Unexpected and Continuing Gifts of Grace

People often ask memoirists why we write the story of our life.  Writing is for me a spiritual practice — an exploration of the deepest terrain of my soul. I felt compelled to write my story. In the beginning stages, I couldn’t have told you why.

In my studies on the art of writing memoir, I learned of the importance of writing honestly about our shortcomings … of not glossing over our flaws and failings. I was determined to be as honest as possible. That meant facing head on a fear I had lived with from a young age … the fear that there was something wrong with me that made me unlikable and unlovable. You may remember that I kept Brene Brown’s book, Daring Greatly, in the book cubby above my writing desk.

At the end of eight years of writing A Long Awakening to Grace, I received a whole new perspective … my life finally made sense. The writing proved to be healing and transforming … an unexpected and welcome gift of grace.

Publishing what I wrote was another matter. I needed to let go of a coping mechanism I had used since childhood to avoid criticism … being quiet and invisible.

For many years as an adult, I hid. I cut myself off from old friends who would have wanted to know what was going on. I didn’t want to tell them.

Except for my twelve-step support system where it was safe to be open and vulnerable, I lived a double life. I avoided people and activities where I might need to reveal my life beyond the superficial. In my professional associations, I didn’t talk about the nitty gritty details of my personal life, even with colleagues I trusted.

Publishing my memoir was a big deal. In exposing my flaws and shortcomings to my readers, I risked the possibility of actualizing my childhood fear of being judged unlikable and unlovable. My editors even prepared me for such a possibility.

“Vulnerability is the birthplace of love, belonging, joy, courage, empathy, and creativity. It is the source of hope, empathy, accountability, and authenticity. If we want greater clarity in our purpose or deeper and more meaningful spiritual lives, vulnerability is the path.” ~Brene Brown

 

The truth of Brene Brown‘s words revealed itself in these comments from readers:

“…it took courage to be so open and vulnerable.”

“…your honesty and vulnerability shown through … You are a true hero in my eyes.”

“Your willingness to be vulnerable and open about your challenges and struggles and self-criticism leave me in awe.”

If there are readers out there judging me, they are keeping quiet. If and when judgment comes, these voices will override them:

“You memories have given me hope I can survive the past two devastating years.”

“…your sharing has given me strength and courage. …your brave vulnerability has been healing for me and I am extremely grateful.”

“Your story confronted me and gave me hope.”

“Your book will bless many people.”

 

More words of wisdom from Brene Brown:

“Courage is contagious. Every time we choose courage, we make everyone around us a little better and the world around us a little braver.” Brene Brown

And then last week, an awareness began to float to the surface of my consciousness. I’ve put it all out there … my worst stuff … for the world to see. I no longer need to hide. I’m truly free … another unexpected and welcome gift of grace.

Noticing

 

On Monday I had an opportunity to notice how I am being affected physically and mentally by the threats to the protections put in place after the 2008 financial crisis and to the Affordable Care Act. I can’t afford to lose what I lost in 2008. My daughter can’t afford to have another healthcare crisis if she is no longer covered by health insurance.

As a responsible person, a major focus in recent weeks has been consulting with financial and estate planning experts to once again make sure everything is in order. With my daughter’s changed circumstances … moving in with me and no longer being able to work and live independently … changes need to be made. As a single woman, I find it difficult to make these important decisions alone.

 

Spiritually, I know my daughter and I will be fine no matter what the future holds. I have experienced miraculous gifts of grace in the past, but as my memoir attests, my awakening tends to be long. And, it seems, I have been caught up in fear and dread again. I’ve been afraid to tap into my savings, including investing the money I’ve saved to publish my memoir. We might need it to deal with an emergency in the future.

During lunch with a friend on Monday, something had shifted. She is serving as a caregiver for her mother and is in a similar situation as I. She is single and needs to make decisions related to her mother in the same way I need to make decisions related to my daughter. She needed a listening ear. She said our conversation was very helpful.

