Lost and Found

“Once I was lost and now I’m found.” ~from the Hymn, Amazing Grace

LOST

A common phenomenon for writers finishing a book is to experience a letdown. While being interviewed after publishing his latest espionage novel, John le Carré admitted to being depressed and that he always experiences this between projects.

My writer friend Susan J. Tweit who generously gave me a blurb for my memoir just sent her recent memoir, Bless the Birds, to her agent. When congratulated, she admitted, “I’m feeling both relieved and excited, as you can imagine, and also feeling a bit of the postpartum blues to not be carrying the story around inside me anymore.”

After the initial flurry of excitement about completing what a high school classmate referred to as “the achievement of my lifetime,” — writing and publishing A Long Awakening to Grace, I felt lost. I am familiar with that feeling. I’ve experienced it many times throughout my life when I’m in a period of transition. But this time it felt a bit different. I pondered the difference.

I wasn’t asking “What’s next?” as I had done during other transitions. Inept as I was at it and totally out of my element, I charged ahead doing what was logically next … marketing my book. Between dealing with the “pecking order” among writers (self-published authors frozen at the bottom) and in the social media world of changing algorithms, I grew increasingly overwhelmed, frustrated, stressed, cranky and disgruntled…not the energy I wanted to bring to the process.

FOUND

I took a break from marketing last week and went to four movies. This quote attributed to P. T. Barnum in The Greatest Showman jumped out at me.

“I was trying to be someone I am not.”

  • I am not nor do I aspire to be “A New York Times Bestselling Author”
  • I do not have to nor do I aspire to make a living as a writer
  • I did not write and publish this book to make money though if I do, the Myotonic Dystrophy Foundation will benefit from it. I did not write and publish to be a big name in the literary field. I wrote it to be of help to others.
  • I do not have to nor do I aspire to be a marketing whiz

And yet, I am fortunate to know and interact with New York Times Bestselling authors, authors who make a very good income writing,  authors who receive acclaim widely, and authors who are willing to master the world of technology to promote themselves. And I admire them and I compared myself to them and tried to follow their example.

And that is not who I am!

Who I am is:

  • Someone who writes as a spiritual practice … to understand myself better and to connect with the best version of who I was created to be. Writing my memoir gave me a whole new perspective on my life and was transforming. I share my writing when I think what I have to say would be helpful or enlightening to others.
  • Someone who loves to connect with other kindred spirits by reading spiritual literature, inspirational memoirs, historical fiction … along with books that inform me about cultural challenges we face.  Check out my Goodread’s Book Page and you will see.
  • Someone who likes to participate in groups who share my interest in spirituality, who are committed to growing, and who are interested in being informed and active in dealing with cultural challenges.
  • Someone who is energized by connecting with people. An interesting challenge for an introvert who loves to write … a solitary activity. Sharing with interested readers and receiving their comments in this blog is enormously satisfying for me.

WHAT BOLSTERED MY SPIRIT THIS WEEK

  • Receiving a hug from Pastor Larry who appears in my book and being told that my book was wonderful and he was moved by it.
  • Receiving a long embrace from Larry’s wife, Clara, and receiving expressions of empathy from both her and Larry.
  • Receiving a post on my timeline from a Reader’s Facebook group. One of their members, Debbie, a woman from Minnesota who I’ve never met, read my memoir, called it amazing, and said she loved it. I reached out to thank her and we had a few back and forth interactions. Then she gave me an Amazon review. Made my day!
  • Seeing another woman from that Facebook group decide to read my book because Debbie loved and recommended it. Thanking her, asking her to let me know what she thinks after she reads it, and receiving a response from her that she will do that.
  • Receiving a telephone call and reconnecting with an Imago colleague to tell me she is reading my book and wants to work with me to arrange a book signing in her city. We are having lunch together this week and I’m so excited to connect with her again.
  • Receiving a Facebook message from a high school classmate who read my book, had no idea what I had gone through, called me a strong and resilient woman. She wrote this while receiving chemotherapy. Later that week she wrote an Amazon review and said she was proud of me. Brought tears to my eyes.
  • A woman who I admire but don’t know well at church sharing with me that she had finished reading my memoir. She was silent for a moment. Then she said, “You know suffering, don’t you?” She went on to share her experience reading it and the most powerful part of the book for her. She wanted to know if I had given any talks about it. I haven’t, but I’d like to … once I discern the message that would be most helpful to others.
  • A friend from church telling me that she spent time on my website this week and found a lot of good stuff there. Makes me feel like the hard work I’ve been doing updating it is worthwhile.
  • Receiving fabulous e-mails from members of the Works-in-Progress group through the Story Circle Network.

