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.

 

A Disturbing Awakening

Awakenings often begin with a disturbance in the midst of ordinary circumstances. I have found that if I stay with the disturbance long enough and follow its threads in my life, a profound awakening is in the offing. Recently, I experienced this unexpected phenomena.

On a Saturday afternoon in January, I joined three of my cousins (Chuck, Cathy, & Mike) and Cathy’s husband (Gary) for a visit with their mother (my Aunt Evelyn), in her assisted living facility. We formed a circle in a lounge area for our visit.

Mike, Cathy, & Chuck behind Aunt Evelyn

A volunteer at the facility approached us. She seemed to know my aunt and cousins. She shared the progress she was making on her cancer journey. Then she suddenly launched into a political rant.

I found what she said offensive.

I looked down and played with the zipper on my coat.

Mike attempted to engage her in conversation, but she was on a roll and was not really interested in dialogue or in hearing another point of view.

I continued to play with my zipper.

I felt jarred by her intrusion into our pleasant visit. On the hour’s drive back home I wrestled with myself. Despite my discomfort with what she said, I said nothing. I could have launched into a rant of my own. I have some strong political opinions, but I said nothing.

That evening my daughter and I watched a movie that had been recommended by my friend, Ani. Gentleman’s Agreement is a 1947 movie starring Gregory Peck.

Gregory Peck portrays an investigative reporter who has been assigned to write a series on anti-Semitism. He struggles with how to approach the subject. Then one day he has an idea. He’s new in town and no one knows him, so he decides to pretend he is Jewish. Instead of basing his series on research and interviews, he would be able to write from experience. Even though his best friend from High School is Jewish, he is shocked by some of his experiences.

In the meantime, he falls in love with a woman. She is from an upper middle-class family and shares his hatred of anti-Semitism. But in her tight-knit community of family and friends, they have a “gentleman’s agreement” not to speak up about the discrimination, prejudice, and hostility they witness. I squirmed as my eyes were suddenly opened to something about myself that has bothered me for years.

From 1990 until my retirement in 2007 I worked as a chemical dependency family therapist for Turning Point, Miami Valley Hospital’s treatment center. I am guessing that the event that bothered me happened sometime around the turn of the century in 2000. The African-American member of our staff decided to do a survey of our African-American clients to see  how they felt about the way they were treated by the white staff.

At that time, we had five or six African-American clients. When our coworker gave us the results, the only thing I remember from that survey was that they dubbed me “Miss Nicey-Nice.” I took that to be a derogatory term and it bothered me for years because one of those clients was special to me. In my private practice as a couple’s therapist, I had worked with him and his wife. I loved them and agonized with them about the difficulty he had letting go of his addiction.

So, for at least sixteen years, I carried that with me. What did they find objectionable about my being “nice.” With my father’s shining example, (see my December 3 post), I thought treating others with respect and compassion was a good thing.

But as I listened to Gregory Peck and his love interest argue about her reluctance to speak up to her family and friends, my eyes popped open.

That must be why they called me “Miss Nicey-Nice.” I’m too nice to speak up in the face of injustice. Just like today. I stayed silent during this woman’s diatribe, despite how offensive it was to me.

I didn’t like what I saw about myself.

Being “nice” isn’t a bad thing, but sometimes it is not enough.

I need to change.

To be continued.

 

 

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.

Influences: My Father’s Shining Example

Robert E. Marshall 1918-2009

Robert E. Marshall
1918-2009

In 1951, when I was nine and my brother eight, our parents sold our house in Sidney, Ohio, auctioned off most of our belongings, and moved to Tarpon Springs, Florida. Leaving our numerous playmates and beloved neighbors was not easy. I remember the morning we left, sitting in the backseat of the car with my stomach in knots, holding back tears as we said our goodbyes to John, Celeste, and Annie Voress, neighbors who were like family. I had no idea when we embarked on this one-year odyssey that it would have such a profound influence on me.

