Category Archives: Personal Stories

Thank You Sheryl

Sandberg2016-05-16t12-09-26-766z--1280x720.nbcnews-ux-1080-600Stalled at the Pittsburgh airport while the airline tried to locate a part for our plane last week, I had time to peruse the magazine racks. And there it was, on the cover of Time magazine, Sheryl Sandberg’s image and the message, “Let’s talk about grief.”

YES, I said enthusiastically to myself, inhibiting the desire to make a fist in the air and bring it down in a firm gesture of agreement, like the ringing of a chime. It’s about time we spoke out loud the name of the elephant that is in the middle of our social gathering places – our offices, churches, ladies luncheons, schools, and corporate conferences. Anywhere we gather, at least half of us are most likely in the middle of experiencing a major loss and yet a conspiracy of silence keeps us isolated from getting and giving the support we need.

I learned about this when I lost my 31 year old son to AIDS and later, my 42 year old daughter to breast cancer. Being a therapist I decided to write a book about our family’s experiences and the role that support from our community played in our handling these challenges. https://www.youtube.com/watch?v=y12Wj06_nAI

My hope was that writing and talking about what we experienced would help me and reading our stories would help others deal with their losses. I developed a format to “Perform The Book,” getting help from my improv troupe, as we used the expressive arts to join the particulars of their stories to mine. This experience was most satisfying and rewarding for me, those who chose to participate, and audience members. But it was noteworthy how many people declined our invitations.

The taboo about hiding the pain of loss seems to stay firmly in place not only in relation to death and the loss of a loved one, but operates when a family member loses a job or goes to jail, gets a cancer diagnosis, or when we ourselves deal with pain or infirmity. In short – whenever we suspect that our current life situation might be considered a “downer” for someone else.

On the other side of the equation, when we know someone is going through grief we often fear saying something that might make their pain worse. Once when my son was seriously ill in the hospital my sister-in-law asked about him and I began to tear up as I talked about the situation. “Oh dear. Now I’ve made you cry,” she said. I had to explain that she didn’t make me cry. ” By asking about my son, and listening to my answer, she allowed me to have a few moments when I was not pretended that everything was “fine. She let me know that she cared and gave me the opportunity to share my concerns and sorrow with her.

Hopefully through Sheryl’s courage in writing her book, https://www.recode.net/2016/7/29/12320222/sheryl-sandberg-leans-into-next-book-option-b-about-grieving-and-healing about the sudden loss of her husband, and the well-funded promotion of her platform, more of us can be there for one another through the tough and tender times, becoming stronger from dealing with our adversities.

Happy Merry Us

happy-holidaysWhen I googled “Holiday Stress” this morning, I got 7 million, 500 thousand items. Top picks were articles and blogs attempting to help people manage their holiday stress. As an expert on dealing with tough stuff, I feel obliged to jump into the fray of suggestions for surviving and thriving this holiday season.

Let’s first look at the stress we create for ourselves.

  • What about the big deal hassles over the proper way to wish a friend a happy winter holiday? In an effort to be inclusive of all citizens, the White House has sent Happy Holiday cards for the past 8 years. Some Christians take that as an insult, as a “war on Christmas.” Some Jewish people have their own issues on greetings at the holidays. Coming out of my health club yesterday I overheard a couple of Jewish women ridiculing a non-Jewish woman’s mispronunciation of Hanukkah, or Chanukan. (For those who don’t know, to pronounce either word correctly, a soft guttural clearing of the throat needs to precede the H or C.) And this matters why?
  • How come we expect our holiday season to always and continuously, be happy? This unrealistic obligation pumps pressure into all our activities; In searching for just the right gifts, planning decorations and menu items we’ve seen in magazines, addressing holiday cards to business contacts that reflect our brands, and writing an annual letter to friends and family recounting all the happy successes of the past year.

Meanwhile in the real word – life continues as usual – people get sick, family members disagree, loved ones die, accidents happen, and bad weather delays travel plans. Instead of blaming ourselves, one another, or the gods, for this unexpected bad timing –

How about…

1) Lowering our expectations, it’s just a fleeting season of the year

2) Calling on helpers, both seen and unseen, while reaching out to help others

3) Saying yes to whatever cannot be avoided and asking ourselves “what good can come from this?

