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.”

 

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)

family-support-at-dm-conference

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!!

Healing the World

holding the world

As the world around me swirled (I awoke with vertigo this morning), I began listening to Chapter 2 of Krista Tippett’s new book, Becoming Wise: An Inquiry into the Mystery and Art of Living. I had barely begun listening when words of wisdom about the mystery and art of my own life circumstances emerged. 

“We are all healers of the world. It isn’t about healing the world by making a huge difference. It is about healing the world that is around us. That is where our power is. How would I live if I were exactly what is needed to heal the world?” ~Rachel Naomi Remen

Remen’s words remind me how important extending “conscious love” to my daughter is—the treasured “opportunity” that awakened within me while rummaging through the darkness that emerged when it became clear she would be living with me full-time for an extending period of time.

Remen’s wisdom, learned from her Hasidic Jewish grandfather, places this “opportunity” into a larger context. I am exercising my power to change the world.

My True Self, the higher part of me who already knows how to love, watches. I move through my days extending love in quiet ways no one around us would notice. The difference I make is not huge, but, in the week since I’ve been “consciously loving,” I do see a difference for my daughter…and for me.

I will continue keeping Remen’s question before me: “Am I living as though I am exactly what is needed to heal the world?”

The question Elizabeth Alexander asks at the end of her poem below touched my soul:

“And are we not of interest to each other?” ~ Elizabeth Alexander

Ars Poetica #100: I Believe by Elizabeth Alexander

Poetry is what you find

in the dirt in the corner,

 

overhear on the bus, God

in the details, the only way

 

to get from here to there.

Poetry (an now my voice is rising)

 

is not all love, love, love

and I’m sorry the dog died.

 

Poetry (here I hear myself loudest)

is the human voice,

 

And are we not of interest to each other?

And Fr. Killian McDonnell’s reminder in his poem below bestowed levity:

Perfection, Perfection by Killian McDonnell

(“I will walk the way of perfection.” Psalm 101:2)

I have had it with perfection.

I have packed my bags,

I am out of here.

Gone.

 

As certain as rain

will make you wet,

perfection will do you

in.

 

It droppeth not as dew

upon the summer grass

to give liberty and green

joy.

 

Perfection straineth out

the quality of mercy,

withers rapture at is

birth.

 

Before the battle is half begun,

cold probity thinks

it can’t be won, concedes the

war.

 

I’ve handed in my notice,

given back my keys,

signed my severance check, I

quit.

 

Hints I could have taken:

Even the perfect chiseled form of

Michelangelo’s radiant David

squints,

 

The Venus de Milo

has no arms,

the Liberty Bell is

cracked.

Such a rich way to begin my day. Thank you, Krista and Company!!

A Gift of Grace from the Universe

The telephone rang, interrupting my brooding about the abrupt alteration in my life circumstances and whether or not I needed an anti-depressant to deal with my situation more effectively. I suspected I was depressed because I was loosing interest in working on my memoir. What worthwhile do I have to say anyway? I had wanted to write something on my blog, but couldn’t find the words or the strength. I couldn’t even post updates on my Facebook page or update friends about the latest in my daughter’s and my saga. Talking with friends took more energy than I had to spare. Watching mindless TV was about all I could handle, often falling asleep in the middle of a program.

I got up from my recliner and ambled from the meditation room to the phone in my living room. Picking up the handset, I checked the caller ID and didn’t recognize the name. It’s probably a wrong number. I clicked the talk button. “Hello.”

“Is this Linda Marshall? Did you teach at Port Clinton High School?”

screenbean-phone (1)

My mind scrambled to make sense of this call. Yes, I had taught typing, shorthand, and office practice at Port Clinton High School in 1964-65. It was my first teaching assignment right out of college. Why would someone be asking about that long ago time in my life?

When I responded that I was that Linda Marshall, the woman on the other end of the line began to cheer. “Hallelujah, I’ve found you. I’ve been looking for you for years.”

She went on to tell me the story about how she came to be a shorthand student of mine and wanted to know if I remembered her. I have to admit, I have few memories of that year in my life. I didn’t tell her this, but the humiliating memory I have retained is being given a negative evaluation by the principal in the lunchroom in front of the other teachers. I was under the impression I hadn’t done a very good job teaching there.

Her memories were vivid. She recounted dropping home economics and signing up for shorthand. She said I was so strict. My memory of the details are fuzzy here because she was pouring out her story faster than my brain could take it in. I remember hearing about two “F’s” and she was ready to drop the class. She said others had and I let them. But when she came to talk with me about it, I encouraged her to stay. I said, “You are going to get this.” She said I had been right. The next grade and those that followed were “A’s.”

She told about I threw away any typing papers that had errors erased on them. She said I explained to the students that employers would make them type letters and documents over again if they contained mistakes like these. She said the experiences she had as a secretary had proved me right again.

Then she told me about her career. Again, the details are fuzzy, but she was promoted several times and reached high administrative assistant levels working in governmental agencies.

She went on to say that I had influenced her more than anyone else, made her into the person she is today, and would not have had the career she had if not for me. She recounted the steps she had taken over the years to find me, discouraged by so many dead ends. Her class will celebrate their 50th reunion in September and there are several of my former students who want me to be there.

I sank back into my recliner, my eyes watering, as I took in this gift of grace from the Universe. I told her, “I can’t tell you how much it means to me to hear you say this today. I’m going through a rough time in my life and have been feeling depressed.”

We acknowledged that she had found me at just the right moment.