Two of those e-mails were in response to my rant to them about my frustrations with marketing and social media and my decision to do only what is enjoyable and gratifying.

This group member who makes her living writing said, “There was a time when you were discouraged about the writing, and you persevered nonetheless. I think the hardest part of being an author/publisher is that you wear all the hats. But you’re right to do what you enjoy or at least can tolerate. What I read in your posts is that the human connection is what fuels you the most. … Those person-to-person connections may be the most effective form of marketing for you, and they’re clearly the most rewarding.” I felt really seen and understood.

And this prolific and award-winning author said, “Linda, rejoice in your ability to sell books one-to-one. Booksellers will tell you more books are sold that way and by word of mouth than all the advertising in the world.” That helps me feel better about my choice.

These e-mails came through this weekend and addressed the challenges all authors face. In comparing myself with this group of women writers, I unintentionally distanced myself from them. I didn’t feel worthy of belonging. It is nice to be back in connection:

One group member, a New York Times Bestselling Author said, “…it’s simply nonproductive to make comparisons between genres/audience communities. The writing universe (and now, the publishing universe) is broad enough to include all of us. We don’t have to live (or die) by others’ preferences and judgments. We can just set them aside, do our best work, and move forward on the paths we choose.”

And another is committed to literary citizenship — supporting her sister authors and, in my experience, does it extremely well. She has an Amazon Author Central Page that is quite impressive in my opinion but looked down upon by some who are “snooty” (not her word or mine but made by a writer who could be and thankfully isn’t).

This group member did a rant of her own when she said, “Sometimes when you hang with writers you forget about the non-writers who are simply dazzled by our output, not busy saying ‘Well that’s good but not quite enough yet.’ … I work to be as transparent as I can about my growth and progress as a writer. I want to celebrate every step of the journey. I am so glad to be able to do this here (in the WIP group) but also want to do it publicly both as joy and as encouragement. … What I am striving for is to do work that comes from my heart and that I can give to the world with the intention of reaching others. I can’t tell you the number of times my heart has been soothed or uplifted by ‘light fiction’ or, and this one grates at me when it is used in a diminishing way, ‘women’s fiction.’ I love a beautiful piece of “literary” work AND I love ‘light fiction’ and ‘women’s fiction’ and all the other genres that get sniffed at. Don’t even get me started on the folks dissing memoir as me-moir!  Those me-moirs have been life changing and life affirming for me, sometimes a hand out that’s pulled me out of the muck and given me hope.

I say “AMEN!” to that!! I am so fortunate to be a part of this stellar group of women writers and to be accepted and supported by them.

And I’m so fortunate to have had such a spirit bolstering week … even though I took a couple of days off.

And I’m so fortunate to have come home to and be back in connection with “myself.” I have much for which to be grateful!

THRIVE

A couple of years ago, Jude, one of my local writer friends, invited me to her solstice gathering. She had been holding these for many years. I was honored to be asked, and as an introvert, a little nervous about meeting and interacting with new people. I set an intention to extend myself beyond my comfort zone and reach out. On my half hour drive home, I patted myself on the back for my new behavior and for the connections I made.

