The Blessings of Friendship

Many years ago, I received a compliment from Anne Wilson Schaef, author of many books and someone with whom I trained in Living in Process, a spiritual way of life. After observing me during a weekend workshop, she called me over and said, “You do friend well.” I have never forgotten that and I try as best I can to live up to that. Of course, I sometimes fail, but I do my best to make amends and change my behavior. Because I have so little family, my friends are very important to me.

Last Friday I was treated to a delightful day with a significant friend I met while I worked at United Theological Seminary in Dayton, OH. Pam coordinated the Harriet L. Miller Women’s Center while she was a student. After she graduated, she went on to Union Theological Seminary in NYC to earn her Ph.D. in Christian ethics and then to teach at California Lutheran University. She has written three books:

  • She Hath Done What She Could: A History of Women’s Participation in the Church of the Brethren
  • Women Don’t Count: The Challenge of Women’s Poverty to Christian Ethics
  • Globalization at What Price?: Economic Change and Daily Life

While all of this is impressive, that is not what I value the most about Pam. She is a down-to-earth friend for whom I have a lot of respect. Visiting with her is a delight. We hadn’t seen each other for many years (our memories are different about the length of time). I found her on Facebook a few months ago and we reconnected on-line. That’s what I love about the internet, helping us find friends with whom we have lost touch.

Yes, Pam and I did talk about our concerns for the future of our country and the world, how we see what is going on, our fears as well as where we find hope. But for me, those were not my most meaningful exchanges with her.

I feel safe with Pam and believe she feels safe with me as well, because our from-the-heart conversations inevitably go deep. On this visit, we shared our experiences of aging, the losses we are mourning and how we deal with loss, travels and experiences that have enriched our lives (my life was enriched visiting Pam in NYC while she was working on her Ph.D.), the ways in which life for us personally hasn’t turned out as we imagined and how we’re dealing with that, the ways we are managing retirement and life as it is, and what we are looking forward to at this time in our lives.

Pam & Linda at Cox Arboretum

We started our day with an early walk at Cox Arboretum, hoping to miss the heat of the day. A man noticed our taking pictures of each other, approached, and asked if we’d like him to take a picture of us together. After taking this picture, he said, “Remember, Jesus loves you.” We smiled, gave each other a knowing look, and affirmed, “Yes, we know that.”

After returning to my home, washing off the sweat and changing clothes, I gave Pam several choices for lunch. Because she had never eaten at a Bolivian restaurant, she chose Nelly’s.

I was thrilled when the waiter sat us in a secluded corner. We had a lot of catching up to do. Before long, their house specialty, Nelly’s slow-cooked Charcoal Rotisserie Chicken, arrived. Nelly’s has a reputation for serving the best chicken in Dayton and it doesn’t disappoint. Pam said it was the best she has ever eaten.

 

 

 

 

 

 

I knew when we scheduled this day, it would be over way too soon. These are precious moments for me. I’m blessed to count Pam as a friend and ever so grateful we are planning future re-connections.

You Make Sense to Me — A Priceless Gift

Oprah Winfrey often says that what she learned in her twenty-five years as a talk-show host is that people want the same thing — we want to be heard and understood … we want to know that we make sense to someone.

In my past life (1993-2012), one of the many professional hats I wore was as an Imago Relationship Therapist. Imago Therapists teach couples a listening skill that goes beyond active listening (repeating what you hear the other saying) to seeing the world through the other person’s eyes and telling them how they make sense given their life experience, and then walking in their shoes by telling them what you imagine they must be feeling as a result. None of this requires agreeing with how they see the world or having their feelings. It just asks us to suspend our own judgments and experiences to be in the world of the other.

And it is not easy as our polarized world attests.

For couples in troubled relationships, using that process skillfully can transform their relationship. Often, the assistance of a compassionate therapist is needed to help get and stay on track.