Dad dropped out of high school after his junior year. Sugar in his urine shattered his dream of joining the air force at the beginning of World War II and becoming an airplane mechanic. Never abandoning his fascination with flight and eventually the space program, he actualized his passion by focusing on car mechanics.

dads-gas-station

When we moved to Florida, Dad purchased a gasoline station. Because of the long hours involved, it became a family business. In order to spend time with Dad, Mom often worked there. Self-service was not yet a reality. Many a customer’s mouth dropped open when Mom approached their car to pump their gas. After school, my brother and I hung out at the station. I mostly remember causing trouble, but I’m sure we were given chores. I observed with keen interest this new environment, learning a great deal about the culture of The South, and being influenced by my father’s behavior and attitude.

The previous owner of the station attempted to teach my northern father how Jim Crow worked in The South. Jim Crow laws replaced earlier “black codes” which were designed to restrict and deny civil rights and liberties to African Americans. In 1951, they were part of the state constitution of Florida and mandated the segregation of public schools, public places, public transportation, restrooms, restaurants, and drinking fountains. The previous owner showed Dad how to cheat “negro” customers, though he used a derogatory term when referring to them. He didn’t need to tell Dad about the rules regarding the use of the one bathroom and one drinking fountain. “Whites Only” signs were prominently posted.

As soon as Dad took possession, those signs came down. I don’t know who influenced my father, but Dad always had a soft spot in his heart for the underdog. He treated his black customers with the respect they deserved. We developed a large black clientele.

“Blessed are the merciful, for they shall obtain mercy.” Matthew 5:7

When these customers needed work done on their cars but couldn’t afford to pay for it, Dad gave them odd jobs to do around the station in exchange. One day, a black gentleman approached my dad asking for a loan. Even though Dad wasn’t growing rich as a business owner, he loaned the man the money. I was there the next afternoon when this man, probably in his late 50s or early 60s, returned the money. “I didn’t need it after all,” he told my dad. Later, I overheard my parents speaking of the irony around the way blacks are viewed in relation to whites … comparing the integrity this black man displayed with the lack of character demonstrated by a white male employee who stole from us.

The Monday after Thanksgiving, I began listening to The Warmth of Other Suns: The Epic Story of America’s Great Migration written by New York Times Best Selling and Pulitzer Prize winning author, Isabel Wilkerson. Tuesday, I learned some shocking information about Florida I’m fairly certain my parents didn’t know … some facts that I’m sure the man who asked for a loan did.

Florida was one of the first states to secede from the Union in the months leading up to the Civil War and was one of the first in the South to institute a formal caste system designed to restrict black people after the war. Because Florida was shut off at that time from the rest of the world by its cypress woods and turpentine camps, it instituted its own laws and constitution, allowing this state to commit among the most heinous acts of terrorism perpetrated anywhere. Violence had become such an accepted way of life that a 1950 special investigation, just one year before we moved there, found that there had been so many mob executions in one county in the 1930s, there weren’t any negroes left to go to trial. In this culture, no negro man could have grown up without the fear of being lynched. That would have included the courageous man who asked dad for a loan.

I doubt when Dad removed the “Whites Only” signs and when he treated his black customers with fairness, he knew he was breaking the law, laws that continued in force until 1965. I’m sure he didn’t view this as an act of civil disobedience, even though that is what it was. I like to think his behavior wouldn’t have changed if he had known. It is the aspect of my father for which I carry the most pride.

“Blessed are those who hunger and thirst for righteousness, for they shall be satisfied.” Matthew 5:6

I didn’t know until this week the enormity of the action my father took when he removed those signs. To him, he was only showing respect for another human being. To me, he showed compassion for the struggle of those relegated to the ranks of so-called “losers.”

Dad demonstrated that same soft spot in his heart after we moved back to Ohio. At that time, New Bremen had about 1500 residents. Sometime during the next eight years before I graduated high school and moved away, black people were employed by the alfalfa mill on the edge of town. They lived in run down houses near the mill. I don’t remember seeing them in town except for one high school student two to three years older than I, a beautiful young woman who had the courage to attend one of the weekly dances held for teenagers at the hall above the hotel. I admired the farmer boy who asked her to dance.

I don’t think it was her family, but a fire destroyed the home of one mill family who bore the same last name as ours. Dad went around town collecting food, clothing, and household items for them. Someone asked him why he was doing that. He said, “They’re my cousins.”