At the winter solstice, Jude asks us to share our word for the year. My word for 2016 was “JOY.” For 2017, I chose the word “OPPORTUNITY.” My word for 2018 is “THRIVE.” Then she gives us a reminder to position in a prominent place in our home as a prompt to be on the lookout for evidence of our word materializing.

The major OPPORTUNITY that manifested for me in 2017 was being gifted by April with her expertise to publish A Long Awakening to Grace.

I choose THRIVE for 2018 because I have never been satisfied with calling myself a survivor. I want to do more in life than survive. I want to THRIVE. And now that I’ve accomplished what a high school classmate referred to as “the greatest achievement of my life,” what’s next? It will be hard to top 2017.

In November and over the holidays, while we have been experiencing frigid weather and I wasn’t feeling well enough to go out, I made use of this time with a major cleaning out the old. My office is reorganized and I have a pile of papers and records I no longer need (I tend to be a pack rat) waiting for the recycle bin. I already feel lighter and love how much more accessible my new office arrangement is.

It occurred to me that letting go of this old stuff is a part of making way for the new … the new that promises to fulfill my intention to THRIVE. I still have more I want to do, but I am well on my way. And seeing these actions as my commitment to THRIVING in 2018 increases my enthusiasm and curiosity. It will be interesting to see how THRIVE materializes despite whatever rejections and disappointments as a writer and author may come my way. (Rejections and disappointments come with the territory and we THRIVE when we keep plugging away and noticing the gifts we receive despite them.)

To celebrate these surprises and gifts, I’m going to record everyone of them as a celebration in my THRIVE journal.

If you are willing to share, I’d love to hear your word for 2018 and how you are preparing to live into it?

The Plot Sisters — Part II

In April 2014, I wrote about The Plot Sisters, a vibrant group of five Dayton area writers who I first met in Katrina Kittle’s Character Development class.

Traci Ison, Cindy Cremeans, Christina Consolina, Jennifer Harper Messaros, Ruthanne Templeton Kain (not pictured)

They celebrated with me after I successfully pitched to a New York agent. I was thanked for a “well-crafted pitch, the agent noted that my story has a compelling narrative arc, and she asked me to send her a proposal … after I built my platform (a large enough number of followers for a New York agent to actually represent me.)

Christina pointed out that Dayton has a lot of good writers and we support each other. She said, “We can be part of your platform.” Her words were music to my ears. And she didn’t disappoint. She agreed to be one of my beta readers and gave me valuable feedback that strengthened my memoir.

Even though I didn’t build a large enough platform to interest a New York agent in representing me and my publishing path went in a different direction, that hasn’t stopped the Plot Sisters from supporting me. They invited me to be their guest at their December 21 meeting. And do they ever know how to treat their guests.

Jennifer Harper Messaros, Jude Walsh, Cindy Cremeans, Ruthann Templeton Kain, Christina Consolino, Traci Ison (via FaceTime), and me

Some changes have occurred for The Plot Sisters. Traci moved to Oklahoma, but continues to attend their meetings via FaceTime. And Jude Walsh has joined their ranks. Because writing is a solitary activity and can be discouraging as what we have poured our heart and soul into receives rejections, having a support system is vital. I’m grateful for my connection with these wonderful women.

After sharing with me a little about the state of their writing, we launched into a spirited discussion about A Long Awakening to Grace, my writing style and the narrative arc. They noted the humility with which I told my story and how that draws the reader in. They wanted to hear all about my decision to self-publish and we discussed the pros and cons of that publishing path. They inquired as to what I’ll be writing next and had some great suggestions.

Because this meeting occurred on the eve of winter solstice, they brought goodies to share with each other and included me in the sharing. I was thrilled. But then they surprised me with a gift bag. I pulled out a lovely box of notecards adorned with butterflies. What a lovely gift.

And then Jude said, “There’s a little something else in the bottom of the bag.”

I rummaged through tissue paper and pulled out a velvet jewelry box. My eyes widened as I opened the box to find a beautiful butterfly necklace decorated with Black Hills gold. They couldn’t have known how significant receiving this gift was.

