Angels Among Us ~~ Karen

Probably one of my greatest fears growing up was being rejected and judged as inferior. That fear was front and center for me in 1999. I had been searching for twenty-two years for the reason behind my children’s puzzling behavior and had given up all hope of ever knowing its cause. As most parents do, I blamed myself. I didn’t know it at the time, but I was about to experience a miracle that would reveal the origin of their behavior.

Professionally, I offered Imago Relationship Therapy and relationship coaching as an outreach ministry of a local church. Because of my embarrassment about my children’s behavior and my fear of how members of the congregation would react if they knew, I didn’t talk about my children at church. I kept secrets.

“No one at church knew much about my personal life. They knew I had adult children but didn’t ask about them, and I offered nothing about their circumstances.” ~excerpt from A Long Awakening to Grace

To my horror, my secret became known in a very public way. I prepared myself for the judgment against me that I was sure would follow. I served on the Christian Nurture Committee, and the next time they met, I braced myself for their disapproval. I was so very wrong. They gave me nothing but compassion. From that I learned that I was projecting my judgment of myself onto them … and many others … something I probably still do far too often today.

I had lunch yesterday with Karen, one of those committee members who has remained a friend all these years later. She has most definitely been an angel in my life.

Karen

“We’ll pray for you. We’ll add your names to our prayer group.”

 

“‘And I have a friend with a prayer group at her church. I’ll get you on her list, too,’ Karen chuckled. ‘In fact, we’ll see to it that every prayer group in town puts you and your daughter on their list. We’ll cover all the bases.’ She gave me a reassuring hug.” ~excerpts from A Long Awakening to Grace

Karen is an extraordinary woman who is an angel in many lives. She makes a difference in her family and in our community, utilizing her many skills as a volunteer. A retired teacher, she currently tutors at the literacy center. She told me over lunch about helping a man learn to read the Bible so he could do that in church, helping a woman learn to read children’s books to her grandchildren, and a woman learn to read so she can upgrade her work skills. That’s just the kind of woman Karen is.

Karen exudes enthusiasm for life and one of her favorite activities is having dinner with friends. She became so engrossed in reading my memoir, in order to finish, she turned down a dinner invitation. As soon as she turned the last page, she called me. “I just had to talk with you.”

She told me about her rejected dinner invitation. “Now you know, I never turn down a dinner invitation,” she chuckled. She went on to share how moving she found my story and how she felt for me with all I went through with my children. We made a date for lunch.

Over lunch yesterday, I enjoyed catching up with what is going on in Karen’s life and hearing about people from that congregation who I rarely see anymore. They are still very special to me. Karen wanted to know about how my daughter is doing and about my life these days.

After lunch, she had to rush off to take a neighbor woman in her 90s to the doctor. Like I said, that’s just who Karen is. As we prepared to leave, we made a pledge not to wait so long to schedule another lunch. I am so blessed.

Deciding to Change

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

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

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

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

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

 I remember the moment I decided to change.

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

 

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

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

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

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

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

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

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

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

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

Strength in Weakness

“…for when I am weak, then I am strong.” ~II Cor. 10b

Due to website problems preventing subscribers from receiving posts, this is a re-post of my September 11 post.

The most important instruction given to those writing a memoir is to be honest about our shortcomings and to be generous in describing others so as not to demonize them. That is why we are encouraged to wait until the stings of life no longer throb intensely before we embark on writing a memoir for publication … keeping our eye on writing a story that serves a larger purpose and can be useful to others. It is a process.

In my process, for years I poured out my agony in my prayer journals, writing about shame-filled events that I have always had difficulty talking about. Finally, I reached the point where I was ready to embark on seriously writing a memoir.

Writing my story in a way that might be beneficial to others forced me to dig deeper and discover the treasure hidden in my pain. As a result, I emerged with a whole new and transformed perspective on my life and the people in my life.

Still, shame and fear of judgment prevented me from giving voice to some of my most painful experiences. Now that my memoir has been published, I worried about how to handle book signings. What parts of my book would I be comfortable sharing verbally with others.