“You are the salt of the earth;” Matthew 5:13a

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2008

During the 2008 presidential election, Dad was an ardent supporter of Barack Obama. After the election, his health deteriorated rapidly as he grieved the loss of my mother who died early in the morning following Thanksgiving Day. He said he wanted to live to see how Obama fared in office. Sadly, he died on January 3, seventeen days before the inauguration. I have sometimes been grateful he didn’t live to witness the bigotry and obstructionism foisted upon our first black president. It probably wouldn’t have surprised him, but it would have only added to his grief.

In recent weeks I have been contemplating what influences people to be who and how they are. After twenty-six years as a political prisoner, Nelson Mandela transcended his anger and embraced forgiveness while his compatriots continued to harbor revenge? I read a story this week about a Muslim man who was shot in the face by a white supremacist after 9/11. His faith led him to forgiveness to the point he tried to save his assailant from death row and give his life to educating people about the transformative power of mercy and forgiveness. His actions changed the white supremacist’s attitude from hatred, which he had learned from his step-father, to admiration for this Muslim man and his parents who he realized were extraordinarily good people. These and other stories have caused me to reflect upon how influences in all our lives can be seen in our behavior for good or for ill.

I will never know the influences on my dad. Dad wasn’t a religious man, but in his interactions with those less fortunate than he, I see him doing his best to live “the way of love.”

“So faith, hope, love abide, these three; but the greatest of these is love.” I Corinthians 13:13

What I do know is that it is Dad who influences me to use my talents in the service of deeper spiritual values like respect, compassion, justice, forgiveness, authenticity, beauty. It is Dad who influenced me to write about Leymah Gbowee, Nelson Mandela, Victor Frankl, and Elizabeth Lesser, people who embody these values. It is Dad who influences me to continue to seek and lift up voices of wisdom, inspiration, and hope who bring light and enlightenment to our dark and murky world.

Thank you, Dad.

I have never been more grateful for your shining example.

1942

1942

1991

1991

1945


1945

Who has been a shining example in your life?

 What values have you adopted because of their example?

How have they influenced your behavior today?

In what way is your behavior contributing to “the way of love?”

Searching for Inspiration

In the face of the shock, fear, disorientation, PTSD-type symptoms, sleep disturbances, and physical manifestations many of my friends and I have been experiencing following our recent election, I have needed to spend time in sacred silence … a time apart for reflection. During this time I have been strengthened by encounters with strong souls who have the leadership qualities I admire. These are the people who have come my way through film, literature, and television. I will continue being on the lookout for more of these massive characters because they give me hope and help me transcend my shock and fear. I pray that this blog post contributes to the strengthening of the souls  of all who read it.

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” ~Khalil Gibran

In the face of the election of a man who has threatened to use the nuclear option, has little-to-no impulse control, and who will have access to nuclear codes, I am

Inspired by Courage

librean-women-ii

Friday evening following the election, friends loaned me a DVD of a documentary about courageous women from Libera engaging in peaceful protests for peace: Pray the Devil Back to Hell. According to the filmmaker, she had difficulty finding footage of the original events because journalists perceived these women as “a pathetic-looking group” that didn’t warrant their attention. This “pathetic-looking group of women” took down a violent dictator without firing a shot and brought peace to their country. speaking-truth-to-power

Their leader, Leymah Gbowee, hadn’t led an exemplary life and didn’t think herself worthy of directing this peace movement. The women reminded her of the failings of Biblical leaders who grew into their greatness and insisted she had the qualities to lead them. She grew in her courage to speak truth to power and won the Nobel Peace Prize in 2011 for providing leadership for the Women of Liberia Mass Action for Peace. The courage of these women inspires me and gives me hope.

~ ~ ~

In the face of the election of a man who displays blatant disrespect for and abuse of women … a man who threatened to incarcerate a woman challenging his bid for election … who sees women who work outside the home as “a dangerous thing” … a man who mocks disabled people like my daughter … who tries to disempower others by calling them “losers,” I am

Inspired by Wisdom and Greatness

mandela-love

Then on Monday evening, I watched the 2013 movie, Mandela: Long Road to Freedom. I watched as several other men were imprisoned with Mandela on Robben Island  from 1964 to 1990 … twenty-six years of their lives. Those other men came out bitter and revengeful. Mandela came out angry and forgiving. I wondered how these men who went through the same prison experience came out so differently. I wish I could remember Mandela’s exact words to the white men in the government who had imprisoned him. His sentiments were that he didn’t want to become like them. He didn’t want to live in their hell … the one they created for themselves by victimizing people who they feared because of their difference … by imprisoning and trying to silence those struggling for basic human rights and freedom.mandela-live-in-a-way