4) Continuing the radical self care practices that have kept us sane and healthy throughout the rest of the year  

5) Honoring those no longer with us by sharing stories of when they were here, or giving a gift in their name to a charity or cause they believed in

6) Connecting with previous experiences of peace, joy and love and bringing them into the present moments of this particular holiday season.

Allow me to wish you a blessed holiday season and a peaceful,  joy-filled New Year.

 

Love Sweet Love

What the world needs now is love,” lyrics Hal David, music Burt Bacharach

1-jyoti-black-hatI’m in the shower, preparing to attend a celebration of the life of one of my dearest long time friends, Jyoti King. The first lines of this song come to me….”love sweet love. It’s the only thing that there’s still too little of.” I guess it would be natural to think that the world has less love now that Jyoti’s left it, but the event organized by her husband Randall last Sunday, involving 60 or so friends and family members, taught me otherwise.

We gathered in an upper room of a restaurant in downtown Fort Worth Texas, and read Jyoti’s poems and other writings out loud for nearly three hours. Taking turns we added our own stories of Jyoti, whose life has meant so much to each of us these past 30 years. I spoke of my vast personal indebtedness by quoting one of my favorite African sayings, “I am because she is.”

Jyoti and Randall were midwives for Rich and I, for the behavioral health clinic we co-founded and directed, “Iatreia Institute for the Healing Arts. Jyoti was clinic manager for most of its ten years. She helped edit my first book, Stillpoint: The Dance of Selfcaring, Selfhealing, a playbook for people who do caring work. She left the clinic briefly to pursue her writing, but when my youngest son was diagnosed with AIDS, she returned to support me. When a year to the day later, her son was diagnosed with AIDS, we wept together, fearing we’d taken this sister bond too far.

When my friend Rose asked me to come and be with her as she was dying, Jyoti, a former childbirth midwife, encouraged me. “It’s in the coming in and the going out that there is the most light, when the veil between the worlds is lifted. It’s an honor and a privilege to be present at both occasions.”

Jyoti’s exit was one of the long, long, goodbyes that people diagnosed with Alzheimer’s and their family members endure. She and her husband and friends lived this journey for 12 years, before her death last month. There were many stories of lessons Jyoti taught before she got sick. Her son, whose ‘s been sober for 25 years now, told how no matter his mistakes, his mother always forgave him. When he had to go to prison Jyoti washed his feet to protect him. “She told me, keep remembering, you are just a visitor there.”

I shared some of the gifts Jyoti gave me during the course of her disease. Shortly after she was diagnosed I moved to Pittsburgh but I traveled back to Texas often. I always visited her, first in her home and then in the memory care center. Each trip on the plane I would caution myself, “She may not know you this time. Get ready for that.” But, though she eventually lost most verbal language, she always knew who I was. Perhaps better than I did.

Once we walked together in the garden of her home when she was still living there. I noted that she felt unsteady on her feet. Her once good coordination would flounder and she’s grab my hand going down stairs or on the uneven path. Having been a nurse, when she entered the memory care center, she saw herself as a nursing assistant, always looking out for the other residents. A film aficionada, she advised a staff member on movies the community would enjoy. On one visit she brought out a musical instrument, and played and chanting for me.

sheila-and-jyoti-2When my second book was in manuscript form, I brought it with me on a visit. I told her I knew she wouldn’t be able to help me with this book as she had the first one. “But I’d like you to bless it,” I said as I placed the binder in her lap. There were no words, but she took the binder and gently hugged it to her heart. She smiled and we both knew we were doing a ceremony.

On what turned out to be our last visit, I found her in the parlor of the memory care center alongside other residents. They were all seated before a television displaying a blank screen. She was rocking in a rocking chair and coming closer, I heard her singing to herself. I couldn’t identify the song but it was clearly a Texas boot-scooting two- step.

Let Me Read It To You

My then 20s something daughter said it best. “The main problem for my mother is that she has always been ahead of her time.” She supported this assertion with the statement that her mother had used what was then called “natural childbirth” when she was born. She added that her friends, who were just beginning to learn that taking drugs during labor might not be advisable, couldn’t believe her mother had acted on that so many years before.

Perhaps creative people have always had this problem but in the present era’s ubiquitous focus on branding, the timing and seeming appropriateness of an idea or project seems to have become even more critical. Being seen as a trendsetter is of value, but it’s not advisable to get too far ahead of where most of the herd are grazing. So recently I’ve been paying special attention not only to what’s emerging in my creative consciousness, but also to what’s happening in the larger culture, hoping for some possible connections during my lifetime.