And our conversation was helpful to me, too. It gave me an opportunity to notice a difference in myself. It was as though the light had burst through the dark clouds that had been hovering over me. I felt totally present to her, a contrast to my experience of myself in recent weeks.

My stomach has been tied in knots, I’ve lost sleep, and most noticeable to me, I’ve had difficulty with holding information in my mind and with word retrieval. But while listening and responding to my friend, I held onto what she shared and words I felt proud to utter and she found helpful flowed easily from my mouth.

And what could this difference be attributed to?

“But even the hairs of your head are all numbered. Fear  not, therefore; you are of more value than many sparrows.” ~Jesus of Nazareth in Matthew 10:30-31

Over the weekend, I received a gift of grace. Just a reminder that I am really not alone and that I never know who will show up and offer just what I need at just the right moment. I felt as though a weight had been lifted from my shoulders. And what a difference it makes in the way I move through life … in the way I was able to respond to  my friend.

I can let go of all the fear and dread because my daughter and I are being cared for and carried by a power greater than our own.

Thank you, Universe, I needed that reminder. As You know, I learn best through experience.

🙂

 

Merriam-Webster Happiness

The question at the end of my last post: What words come to mind when you hear the word “happiness?”

Pat wrote: Peace

According to Merriam-Webster, happiness is the state of being happy.  Don’t you just love definitions like that?!?

Happy is followed by a very long enumeration of synonyms:

  • cheerful, cheery, merry
  • joyful, jovial, jolly, jocular, joyous, jubilant, overjoyed
  • thrilled, elated, exhilarated, ecstatic, euphoric, exultant
  • buoyant, radiant, rapturous
  • gleeful, delighted, blissful, blithe, beatific, sunny
  • pleased, satisfied, contented, gratified
  • carefree, untroubled, lighthearted

Interesting that “peace” is not among them.

A happy person is described as being in good spirits … in a good mood.

Happy people are:

  • smiling, beaming, grinning,
  • in seventh heaven, on cloud nine, walking on air,
  • jumping for joy, tickled pink, happy as a clam,
  • over the moon, on top of the world.

It was Merriam-Webster’s description of “happy” that influenced me as I contemplated writing my essay on “happiness” for my writing group.

It is a rare occasion for any of Merriam-Webster’s words to describe me. I am an introvert and we are notorious for our discomfort in jubilant, jumping for joy crowds. A quiet evening at home holds more attraction than a room full of merry, exhilarated party-goers.

My “awkwardness” insecurity rose to the surface. Where do so serious-natured introverts fit into the “central mandate of the American character” to pursue happiness by doing the “Next Big Thing?”

How to write about “happiness?” I mulled that over for a couple of weeks, and then I was saved. A television program featured a segment on the 2017 World Happiness Report.

Aha! I had a way into the topic! Much less threatening to write about a country’s happiness than about my own or lack thereof. And my research project began.


What feelings are generated in you when you read Merriam-Webster’s list of synonyms for “happy?”

How would you approach writing about the topic of “happiness?”

Carol suggested highlighting the unexpected benefits pointed out by Shawn Achor, happiness researcher and author. Now there’s a guy who pursues happiness!

Not a bad idea, Carol. Why didn’t I think of that? Must have been that “awkwardness” brain fog. 

 

Rare Resilience

“Before enlightenment, chop wood and carry water. After enlightenment, chop wood and carry water.” ~Zen Proverb

My experience at the Myotonic Dystrophy Conference on Saturday, October 22, reminded me of this Zen proverb. The morning was full of hope as the doctors and researchers enlightened us about the progress they are making. In their work, they chop wood and carry water looking for a cure. Their excitement is contagious as they move closer to their goal.