Mandela refused to take up arms, even though many wanted him to. He refused to stoop to the level of his captures. His Spirit could not be held captive. And because of that, he became one of history’s greatest leaders. He tackled issues related to institutional racism and ended the practice of violent racial segregation in his country. He advocated for racial reconciliation and developed methods to achieve it that are practiced even today.

“There is only one thing that I dread: not to be worthy of my sufferings.” ~Dostoevski

victor-franklThen I remembered having read Man’s Search for Meaning by Victor Frankl. He chose how he would respond to being imprisoned in Auschwitz. While his outer life was being ravaged by the infliction of hate and cruelty, he developed a rich inner life focused on love and beauty. Inspired by those martyrs he witnessed in the camp whose inner freedom was not lost when they suffered and died, he chose spiritual freedom and dignity.

Mandela and Frankl made use of the opportunities of attaining the moral values that a difficult situation afforded them. They chose to be worthy of their suffering. They are examples of true winners. These great men inspire me and give me hope.

~ ~ ~

In the face of the election of a man who has so much difficulty saying, “I’m sorry,” I am

Inspired by Authentic Connection

“Err in the direction of connection. We long to know each other soul to soul.” ~Elizabeth Lesser

Elizabeth Lesser, one of four sisters, was a perfect match to serve as the boneelizabeth-lesser marrow transplant donor for her sister with lymphoma. Elizabeth describes herself as the “woo-woo” person in the family. And so her sister, a nurse practitioner with a scientific mindset, was surprised that Elizabeth was her perfect match. However, she had lymphoma and time was of the essence, so she was willing to risk trying Elizabeth’s “woo-woo” suggestion. Elizabeth wanted to give the bone marrow cells the best chance at healing her sister and believed that the unforgiven, broken, unexplored places in their relationship could weaken their effectiveness. She asked her sister to enter into a process of healing their negative assumptions about each other, the assumptions that had calcified into disconnecting behavior.

marrow-a-love-storyIn her memoir, Marrow: A Love Story, Elizabeth describes what she calls the work of a lifetime … finding the balance between loving yourself and another well. Her book is one of the next on my list. I heard her describe the journey she and her sister embarked on — a journey of finding that balance in their relationship. While Elizabeth acknowledges that not everyone is safe to be this vulnerable with, she and her sister took the risk. They didn’t have time to waste, so they plunged in responding to the question, “How did I hurt you?” They listened deeply without their usual defenses and assumptions. Then they asked, “Will you forgive me?” They did this until there was nothing left between them but love.

Elizabeth’s sister described the following year as the best year of her life. Even though it was filled with pain and fear, she had never felt more clearly herself. She had come home to herself. Elizabeth learned a valuable lesson, too. She learned that she didn’t have to be a perfect person to be just the right person for her sister at this crucial moment in her life. Elizabeth said she felt more “at one” with her sister than with anyone else … the great mystery of knowing themselves in their grand simplicity when two “enoughnesses” meet.

Elizabeth’s earlier book, Broken Open, inspired me during a time of struggle in my life and I had the opportunity to tell her that when I met her while attending classes at Omega, the life-long learning institute she co-founded. I consider her one of my spiritual teachers.

Elizabeth is a woman who, having tasted the dignity and goodness of her own soul, sees and respects the dignity of others. She inspires me and gives me hope.

“Make love your aim, and earnestly desire the spiritual gifts …” I Corinthians 14:1

It would mean a lot to me if you shared in the comments section of this blog or on Facebook:

  • who inspires you

  • how they inspire you

  • and how their inspiration contributes to you.

Changing How We See

“Your eye is the lamp of your body; when your eye is sound, your whole body is full of light; but when it is not sound, your body is full of darkness.” ~Luke 11:34 RSV

In my October 8 post, “Scales Falling From My Eyes,” I shared how my former students enthusiasm about seeing me again and sharing about the difference I had made in their lives led me to go back to my motel room, look in the mirror, and say to myself, “Linda, I think it’s time you started looking at yourself differently.”

