Tag: Acceptance

The Greatest Love of All

Family, Love, Personal Growth, Spiritual Growth

Photo by Rick Guidotti of Positive Exposure

“Nicole is lucky to have you for a mother. You show her great love.”

These are words I frequently hear from those who know the lengths to which I go to find resources for her. I see this as my responsibility. I know it is a loving action, but I have the skills to do it and the only thing hard about it is finding the time to follow the leads and dealing with the disappointment of blind alleys and insufficient assistance and services.

Showing her love is something different in my book. Love is changed behavior and is, to my way of seeing, a powerful demonstration of love. It takes much more conscious effort. And it forces me to grow.

Nicole and I have both been showing our love by changing our behavior since she moved in with me a little over a year ago. After she reached adulthood, we tried living together before, and it didn’t work well. This time, we are both growing.

To ease the transition, I suggested we be intentional about giving each other a hug before going to bed at night. Expressing our love by hugging and expressing terms of endearment greatly reduced the tension in the air. It took about five months for us to begin to relax into a routine with each other that seems to be working for both of us.

Behavior I have changed:

  • I’m not as fussy about my home being neat and tidy.
  • I’ve stopped (except for a recent slip — I’m not perfect) screaming, yelling, and stomping when I’m frustrated or scared.
  • I take into consideration her preferences.
  • I watch TV programs she enjoys even though they are not my first choice and I wouldn’t normally give them the time of day.
  • I say “thank you” a lot more frequently.
  • I accept much more graciously what I cannot change about the way her disease affects her behavior.
  • When our needs clash, I engage her in problem solving to find a solution that works for both of us.

Behavior I’ve noticed that Nicole has changed:

  • She’s less messy around the house.
  • She’s forthright in her dislike of my frustrated/scared behavior.
  • She watches some TV programs I enjoy even though she finds them boring.
  • She initiates and takes responsibility for household chores without being reminded. (I really like it that she has taken responsibility to clean up the kitchen after I cook.)
  • She kids with me about my quirks.
  • She respects my need for silence and uses her headphones when I’m writing, meditating, or reflecting.

I know Nicole would rather live independently and I would prefer that, too. But that is not likely to be possible anytime soon. So, in the interim, we show our love through changed behavior. In my book, that’s the greatest love of all. And this is not what I set out to write today. Interesting.

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You Make Sense to Me — A Priceless Gift

Community

Oprah Winfrey often says that what she learned in her twenty-five years as a talk-show host is that people want the same thing — we want to be heard and understood … we want to know that we make sense to someone.

In my past life (1993-2012), one of the many professional hats I wore was as an Imago Relationship Therapist. Imago Therapists teach couples a listening skill that goes beyond active listening (repeating what you hear the other saying) to seeing the world through the other person’s eyes and telling them how they make sense given their life experience, and then walking in their shoes by telling them what you imagine they must be feeling as a result. None of this requires agreeing with how they see the world or having their feelings. It just asks us to suspend our own judgments and experiences to be in the world of the other.

And it is not easy as our polarized world attests.

For couples in troubled relationships, using that process skillfully can transform their relationship. Often, the assistance of a compassionate therapist is needed to help get and stay on track.

During the time I was an active member of the Imago community, one of the highlights I enjoyed was attending the annual conference, visiting another area of our country, and re-connecting with colleagues who had become friends.

One year, probably before 9/11, our conference was held in Albuquerque, New Mexico. I decided to stay an extra day, rented a car, and planned a trip to the Acoma Pueblo Sky City, located on top of a mesa about sixty miles west of Albuquerque. A colleague from Houston, Texas, Damian Duplechain, heard about my plans and asked if he could join me. I didn’t know Damian at the time, but welcomed his company.

Damian and I had a lot of time to get to know each other that day. We found we had some experiences in common beyond being Imago Relationship Therapists. We each had addiction in our family backgrounds and found twelve-step spirituality, The Spirituality of Imperfection, to be a healing force in our lives. After this trip, we went back home and had little contact after that beyond a few e-mails.

In 2009, I developed lymphoma. I was diagnosed on the Friday before Memorial Day weekend, was sent directly to the urban hub of the hospital, and talked into staying the weekend. If I had to do it over, I would not have stayed the weekend, but that is another story. The word went out to the Imago community about my situation and colleagues from around the world began praying for me.

That weekend, I received a phone call from Damian. What a shock. He wanted me to know about M.D. Anderson Cancer Center in Houston. He told me about a friend who had traveled a distance to be treated there. He said that if I wasn’t happy with the treatment I was getting in Dayton, OH, to give him a call and he would make all the arrangements for me to come to Houston for treatment. I doubt that you can imagine how touched I was by that. It told me even more about what an extraordinarily caring person Damian is. And it told me how fortunate I was to have so many wonderful friends extending love to me. Despite his generous offer, I didn’t find it necessary to seek treatment outside Dayton. I have been in remission since December 2009.

Eventually, I stopped participating in Imago conferences, opting to attend workshops and gatherings with my Imago friends in the Detroit, MI area. At one point, I contacted Damian about sending him a referral. But other than that, we had little contact for several years until Monday of this week.