Here’s the way my creative process works. Like most people, I get a lot of ideas, but every now and then, one idea won’t leave me alone. It continues to emerge and reemerge in spite of my efforts to question the advisability of acting upon it. Take for example the idea of writing a book. I wrote a book that I started with a co-author in 1985 and my version was finally published with me as the sole author in 1992. The process was so grueling that I told myself I would never write another book.

The idea to write another book came to me sometime in 2006, but it had to keep competing with the part of me that had taken that vow of “never writing another book.” I’m happy to say that the process of writing the second book was much more grace-filled and enjoyable than the first, but it did take, just as the first book had taken, seven years to become a reality. So perhaps our reticence to act on our inspirations exists to protect us from all the years of work that will be required to go from idea to reality.

Closet StudioSo here I am again, about to act on one of my ideas, to “ground my vision in reality, “as Anna Halrpin would say. Almost from the beginning of working on my second book I thought about the idea of creating an audio book version where I would read to my “readers”, making the book available for people to listen in their cars, or on their mp3 players while they worked out in their gym or garden. In the ensuing years, this idea has grown into a passionate desire.

Since Warrior Mother was published by She Writes Press in 2013, I’ve been Performing the Book, around the country and internationally, reading passages from the book while improvisational InterPlay performers respond with stories from their own lives. This idea, conceived as a way to get the word out about my book, has been most satisfying for me, and I believe for the participants who have performed or witnessed it.

All this practice in reading sections of my book out loud has given me the confidence to hire a sound engineer to help me create a sound studio in my closet and read and record the entire book for an Audio version of Warrior Mother.

Those inner voices of reticence and dissent have been making quite a ruckus lately as I prepare to act on what is now a burning desire. But all that became silenced this morning when I read Wyatt Mason’s article, Audio Books Read By the Author in the New York Times. http://www.nytimes.com/2016/07/17/magazine/letter-of-recommendation-audiobooks-read-by-the-author.html?_r=0

Mason begins by extolling the virtues of poets reading their own work but then he says, “I would extend Rilke’s idea beyond poetry to prose. Because in prose, the author’s voice is even more essential to making the text not only intelligible but also meaningful.”

As I enter my sound chamber/closet to begin production of my audio book tomorrow, I take this as encouragement from the universe that this project will be both timely and relevant, and serve the purposes for which I intend it. Stay Tuned.

Las Vegas Happened To Me Twice

Last week Rich and I got up at 4 am to make a direct flight to Las Vegas, one of my least favorite destinations. If you don’t count stops at the Vegas airport on the way to somewhere else, I’d only been to Vegas twice before. In 1992, my in-laws took the family there to help celebrate their 50th wedding anniversary. I remember the kids sneaking onto the casino floor with Grandma Pearl hoping to learn how to be as lucky as she was at playing the slot machines. 

My initial time in Las Vegas was half a century ago in the glory days of the Rat Pack, when I wasn’t old enough to drink legally. I lived in Vegas for eight weeks while working as a dancer in the Tony Martin and Peggy Lee Shows, at the now defunct Desert Inn.  The pull of working in Vegas for New York dancers like me was the enormous salaries they paid. I don’t remember the amount, but if you watched expenses and brought a good portion of your salary back to New York you could live on it for six months. This meant you could avoid taking odd jobs that interfered with staying fit as a dancer and being available for frequent auditioning. In order to accomplish this end, refraining from gambling was critical as was economizing on living expenses.

It was winter, the rainy season, which meant sunbathing, swimming, golf and tennis were not frequent activities. For us, the highlight of most weeks was the other shows we were able to catch on our night off, and the dance classes we took from whatever choreographer’s’ assistant happened to be in town.

The glamour of the place, then as now, did not extend much beyond the footlights. Though we wore elaborate beaded costumes and glued on false eyelashes to perform, my roommate and I grocery shopped after we got off work at 2 am, cooked and ate all our meals in our motel-style apartment, and to further economize, we rented a sewing machine and made the evening clothes we were required to wear in order to come on to the property.