When I was twelve, I spotted a birthstone ring in the window of the local jewelry store. It was mounted in Black Hills gold. I fell in love with it and was thrilled when my grandmothers joined together in gifting me with it on the occasion of my confirmation.

The mounting wore away as the years went on. My dad wanted to place it in a new mounting. I protested. Because I loved the uniqueness of that mounting so much, he refreshed it instead. It continues to be one of  my most important treasures to this day.

And now, thanks to the generosity of The Plot Sisters, I have a matching necklace. It is already one of my favorite treasures … a lovely reminder of the importance of supporting each other as writers and as women. You all are the best and I am blessed by knowing you and being known by you.

Surrounded by Angels

 

Back Row: Rosie, Teresa, Mary Lou, Carol, Joy, Ruth
Seated: Betts, Gloria, Meribeth
On the floor: Gay

A group of women who call themselves “The Angels” have been meeting every Monday morning for somewhere in the neighborhood of twenty years. This picture shows the group who met this week. A few had to miss this special gathering as we celebrated what Teresa has meant to us. She is moving to Michigan and we won’t be seeing her as regularly.

Ruth convenes us as she rings her Tibetan Meditation Tingsha Cymbal Bell. Sometimes bringing us to our opening meditation is a little like herding cats. Next we share gratitude’s around the circle, followed by a spirited discussion and a reading from Toby, an Angel who lives in Alabama. In closing, we hold hands and pray for others we know and those in the world we don’t know. We also include any woman who is or has ever been a part of “The Angels.” Once an Angel, always an Angel.

I joined The Angels almost four years ago, about half way through the process of writing my memoir, A Long Awakening to Grace. They took an immediate interest in my project and wanted regular reports about my progress. Toward the end, they became impatient. I often heard, “When are you going to get that thing published. I can’t wait to read it.”

The day came when I was actually ready to distribute the books to them. In my excitement about finally reaching this goal, I forgot to take a picture. So this week, I asked them to bring their copies for a group picture. I wanted to share with all of you these women who consistently cheered me on while I wrote and who continue to be generous with their praise.

I often hear, “You wrote a wonderful book” followed by what they loved about it … and best of all … what they love about me now that they have read about the shortcomings I had to overcome in order to triumph over the adversity in my life.

It is because of the support of these women and that of many others that I’ve had the courage to publish and ask others to read my memoir.  They believed in me when I couldn’t believe in myself and continue to celebrate every milestone with me.

I am filled with gratitude and joy for the presence of all the angels in my life. And today I lift up my thanks for this particular group of angels. You bless me in so many ways.

Female Happiness

My Cincinnati Writer’s Group is made up of five women and one man. All of us are, well shall I say, striving to be wise elders. I found it interesting that when we gathered, all of us women were groaning about our topic “Happiness.” None of us found it easy to write about. What troubled me was what seemed to me our “giggles and rolling eyes of shame.”

Our one lone gentleman just smiled.

Isabelle in front row wearing pink top has moved to PA. Current group from left to right starting in back row: Jenny, Kate, Lynn, Jeanne, Linda, and Gary.

This is the fourth in my series on “happiness” and what follows are some of the things I found in my research which may account for our female discomfort and possibly ameliorate shame:

When asked “Overall, how satisfied are you with your life these days?” by World Happiness Report researchers, those citing high levels of satisfaction attributed it to “having a partner and a family life.” These are crucial factors in Western countries because of the decreased importance we give to the extended family.

Living alone was cited as a potent source of misery as was compromised health.

  • Four of the five women in our group do not have a partner. Three live alone.
  • Two of us singles are caregivers — one for an aging parent and the other has a disabled adult child living with her.
  • The partnered woman just returned from a disappointing visit to her children and grandchildren. Their busy lifestyles meant that she spent a lot of time alone. Even when they were together, her family members’ noses were often in their electronics.
  • Three of us singles have recently experienced a significant death of either a parent or a sibling.
  • One of us singles is currently experiencing some health challenges requiring a change in lifestyle, adding to her stress.

