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.

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

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

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

Fear surfaced related to current challenges Nicole and I face:

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

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

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

Pam Speer Lewis, MDF Project Development Manager

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

care-cure-bracelet

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

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

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

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

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

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I could not help but notice what rare resilience each DM Warrior in that room demonstrates — those who carry this rare genetic neuromuscular disease, those of us who love and care for them, and the doctors and researchers who won’t give up until they find a cure. We are quite a community.

It Takes a Village

One of the presenters at the Myotonic Dystrophy (DM) Conference held at Cincinnati Children’s Hospital yesterday noted that it takes a village of doctors and researchers to address the issues associated with DM.

I thought, “It also takes a village to live with the issues associated with myotonic muscular dystrophy.” I was grateful to make some in-person connections.

Connecting with the DM Village

When Nicole and I walked in, Jane Shields from Indiana greeted us immediately. She recognized me from our Facebook caregivers’ page. Here are pictures of Jane and her family. Later we ate lunch at the same table.

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.

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Family support group being facilitated by Kathleen Cail (black boots)

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Bonnie from Dayton with dark ponytail.

The Faces of Hope

John Kissel, Nicole’s Ohio State University neurologist, was our first presenter. He co-directs the MDA clinic at OSU. DM is one of his areas of interest and he is a principal investigator for a promising study of a therapy that could lead to a cure for DM. Here he is checking his messages after talking with John and Jane Shields during our lunch break.

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John Kissel, M.D.

Lubov Timchenko, heads a laboratory located at the University of Cincinnati, where research is being done on the molecular pathophysiology of DM. She is a renowned expert researcher in the development of molecular therapies that will hopefully lead to clinical trials and a cure. She was our second presenter. I connected with her after lunch and she agreed to let me take her picture if I was in it. Here we are:

Lubov Timchenko, Ph.D.

Lubov Timchenko, Ph.D.

I didn’t get a picture of our third presenter, so this one is from the web. Joseph Horrigan is a pediatric neuropsychiatrist who recently accepted a position as the head of clinical development with AMO Pharma. Dr. Horrigan is leading a team that designed and commenced the first clinical trial specifically targeting congenital and childhood-onset DM.

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Joseph Horrigan, M.D.

I did get a picture of two of the people who work with Dr. Horrigan at AMO pharma. Talking with them was exciting because they told me the drug they are developing will help with the executive function deficit aspect of DM, the feature of the disease that has most affected our family.

Joff Masukawa and Lisa Wittmer

Joff Masukawa and Lisa Wittmer

In his presentation, Dr. Kissel mentioned Shannon Lord and asked if any of us remembered her. I think I was the only one in the room to raise my hand. She is one of the founders of the Myotonic Dystrophy Foundation and unfortunately died of cancer in June of 2013. Click her picture to read an inspiring tribute to her.

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!!

A Synchronistic Meeting

sychronicity

After I retired, I joined a spirituality forum held at our local senior citizens’ center. A few members of the group gathered for a brown-bag lunch following our two-hour meeting. One day a new member joined us and during lunch mentioned that she was writing her memoir. I said to her, “I’m writing mine, too. We should become writing partners.”

Nita agreed to give my suggestion a try. That was in March or April 2012. With few interruptions until recently, we met every two weeks. This provided a structure to move forward. Every two weeks, I needed to have written something to read to Nita for her critique and vice versa.

As I listened to Nita’s story, it became clear to me that she was just the kind of woman I expected to judge me. Her marriage is fulfilling, her husband is supportive, she has four high-functioning children, and she developed a successful career. Of course, she faced challenges. Otherwise what would she have to write about in a memoir. But she handled her challenges with wisdom and skill.

My story is full of family challenges that it took me a long time to learn to handle with wisdom and skill. As we began meeting, I carried a great deal of shame and it took every ounce of courage I possessed to read some of my chapters to her.

Nita gave me excellent suggestions for improvement without an ounce of judgment. We developed a ritual of giving each other a hug as we came together and before we departed.

After we had been meeting for a year or so, I wanted to send Nita a card by snail mail. I searched for her zip code through google. Up popped a whole page of entries about Nita. I sat back in awe, exclaiming to myself, “Wow, she’s a famous artist! I had no idea.”

That gives you a picture of Nita’s character. She is confident and humble and doesn’t have a need to flaunt her success. In fact, she may not be happy with my writing about her success in this blog post. But, to me, it is an important part of our synchronistic meeting.

One day, after reading a particularly painful part of my story, Nita said, “I think I was chosen to hear your story.”

I replied, “It was definitely Divine guidance that brought us together.”

Recently, Nita and I were forced to put our memoirs on the back burner and take a break from meeting. My daughter’s healthcare crisis and her subsequent moving in with me took first priority. Nita’s publisher wanted her to put together a thirtieth anniversary edition of her first book, Exploring Color, and she needed to focus on that.

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Links to Northlight and Amazon

My daughter is stabilized now and Exploring Color is out in the world to enthusiastic acclaim, so Nita and I are meeting again. Our memoirs are written and in various stages of editing. We no longer need to read passages for critique. But we find each other’s support invaluable as we continue the process toward publication. We still hug upon greeting and departing.

When I suggested to Nita that we be writing partners, I had no awareness that a “magical” connection was being made that would propel my soul’s longing forward. How blessed I am that Divine guidance chose Nita to be the first to hear my story.

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.

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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.

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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