Then in the afternoon family sharing group, I experienced almost immediate discouragement as we began to share our experiences of chopping wood and carrying water. While we wait and hope for a cure, we deal with many frustrating day-to-day challenges caring for our loved ones.

kathleen-cain-facilitating-faminly-support-group

family-support-at-dm-conference

shields-family-at-dm-conference

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

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

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

Fear surfaced related to current challenges Nicole and I face:

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

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

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

Pam Speer Lewis, MDF Project Development Manager

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

care-cure-bracelet

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

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

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

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

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

dm-image

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

Missing the Mark

In the original languages (Aramaic, Hebrew, Greek), the word “sin” means “missing the mark.” In my last post written almost two months ago, I spoke of setting an intention to extend loving kindness to my daughter as she faced her health crisis. She moved into my home on June 16, almost two weeks ago. During these two weeks, especially the first week, I missed the mark. I was not at my best. This hospitalization has turned my daughter’s life upside down and, by extension, my life as well.

Her surgery was postponed for two days and she was in ICU a total of nine days before being sent to rehab. While she was in ICU, she experienced ICU psychosis. After the fact, they told us it is common. Wish they would have forewarned me. Seeing her in full-blown paranoia, convinced they were trying to kill her and if I didn’t help her get out of there, I was in league with them was scary. It is hard enough dealing with her myotonic muscular dystrophy. I feared I would be dealing with mental illness as well.

Then after ten days in rehab, she developed pneumonia and was hospitalized for another week before being sent back to rehab where they hoped to wean her off oxygen. They did not succeed and on June 16 she moved in with me. The week before her discharge, exhaustion turned me into a zombie. I couldn’t think straight, I took long naps even though I had slept soundly the night before. I dragged myself day after day doing the next right thing.

I was apprehensive about her coming to live with me. My home is my sanctuary, where I recharge myself with solitude, silence, order, and beauty. She does not share my values and her disease prevents her from maintaining the aesthetics I require. She has lived with me as an adult before, and it didn’t work well for either of us.

window

In addition, I was nervous because I am not a nurse or a trained caregiver.  I felt overwhelmed as people descended on my home with oxygen tanks, compressors, concentrators, and the bi-pap machine she will need to use while sleeping for the rest of her life. They explained how to use it all, but I couldn’t take it all in. They gave us manuals and said we could call if needed. We needed and, thankfully, they were very accommodating.

oxygen tank
BPAP-466x350

In the midst of all this, I was faced with the task of moving her out of her apartment. Cell phone pictures helped her make decisions about what to keep and what to give away or discard. I don’t know how she managed the steps for these ten years while her disease progressed and her muscles weakened. It was all I could do to navigate up and down those steps carrying out trash and stuff to my home for her to sort through. One day I could barely carry a heavy trash bag up a flight of stairs and down another as I made my way to the dumpster. When I got there, the dumpster was filled to the brim with branches from the yard work being done. The side door was blocked. I took a step back and heaved that bag with all my might and it went flying into the top of the dumpster. I marveled at my muscle strength. Not bad for an old broad.

My daughter’s first week in my home was an adjustment for both of us. In the midst of all the anxiety, it took every ounce of energy I possessed to deal with all the changes. I grieved the loss of my privacy in the sanctuary of my lovely new home, the loss of my solitude and silence.

I disappointed myself more than once as irritation and frustration crushed my intention to extend the loving kindness she deserves. I couldn’t summon the energy for my spiritual practice. Maintaining serenity and equanimity in the face of this stress escaped me. I was sorely missing the mark. The vicious voice in my head lashed me with the discrepancy between the kind of person I aspire to be and the kind of person I was actually being. In this state, my whole life looked like a sham.

As I sat in my meditation room this morning, the best part of me (my true self within who witnesses my thoughts and actions and knows that is not who I really am) took stock of the way I’m handling this very difficult situation. Even though this week has been much better, I wondered if I needed an anti-depressant to help me deal more effectively. And then the telephone rang and I received a gift from the Universe. I recognized it immediately as a gift of grace.

