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

10 comments

  • Dear Butterfly Woman,

    I was honored and privileged to share a wee part of the weekend with you. Watching the incredible difference you made in the lives of the participants and conferees renewed my hope in humankind. Your incredible grace and humility in facing and sharing your greatest shame was awe-inspiring and to see the magnanimity of those who embraces you was breath-taking.

    You are well on your way, dear friend, and I was honored to do my small part.

    Carry on!

    • Dearest Debster … your part was bigger than you give yourself credit for. Your magnanimous presence increased the fun for me, your teaching me how to use technology calmed my nerves, and knowing you were there to support me emotionally helped me risk being my authentic self … even when I was scared and shaking. You made a HUGE difference, my dear. You are the epitome of a good friend. I love you.

  • Gloria Davenport

    I cannot wait to devour your book cover to cover, savoring the inspiration, heartache and authenticity. I just want to say my friend, YOU’VE COME A LONG WAY BABY🤣🤣🤣You fulfilled your dream and have helped so many give a voice!

    • Dear Gloria, I am so grateful for the enthusiasm my local friends are exhibiting for reading my book. I wish I could get it to you faster because I’m eager to hear what you think. I appreciate your patience. And I have to agree … I have come a long way. Recent events have shown me that the journey is worthwhile. I do believe that I made a difference for people at the conference, and their overwhelmingly embracing me and my courage will stay with me forever.

  • You are a brave woman, Linda. And your courage, that strength from the heart, in speaking aloud your greatest shame has already en-couraged others. That in itself is a huge gift. Your memoir is another gift.

    • Thank you, Susan. And yes, encouraging others is a great gift and I’m so grateful I was able to give it and it was received so graciously. Your calling my memoir a gift means a lot to me … especially because you have read it and know. You, too, are an inspiration, which is why I asked you to give me a blurb. Your words carry a lot of weight.

  • Linda

    Dear Linda (we share a name and so much more), I wanted to share how important it was for me to meet a women who was in a relationship with a man with DM1. I bought your book immediately and am now half way through. I have been in a relationship with my BF with DM1 for over 12years and have only been aware of the disease for the last 2. Studying the disease has been so liberating for me and given me so much understanding around the cognitive effects that I am finally been able to come to a true understanding of what is really going on. The attention, science, and stories like yours that are growing around the effects of the CNS and the brain has helped me free myself from great pain and suffering from a man that is completely emotionally disconnected and socially disabled. The wounds you share, the challenges you faced with not having answers for so many years has given me strength and courage.. Thank you for giving voice to this suffering where self hatred and self blame had lived for so long. I have cried and felt a soul connection through your words and was honored to meet you and wanted to share that your brave vulnerability has been healing for me and I am extremely grateful.

    • Dear Linda, your message has made my day. It is for you and others of us loving someone with DM1 that I wrote the book. It pleases me greatly that you have experienced healing from my story. I met so many people at the conference. I want to put a face with your name. I’m going to send you an e-mail and hope you will send me a picture of you. I took pictures with people who bought my book and wonder if you are one of them. It has been so healing for me to connect with you and others at the level of soul. Much love to you.

  • Diana Spiegel

    Your demonstrations of courage continue to inspire me!!!! I AM BESIDE MYSELF WITH ANTICIPATION IN GETTING YOUR BOOK. I plan to start it the day I get it. What greater gift can anyone receive from a friend than the opportunity to know them better…..I am blest to have a friend who is willing to do that!

    • Diana, I found what you said about what you experience when you are reading very interesting. I will be interested to hear what you experience when reading my memoir. So please keep track of it so you can share it with me later. Hopefully it will be in your hands tomorrow. Thank you, my friend, for your patience. I am so blessed to have you for a friend and look forward to many more good times together.

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