During the time I was an active member of the Imago community, one of the highlights I enjoyed was attending the annual conference, visiting another area of our country, and re-connecting with colleagues who had become friends.

One year, probably before 9/11, our conference was held in Albuquerque, New Mexico. I decided to stay an extra day, rented a car, and planned a trip to the Acoma Pueblo Sky City, located on top of a mesa about sixty miles west of Albuquerque. A colleague from Houston, Texas, Damian Duplechain, heard about my plans and asked if he could join me. I didn’t know Damian at the time, but welcomed his company.

Damian and I had a lot of time to get to know each other that day. We found we had some experiences in common beyond being Imago Relationship Therapists. We each had addiction in our family backgrounds and found twelve-step spirituality, The Spirituality of Imperfection, to be a healing force in our lives. After this trip, we went back home and had little contact after that beyond a few e-mails.

In 2009, I developed lymphoma. I was diagnosed on the Friday before Memorial Day weekend, was sent directly to the urban hub of the hospital, and talked into staying the weekend. If I had to do it over, I would not have stayed the weekend, but that is another story. The word went out to the Imago community about my situation and colleagues from around the world began praying for me.

That weekend, I received a phone call from Damian. What a shock. He wanted me to know about M.D. Anderson Cancer Center in Houston. He told me about a friend who had traveled a distance to be treated there. He said that if I wasn’t happy with the treatment I was getting in Dayton, OH, to give him a call and he would make all the arrangements for me to come to Houston for treatment. I doubt that you can imagine how touched I was by that. It told me even more about what an extraordinarily caring person Damian is. And it told me how fortunate I was to have so many wonderful friends extending love to me. Despite his generous offer, I didn’t find it necessary to seek treatment outside Dayton. I have been in remission since December 2009.

Eventually, I stopped participating in Imago conferences, opting to attend workshops and gatherings with my Imago friends in the Detroit, MI area. At one point, I contacted Damian about sending him a referral. But other than that, we had little contact for several years until Monday of this week.

Unbeknownst to me, Damian has been following my blog and has made a few comments. Since I didn’t receive them, I didn’t respond. He thought that was strange, checked my webpage, didn’t find his comments, and wondered if it was a cyber gremlin at work or if he had offended me in some way. He sent me an e-mail and stated that if he had offended me, he wanted to offer his deepest apology and state his willingness to hear my hurt.

I was floored. I doubt you can imagine how deeply touched I was. I find it a rare experience to have someone care that much about my feelings that they would send me an e-mail to inquire if I had been hurt and express a willingness to listen, if needed. I couldn’t have received a better gift.

My daughter who lives with me has a condition that blunts her emotions. She gets very uncomfortable when I express mine. So at home, I mostly keep them to myself. I often go for long stretches of time with no one inquiring about or listening to my feelings. And I am a feeler … on the Myer’s Briggs Personality Type Indicator, I am an

INFJ.

I have a rich inner life full of feelings, and I experience myself as most cared about when someone is interested in hearing me express them. To me, my feelings are the best, most authentic, part of me. Sometimes they get in the way, but they get out of the way faster when I can talk about them with some one who cares and understands … someone who is willing to stretch to see how they make sense to me.

As a single person living with someone not attuned to feelings, I often write about them in my blog. It is an exercise in vulnerability, and often after posting I wonder if I should have pressed that “publish key.” That uneasy feeling stays with me … until I get a comment.

Comments are important to me and I appreciate every one. They help me know if I am on the right track … if I make sense … if I say something of value for someone else. Sometimes they help me clarify my thoughts on a topic. I want my blog to be more than a self-centered exercise.

After assuring Damian that I didn’t get his comments, my curiosity was piqued. Actually, I found his comment in the spam folder. But I’m glad I didn’t find it until after writing this post. You will  see why in a moment. I wondered, “What could he have said that might have offended me?” I wrote and asked him. Here is his response:

“My comments could be summed up as: You are a wise woman who makes total sense to me, and I appreciate your blog and you because they are both wonderful gifts to me and to the world.  Keep up the great work.”

