gentler with myself, I would hear this. Often I was puzzled because being hard on myself felt normal. When someone liked me, I was puzzled about what there was to like. I could not and still have difficulty seeing who I truly am. Today, I know where this comes from. I am sensitive and when a sensitive child receives a lot of criticism, they internalize it. That is what I did.

Through the years, many friends and mentors who have loved and believed in me have tried to help me see myself more realistically as they see me. I’m a slower learner than Yvonne. Sometimes I’d catch a glimpse of how they saw me, but thick scales of conditioning cover my eyes.

Miraculously, on September 17, when I returned to my motel room after attending this reunion, I looked in the mirror and realized as never before that it is time to see myself differently. A chunk of scales fell from my eyes and I caught another, even clearer, glimpse of my true self.

Yvonne, Joyce, Linda, Sharon, and Judy served as agents of a Divine Presence who clearly wants my sight restored. I am still amazed that Yvonne searched for me until she found me 52 years later. Those are extraordinary lengths…not just for Yvonne…but for the Spirit working through her to finally open my eyes. I think the least I can do is begin to cooperate with the process of having my sight fully restored. My therapist has given me an assignment to further that process. What a priceless gift of grace. I am in awe and eternally grateful.

“So Ananias went and entered the house. He laid his hands on Saul and said, ‘Brother Saul, the Lord Jesus, who appeared to you on your way here, has sent me so that you may regain your sight and be filled with the Holy Spirit.’ And immediately something like scales fell from his eyes, and his sight was restored.” Acts 9:17-18a NRSV

My Irish Roots Revealed

After my fabulous weekend in mid-September, I began reading Sharon O’Brien’s memoir, The Family Silver. To my surprise, she shed light on my Irish relative’s puzzling behavior. 

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Click on book for link to Goodreads

On page 34, O’Brien writes: “I come from a people for whom abrupt and often unexplained severings of contact were the way to deal with conflict, hurt, loss, and separation. The Irish are great talkers and storytellers, but they prefer silence to speech when it comes to the realm of emotions. Simply cutting off a family member by not speaking or writing is a common pattern in Irish and Irish American families. Sometimes the black sheep may live only a few blocks away, and yet the silence may endure not just for weeks, but for months or years or decades.

“The Irish-born writer Frank McCourt attributes this form of punishment to the importance talk and conversation hold in Irish society. To shun someone, placing her in a circle of silence, is to cut her off from the family’s and the culture’s lifeblood. It is the cruelest thing you can do.”

~ ~ ~

Knowing about that Irish cultural pattern explained so many things about the Brady clan.

Celebrating my parents' 50th wedding anniversary in 1991

The Brady clan: Me, Dad, Aunt Mary Ann, Mom, Aunt Vicki, Aunt Earline, Uncle Wayne, and my brother, Phil celebrating Mom & Dad’s 50th wedding anniversary in 1991

Everyone in this picture is now deceased except for Aunt Vicki, Uncle Wayne, and me.

As a deeply-feeling child, when I witnessed silence and shunning among my mother and her siblings, it created a longing in me for a happy, harmonious family. My wish seemed always out of reach. As I grew older, they directed this behavior toward me.

At first, I took it personally. I couldn’t understand what it was about me that was so bad as to warrant this withdrawal of love. As I matured emotionally and studied family dynamics, even though the withdrawal hurt, I came to know that it wasn’t all about me. Still, I had difficulty letting go of the feeling I had done something wrong or I was bad and wrong. I had no idea until reading O’Brien’s memoir that silence and shunning are part of an Irish cultural pattern.

O’Brien helped me understand why negative feedback is easier for me to handle than silence. It explains why I needed for Alice to give me honest feedback about her thoughts and feelings about my blog posts (see September 28 post).

~ ~ ~

For as long as I can remember, my brother and I idolized Uncle Wayne.

Below is my earliest picture of us with him and our grandmother. I was about three and Uncle Wayne about twelve.

Grandma Brady, Uncle Wayne, Linda, and my brother, Phil.

