Another Step Forward

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

Remembering: Our Foundational Moments

On Wednesday, July 5, while my friends Kathryn and Sharon visited, another seminary friend, Pam, came for lunch. I wish I could convey in words the energy created in my home as we visited with each other. It was palpable and filled me with gratitude for these women and for the opportunities we have experienced in our lives.

Sharon (from Pittsburgh), Linda (from Dayton OH), Pam (from Austin), Kathryn (from Wichita)

I met Sharon and Kathryn in 1975 when we all began our sojourn with United Theological Seminary here in Dayton, Ohio. They graduated in 1978, a year before I did. Pam came to United later and had never met Sharon. Because Kathryn stayed in the area for a couple of years and I worked at the seminary for six years following my graduation, we had both met Pam.

So we began our visit by sharing how our lives had unfolded during the past thirty-nine years. And then we began to reminisce about our experiences at United — foundational moments for each of us.

Chapters 7 and 9 of my memoir, A Long Awakening to Grace*, recount how I was encouraged to enroll in United and some of my experiences while I was there.

Sharon, Kathryn, Pam, and I were among the first wave of women attending seminary in large numbers and we brought our curious minds and passionate hearts to our studies and the relationships we formed. We found our professors excited about the depth and breadth of the thinking of women students as well as our enthusiasm for our studies. Because women being called to ministry was a boundary breaking experience, we came with fresh perspectives.

We were unaware at the time how refreshing our presence proved to be for the faculty. One professor in particular had a reputation for being tough. But we didn’t experience him that way. He just loved quality work and expressed gratitude for women students giving it to him. He rewarded our efforts generously.

“Whoever believes in the good in people, draws forth the good in people.”  ~Jean Paul

All of us experienced being mentored and encouraged by faculty members to pursue the paths we were drawn to follow after graduation. The four of us looked back with awe at our professor’s generosity. We are all grateful to have attended United during this pivotal time in her history … a time when the faculty created a curriculum and an environment that drew out the best in those of us hungering to experience and live in alignment with the heart of Christianity.

“You shall love the Lord your God with all your heart, and with all your soul, and with all your strength, and with all your mind; and your neighbor as yourself.”  ~Luke 10:27

 

“This is my commandment, that you love one another as I have loved you.”  ~John 15:12

*A Long Awakening to Grace is slated for publication the end of August 2017.

The Greatest Love of All

Photo by Rick Guidotti of Positive Exposure

“Nicole is lucky to have you for a mother. You show her great love.”

These are words I frequently hear from those who know the lengths to which I go to find resources for her. I see this as my responsibility. I know it is a loving action, but I have the skills to do it and the only thing hard about it is finding the time to follow the leads and dealing with the disappointment of blind alleys and insufficient assistance and services.

Showing her love is something different in my book. Love is changed behavior and is, to my way of seeing, a powerful demonstration of love. It takes much more conscious effort. And it forces me to grow.

Nicole and I have both been showing our love by changing our behavior since she moved in with me a little over a year ago. After she reached adulthood, we tried living together before, and it didn’t work well. This time, we are both growing.

To ease the transition, I suggested we be intentional about giving each other a hug before going to bed at night. Expressing our love by hugging and expressing terms of endearment greatly reduced the tension in the air. It took about five months for us to begin to relax into a routine with each other that seems to be working for both of us.

Behavior I have changed:

  • I’m not as fussy about my home being neat and tidy.
  • I’ve stopped (except for a recent slip — I’m not perfect) screaming, yelling, and stomping when I’m frustrated or scared.
  • I take into consideration her preferences.
  • I watch TV programs she enjoys even though they are not my first choice and I wouldn’t normally give them the time of day.
  • I say “thank you” a lot more frequently.
  • I accept much more graciously what I cannot change about the way her disease affects her behavior.
  • When our needs clash, I engage her in problem solving to find a solution that works for both of us.

Behavior I’ve noticed that Nicole has changed:

  • She’s less messy around the house.
  • She’s forthright in her dislike of my frustrated/scared behavior.
  • She watches some TV programs I enjoy even though she finds them boring.
  • She initiates and takes responsibility for household chores without being reminded. (I really like it that she has taken responsibility to clean up the kitchen after I cook.)
  • She kids with me about my quirks.
  • She respects my need for silence and uses her headphones when I’m writing, meditating, or reflecting.

I know Nicole would rather live independently and I would prefer that, too. But that is not likely to be possible anytime soon. So, in the interim, we show our love through changed behavior. In my book, that’s the greatest love of all. And this is not what I set out to write today. Interesting.

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.

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

001-2

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?”

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.

Scales Falling from My Eyes

After the 50th reunion with my former Port Clinton students, I went back to my motel room, looked at myself in the mirror, and said, “Linda, I think you need to start looking at yourself differently.”

I arrived a little late for the reunion because I couldn’t find the Yacht Club. When I walked in, the class was gathered at the far side of the room for a group picture. I walked behind the photographer looking for Yvonne, the student who called me on June 29 (See June 29-30 posts). She spotted me, jumped up from her seat, and ran to give me a hug, exclaiming “My goodness you’re tall,” just as she had done when she walked into my shorthand class in 1964. She escorted me to my seat next to her husband before scurrying back for the picture.

yvonne

Miss Marshall and Yvonne on her tip toes. She refuses to call me Linda.

