Another Step Forward

In my July 2016 post titled A Second Chance, I reflected upon my daughter’s inability to continue working and need to move in with me following her surgery. I wrote, “The treasure I found is the ‘opportunity’ my daughter’s living with me gives. I am being given a second chance to extend love to her, up close and personal, in ways the immature self of my past was unable.

It is a bit of a miracle how well we have adjusted. My friends who watched me struggle in the early months are amazed at how my relationship with Nicole has evolved. I’m kind of amazed myself.

During my five months of struggle to accept our new reality, I realized that my relationship with my daughter was more important than keeping my home perfect. I intentionally let go of having my sanctuary in perfect order. That is something the immature me from my past could not have accepted.

To my delight, my daughter has worked to respect my need for order and beauty in my living environment. She is neater than she used to be and has voluntarily assumed responsibilities without my even having to ask. That has meant a great deal to me.

Then, about a month ago, she approached me and said, “Mom, if I could afford one of those walk-in tubs, would you let me get one?”

 

I knew she couldn’t afford it, but told her to go ahead and explore it. I thought her realizing that for herself was better than my nixing her request, something my immature self would have done.

And so she made a date with a salesperson to come talk with us. As I listened to his explanation of the benefits, my perspective started to shift. I thought this might work well for me, too.

As long as Nicole lives with me, I don’t have the option of moving into an assisted living facility. I’m not ready for that yet, but foresee the day when it might be a welcome option. The salesperson spoke about home healthcare aids having an easier time bathing frail, elderly people. That would address one of the issues I might face as I grow older.

The salesperson went outside and left us alone to make a decision. Nicole asked me, “What are you thinking, Mom?”

Later, as I reflected on our conversation, I realized that our relationship  had shifted from a hierarchical mother-daughter one to a more equal partnership.

I told her what I realized about how the tub could benefit me as well. Then I addressed the issue of finances. “This is how much money you have to put toward it. This is how much I could put toward it. The rest we would have to finance. That means we would need to reduce our monthly expenses.”

Her immediate response astounded me. “I’ll give up watching the Hallmark Channel.” That is a major form of entertainment for her. I suggested we visit some friends who have cut the cord with cable and explore alternative ways of watching our favorite programs. She agreed and we are in the process of taking this step.

I told her we could make a game of saving money.

I mentioned that she spends a lot of her grocery money on snacks, that they are expensive, and they aren’t good for her anyway. She is definitely her mother’s daughter. She loves potato chips as much as I did before a stent being placed in my heart in 2005 convinced me they were a luxury I could no longer afford. Nicole has not eaten a potato chip since we made this decision. Another huge decision for her.

The hardest thing for me to give up was having the house cleaned once a month. We decided to do it ourselves and we did a pretty good job working on it together. That is truly a miracle in itself. Still, I hope we will be able to add that back in after our other cost-cutting endeavors.

Nicole’s tub was installed last week. Here she is showing it off to Jacqui, who is living with us for awhile., having just returned to the States after a year in Taiwan. (And Jacqui hasn’t turned gray. She was being silly and wearing a wig.)

That tub is definitely evidence that my relationship with Nicole has entered a new phase. We have both shown evidence of maturing in our ability to demonstrate our love for each other. I am eternally grateful for this step forward on both our parts.

P.S.: I treated her to a bag of potato chips this week. I thought she had denied herself long enough. 🙂

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

The Voice Inside

August 31, we observed the 20th anniversary of Princess Diana’s death. My daughter and I watched a couple of the many television programs commemorating her life. I found myself paying close attention to “Diana: Her Own Words” based on the interviews she gave for Andrew Morton’s book, Diana: Her True Story.

“Everyone who wills can hear their inner voice. It is within everyone.” ~Mahatma Ghandi 

What struck me most as I listened to Diana reflect on her life was the number of times she referred to “the voice inside.” Throughout, her inner voice of wisdom spoke to her powerfully and humbly. Despite all the hoopla that surrounded her, she noticed and observed the wisdom that lived within her. She did not always heed the wisdom revealing the truth aligned with her soul.

I suppose I took note of this part of Diana’s story because I could relate. I, too, did not always heed the guidance coming from my inner voice of wisdom. I paid more attention to outside influences than to nudges from my soul. It is in that juncture that true suffering is born. It is part of what contributed to my awakening to grace being so long.

“I took note of this unmistakable warning–the first time I had received such an unambiguous message from the still, small voice of wisdom within. The next day I tried to give expression … I was unable to advocate for myself. Sadly, I possessed little relationship with my depths, my inner voice of wisdom. … I didn’t know myself or the importance of choosing a path in alignment with my soul.” ~excerpts from A Long Awakening to Grace

Just as Diana did, I tried to make the best of the wrong turns I had taken in my life. I discovered that if I kept my heart open and trusting, I would learn valuable lessons along the way.

  • All is not lost when we take a wrong turn.
  • There are treasures to be found in our suffering and in our search for the meaning of our life.
  • In silence and stillness, and sometimes in our dreams, we are more likely to hear our inner voice of wisdom.
  • Contemplative writing often results in wisdom flowing from our pen. (We can experience wisdom flowing from any form of meditation or artistic expression.)
  • In nature, if we pay attention, Divine wisdom and guidance often emerges.

“If you have a deep desire to move forward, a way is being prepared for you.” ~Bryant McGill

It was speculated that Diana was looking for a new way to move forward in her life when she died at thirty-six. And while we will never know the extent of the life lessons she learned in her short life, it was clear to me as I watched this program that she had already learned a few valuable lessons. Perhaps the intensity of her experience forced her to learn more quickly. I have no doubt that if she had lived, she would have grown in her ability to trust her “voice inside.”

Fortunately for me, I had many more years to learn to listen to the still small voice of wisdom within me … to glean the treasures from my life experience…treasures I share in