I turned ten when my parents, brother, and I moved to New Bremen, Ohio, my mother’s hometown. Uncle Wayne was nineteen and often had dinner at our house, especially when Mom fixed apple dumplings…one of his favorites. I developed a crush on him. When he married Aunt Rosie, they asked me to serve as their junior bridesmaid. That’s me on the right in blue. My brother and I spent a lot of time visiting our newly-wed uncle and aunt in the apartment they rented in the upstairs of a big, old house.

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~ ~ ~

Now I understand my ambivalent feelings.

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My childhood friend, Amy, called me a few weeks ago to tell me it was time for a visit. She had seen my Aunt Rosie and noticed she has lost a lot of weight and looked frail. Aunt Rosie indicated that Uncle Wayne wasn’t doing well either and is usually grumpy.

I am always the one who reaches out to them. Since my immediate family members save my daughter are all gone, I wish we were closer. Their only contact with me is a Christmas card. I don’t think they are shunning me. But I can’t help but wonder whether the distance the Brady’s maintain with each other is part of this cultural pattern. While I wouldn’t avoid a visit, especially with the two of them in declining health, I noticed my ambivalent feelings. O’Brien’s memoir helped me make sense of them. With every contact, I risk silent disapproval and shunning–an even worse kind of distance.

Amy and I made plans for me to visit the weekend of September 16-17. I called to let Uncle Wayne know I was coming to town and made arrangements for a visit on Saturday morning. He told me that since he turned 80 three years ago, his health problems have increased. I hadn’t seen him in a couple of years and wasn’t sure what to expect.

It turned out to be one of my most meaningful visits.

When he hobbled to open the front door to let Amy and me in, I was shocked by how much he has aged.

uncle-wayne

Even though he seems much frailer in his body, his mind is as sharp as ever. I was pleased to notice a softening.

I spared him the discomfort he seems to experience when I tell him I love him, but I did reach out to greet him with a hug. In the past, he stiffened. This time he relaxed into my arms. Soon we were in a spirited discussion. He expressed admiration for strong women, a softening of attitudes toward women that are common for men of his age.

None of the Brady’s like to talk about their painful growing up years, so I no longer ask. I did risk telling him about my interest in genealogy and the research I’ve done. I even asked if he would be willing to let me swab his cheek so I can get a read out of our DNA ancestry–to see if there is something more there than Irish and German. He agreed! Then, he expressed interest in seeing my research.

Best of all, he asked if I was finished writing my book. I didn’t think he even remembered I was writing one.

That he remembered and asked touched me deeply.

Then he accepted a departing hug and thanked me for coming. He seemed genuinely pleased that I did. He also seemed happy about my returning soon to collect his DNA sample and share my genealogy research.

Uncle Wayne is my only remaining uncle, my mother’s youngest sibling. To share these significant moments with him before he is gone means more to me than I have words to express.

~ ~ ~

After our visit, I started out on the next leg of my trip with a heart filled with gratitude for the meaningful connections I had made with Amy, Alice, Uncle Wayne, and Aunt Rosie.

That was only the beginning of what turned out to be a fabulous weekend from beginning to end. I’ll tell you about the mind-blowing experience I had in Port Clinton in my next blog post.

A Fabulous Start to My Weekend

On Friday evening, September 16, I enjoyed dinner with Alice, a very special influence in my life, her husband, Duane, and my childhood friend, Amy. Alice is the parish worker who recommended I go to college when I was an insecure high school student who didn’t think I was smart enough to take that step. (See my July 1 post).

Alice Hegemier

Alice Hegemier & Linda

A few weeks prior to this, we reconnected through a wonderful hour-long phone conversation. I called her after receiving a Facebook message from a former classmate who had talked with her. Evelyn said Alice wanted to know if my my memoir had been published because she wanted to buy it.

Alice doesn’t do computers, so she is unable to keep track of the progress I post on my website and doesn’t have access to my blog. Because she expressed so much interest in my writing, I told her I would make copies of some of my blog posts and send them to her via snail mail.

As I was addressing the envelope, fear of disapproval raised its ugly little head. Since much of my writing is about my spiritual journey, I wondered if she would think less of me for my contemplative bent. Some refer to us as “navel gazers.”

contemplative-quote

Since silence is the response that distresses me the most, I asked Alice to be honest about her thoughts and feelings after reading my writing, especially if she didn’t like what she read. I explained that I find it easier to deal with negative feedback than with silence, which I most often interpret as disapproval for who I am.