She reminded me why I had such an influence in her life. She came into my class a week late and was having difficulty catching up and grasping this strange shorthand language. She tried to drop out after receiving an “F” the first six weeks. I allowed other girls to do that but said to her, “You will get it. Just don’t give up.” Then, after receiving an “F” the second six weeks, she spoke to me again about dropping out. This time I looked at her with “very caring eyes” and said, “Yvonne, I have faith in you. You will get it. Don’t give up.” The next six weeks the light bulb went off and she got it, receiving an “A” every grading period from then on.

Yvonne also told me how strict I was while teaching typing (See July 1 post) and how disappointed she was that I only taught at Port Clinton for one year. The teacher who followed me was too lenient. She credits me with preparing her for the outside world. During her 39-year career, she used her skills at the U.S. Department of Interior and the Davis-Besse Nuclear Power Station. Every time she wanted a promotion and had to perform well on typing and shorthand tests to receive it, she said to herself, “Okay, Miss Marshall, you have faith in me so let’s get this done.” I had instilled in her the faith that if she wanted it badly enough, she could do it. And she did.

I am grateful I said what I said, but her career success says more about her than it does about me. Still, I am pleased that as a young woman of twenty-two, I had the presence to give her the support she needed.

Other students attending the reunion were also eager to tell me how they had used their typing and shorthand skills in their careers.

Joyce worked for three judges throughout her career.

Linda and Joyce

Linda and Joyce

Linda sidled up to me asking, “Do you remember me?”

Linda and Linda

Linda and Linda

In truth, I remember very little of my time in Port Clinton 52 years ago and in my usual fashion, what I remember reflects negatively on me as their teacher. Linda told me a delightful story that challenges these damaging memories.

She said it was unlike her, but when she came into my shorthand class, she found something funny. She sat in the back and created a disturbance with her giggles. “And there you were, a young teacher. (I’m only six years older than these students) I could tell you were frustrated, but you didn’t say anything for three weeks. I thought I should apologize to you.” She used one of her hands to make a slicing motion across her other hand adding, “Then one day you cut me in half. I was so embarrassed.”

I have no memory of this. I do remember having some difficulty in my student teaching keeping order in the classroom. I am a soft-spoken introvert, after all. But I must have learned. Still I have difficulty visualizing myself saying something that embarrassed her so much, and she wouldn’t tell me what I said.

But I’m glad I said whatever I said because Linda went on to say, “I got serious after that and I want you to know I did you proud. I worked for the State Department in Washington, D.C. for three years and walked by the White House on the way to work everyday.”

Sharon won this award and then said she wasn’t fast and accurate enough to use shorthand in her administrative assistant position. She thinks she tried to draw the characters so they would be perfect versus write them. Oh, Sharon, how well I know that “perfectionist trap.” At the reunion, she was having a lot of fun with and quite skilled with a camera.

award

Linda and Sharon

Linda and Sharon

 

 

 

 

 

 

 

 

 

 

 

My last connection was the most remarkable because it really had nothing to do with what I did as a teacher but with who I was being as a person.

Linda and Judy

Linda and Judy

Judy and her husband approached me toward the end of the evening. She said, “I didn’t take any classes from you. I was in your homeroom. I thought you were beautiful and I wanted to grow up to be just like you.”

She wrote next to her senior picture in the commemorative booklet provided for the event,  “Thank you  for being such an awesome role model for us.”

While she wrote, her husband said, “Yes, she talked to me about you and told me how she wanted to grow up to be like you.”

I said, “This is blowing my mind.”

In 1978, fourteen years after I taught at Port Clinton, I had a conversation with Harold Platz, the professor who led my core group while I was a student at United Theological Seminary. I loved and respected Harold, one of the pivotal influences in my life. I think I was seeking his wisdom, sharing with him my puzzlement about how someone had reacted to what I said during a core group session. He looked at me with gentle caring eyes and said, “I don’t think you realize the effect you have on others.”

I didn’t know what to say. He was so very right. That was 38 years ago.

Throughout my life, I have often heard, “You are so hard on yourself.” Even when I have been in the process of making a concerted effort to be gentler with myself, I would hear this. Often I was puzzled because being hard on myself felt normal. When someone liked me, I was puzzled about what there was to like. I could not and still have difficulty seeing who I truly am. Today, I know where this comes from. I am sensitive and when a sensitive child receives a lot of criticism, they internalize it. That is what I did.

Through the years, many friends and mentors who have loved and believed in me have tried to help me see myself more realistically as they see me. I’m a slower learner than Yvonne. Sometimes I’d catch a glimpse of how they saw me, but thick scales of conditioning cover my eyes.

Miraculously, on September 17, when I returned to my motel room after attending this reunion, I looked in the mirror and realized as never before that it is time to see myself differently. A chunk of scales fell from my eyes and I caught another, even clearer, glimpse of my true self.

Yvonne, Joyce, Linda, Sharon, and Judy served as agents of a Divine Presence who clearly wants my sight restored. I am still amazed that Yvonne searched for me until she found me 52 years later. Those are extraordinary lengths…not just for Yvonne…but for the Spirit working through her to finally open my eyes. I think the least I can do is begin to cooperate with the process of having my sight fully restored. My therapist has given me an assignment to further that process. What a priceless gift of grace. I am in awe and eternally grateful.

“So Ananias went and entered the house. He laid his hands on Saul and said, ‘Brother Saul, the Lord Jesus, who appeared to you on your way here, has sent me so that you may regain your sight and be filled with the Holy Spirit.’ And immediately something like scales fell from his eyes, and his sight was restored.” Acts 9:17-18a NRSV

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