Weird Las VegasThe weirdness of the place is still intact. We encountered people clearly under the influence of something, forgetting how to walk or talk properly, but the dress code has changed dramatically. Locals and tourists alike dress in what I would describe as “grungy casual,’ jeans, sweats, and workout clothes. I noticed this especially because all the women, from waitresses to chambermaids, to teenagers on the street, proudly sported elaborate eye makeup and glued on eyelashes.

Students on the campus dress like students everywhere, though a hundred or so wore black tee shirts with the letters TEAM on their backs. I came to appreciate their dedication and effort as the purpose of my return trip to Vegas was to present a talk, “When Death Threatens, Life REALLY Matters.” at the TEDx UNLV event. It was fittingly titled, “Living in the Extreme.” Who says the universe doesn’t have an outlandish sense of humor?IMG_1888

The Shift

healthSomething shifted this week, no doubt about it. Suddenly after all the days, weeks, and months of stretching and strengthening activities with the physical therapist and daily repetition of assigned exercises at home, it feels like I may finally be getting somewhere. My progress has been so slow these past three months; it’s been hard for me to perceive it. But whenever students or friends didn’t see me for a couple of weeks they often mention seeing improvements.

This week I noticed I can stand up straight more easily. This makes lots of other movements easier. The lower part of my shoulder seems to be providing support from underneath. As soon as I experienced this change I gave a sigh of relief. “Welcome back. I’m not sure where you’ve been but I’m glad to have you back on the team.”

This clearly perceptible change came the morning after I’d completed a writing project I’ve been working on all summer. Maybe it’s just a coincidence but my body felt a great deal lighter after I pushed the submit button. The next morning I noticed as I went for my walk, my whole body seemed to have rearranged itself into a new, more functional alignment.

“No pushing, no pulling, no lifting,” were the instructions I got when I broke my shoulder. These were critical restrictions and I heard them loud and clear and followed them religiously. But now I’m reaching out to challenge them, claiming and affirming each and every newfound skill and ability. Yesterday I pulled the car door shut from the inside with my wounded hand. Today I pushed open a heavy commercial glass door using that arm. In everyday activities I’m finding myself more willing to use my left hand, to give it a try

magnetAfter the deep relaxation of a Reiki session, I’m developing a new appreciation for the importance of relaxation to my recovery. It isn’t about doing nothing. It’s a purposeful “non-doing” that is as important to my healing as enriching my nutrition and taking plenty of naps for the restoration that only comes from sleep.

Our Lady of the Broken Wings

“You’re not as you were,” the doctor tells me as he shows me the x-ray of my shoulder. The picture has little meaning since I’m not totally clear on what the shoulder bones are suppose to look like. It’s three months since my fall, and after he directs me to push against his hands and reach up overhead he declares, “you are at 80 percent.”

IMG_1511I agree with his assessment but let him know I will not be satisfied until I have regained what was for me, a full range of motion. He’s careful to make no promises. He tells me to make an appointment in three months and continue physical therapy. If I am not satisfied with my recovery by then he will do an MRI and see whether there is any surgery that would help. If I’m satisfied with where I’m at that time, I can cancel the appointment.

Standing in the examination room with my husband as my witness I am grateful for yesterday’s conversation with Susan, a dancer friend from Chicago, about her own recovery from a shoulder injury. “I’m at 100 per cent. I’ve gotten it all back,” she says as she moves her left arm in a gigantic circle overhead and reaches behind her. She looks straight into my eyes when she says, “I wanted you to know that. It’s possible,” and then she tells me how she did it. Physical therapy twice a week, 20 minutes of exercise three times a day, and Reiki sessions weekly to deeply relax the muscles that are constricting the movement. In other words, it takes work but it’s doable.

At my favorite dress shop yesterday Helen, a woman who claims to be older than me though she won’t say how much, lifts her arm upwards to show me her range of motion. Her shoulder injury was more than five years ago and her arm is about like mine is now, but she’s satisfied. Somebody else can reach the items on the top shelf. In other words, it’s not only what you’re used to, but also what you’re planning to do in your future life. I’m still a member of the “going for the gusto club” though I realize it takes more effort than it used to.

Another dancer friend and mentor Cynthia, had a shoulder injury a couple of months before mine, (her right, my left). She’s nearly back to a complete range of motion and her recovery program included all of the above along with her spiritual practice of making art with whatever comes into her life. We’ve commiserated about our “broken wings” and when I saw her at InterPlay’s national conference she gifted me an art piece she created out of found objects. It’s a shrine to honor our brokenness – individual and collective, to call on the energies of renewal and restoration, and to remember our bones, and other body parts need lots of love, commitment and a caring community in order to heal. 