I need not have feared. When she heard I was visiting my hometown, she called to arrange for us to have dinner and told me, “I thoroughly enjoyed reading your blog posts. Thank you for sending them to me.”

Whew! Alice’s opinion matters to me and I felt grateful our relationship hadn’t been damaged.

Before I left for New Bremen, I made a copy of the pages in my memoir where I honor Alice’s influence in my life. I decided not to make her wait for its publication to read what I have written about her.

pages

After dinner, we gathered back at Alice and Duane’s home for desert and more visiting. I heard more about her journey. Her parents also thought girls would just get married and have children and didn’t need a college education for that. She, however, believed in herself and had the confidence and determination to pursue her dream. Whenever she spotted a young person in New Bremen who she thought had some special quality, she encouraged them to actualize it.

How blessed I am she saw something in me that she encouraged. Her recommendation that I go to college opened doors for me that has enriched my life beyond measure. My college education made it possible for me to make a difference in the lives of many others in a way I wouldn’t have been able without that degree. In addition, college was part of what prepared me to meet more effectively the life challenges that lay ahead for me.

When I handed Alice the memoir pages I had copied for her to read later, she said, “I’m amazed at the depth of your writing.”

music-notes

Her words were music to my ears. I felt a little like that shy insecure high school kid all over again…receiving encouragement to be all I can be in the world. I fell asleep that night with a big smile on my face and a heart filled with gratitude–aware and in awe at the threads of influence in all our lives.

And that was just the beginning of what turned out to be a fabulous weekend.

Being True to Me

After I posted my last blog entry, “Bearing My Cross,” Cindi, my friend and one of my biggest cheerleaders, called. She, too, is serving as a caregiver for a family member. She overflowed with enthusiasm for what I had written. She said, “You write at a level of depth that is so real. Most people don’t want to go there.”

I said, “I can’t stand skimming the surface.”

skim-surface

Since then I have been pondering her words and the force behind my response.

I grew up with disapproval for being “so serious.” As a result, I found it safer to write about sorrow and anguish than to talk about it. My writing became a spiritual practice. Throughout my life, I’ve written letters to the Divine in my journal, pouring out my struggles until some deeper wisdom flowed from my pen.

writing-in-journal

Being a witness to this deeper wisdom emerging from somewhere deep inside continues to awe me. It is what helps me grow spiritually and not just survive the vicissitudes of life. That is the spirit I bring to my blog posts and my memoir, A Long Awakening to Grace.

I experience this sharing of my struggle with personal foibles in my process of growing spiritually as a calling. Still, every time I reveal what is “real” for me, I risk receiving the same censure I received as a young person.

“Most people don’t want to go there.” 

I struggled with the truth of Cindi’s words in the light of the reality in today’s publishing industry. Authors are expected to do 98 per cent of the marketing for our writing. Like most writers, I am an introvert who hates the whole idea of selling myself and my work. Yet, every writers’ workshop is replete with tips for “finding your tribe,” those readers who resonate with your writing. Some people make a living advising writers on how to successfully find readers. I wondered if I needed to change myself in order to appeal to a wider audience. But …

“I can’t stand skimming the surface.”

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

Then, last evening, I watched a recording of Oprah’s interview with Glennon Doyle Melton on Super Soul Sunday. And I received just the glorious validation I needed that finally inspired me to get this blog post beyond the pondering stage into writing. Glennon validated what I had already concluded: What is most important is being true to who I am. This is how I came into the world. This is who I am meant to be.

Glennon Doyle Melton

Glennon Doyle Melton

love-warrior200nyt

Glennon is new to me and I have not read her memoir, “Love Warrior” or her “very popular blog, Momastery. But these words in her interview with Oprah resonated deeply with me:

“I no longer think I am broken. I think I am a deeply feeling person in a messy world.”  ~Glennon Doyle Melton

“Pain is like a travelling professor. The smartest people I know are the ones who say, ‘Come in and don’t leave until you’ve taught me everything I need to know.'”  ~Glennon Doyle Melton

“Suffering is when we try to skip over the pain and get to the resurrection before the crucifixion…trying to rise before we fall.”  ~Glennon Doyle Melton

Glennon recounted several stories of disapproval she has received for her “truth telling.” Revealing what is “real” is risky. I am grateful to have found this kindred spirit and to witness her success. There are people out there who thrive in the presence of authentic revelation.

