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.

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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.

And the Wisdom to Know the Difference

“Most of Jesus’ teachings are completely incomprehensible from a first-half-of-life perspective.”

 

Richard Rohr

In the first half of my life, I bristled whenever I heard The Serenity Prayer.

Niebuhr Serenity Prayer

Richard-Rohr_home-viewRohr points out that in the first-half-of-life, we have other developmental tasks to attend to and thus are unable to surrender and let go of the control we think we have to have to establish ourselves in life. (finding a spouse/job, making a name for ourselves, accumulating possessions) He also points out that we eventually have to let go so we can fall into our True Self–the best part of us that is always there but who we aren’t yet ready to meet.

I write in my memoir, A Long Awakening to Grace, about my experience of learning to let go and the awakening to grace that came when I truly surrendered. I was forty-two when I embarked on the path of letting go and fifty-seven when I awakened. It is embarrassing to admit that it took fifteen years. It is an indication of how deeply entrenched my illusion of control was. Today I understand that holding onto this illusion for so long has its roots in the inattention and negligence of my childhood. But there came a time in my life when this coping mechanism no longer worked. I needed a new strategy to survive.

My experience in the second-half-of-life is that surrendering is an on-going process. It is something I find myself needing to do over and over. When I am under stress, as I have been these past few weeks dealing with my daughter’s health crisis, I revert back to trying to seize control. Before long, the toll it takes on me and on my daughter finally wakes me up again to my need to let go and surrender.

Last evening I pondered this. Yesterday, when the home healthcare nurse heard crackles while listening to Nicole’s lungs, I pointed out that she hasn’t been using her spirometer as often as has been recommended. The nurse empathized with Nicole about people being on her case. This morning during her occupational therapist’s  (OT) visit, her oxygen level was low. It was recommended that when she first gets up in the morning, she may need to increase her level from one to two liters.

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To me, that means we are going backwards. Rehab had hoped she would be off oxygen during the day before she left their facility. They got her down to one liter. Now, it is needing to be increased for at least part of the day. I gave my daughter a little tough love this morning while in her presence I had a conversation with her OT about my caregiver role.

I asked, “How should I respond to this? Do I need to harangue her (control…stress on our relationship) OR do I need to accept that it isn’t important to my daughter to increase her chances of living longer by doing all that she can to strengthen her lungs which her disease is in the process of weakening.

The questions I ponder are: Do I need to accept that living longer isn’t her primary motivation? Do I need to let go? Do I need to surrender to the possibility I might outlive her? In the bigger picture, would that be a better outcome? I am her only family and her only support. How do I practice taking care of  myself as I experience the pain of watching her make self-destructive choices and the chaos of another possible healthcare crisis?

At forty-two, detaching with love became my challenge. Between forty-two and fifty-seven, I practiced disengaging from the chaos surrounding me and wasn’t always sure I was doing it with love. At fifty-seven, my most spiritual experience in life came when I succeeded in letting go with love and surrendering to a higher will. The gift of grace received at that time changed my life.

At almost seventy-four, I once again struggle with what actions and attitudes of mine constitute detaching with love and surrendering to a higher will. My True Self knows the answer. I must be quiet enough to hear the still small voice of wisdom within.

~ ~ ~

I just heard my daughter’s timer go off reminding her to use her spirometer. And I heard her using it. When the opportunity arose this morning to have that tough love conversation with her OT, I took it. I think that was my True Self’s wisdom.

8a35f-smiley2bsun2bfaceThank you, Universe!!

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.”

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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.

A Holy Pause

True personal growth is about transcending the part of you that is not okay and needs protection. ~Michael Singer

I set a goal at the beginning of 2015 to write one blog post a week. You have’t heard from me since April 21. In addition to moving my blog to my WordPress website, I’ve needed to take a “holy pause” to work on transcending a part of me that is not okay.

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Shame Demon strikes again.

In June 2014, I wrote about my Shame Demon battering me with harsh judgments after feedback received about my character at a workshop. In May 2015, I began receiving feedback from those agreeing to read my manuscript to help me improve my writing. One of them challenged me to dig deeper into my story and especially into my feelings and motivations surrounding myself as a mother. Once again the feelings of being inadequate and unworthy surfaced. My Shame Demon attempted to kill the meaning, purpose, joy and healing writing my memoir has given me.

Michael Singer is one of my favorite spiritual teachers. In his book, The Untethered Soul: the journey beyond yourself, he speaks of the roommate in our head–the mental voice that creates problems, makes us miserable, and never shuts up. Mine resembles that Shame Demon.

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Michael Singer

The Untethered Soul

 

While we would never listen to someone who says the bizarre things our “inner roommate” says, we allow this mental voice to ruin anything we’re doing in an instant. When caught in a shame spiral, our mental voice creates even more havoc than usual. Mine was running rampant. I considered letting go of moving forward with my memoir and further exposing my inadequacies. I thought about giving up on the idea of sharing my story with the world.

Just as I did in 2014, I withdrew into myself for a time, avoiding contact with others, the very action that feeds shame. And then a friend noticed. “You seem depressed,” she said.

I let her know a little of what “my roommate” was saying. She gave me a new perspective, a different voice to consider. Gradually, I opened up to more friends. Gentler perspectives than the harsh ones my “inner roommate”  offered came forth. Even on-line spiritual resources spoke to my situation.

This reminder of grace in the midst of our frailties:

“My grace is sufficient for you, for my power is made perfect in weakness.”  ~II Corinthians 9a

And days of wisdom from Richard Rohr’s Daily Meditations:

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~ Richard Rohr ~ Franciscan Priest

“Salvation isn’t about replacing our human nature with a fully divine nature, but growing within our very earthiness and embodiedness to live more and more in the ways of love and grace, so that it comes ‘naturally’ to us and is our deepest nature. This does not mean we are humanly or perfectly whole or psychologically unwounded, but it has to do with an objective identity in God that we can always call upon and return to without fail. Some doctrine of divinization is the basis for all reliable hope and any continual growth.”

“There are two major approaches to spirituality and conversion. We try to exclude and triumph over the negative parts, the shadow parts, the ‘inferior parts’ (I Cor. 12:22), as Paul calls them. This leads us to a kind of heroic spirituality based on willpower and the achievement of some sort of supposed perfection. But if you are honest, what you are really doing is pretending–and excluding the dark side that you do not want to look at, or the people you do not want to deal with. The way of Francis included and integrated the negative–forgiving and accepting the imperfection and woundedness of life. He agreed with Paul that the supposed inferior or weakest are, in fact, ‘the most indispensable.’ 

Salvation is not a divine transaction that takes place because you are morally perfect, but much more is an organic unfolding, a becoming who you already are, an inborn sympathy with and capacity for the very One who created you.”

“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

And so once more, I was given an opportunity to grow my shame resilience. I began accepting my weaknesses, looking for the doorway to the divine, and reminding myself of divine grace in the midst of all my life experiences. I moved forward.