Knowing that writing honestly opened me to criticism, I have kept Brene Brown’s book, Daring Greatly, on the book shelf above my computer as inspiration to keep moving forward. And because my book is now published and it is time to share my story with the world, I have kept Deborah Winegarten‘s wise counsel before me.

A special sister writer, Deborah focuses on the greater purpose her books serve ~~ giving her opportunities to connect with others and be present to them in their need.

And so, this past weekend I took my books to the Myotonic Dystrophy Foundation (MDF) conference in San Francisco. And by the way, Deborah joined me at her own expense to give me support and sell my books so I could connect with other conference attendees. She walks her talk and has fun no matter what she is doing. A great role model for me.

Deb Winegarten selling A Long Awakening to Grace

The first morning before heading to my author table, I sat on the edge of my bed and set my intention … to be present to the needs of others as I connected with them and to be mindful of my larger purpose in writing this book.

Myotonic Dystrophy (DM) is a multi-faceted disease with numerous physical, behavioral, and psychological components. Because the physical is easier to address, researchers have put their energy there. However, the behavioral and psychological cause the most concern and produce the most emotional pain for those carrying the disease and their caregivers. I have shared a wish with other members of the community that researchers give more attention to this aspect of the disease.

My opportunity to share my concern came during this Friday morning session: “Bringing the Patient Voice to Central Nervous System Targeting Drug Development.” James Valentine moderated while five patients and caregivers shared their experience. Then the floor was opened to hear from conference participants. I raised my hand immediately because the panel had not addressed the concern that is central in my family’s experience of this disease.

After a couple of other people shared, Mr. Valentine handed the microphone to me. I pointed out that the panel had not addressed anti-social behaviors ~~ the behaviors that my son had exhibited. I pointed out that I shared a concern with one of the founders of MDF that researchers address these behaviors. Then Mr. Valentine said, “Would you be specific about the behaviors your son exhibited.”

I gulped. And then I reminded myself of my intention set that morning to focus on the larger purpose of my memoir and my attendance at this conference. I hoped research would prevent other families from going through what we went through.

My hands began to shake. I looked at Mr. Valentine and told him that it is still very difficult for me to talk about. And then, in that ballroom full of nearly three hundred people, I gave voice to the behavior that had caused our family the most shame and pain. I shared how I had handled this behavior, noting that others may judge me for that, but it was what I had to do to preserve myself. Mr. Valentine thanked me and said the information I gave is needed.

“Shame derives its power from being unspeakable.” ~Brene Brown

Immediately, other conference participants approached me at the table where I sat tearful and still shaking to give me hugs and thank me. Later, in the restroom, a new member of the board wrapped her arms around me and said, “You are the bravest of a roomful of brave people.” Another woman noted how I had shared with courage and grace. For the rest of the conference, I received hugs and expressions of gratitude. I was told there are many in the room who could relate to what I had shared.”

One of my new DM friends asked me, “Are you glad you shared?”

I replied, “Sharing that was life-changing! I got a monkey off my back.” I am aware that judgment and criticism may still come, but in the warm embrace of my DM sisters and brothers who know, the shame demon I’ve carried for far to long dissapated like the warmth of the sun burning off fog.

If you read my memoir, you will know how big that was for me. It is a huge piece of being faithful to the person I was created to be … to fulfilling my purpose for this sojourn on earth. I hear the God of my understanding, my True Self within, proclaiming, “Well done my good and faithful servant.”

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

Strength in Weakness

“…for when I am weak, then I am strong.” ~II Cor. 10b

The most important instruction given to those writing a memoir is to be honest about our shortcomings and to be generous in describing others so as not to demonize them. That is why we are encouraged to wait until the stings of life no longer throb intensely before we embark on writing a memoir for publication … keeping our eye on writing a story that serves a larger purpose and can be useful to others. It is a process.