I remind myself that despite our flaws and sometimes because of them, we can be powerful channels of the Divine. I relax in this awareness because I find nothing more gratifying than hearing that someone, like Cindi, has found my writing to be validating and inspiring in all its realness…to know that what I have written has made a difference to someone. That makes the journey worthwhile.

Bearing My Cross

Monarch

Those of you who know me well know that my favorite symbol of new life and transformation is the butterfly. I was named Emerging Butterfly when I was in seminary. After graduation, the butterfly became the symbol for my retreat and small group ministry, Emergings. That symbol and name followed me as my ministry itself emerged and evolved to include counseling and coaching. It is the symbol I utilize in my memoir, for this website, and for this blog.

In league with early Christians who shared my aversion for using a gruesome form of execution as a symbol for their faith, I have been reluctant to wear a cross. Despite the cross being associated with them, early Christians didn’t use it extensively until the fourth century. I am in the seventh decade of my life, and relate more closely to those catacomb Christians who were uncomfortable with this symbol.

cross necklas

However, as I pondered the twist my life has taken as my daughter’s illness has turned her life and mine upside down, I found these foreign and unsettling words emerging in my consciousness, “This is the cross I bear.” Sensing Spirit calling forth some new awareness within me, I turned to my Bible and revisited a passage in Luke.

“Whoever does not bear his own cross and come after me, cannot be my disciple.” ~Luke 14:27

Is being my daughter’s caregiver my cross to bear? Am I being Jesus disciple in the way I bear it? I pondered these questions as the weeks progressed…moving through harsh judgments as I always do before loving kindness emerges.

Garden of Gethsemane

Agony in the Garden by Andrea Mantegna, 1431

I revisited Jesus facing his cross in the Garden of Gethsemane. In my Harper Study Bible, Matthew’s heading for this portion of his Gospel (Matthew 26:36-46) is “Jesus agony.” He describes Jesus as troubled and depicts him saying to the disciples who accompanied him, “My soul is very sorrowful.”

Something inside me relaxed. I have permission to be sorrowful, something that has been found to be persistent for parents of children with chronic health conditions…something that has been strong and visceral within me these past few months while my daughter’s healthcare crisis signaled the progression of her disease. Sorrow has been especially intense since she moved in with me where it stares me in the face daily.

Three times Matthew and Mark depict Jesus praying that he not have to bear his cross…praying for his life to be spared.

Again, something inside me relaxed. While I don’t face the unspeakable horror he faced, I have wished away the effects of my child disease…wished I didn’t have to be a caregiver, something that doesn’t come naturally to me…wished I could return to the joy-filled life I had recently created for myself.

For the years my daughter lived independently, we both denied the reality of her disease, hoping our lives would be spared the life-sucking symptoms so many others with this disease and their caregivers experience. This was not to be.

Then Jesus prayed, “Not my will but thine be done.” Finding a way to relax into those words has been a bit more difficult. Moving beyond the retributive images often attributed to the Divine has required years of pondering the way my experience of suffering evolves.

Compassionate God

In my process, I have come to experience the Divine as coming to me with compassion and empathy, crying with me, giving space for my suffering, suffering with me. Only after I have plumbed sufferings depths with Divine Love as my faithful companion does my spirit open. In some mysterious way that can only be attributed to Divine grace, my eyes open to behold a miracle of resurrection, transformation, and new life. A gift I might not appreciate or even notice, if not for the suffering, presents itself. Only then can I relax into and embrace a more mature experience of “Not my will but thine be done.”

When Jesus entered Gethsemane, he asked Peter, James, and John, three of his disciples, to remain there and watch with him. Three times during that hour of gut-wrenching prayer, he found them sleeping.

closed eyes

I thought about the suffering these three men experienced after Jesus’ violent death. They must have known they had let him down. And now they ran in fear for their own lives. And yet, his transforming spirit remained with them in their suffering and fear until they were able to muster the strength to fulfill their calling as his disciples. These three fisherman had no idea what they were signing up for when they enthusiastically left their old life behind to follow him.