WOW!! I think I’ll keep writing. 🙂

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.

 

To be continued …

In my last post, A Disturbing Awakening, I noted that “Miss Nicey-Nice” needed to change and ended with … to be continued. Here is my continuation.

Part of the change I see myself needing to make involves letting go of my complacency. I have rarely been politically active and have only campaigned for one presidential candidate in my lifetime. In fact, I have been disgusted with politics.

This is me at a rally inviting our congressman, Mike Turner, to hold a town hall meeting. We have a number of concerns we’d like to talk with him about. I can understand why he might not want to meet with us. I watched a video of a South Carolina town hall where the constituents screamed, yelled, and boo’d. I have also seen videos of town halls where constituents asked intelligent questions and would not allow the politician to avoid answering or skirt the issue. That is the kind of town hall I would like to attend.

My sign reads “See our ANGER. Hear our FEAR.” I chose the wording after watching the South Carolina rally. I believe that under the loud expressions of anger lay a lot of fear. I know that is true for me.

I think it is interesting that in the picture, I am walking next to a person with a sign reading “Save our Democracy.” I didn’t know how important democracy was to me and how much fear the threat of losing it engendered. I actually had physical symptoms similar to those I experienced after 9/11.

In the face of the threat to our democracy, I have taken several steps. Perhaps I will share more about that another time. For today’s post, I will share one of my experiences at the “Searching for Mike Turner Rally.”

Toward the end of the rally, I walked over to read a sign with a lengthy message. Molly introduced herself. I made a new friend.

Admiring Molly’s necklace, I learned that she is a glass artist who left corporate America to follow her dream. She has her own art glass studio. You can click on this link to visit her website. I told her I admired her courage in following her dream.

For her sign, Molly had taken the time to write part of a quote from Majida Mourad, a Lebanese-American from Toledo, who shared her wisdom on an American Task Force for Lebanon website. Click the ATFL link for the full quote.

Molly’s sign read: “One of the things that happens to a lot of people in Washington is that they lose touch with their roots. They stop going home. They pretend that they were always big successes and they become a different person. Don’t let that be you.”

The rally was coming to a close and many people were departing. My friend, Jim, and I had signed up to be two of the people who would go into Congressman Turner’s office to express our concerns. We were permitted to go in two-by-two and Jim and I were way down on the list. Our parking meter was running out of time. I told Jim it was okay with me if we left. I said, “Our registering our concerns to his staff probably won’t make that much difference anyway.”

Molly intervened. She was diplomatic as she referred to me as “an older woman.” I chuckled because that is exactly what I am, and I am not insulted by that label anymore. Especially when a young person is acknowledging the important role of elders in our community. After all, I belong to a Sage Sisters group where we support each other in being conscious elders.

Molly told me that young people are supposed to be angry and aren’t paid much attention to. But when people with gray hair are concerned enough to speak, people listen.”

So, I turned to Jim and said, “Okay, let’s stay.” His wife, Diana, could take care of the parking meter, if needed.

So, this gray-haired elder waited and took a turn talking with Congressman Turner’s staffer about my concerns. I told him that I’d like to hear Congressman Turner speak to what safeguards our system has to protect our democracy and how he is utilizing those. I noted that Turner serves on several congressional committees that deal with these issues.

I also had an opportunity to share my personal experience being the mother of a daughter with a progressive neuromuscular disease who would have had no healthcare during her crisis in the spring if not for the Affordable Care Act and medicaid expansion. Jim and I acknowledged that ACA isn’t perfect and needs revising. I emphasized the problems insurance companies posed while I worked in the healthcare field, denying much needed services to my chemical dependency clients. I pointed out how our whole nation is now alarmed by the heroin problem and stymied about how to handle mental health issues.