Two of us female singles are still in the workforce. Happiness research reveals that for adults, income is a more important contributor to happiness than education. People in well-paid roles are happier.

My research further revealed some interesting facts about the gender pay gap, a significant source of inequality for women. The American Association of University Women, a leader on the issue since 1894, reports that the gap has narrowed considerably in the last one hundred years. They attribute the narrowing since 1960 (when I graduated high school) largely to women’s progress in education and workforce participation and to men’s wages rising at a slower rate.

The gap is, however, still sizable, is worse for our sisters of color, and doesn’t seem likely to go away soon. In 2015, women working full time in the United States typically were paid just 80 percent of what men were paid, a gap of 20 percent. At the rate of change between 1960 and 2015, women are expected to reach pay equity with men in 2059.

But that slow progress has stalled in recent years. If change continues at the slower rate seen since 2001, women will not reach pay equity with men until 2152. No one living today will be alive to see it.

The World Happiness Researchers compared 2005-2011 with 2012-2015 and found that happiness inequality has increased significantly. And people living in societies where there is less inequality of happiness are happier. If I am reading their findings correctly, it seems that the issue of income inequality so prevalent in our country and across the world is a significant factor contributing to inequality of well-being.

Needless to say, the gender pay gap and income inequality in general have lifelong financial consequences. While we in our group don’t dwell on it, none of us single women experience financial security. We have all been creative in juggling our wants and needs with our purse strings.

My conclusion: The women in my writing group and women in general have nothing to be ashamed about regarding discomfort with the topic of “Happiness.” My admiration for the resilience of all women has only increased with my exploration and reflections on the topic.

Do you have a different reading about the World Happiness Report’s findings on “inequality of well-being?” If so, would you be willing to share it?
Have you ever experienced shame or being chastised for not exhibiting the requisite amount of “happiness?” If so, how did you feel and how did you handle it?
How have the findings of the World Happiness Report and AAUW researchers affected you?

 

Happiness

Happiness was the topic chosen for the April meeting of my Cincinnati Contemplative Writing Group. Of the six of us, four of our essays referred to the pursuit of happiness enshrined as a right in our Declaration of Independence:

My essay turned into a research project. I will expand on this topic in my next few blog posts. This is my first installment:

I found a 2013 Time magazine article written by Jeffrey Kluger titled “The Happiness of Pursuit.” He points out that Americans have made the pursuit of happiness into a central mandate of our  national character … “an almost adolescent restlessness, an itch to do the Next Big Thing.” Even though there is no guarantee we’ll achieve happiness, we are free to go after it in almost any way we choose.

Kluger points out that the kinetic nature of our modern world is making achieving happiness harder than ever. He cites a 1972 survey showing that only one-third of Americans describe themselves as “very happy” and a poll showing that Americans identifying themselves as “optimists” has dropped from 79% in 2004 to 50% in 2013. In our lifetimes, more than 20% of us will suffer from a mood disorder and 30% from an anxiety disorder. By the time we are eighteen years old, 11% of us will have been diagnosed with depression.

This gap between our optimistic expectations and our reality has, according to Kluger, spawned the vast happiness industry that has become big business.

Isabelle in front row wearing pink top has moved to PA. Current group from left to right starting in back row: Jenny, Kate, Lynn, Jeanne, Linda, and Gary.

Interesting that in our group of six, only one of us professed to currently being and always having been a happy person. Other terms used to describe our views on happiness included:

  • superficial
  • egocentric
  • uninteresting
  • highly overrated
  • fleeting
  • ephemeral
  • elusive
  • momentary
  • over-used
  • pressured expectation

Except for that one “happy” person in our group, we seem to be following the trend noted in Kluger’s essay.

What words come to your mind when you hear the word “Happiness?”

In what ways have you pursued happiness?

Where do you see yourself on the “optimism” continuum?