Unbeknownst to me, Damian has been following my blog and has made a few comments. Since I didn’t receive them, I didn’t respond. He thought that was strange, checked my webpage, didn’t find his comments, and wondered if it was a cyber gremlin at work or if he had offended me in some way. He sent me an e-mail and stated that if he had offended me, he wanted to offer his deepest apology and state his willingness to hear my hurt.

I was floored. I doubt you can imagine how deeply touched I was. I find it a rare experience to have someone care that much about my feelings that they would send me an e-mail to inquire if I had been hurt and express a willingness to listen, if needed. I couldn’t have received a better gift.

My daughter who lives with me has a condition that blunts her emotions. She gets very uncomfortable when I express mine. So at home, I mostly keep them to myself. I often go for long stretches of time with no one inquiring about or listening to my feelings. And I am a feeler … on the Myer’s Briggs Personality Type Indicator, I am an

INFJ.

I have a rich inner life full of feelings, and I experience myself as most cared about when someone is interested in hearing me express them. To me, my feelings are the best, most authentic, part of me. Sometimes they get in the way, but they get out of the way faster when I can talk about them with some one who cares and understands … someone who is willing to stretch to see how they make sense to me.

As a single person living with someone not attuned to feelings, I often write about them in my blog. It is an exercise in vulnerability, and often after posting I wonder if I should have pressed that “publish key.” That uneasy feeling stays with me … until I get a comment.

Comments are important to me and I appreciate every one. They help me know if I am on the right track … if I make sense … if I say something of value for someone else. Sometimes they help me clarify my thoughts on a topic. I want my blog to be more than a self-centered exercise.

After assuring Damian that I didn’t get his comments, my curiosity was piqued. Actually, I found his comment in the spam folder. But I’m glad I didn’t find it until after writing this post. You will  see why in a moment. I wondered, “What could he have said that might have offended me?” I wrote and asked him. Here is his response:

“My comments could be summed up as: You are a wise woman who makes total sense to me, and I appreciate your blog and you because they are both wonderful gifts to me and to the world.  Keep up the great work.”

WOW!! I think I’ll keep writing. 🙂

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Rare Resilience

Community, Family, Groups, Life, Love, Uncategorized

“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.

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The Wisdom of the Body

Personal Growth, Spiritual Growth

“The body remembers, the bones remember, the joints remember, even the little finger remembers. Memory is lodged in pictures and feelings in the cells themselves. Like a sponge filled with water, anywhere the flesh is pressed, wrung, even touched lightly, a memory may flow out in a stream. ~Clarissa Pinkola Estes

For much of my early life, I neglected my body, largely unaware of the wisdom it carried. In the mid-80’s, I participated in Anne Wilson Schaef’s Living-in-Process training program. It was in her training that I began to appreciate the memories our bodies carry and the message that emerges when its wisdom is released. My first powerful body memory emerged after a massage. I was stunned and in awe of the process and the healing message my body spoke. On another occasion, my favorite during my six years in the Living Process network, my body gave me a sense of my cleanliness as a newborn before the wounds of life scarred me.

During the past few weeks as my daughter has moved in with me and my life has revolved around being a full-time caregiver, I’ve had a couple of body experiences that have piqued my interest. Without being fully aware that I was searching for my body’s wisdom, I followed the trail of my roller coaster of emotions.

Roller Coaster

The first experience came after my former student called to tell me the influence I had on her life. Before her call, I was contemplating the need to be on an anti-depressant. I had no energy or interest in things that had filled my life with meaning and purpose. After her call, I literally experienced the energy of aliveness returning to my body. I wrote and spoke about it as being the best anti-depressant ever and considered her call a Divine gift.

 “After all, the body, like God, moves in mysterious ways.” ~Thrity Umrigar

spiral galaxy

But in the couple of weeks since her call, gradually, without my being aware, the energy began draining from my body again. On Tuesday I walked around the house in a stupor, unable to write or accomplish any of the many household tasks needing attention. I was grateful for leftovers so I wouldn’t have to cook. Even watering my plants, something I have enjoyed, seemed like drudgery. Every time it rained, I thanked “Mother Nature” for doing this job for me. Impatience and weariness with life seeped into every fiber of my being. Sleep seemed my only escape.

On Wednesday, despite my lethargy, I continued the footwork to find housing, financial assistance, and case management services for my daughter. I dipped even lower when promising options failed to bear fruit. I told myself that I needed to reengage in previous activities I had enjoyed. I developed a self-care plan but couldn’t get myself out of the house. “I’ll start tomorrow.”

Then, Thursday morning, after some mix-ups preventing the home healthcare social worker from connecting with us had been resolved, she finally paid us a visit. This woman had worked in the case management arena in the past and seemed to know the ropes. She corrected misinformation given to  me the day before, had an application with her to get the ball rolling, explained the slowness of the process, validated the footwork I’d already done, encouraged me to fill out applications for several housing options for the disabled, and to schedule an appointment to tour one of them as soon as possible.

pressure cooker

The pressure cooker building inside me began to release steam. I was unaware of the weight I carried until I couldn’t control the tears springing forth at the end of our appointment. With her concrete actions, validation, and empathy…even though it will take months to accomplish the next steps…I once again had hope.