Facing My Fear of Conflict

“When you’re scared, you stay as you are.” ~Stephen Richards, author of Releasing You From Fear

turbulent water

Our world is turbulent. As I write this, we’ve just experienced the worst terrorist attack on U.S. soil since 9/11. Fourteen people lost their lives. Fourteen families lost loved ones during our holyday season. A six-month-old infant lost her parents. My fear of conflict pales in comparison to what these people and many others in our world face on a daily basis. And this is the opportunity that came my way while rehabbing my new home–something I set an intention to do with joy and equanimity.

I hired a contractor and then found it necessary to fire him because the work his employee was doing was shoddy. He was using equipment that didn’t operate well. When I told him I’d hired someone else to finish the job, he threatened to put a lien on my house or take me to court. I paid him what I thought was fair for the work that had been done satisfactorily. He wanted more. His threats escalated.

screenbean-scared

Conflict scares me so much that sometimes my teeth chatter as though I’m in a deep freeze. I recognize this as a disability because conflict is a part of life. Trying to avoid it as I do often has negative consequences. So I told myself, “Going to court my be an interesting new experience.” I reached out to friends for support.

They gave me good advice. “Make a record of all transactions, take pictures, and stand your ground.” They pointed out I had a good case and he was unlikely to follow through. But his intimidating texts continued. He pointed out how much it would cost to go to court. My hands began to shake, my stomach tied up in knots, I couldn’t go to sleep or I’d wake up in the middle of the night unable to fall back asleep.

To soothe myself, I’d say, “Linda, this is just your fear of conflict. You aren’t going to die and you’re not going bankrupt.”

I texted him back about mediation being a less expensive option. He liked that idea and asked me to set it up. I chuckled at that and texted him back, “If that’s the route you want to take, you set it up.” My friends and I didn’t think he would, but he did.

For me, it wasn’t so much about the money as it was maintaining my self-respect. I didn’t want to give in to intimidation. I needed to pull on my inner strength. I didn’t want to give this contractor the message he could get away with bullying women.

The woman from the mediation center told me I might hear something new in our facilitated conversation that would change my perspective, so I put my checkbook in my purse just in case.

However, the new information seemed to support my position. He’d fired his employee and admitted he’d been lied to about the job. He also said I’d been nice whereas other people he’s dealt with have been nasty. He offered to drop the whole thing if I paid him $200 instead of the $300 he’d asked for. It was tempting to accept just to be done with this.

When I didn’t accept, he returned to his intimidating tactics, noting it was time for him to learn how the small claims court system works. He asked the mediator for directions to the court building and left in a huff.

screenbean-mad

I went out to lunch with my friend who accompanied me for support. Despite being distracted by fear and uneasiness, we had a lovely afternoon.

The next morning another friend called to share her experience reporting a contractor to the Better Business Bureau. She encouraged me to do the same. I hated the thought of my complaint appearing on a webpage for all to see. Even though uncomfortable with her suggestion, I went to the BBB webpage to check out the procedure. When I read they wouldn’t be involved if there was litigation, I decided if I was going to do it, now was the time.

Early the next morning, the contractor began texting and calling. Interpreting this as more intimidation, my hands shook and my heart pounded. With a friend’s encouragement, I returned his call. He said, “Let’s drop this. Lesson learned. I see where you’re coming from.”

I asked him what he was able to see now that he couldn’t see in the mediation. He admitted his employee, whom he had trusted, used poor equipment and he understood why I hired someone else to finish the job. Perhaps seeing my complaint in writing did the trick.

This experience helped me grow in my ability to handle conflict and intimidation. I stood up to bullying…with a lot of help from my friends. For that I am grateful.

beans conquering

I can’t help but wonder for what bigger conflict this is preparing me.

If you tend to avoid conflict, I’d love to hear how you’ve learned to handle your discomfort. I’m sure I have more to learn.