I returned home from that rally feeling grateful to have made a new friend who reminded me to stretch into my role as an elder. Because of this young woman I embraced that what I have to say does matter and does make a difference. I won’t soon forget that as I continue pursuing the “change” I need to make.

I was “nice” to the very young staffer in Congressman Turner’s office and showed him respect. Reminding myself that “nice” isn’t bad, just not always enough, I also expressed my passion. I shared my experience and my words of wisdom.

I wish Mike Turner would listen to Majida Maurad’s words of wisdom and come home to his constituents…to his roots. He won’t have far to go to listen to her.

She happens to be his wife.

 

Christmas Memories

Carillon Park – Dayton, OH

During lunch today with two close friends, we shared about Christmas’s past and present. I teared up when I shared one of my favorite Christmas memories and they encouraged me to write a blog about it. So here goes.

The one time during the year that Mom and Dad tried to make special for my brother, Phil, and me was Christmas. When I was six through eight and Phil five through seven, we lived in Sidney, Ohio. We attended Christmas Eve service as a family. That in itself was a big deal because Dad didn’t come with us any other time.

While we attended church, our neighbors, John and Celeste and their daughter Annie, put our presents under the tree. When we arrived home, they told us they heard Santa’s sleigh flying overhead and wanted to see what presents he brought us. It didn’t take my brother and me long to figure out what was really going on, but we didn’t care. Sharing this special time with the Voress’s was what mattered. We loved them like family.

We moved away from that neighborhood when I was nine. But we carried on the tradition of opening our gifts on Christmas Eve and sharing the evening with neighbors or family.

We were not a rich family and Phil and I knew not to ask for extravagant gifts. But Mom and Dad did their best to get at least one special item we asked for. I remember asking for a boy doll during this time, not a doll often seen in stores. But they managed to find one wearing boys clothing. I don’t remember it being anatomically correct. This was the 1940s after all.

We moved to New Bremen, my mother’s hometown, when I was ten. My most special memory came when I was thirteen, several months after my Uncle Wayne married. So that particular Christmas, my newly married uncle and his bride, Aunt Rosie, joined us. I wanted a watch but didn’t expect to receive one, thinking that was too extravagant a gift to request.

My best friend also wanted a watch. (I’ll spare her the embarrassment of identifying her.) Under her family’s Christmas tree was a beautifully wrapped gift with her name on it. She became curious, and one evening when her parents were out, she opened it. She got her watch. And it was a fancy one. She, however, couldn’t re-wrap the gift so that her parents wouldn’t know she peeked. When they discovered her transgression, they grounded her. We were both relieved they didn’t go so far as to take her gift away. She still received her lovely watch.

When our family gathered on Christmas Eve that year for our gift opening ritual, I was allowed to open one small gift but had to wait until everyone else opened their gifts before I could open the package shaped like a shoebox. I thought it contained a pair of house slippers and grew irritated that Mom and Dad wouldn’t let me open it. They all seemed to take delight in my irritation which only irritated me more.

Finally, they let me open the shoebox. You guessed it. It contained a watch. It wasn’t as fancy as the one my friend received, but to me it was the best watch in the world. I felt so loved and valued, I burst into tears. 

Soon all the adults in the room were tearing up with me. For years, Uncle Wayne and Aunt Rosie referred to that Christmas as one of their all-time favorites. Mom and Dad sometimes relished in that memory, too.

And obviously, that Christmas continues to be one of my favorites. After sixty-one years, the memory still brings tears to my eyes.

A Life Well Lived

November 7 1933-November 5, 2016

Wayne B. “Dutch” Brady ~ ~ November 7 1933–November 5, 2016

“A life well lived,” the priest repeated. New to the parish, he didn’t really know my uncle. He couldn’t have known how true his words were as he paired “a life well lived” with “the importance of family” to my Uncle Wayne.