And once again, I noticed the energy of aliveness returning to my body. I made that call as soon as she left and scheduled an appointment for next Tuesday for my daughter and me to tour the facility. And I attended to one activity on my self-care plan.

“Food for the body is not enough. There must be food for the soul.”   ~Dorothy Day

I wondered about that second energy drain. Did something specific trigger it? Gradually the pieces began to fall into place.

I had been hurt by my daughter’s disinterest in something important to me, her passivity in engaging in conversation about it. I pondered why I was holding onto this hurt. As I sorted through papers about the characteristics of myotonic muscular dystrophy, organizing them for my daughter’s file, I read again about the aspect of the disease that I’ve had the most difficulty dealing with…the executive function deficits.

  • The apathy that leaves me as the initiator and puts me in the position of being the “bad guy.”
  • The avoidant personality that leaves my daughter with no friends…her preference for imaginary relationships with celebrity personalities to relating to a real person…leaving me as her sole support and subjects me to the worst kind of loneliness…living with someone who is not really present.
  • The lack of expression (weakening facial muscles) that appears, in the words  of one pamphlet, “as though they don’t care.”

There it was. Once more I was living with someone who “appears not to care.” I had done that for at least a third of my life, probably two thirds. My body carries the memories of the emotional trauma that saps my energy.

“Muscle has memory: The body knows things the mind will not admit.” ~Louise Doughty

I promised myself twenty-seven years ago that I would never do that again. But here I am once more. While I fulfill this responsibility to my daughter, my body would not let me neglect its wisdom. It dragged me down and niggled at me until I found the source of the burden I carried…the trauma of twenty-three to forty-seven years of emotional neglect.

Now that I know, now that my body has brought me to consciousness, I am living with “what is” with more ease. I still don’t like it, but I can better comfort and take care of myself during this difficult time. For my body’s wisdom, I am genuinely grateful.

female body yoga

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And the Wisdom to Know the Difference

Life, Spiritual Growth

“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.

incentive-spirometer

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!!

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You Are Accepted…How Sweet The Sound

Spiritual Growth
Paul Tillich quote
Recently Elizabeth Gilbert, author of the celebrated memoir, Eat, Pray, Love, posted this Paul Tillich quote on Facebook. I added it to my page noting that the reason my memoir, A Long Awakening to Grace, has that title is because it took me so long to experience this truth.

 

Elizabeth Gilbert

Elizabeth Gilbert

 
Patricia Hollinger’s poem, Amazing Grace, appeared in True Words from Real Women, a Story Circle journal of short pieces of life-writing by SCN members. The topic for the September issue was grace. Patricia gave me permission to share her poem with you.
Amazing Grace
 
                      Amazing Grace, how sweet the sound…
                                Just hearing the tune makes many a heart pound.
                                That saved a wretch like me!
                                Is what follows and causes me to plea.
                                I was NOT a wretch, “Damnit,” I said,
                                From such words I often fled.
                                With religious angst and major depression,
                                These words reinforced a negative impression.
                                I changed the word wretch to a soul like me,
                                After hours and hours of therapy.
                                Yes, I was lost in the throes of religious zealots,
                                Their words often stung me like BB pellets.
                                Now I am found in the truth of my soul,
                                Seeking this became my ultimate goal.
                                My eyes had been blinded for many years,
                                As I heard sermons designed to elicit fears.
                                “Tis the grace of the presence of a listening ear,
                                As I poured out my hopes and fears,
                               That brought me home to my true self,
                               Never again in fear will I sit on a shelf.

 

Patricia Ropp Hollinger
 
Dichotomy: Intellect & Soul
I could relate to Patricia’s blindness, having been blinded to grace myself for some of the very same reasons. While I didn’t intellectually take in the dogma, the words in the liturgy and music about sin and unworthiness found their way into my psyche, making my already difficult life circumstances even more grueling.
 
Thankfully, the preaching in my progressive denomination, often influenced by Paul Tillich’s theology, leans more toward emphasizing the love of the Divine. My own preaching certainly did. Still, like Patricia, I needed to pour out hopes and fears to compassionate listening ears. Much of my struggle in A Long Awakening to Grace is related to the confusing dichotomy between my intellect and my soul.
Graced with a Miracle: Radical Acceptance
 
And then, not so very long ago, a miracle happened. Another layer of numb gave way, awakening me to grace at a deeper level than I ever imagined possible. My eyes were opened to my wretchedness and at the same time to my loveableness. From this new vantage point, I could embrace the mixture we all seem to be…I could appreciate as never before our human journey of coming into consciousness of the divinity at our center.
 
With this radical acceptance of my humanness and my divinity, the dis-ease engendered by fear of condemnation, the stigma of guilt, and the decree of unworthiness has been tempered considerably. Their shadows continue to creep into my psyche from time to time. But awareness frees me to soulfully sing, Amazing Grace, how sweet the sound.

…remember that to be in grace means to submit to the voice greater.
Clarissa Pinkola Estés
Clarissa Pinkola Estés
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