When the student is ready, the teacher appears

I find it interesting and awe inspiring how the Universe conspires to help us grow. Almost as soon as I said those words, I was led to listen to Susan Cain’s book, Quiet: The Power of Introverts in a World that Can’t Stop Talking. I was aware of Susan’s book at least three years ago and knew I wanted to read it, but somehow I didn’t get to it until just the right moment to be able to garner its wisdom for me.

Teacher Number 1

quiet

In Quiet, Susan addresses how our society moved from being a “culture of character” to a “culture of personality.” Whereas we once valued good deeds performed when no one was looking, we now value magnetism and charisma. Instead of Abraham Lincoln as our ideal, we now idolize movie stars with just the “right” facial features and body types.

Listening to Quiet, I heard  Cain point out just how significant appearance is in our society. That has become abundantly clear in a most hurtful way in our recent presidential election. Our success in life is judged by the standards set for supposedly “the most beautiful people in the world.”

Awakening to the effects of our “culture of personality’s” influence on me, I didn’t like what I saw. I didn’t like it that I felt the sting of viewing myself negatively because I fall short of our society’s standards of beauty. I didn’t like it that I look longingly at the women who do possess our society’s standards of magnatism and charisma. I didn’t like the difficulty I have seeing beauty in those who don’t fit our cultural standards.

I wanted to rid myself of this scourge.

Teacher Number 2

In my October 29 post, I wrote about meeting Rick Guidotti at the Myotonic Dystrophy Conference held in Cincinnati on October 22. As an award-winning fashion photographer, Rick has photographed women and men who are considered the most magnetic and charismatic among us … our culture’s most beautiful. But he grew frustrated with being told who was beautiful and who he had to photograph. Because he sees beauty in diversity and finds it in places where others wouldn’t even think to look, he changed his life and is making an enormous difference in the lives of many others.

Because he SEES beauty in everyone

 

The mission Rick committed to through Positive Exposure is to transform the way the world views beauty. Wow, do we need that today. He wants to change public perceptions of people living with genetic, physical, intellectual and behavioral differences. One out of five children  in the United States is born with a disability making the need for society to understand and respect children and adults living with these differences critical. Positive Exposure’s educational and advocacy programs reach around the globe to promote a more inclusive, compassionate world where differences are celebrated.

Rick’s book, Change How You See, See How You Change features over 50 genetic syndromes through portraiture and personal narrative, giving expression to each individual’s heart and soul. It invites readers to see beyond diagnoses to the humanity we all share.

Thank you, Rick, for changing how I see.

I look forward to seeing how I change.

Now that my eyes opened to my faulty way of seeing, some synchronicities (The Divine’s way of remaining anonymous) began popping up all over:

More Teachers

A Tribute to Discomfort

On Pushing Through A Struggle:

“There’s incredible amounts of raw human and natural beauty happening everywhere.” ~Cory Richards

 

 

and

Sir Elton John speaking about his modernist photography collection:

“I was seeing through different eyes. I saw beauty that I’d never seen before.” Sir Elton John

Link

Glass Tears

 

 

and

thriver-soup

Heidi Bright noticing my attempts on Facebook to find beauty in the midst of cultural ugliness and sent me her latest blog post with this quote from Elsie de Wolfe:

“I’m going to make everything around me beautiful. That will be my life.”

Read about Heidi’s experience finding beauty in the midst of a terminal cancer diagnosis in her memoir:

 

and

Then I picked up one of my favorite spiritual books, The Spiritual Dimension of the Enneagram: Nine Faces of the Soul by Sandra Maitri, and read this:

spiritual-dimension-of-the-enneagram

 

“Yes, I see who you believe you are, but let me  show you what and who is truly beneath those beliefs. Let me show you your jeweled possibilities.”  ~Sandra Maitri

 

 

 

 

I am beginning to see my jeweled possibilities.

Link

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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.

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.

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.

shields-family-at-dm-conference

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.

kathleen-cain-facilitating-faminly-support-group

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.

dr-kissel-jane-john-shields

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.

dr-horrigan

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.

shannon-lord

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!!

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