When I spoke with Terri, Uncle Wayne’s and Aunt Rosie’s youngest daughter, I asked her to tell me about his death. He had fallen, had a bleed in his brain, his kidneys were failing, and he had been in the hospital, in ICU, for a couple of days. On the day before he died, he was stepped down from ICU and  his vitals were improving.

At one in the morning on the day he died, Terri was awakened by a call from his nurse. He was agitated and they couldn’t calm him down. He was calling for Terri. The nurse asked if she would come.

When Terri and her husband arrived about an hour later, she had a meaning conversation with him that she told me she would treasure forever. During the visitation held on Wednesday, November 9, I heard more about that conversation from Aunt Rosie and Terri.

Uncle Wayne told Terri to write down everything he was about to tell her. He had his financial affairs in order and told Terri where she would find what she needed to take care of her mother after his death. Uncle Wayne’s hobby had been woodworking. He told Terri to write down the names of each person and the gift of his tools they were to receive. Once he had accomplished that, he relaxed and declared, “I’m going to die today.” By 2:25 that afternoon, he was gone.

During his funeral on Thursday, one of Uncle Wayne’s granddaughters sang with tears in her eyes. Her strong, rich, melodic voice led us in singing the most uplifting of hymns. Later she told me she had chosen all the music for his service. I’m sure Uncle Wayne was beaming his pride from the other side.

At the luncheon following his funeral, I was invited to sit with the family. In my mind’s eye, my cousins were still teenagers — my last significant contact with them. Now they are parents and grandparents. I marveled at the family these two produced.

wayne-rosie-wedding

April 16, 1955

 From these two came four.

Tim, Ted, Tammy, and Terri

From those four came twelve.

Grandchildren, the center of Uncle Wayne’s and Aunt Rosie’s lives.

And from those twelve have come nine.

Great grandchildren who  may never know the importance of their great grandfather’s intention for his life.

But they will benefit from it.

Around the table, I observed my uncle’s children relating to their nieces and nephews and grandchildren with such fondness and care. I watched Ted’s daughters wrap their arms around their father with obvious affection. He beamed devotion as he returned their endearments.

I couldn’t help but notice the contrast with the family gatherings of my youth after my parents, brother, and I moved to my mother’s hometown, New Bremen, Ohio. My mother and her three sisters talked loud and bickered with each other, jangling my nerves. Uncle Wayne, only nine years older than I and like a big brother to me, tried to lighten things up with ornery antics.  At ten years old, I came to see their behavior as the scars they bore as a result of growing up with a violent alcoholic father. I didn’t know my grandfather because my grandmother divorced him when my mother was pregnant with me.

In my forties, I read about patterns of behavior members of alcoholic family’s adopt in order to survive. To my surprise, I found myself in those patterns that get passed down from generation to generation, even when the active alcoholism or addiction is not present. I recognized in myself the hero child/lost child patterns.

I thought my family would enthusiastically support my archeological dig into family history. As astute as I had been at ten about the source of their scars, I had no appreciation for the depth of the pain just below the surface of their merry-making, fun-loving personas that often grew contentious. At first, my mother tried to answer my questions, but one day she said, “I don’t want to talk about this anymore.” With that she closed the door.

I only asked Uncle Wayne once to tell me about his father, someone I could only remember seeing once when I was eight. He told me he had no use for his father. “He never helped, Mom. He never supported his family.” Seeing his pain, I never asked again.

After hearing Terri tell me the nature of her meaningful conversation with her dad, the import of his agitation became clear to me. He could not relax until he knew Aunt Rosie, who has health problems of her own, would be cared for. To the end, he was determined not to be like his father. He would take care of his family. Once he had given Terri all the information she needed to take over for him, he was ready to leave behind his pain-ridden body and move on for his next adventure.

A life well lived. May he rest in peace knowing he accomplished his intention. He loved and took care of his family well. And with that, he broke the chain of generations of family wounding and pain.

