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


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.”


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.

The Heart of the Matter

For the first time since November 11, 2005, after my yearly nuclear stress test, last week my cardiologist told me that my heart has improved.


Eleven years ago, after two weeks of chest pains, I submitted to my first such stress test. I was in denial that I could have a heart problem. Years before that, I’d been told after a cholesterol reading during a health fair at the hospital where I worked, “You should never have heart disease.” My HDL, the good cholesterol that needs to be high to protect your heart, was higher than she’d ever seen. Of course, her words were more memorable than the written report which pointed out that a sedentary lifestyle contributes to heart disease.

But on this day in 2005, my doctor ordered me to go straight to the hospital, even after exclaiming, “I’ve never seen anyone’s HDL be that high.” It was 101. He had no answer for my question, “Then why am I here?”

In shock, I went to the hospital’s cardiac cath lab not knowing if I was to have open heart surgery or a stent. As I lay on the table staring at the overhead lights waiting for the doctor to arrive, I asked myself, “How did I get here?”

And then I knew, “I’ve had a lot of heartbreak in my life.”


After the insertion of a stent into my left anterior descending artery, I changed my diet and began getting more exercise, and even though the doctor wouldn’t confirm that heartbreak contributed to the 98 percent blockage, I was convinced there was a connection. A few years later, an article appeared in the newspaper titled, “Heartbreak Syndrome.”

I picked up the Energy Times magazine at Health Foods Unlimited a couple of weeks ago. In their section on cardiovascular health, they had an article titled, “Living a Purposeful Life May Help Your Heart.” According to a Psychosomatic Medicine study, “People who reported having a strong life purpose had a lower risk of both cardiac events and overall mortality.” About four years ago I got serious about writing my memoir. And that is what has been giving my life meaning and purpose ever since.

Then this weekend, I read an article from the January 19, 2015 New York Times titled, “Writing Your Way to Happiness.” Researchers were studying whether the power of writing–and then re-writing–your personal story can lead to behavioral changes and improve happiness. They found that writing about yourself and your personal experiences can improve your mood, reduce symptoms in cancer patients, improve health after a heart attack, and boost memory.

They attribute the vast benefits of “expressive writing” to the fact that our inner voice doesn’t always get our personal narrative right giving us a faulty view of the world that can damage our health. Through writing, we can reflect on our lives and edit our narratives.

James Doty, M.D.

James Doty, M.D.

Just last night, I listened to a Krista Tippett interview with James Doty, a brain surgeon at Stanford University on her podcast, On Being. Dr. Doty is the founding director of the Center for Compassion and Altruism Research and Education.

Into the Magic Shop

His memoir is one I need to add to my reading list: Into the Magic Shop: A Neurosurgeon’s Quest to Discover the Mysteries of the Brain and the Secrets of the Heart. Among a host of other things in his fascinating interview with Krista, Dr. Doty spoke about Heartbreak Syndrome.


In the process of writing my memoir, A Long Awakening to Grace and reflecting on the painful struggle I went through for years, my narrative changed. When I first began trying to write it in 1999, I saw myself as a victim of circumstances. In 2012 that began to change. These words emerged from my pen while writing in my journal, “Thank God for my pain…it transformed me, broke me open, awakened me to grace, infused me with trust in the inherent goodness and wisdom of life.”

Writing a memoir is not for everyone, but whatever form reflecting on your story takes, awakening to a new, more honest assessment of your life can be a healing and transforming process. It has been for me. My faulty inner voice told me for years that there was something seriously wrong with me and that is why my life was so painful. During times of stress, that message still tries to take hold. But in writing my story, compassion for myself arose as well as admiration for the strength I’d gained.

The editing process is bringing even more fruits. Seeing myself through my amazing editor’s eyes, I am finally, even though a little timidly, claiming the intelligent, insightful, compassionate, passionate, persistent, and astonishing woman I truly am.

And now I’m being rewarded with a healthier heart as well. I am in awe and need I say, full of gratitude.


Memoir: A Path of Transformation

I want to write, but more than that, I want to bring out all kinds of things that lie buried in my heart.
Anne Frank
In 1999, after a long painful period in my life with both my children, we experienced being gifted with Grace. A twenty-two year search for the cause of our painful circumstances yielded nothing that made a difference. Then, quite miraculously, the answer arrived…in a hospital…in a most unexpected way. When the story was being relayed to a nurse (really an angel disguised as a nurse), she looked at me and said several times, “You need to write a book about this.”
Keeping a journal for most of my adult life has been my way of praying to The Mystery (what I prefer to call the Divine). In my journal, I write to understand my life, wrestling with the big questions of life, and, like Anne Frank, to bring out what is buried in my heart.
  • Who am I? Who am I being in my life?
  • What’s the purpose of my life? Am I living my purpose?
  • What values are most important to me and am I living in alignment with them?
  • What are my ideals and am I being true to them?
  • Does my life matter and, if so, in what way?
  • Am I living in a way that serves the greater good?
  • Are some people designated as special…chosen to receive joyful blessings?
  • What is the meaning of the pain in my life? Is it punishment? How am I to think about it?
  • What are the lessons I am here to learn? Am I learning them?
  • Can I trust You, The Mystery, to be a benevolent force? Are you for me?
  • If so, how am I being supported in the midst of all this pain?
At the moment of commitment, the entire Universe conspires to assist you.
Johann Wolfgang von Goethe 


It took ten years after that first encouragement to find the maturity to begin writing A Long Awakening to Grace in earnest. I’d been writing at it for years. And then these past four years, my memoir has been writing me. 

Two years ago, I found a writing partner in the Spirituality Forum meeting at our local senior citizens center. We were both writing our memoirs and decided to meet every two weeks to read and critique each other’s work. Reading to Nita was an act of courage because she has not experienced the kind of challenges in her life I’ve had in mine. She never once judged me, even as I revealed shameful secrets. She told me, “I feel as though I’ve been chosen to hear your story.” I agreed, believing it was Divine guidance that brought us together. With her support, several drafts have been revised and now one is in the process of being polished. Thank you Universe!!
I struggled to find an ending because in some ways the circumstances in my story continue. And then a miracle emerged. In the process of writing and sharing my story with Nita, I began to perceive my life in a whole new way. Remaining vestiges of victim dropped away. Looking back at my younger self through more mature eyes, admiration for my determination to grow and my strength in persevering appeared. Listening with an open-heart as I read to Nita, compassion for what I was going through and forgiveness for my weaknesses surfaced.
And then one day a Grace-filled awakening came to pass. Gratitude for my pain flowed from my pen as I wrote in my journal. My eyes were opened to my difficult life being the context for my sacred journey and, as improbable as it seemed, to my challenging children being my spiritual teachers. Their trials gave me many opportunities to surrender and to learn to love in heart-wrenching circumstances. The ending, or in actuality the continuing, gifted me with an experience of the transformative power of memoir.
A memoir may always be retrospective, but the past is not where its action takes place.
Nuala O’Faolain