In my process, for years I poured out my agony in my prayer journals, writing about shame-filled events that I have always had difficulty talking about. Finally, I reached the point where I was ready to embark on seriously writing a memoir.

Writing my story in a way that might be beneficial to others forced me to dig deeper and discover the treasure hidden in my pain. As a result, I emerged with a whole new and transformed perspective on my life and the people in my life.

Still, shame and fear of judgment prevented me from giving voice to some of my most painful experiences. Now that my memoir has been published, I worried about how to handle book signings. What parts of my book would I be comfortable sharing verbally with others.

Knowing that writing honestly opened me to criticism, I have kept Brene Brown’s book, Daring Greatly, on the book shelf above my computer as inspiration to keep moving forward. And because my book is now published and it is time to share my story with the world, I have kept Deborah Winegarten‘s wise counsel before me.

A special sister writer, Deborah focuses on the greater purpose her books serve ~~ giving her opportunities to connect with others and be present to them in their need.

And so, this past weekend I took my books to the Myotonic Dystrophy Foundation (MDF) conference in San Francisco. And by the way, Deborah joined me at her own expense to give me support and sell my books so I could connect with other conference attendees. She walks her talk and has fun no matter what she is doing. A great role model for me.

Deb Winegarten selling A Long Awakening to Grace

The first morning before heading to my author table, I sat on the edge of my bed and set my intention … to be present to the needs of others as I connected with them and to be mindful of my larger purpose in writing this book.

Myotonic Dystrophy (DM) is a multi-faceted disease with numerous physical, behavioral, and psychological components. Because the physical is easier to address, researchers have put their energy there. However, the behavioral and psychological cause the most concern and produce the most emotional pain for those carrying the disease and their caregivers. I have shared a wish with other members of the community that researchers give more attention to this aspect of the disease.

My opportunity to share my concern came during this Friday morning session: “Bringing the Patient Voice to Central Nervous System Targeting Drug Development.” James Valentine moderated while five patients and caregivers shared their experience. Then the floor was opened to hear from conference participants. I raised my hand immediately because the panel had not addressed the concern that is central in my family’s experience of this disease.

After a couple of other people shared, Mr. Valentine handed the microphone to me. I pointed out that the panel had not addressed anti-social behaviors ~~ the behaviors that my son had exhibited. I pointed out that I shared a concern with one of the founders of MDF that researchers address these behaviors. Then Mr. Valentine said, “Would you be specific about the behaviors your son exhibited.”

I gulped. And then I reminded myself of my intention set that morning to focus on the larger purpose of my memoir and my attendance at this conference. I hoped research would prevent other families from going through what we went through.

My hands began to shake. I looked at Mr. Valentine and told him that it is still very difficult for me to talk about. And then, in that ballroom full of nearly three hundred people, I gave voice to the behavior that had caused our family the most shame and pain. I shared how I had handled this behavior, noting that others may judge me for that, but it was what I had to do to preserve myself. Mr. Valentine thanked me and said the information I gave is needed.

“Shame derives its power from being unspeakable.” ~Brene Brown

Immediately, other conference participants approached me at the table where I sat tearful and still shaking to give me hugs and thank me. Later, in the restroom, a new member of the board wrapped her arms around me and said, “You are the bravest of a roomful of brave people.” Another woman noted how I had shared with courage and grace. For the rest of the conference, I received hugs and expressions of gratitude. I was told there are many in the room who could relate to what I had shared.”

One of my new DM friends asked me, “Are you glad you shared?”

I replied, “Sharing that was life-changing! I got a monkey off my back.” I am aware that judgment and criticism may still come, but in the warm embrace of my DM sisters and brothers who know, the shame demon I’ve carried for far to long dissapated like the warmth of the sun burning off fog.

If you read my memoir, you will know how big that was for me. It is a huge piece of being faithful to the person I was created to be … to fulfilling my purpose for this sojourn on earth. I hear the God of my understanding, my True Self within, proclaiming, “Well done my good and faithful servant.”

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