“Good job, Uncle Wayne. You got it right.”

 

Positive Exposure = JOY

When I learned about the Myotonic Dystrophy Conference in Cincinnati to be held October 22, I didn’t give my daughter, Nicole, a choice. I said, “We are going.” She didn’t fight me on it. Progress!!

She had no interest in meeting others with myotonic and almost always says “no” to my requests to participate in anything that smacks of a support group. That is one of the reasons why we have never made it to a national conference.

Then we received an e-mail telling us about Rick Guidotti, a fashion photographer, who would be at the conference taking pictures of individuals with myotonic. Kathleen Cail, organizer of the conference, asked us to indicate whether or not we wanted to partake of this opportunity.

Rick Guidotti

Rick Guidotti

I told Nicole and asked if she would like for him to take her picture. To my absolute amazement, she said “Yes!” I was overjoyed. It isn’t everyday you have a chance to have your picture taken by an award-winning fashion photographer. Nicole’s world has shrunk considerably since she had to give up working, so I was thrilled for her that something extraordinary was coming into her life.

I had no idea just how extraordinary this opportunity would be. I had no idea what an amazing human being Rick Guidotti is. He is a man on a mission and is making a hrick-photographinguge difference in the lives of many people who are not considered beautiful. Rick, however, is doing everything he can to change the way the world sees them. His mission is to change our perception of beauty, one photograph at a time.

Rick lives in NYC and one day he saw a tall pale woman with long flowing white hair waiting at a bus stop. He thought she was beautiful and he wanted to photograph her. Upon returning home Rick began a process of discovery – about albinism, about people with genetic differences and about himself. What he found was startling and upsetting. The images that he saw were sad and dehumanizing. In medical textbooks children with a difference were seen as a disease, a diagnosis first, not as people.

albino-woman-iiRick told us about what happened when he finally had the opportunity to photograph a woman with albinism. She came into his studio hunched over, head down, full of shame about her appearance. When she left, she looked like this.

Rick’s chance encounter on the streets of NYC changed his life. He has spent the past eighteen years collaborating internationally with advocacy organizations/NGOs, medical schools, universities and other educational institutions to effect a sea-change in societal attitudes towards individuals living with genetic, physical, behavioral or intellectual differences.

Rick went on to found and direct Positive Exposure, an innovative arts, education and advocacy organization working with individuals living with genetic difference. Positive Exposure utilizes the visual arts to significantly impact the fields of genetics, mental health and human rights, exhibiting in galleries, museums and public arenas internationally.

Rick’s book features the beauty of individuals with all kinds of genetic and physical disabilities.

Grace, the daughter of Kathleen Cail, the organizer of our conference, represents the myotonic dystrophy community with her photograph in Rick’s book. Her photograph is shown here on the left in an exhibition held in Cincinnati.

grace-at-exhibition

Nicole and Rick Guidotti

Nicole and Rick Guidotti

Rick must have spent 15 to 20 minutes taking pictures, not only of Nicole, but of both of us. His camera clicked away as he marveled at Nicole’s beautiful blue eyes. Stiff at first, she finally couldn’t help but give him a big smile even better than the one in this photograph I took of the two of them. At the end of the conference, he presented a collage of pictures he took that day. There is a beautiful one of Nicole.

Rick comes to conferences like ours and photographs free of charge. At some point, we will receive ours. I’m not sure when and how but when they arrive, you can be sure they’ll be showing up on this blog.

Rick was so generous and genuinely interested in our story and the memoir I am writing about my spiritual growth as a result of living with family members who went for so many years without a diagnosis. He excitedly shared with me his experience in the editing process of his book. Our connection with him endeared him to us.

In the morning, the doctors and researchers gave us HOPE.

In the afternoon, DM Warriors engendered ADMIRATION.

Throughout the day, Rick mixed in

JOY.

Thank you, Rick. You are one extraordinary human being.

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.

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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.

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