How would you write about this topic?

I look forward to reading your comments. More to come on this topic in future installments.

And by the way, did you notice I changed the name of this blog? 

Our Sage Sister Revolution

My Sage Sister book study group met yesterday. We dug into Chapter One in our newest selection, From Age-ing to Sage-ing: A Revolutionary Approach to Growing Older.

At this time in our life, late 60s to early 80s, this book encourages us to view elderhood as an opportunity to reconnect with the sacred dimension of life:

  • find a sense of “enoughness” from within
  • connect with our inmost essence and cultivate the calmness and self-knowledge that breeds wisdom
  • transcend “doing” in favor of “being” and a clarity of consciousness that comes from spiritual growth
  • cultivate the quietness and inwardness from which mystical experience is possible
  • pursue our own paths to fulfillment … following our own inner promptings and intuitive leads.

An example was given of a seventy-four-year-old women pursuing a Ph.D. in conflict resolution to sharpen her skills as a mediator. Our conversation was energized by her view that “elders have a special responsibility to infuse public life with higher values that stress cross-cultural understanding, social justice, and world peace.” Growing into her full stature, this woman plans to speak out more often and from her inner authority.

We shared around the circle how we struggle to transcend “doing” in favor of “being.” Letting go of our all too familiar “doing” mode, we are seeking balance by going within to discern how we are being called to infuse public life with higher values … how we are to speak out from our own inner authority.

Cindi shared a recent experience of interacting with college students at an event focusing on protecting the environment. The only white-haired person in a small focus group, she was shocked to find these students unconcerned about climate change. She has no idea the effect she had on these students, but she took the opportunity to ask them probing questions, hoping to stimulate their critical thinking on this issue so vital to her and her husband.

Cindi also shared about her passion for healthy eating. She made an offer to her local food bank to work one on one with those they serve to teach recipients how to prepare unfamiliar fresh vegetables.

Sue, our youngest member and a retired teacher, shared her passion for working with young people to increase their understanding and empathy for people who are different and the spiritual community in which she participates that focuses on raising the consciousness of humankind. She is currently substitute teaching, but her greatest joy is nurturing her grandson’s development and awareness of the differences that enrich his world.

Jasmine, our oldest member, and her husband are the parents of nine children. One is gay and another is lesbian. Her love for them was undiminished when they came out to her. She shared her concern about the hatred that is directed at LGBTQ people and how she tries to dissipate animosity by openly sharing about her love for her extraordinary children. Jasmine spends a lot of time in prayer and knits prayer shawls which she donates to local hospitals and nursing homes.

Cathy has a passion for social justice especially as it relates to underprivileged and marginalized folks. She, too, has been active in donating to our local food pantry and educating others to the food insecurity that exists in our region of the country. Dayton is in the top ten of the hungriest cities in the country. Cathy has also been active in helping immigrants get settled living in this new and strange country and city.

I shared my concern that responsibility is often omitted when we talk about freedom … responsibility infusing freedom with a higher value. I have recently awakened to my responsibility in our current political environment. I asked to be appointed as a precinct captain, something I am capable of doing, assuming a larger role in my community than I ever imagined. This action speaks to my concern for our government to be in Abraham Lincoln’s words, “of the people, by the people, and for the people.” I am educating myself about actions I can take to free our government from the undermining effects of big money and using my writing and speaking skills to call our government officials to engage in responsible prophetic action.

We Sage Sisters will meet again next month to give each other support on our continuing journey of conscious aging. I am so grateful to have these outstanding women accompanying me on the journey of becoming a conscious elder.

 

Rare Resilience

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

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

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

kathleen-cain-facilitating-faminly-support-group

family-support-at-dm-conference

shields-family-at-dm-conference

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

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

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

Fear surfaced related to current challenges Nicole and I face:

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

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

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

Pam Speer Lewis, MDF Project Development Manager

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

care-cure-bracelet

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

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

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

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

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

dm-image

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.