I relaxed as I contemplated how none of us really know what we are signing up for in this life…how weak our willing spirits often are. When my children were born, I wanted to be a “good mother.” I carried idealized images and cultural conditioning about what that was and was not. I had no idea what I was signing up for and despite my willing spirit, I often let them and myself down and sometimes wanted to run for my life.

But today I am here doing what doesn’t come naturally. My railings against the cross I bear are dissipating and so I seem to be entering the “Not my will but Thine be done” part of the process. Even though I am sometimes weary of the call to evolve and want to shout “Enough already,” I experience myself beginning to surrender.

surrendering

Today I accepted an invitation to have lunch with an established group of women who are new to me. They were curious about my life and respectfully sought me out. That gave me an opportunity to give them a thumbnail sketch of the outline of my memoir, A Long Awakening to Grace. They thanked me for sharing and were enthusiastic about wanting to read my book. They were compassionate in their acknowledgement of my suffering.

The woman sitting across the table from me then shared that she found my story inspiring.

Something inside me relaxed.

She went on to tell me about her life. Sharing honestly about my own suffering made it possible for her to share hers. She has an amazing story and has thought about writing her memoir.  She wondered if she was too old and asked my age. She is only one year older than I. I assured her, memoirs only get better as we gain in wisdom. I told her how writing about my life had helped me make sense of it.

Her eyes brightened, she sat up straight, and said, “You have inspired me to get serious about writing my story.”

I felt relaxed as I left that restaurant today and in awe at the outcome of the invitation I almost didn’t accept. Instead of giving in to the weakness of my willing spirit, I listened to the still, small voice of wisdom inside that told me to go. I mustered the strength to show up with my eyes wide open.

eyes open II

These women eased my suffering with their compassionate presence. And it seemed no accident that I sat across from the woman who needed just the inspiration I was able to provide. This, to me, is the gift and the miracle of “Thy will be done.”

My cross seems a little more bearable today.

An Idea That Changed My Life

For the past seven years, I have participated in a contemplative writing group. The six of us choose a topic and all write on that for our next meeting. It is amazing the different ways we all approach the same topic. For our meeting yesterday, we wrote on an idea that changed our life. They thought I should include what I wrote on my blog, so here it is:

In 1935, Bill Wilson, a New York stockbroker, was in Akron, Ohio on business. At the end of the day, the bar in his hotel’s lobby called to him. He was scared. He had achieved a tentative sobriety before this trip and didn’t want to fail again. He entered the phone booth located outside the bar, closed the door to the sounds of music and gaiety, and began calling clergy in town seeking the name and number of a drunk who might be willing to talk with him. His hands shook as he fumbled through the phone book and dropped coins in the slots. He was directed to Dr. Robert Smith, a surgeon who many in town had tried and failed to help stop drinking.

phone booth

Dr. Smith answered the phone through slurred speech and was greeted by a strange request. This New Yorker seemed desperate to talk with him because if he didn’t, he was sure he’d get drunk. Smith didn’t know how talking with him would help, but he agreed. He was a doctor, after all. Dr. Smith opened the door to another professional man, a fellow sufferer, who had achieved success at maintaining sobriety, something that continued to elude him.

This meeting between Bill W. and Dr. Bob, as they came to be known, proved fateful. Both men had been exposed to the Oxford Group, a largely non-alcoholic group that emphasized universal spiritual values in daily living. But what had helped Bill W., something that was news to Dr. Smith, was the idea that alcoholism was a disease—a malady of mind, emotions, and body—not a failure of morality or will power. Bill W. said the only way he had found to stop drinking was by talking to other drunks, which was the reason for his visit.

During the duration of his business trip, Bill W. stayed in the Smith’s home. He and Dr. Bob began visiting other drunks at Akron City Hospital. Dr. Bob and one of the men they visited achieved sobriety. With the experience of these three drunks undergirded by the Oxford Group’s spiritual principles, Alcoholics Anonymous was born.