3e627-keyboard2btyping

This was the best anti-depressant anyone could have given me. I could literally feel the energy of aliveness returning to my exhausted and weary body. I had made a difference in someone’s life. A false impression I had carried about myself for fifty-one years was transformed. With that, I returned to writing. I do have something worthwhile to say. Thank you, Universe. You continue to surprise me with the mysterious and awesome ways in which you work.

Monarch

Atonement

She covers her eyes with her hands and starts to cry. “I thought you’d be mad.”

Crying

It was the second time today she had burst into tears. The first was disappointment. The hysterectomy she had been looking forward to having was being postponed. She had been preparing herself mentally for weeks and last night we had worked together to prepare her body. Oh those unpleasant enemas and douches. We were both glad when that was over. She had her last sip of water at 11:30 pm. “Nothing to eat or drink after midnight” the directions said. “Be at the hospital at 11 am.” We were there at 10:30.

Her oxygen levels are too low. The anesthesiologist is not about to do surgery. “Are you sure you’re feeling okay? Have you been short of breath? We’re sending you to ICU to see how to get your oxygen levels up. We’re calling in a pulmonologist and a neurologist.”

A very kind and skilled nurse brings in a spirometer and teaches her how to exercise her lungs. I have rarely seen my daughter so motivated. Motivation is not a strong suit for someone with myotonic muscular dystrophy (DM). She is told to use it every hour. She uses it several times in the first hour, proud of herself when her breath pushes the ball into “good.”

incentive-spirometer

DM is a slowly progressing neuromuscular disease. Until Medicare kicked in a year and a half after she was awarded social security disability and before the Affordable Care Act was passed, she went without medical care except for a few trips to the emergency room and twice a year visits to a doctor through the Muscular Dystrophy Association’s clinic in West Chester. When she needed an endometrial ablation in 2013, she paid for it out of the back pay she received from Social Security. When her fibroids grew and began pushing against one of her kidneys, it was time to have her uterus removed.

General anesthetic is dangerous for someone with DM. Thanks to the Myotonic Dystrophy Foundation, we have pages of instructions for the anesthesiologist. The plan was to give her an epidural.

The anesthesiologist seems to know what she is doing. She tells me later, “You will need to advocate for a neurologist.”

I soothed my daughter’s tears the first time they burst forth. “I think this is good. You will be getting the medical attention you have needed for years.”

She is in panic mode. How will she manage her time off work? She has been granted six-to-eight weeks leave from her cashier position at a local discount department store where she has been working part time for the past several years.

Yes, she works part time since the convenience store where she had worked fulltime for seven years closed. When someone with DM wakes up in the morning, they feel as though they have already put in a full days work. My daughter has insisted on working and living independently for as long as she can. She lives with the fear of being in a wheelchair someday. I hope you can appreciate how big that is. Motivation is not a strong suit for many with DM.

“We’re going to take this one thing at a time,” I tell her. “For right now we need to get your oxygen levels stabilized. We’ll see what happens after that. You won’t be the first employee whose medical attention didn’t go quite as planned. Your workplace will deal with it.”

She relaxes.

“What makes you think I’d be mad?”

I ask the question but I already know the answer. I cringe. Her fear harkens back to old behavior on my part. So much about the way someone with DM manages their world is foreign to me. In addition to the fatigue my daughter experiences with her muscle weakness, the executive function deficit that is part of the disease makes it difficult for her to plan ahead, organize her life, keep her living space in order, attend to personal hygiene. The list goes on and on.

As a perfectionist who needs order in her life, I have been impatient with her and sometimes guilty of angry outbursts.

She says, “You weren’t expecting this. You had your schedule all arranged for the surgery to be today.”

I’m retired. I have no employer to contact. I have plans with friends to rearrange and reworking my memoir can be put on hold. My daughter doesn’t know about the spiritual practice I have adopted. I have been working to maintain serenity and equilibrium in the face of any stress that comes my way. I’ve been working hard to let go of my need for order while she has been living with me in preparation for her surgery. I set an intention to extend loving kindness to her. She deserves that and so much more. She lives her life heroically.

I tell her, “I’m sorry for anything I’ve done in the past that would make you afraid I’d be mad today.”

I atone for past transgressions. My relationship with my daughter continues to heal.

Doorway to the Divine

The whole universe and all events are sacred (doorways to the divine) for those who know how to see. In other words, everything that happens is potentially sacred if you allow it to be. ~Richard Rohr

I mentioned in my last post that one of the readers of my memoir, A Long Awakening to Grace, challenged me to dig deeper into my story. In the process of excavating, I invited my forty-four-year-old daughter to have a talk with me.

When I trained in Imago Relationship Therapy, we learned a valuable listening skill called “The Intentional Dialogue.” We were taught to leave our own world behind, our perceptions, thoughts, and feelings, in order to enter and be present to the world of another. Listening deeply in this way gives us an opportunity to understand the other person at the level of their soul. It can be quite revealing. I decided to use this skill during our talk, which proved to be a “doorway to the divine.”

ml1gNuu

After taking our places in my living room, I began, “I’d like you to tell me what it was like for you as a child having me for a mother.”

Being in my daughter’s world was heartbreaking as I listened to the depth of her anguish–sacred moments of truth telling. And then her magnanimous soul emerged. She gave me an unanticipated gift of grace–understanding and forgiveness.

Forgiveness does not change the past, but it does enlarge the future.     ~Paul Boese

My daughter received an empathetic response from me as I validated her reality. I received her understanding and forgiveness, thus allowing me to forgive myself. Our future is enlarged. If my memoir does nothing else, the writing has proved to be healing for both of us. And that is a lot! I am filled with awe and gratitude.