~ ~ ~

That same year, 1935, my mother, the oldest of six children, was fourteen. Her youngest sibling, my uncle, was two. They were oblivious to the history being made just two hundred miles and three hours from their home in New Bremen. Their own alcoholic drama was being played out. Seven years later, in 1942, while my mother was pregnant with me, my grandmother had had enough of her husband’s violent drunken episodes and womanizing. She filed for divorce, the mind, body, and emotions of the whole family scarred.

~ ~ ~

Lois, Bill W.’s wife, had spent years trying to get her husband sober. It was her life purpose and she felt needed. Once he did achieve sobriety, she was surprised to find that she wasn’t living “happily ever after.” It was a bitter pill that his success could not be attributed to anything she had done. And she was as neglected as before. Instead of drinking, her husband went to meetings. One Sunday he asked her if she’d like to go with him. To their astonishment, she threw a shoe as hard as she could and shouted, “Damn your old meetings.”

That was a turning point for Lois. She decided to change her attitudes and behaviors by using the same spiritual principles her husband was using to stay sober. She and other wives of recovering alcoholics met independently to work on themselves. They came to view alcoholism as a family disease, an idea that changed my life. Al-Anon, the spiritual recovery program for family and friends, was born.

 ~ ~ ~

In April 1983, forty-one years after my grandmother divorced my grandfather, I was as miserable as Lois W. Despite seventeen years of trying to make my  husband over into one that would make me happy, we and our children were worse than ever. Then I attended a weekend intensive workshop with Anne Wilson Schaef. She was in the process of writing a book called, When Society Becomes an Addict.

When Society Becomes an Addict

Hearing for the first time about the effects on the family of an alcoholic’s drinking, I was led to read It Will Never Happen to Me by Claudia Black. I read it to better understand my mother. But as I read about how the family disease operates and the survival roles adopted by the children, I found not only my mother, but myself. Even when the alcoholic drinking is not present, the behaviors and attitudes get passed down to the next generation.

It Will Never Happen to Me

As oldest children, my mother and I block our emotional pain and disappointment by trying to excel. I also avoid stress by losing myself in books. In these books, and, later as an adult, in workshops and training programs, I hoped to find a better way of living and relating.

In September 1983, I began training with Schaef in Living-in-Process, a spiritual way of living compatible with twelve step programs. Trainees were expected to identify their addiction and to work a recovery program that addressed it. In late February 1984, I attended my first twelve-step meeting. I was so nervous, I had diarrhea. It took me until July to feel as though I belonged. Eventually, as I changed my focus from how my  husband and children needed to change to what I need to change about myself, I began to achieve more serenity and equanimity—the very spiritual qualities needed by a person who fits the Enneagram One (Perfectionist) and Four (Romantic) personality styles. I found in the twelve steps the practical spiritual approach I needed for guidance.

women meeting

The trials I have been given in my  adult life have born a striking resemblance to that of an active alcoholic/addict’s family, even though drinking/drugging has not been our problem. Focusing on my spiritual growth meant I needed to change my attitude and behavior in specific ways. Whatever success I obtain in…

  • turning my challenges over to a greater power;
  • living one day/one minute at a time;
  • doing the next right thing in the easiest, simplest way possible to the best of my ability focusing on progress, not perfection;
  • accepting what is;
  • asking myself how important whatever it is that is bugging me and letting go of trying to control it;
  • reminding myself that this too shall pass;
  • detaching with love;
  • putting first things first

…I owe to Bill and Lois W. and Dr. Bob, and all those who helped them find a way out of suffering, not only for themselves, but for countless generations to come. I am grateful to be one of them.

fire-hell-inferno

And as I come to the end of writing this piece, a vision of millions of suffering souls holding hands and walking together out of the pits of hell emerges in my consciousness. My heart fills with awe at this community…our common unity…and for the idea that has changed all of our lives.

friend hands

~~~

Confession: When I am under stress as I have been these past couple of months, the pain I experience carries me back to old attitudes and patterns of behavior. Thankfully, by connecting with other sufferers who understand and empathize and by continuing to utilize the principles of the twelve step program, I just don’t stay there as long.

8a35f-smiley2bsun2bface

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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