The Pain of More Than Halfway There

Neck-pain-generalAfter ten weeks and the twice-weekly Physical Therapy sessions and daily exercises, I am no longer managing with only one hand. The injured arm still needs strengthening but that’s starting to happen, so being able to drive seems to be in my near future. Monday I get on a plane to Chicago on my way to Racine WI where I will chair the national board for Body Wisdom, the organization that oversees InterPlay. It will feel good to be in a useful role and in community again after so much alone time this summer but getting there feels more than a little daunting.

Several weeks ago the woman who cleans my house and who had broken her wrist several years ago, told me, “It hurts more later on, when it’s healing.” I did not want to hear that and I was hoping that my experience wouldn’t be the same as hers in that regard. But she was right. For me, it’s not just that the shoulder and arm are healing, it’s that I’m challenging them everyday, trying to unfreeze that shoulder, stretch the muscles and strengthen them to regain my range of motion. Every gain brings new discomforts.    

20050622-9562-painYesterday as I was getting emails about taking a train from the airport to a particular stop in Chicago to meet up with someone who would be driving to Racine, I got in a pretty cranky mood. “Nobody’s getting that I only have a hand and a half to lug my suitcase,” I’m thinking, “although a hand and a half is better than only one.” The low-grade pain running down my arm was a big part of the problem and the ice pack I put on after my exercises had not helped to any great extent. Reflecting on it later I am amazed at the people whose every action in life is accompanied by a certain level of pain. The next cranky person I meet, I’m going to take this possibility into consideration and be in awe of their heroism.

 

 

 

My Summer of Disability

healthOur family began naming our summers in 2002 when our daughter was navigating treatments for breast cancer. The first summer when she was doing chemotherapy became known as the “summer of self-sufficiency.” Her children, (ages 11, 9, and 3) needed to not rely so much on their mother and learn to do more for themselves. The second summer, when she underwent a bone marrow transplant became the “summer of sanitation.” Due to her fragile immune system, we all had to be vigilant about keeping surfaces and ourselves germ-free. No one could visit her if they had even, a simple cold.

Now that I know my recovery from a broken shoulder will take the entire summer, I’ve named the summer of 2015 my “summer of disability.” It’s not how I wanted to spend the summer but I’m working on being a grown-up about it. After all, the measure of a person’s character is how we behave when we don’t get what we want.

I’m learning alternative ways of doing everyday tasks and novel approaches to getting around town. (Think: walking, rides from friends, limousines services, and now, Uber.) I’m also challenged as anyone with a handicap is, to look again at my abilities. What are things I can still do? And even better, what things need doing that, when I’m fully able-bodied, I don’t take the time to do? (Think: sort and give away unneeded clothing, organize photos, clean out office files, finish the article I’ve been working on.)

My daughter Corinne told me once that struggling with challenges to her health had caused her to realize she had been prideful about her state of fitness and good health. A student of the bible I think she was influenced by proverb 16:18, often shorten to “Pride goes before the fall.” I feel a sisterhood with her on that, but I don’t see it as automatically a fault. Maintaining ourselves in good health requires a great deal from us, as does rehabilitating our broken parts after an injury. We should take pride in these accomplishments while recognizing we may not be seeing the whole picture. Tough stuff can happen in spite of our best efforts.

Jim Collins in his book, How the Mighty Fall looks at institutional decline like a disease: harder to detect but easier to cure in the early stages; easier to detect but harder to cure in the later stages. http://www.jimcollins.com/books/how-the-mighty-fall.html My hope for myself is that, when I return to full-bodied functioning, (goddess willing) I will not take that precious gift for granted. The summers, winters, springs and falls I’ve spent accompanying my adult children and dearest friends through life threatening illnesses have taught me that life is precious, even when our bodies are functioning less than perfectly. And three quarters of a century of living has taught me that we do our best, but we are able-bodied and healthy until we are not.

 

The Road Back

physical-therapyIt’s been 7 weeks since my shoulder slammed into the wooden floor of the dance studio. It’s been nearly four weeks since I’ve seen the doctor and I’m looking for reassurance that I hadn’t done any harm doing my passive physical therapy directed exercises. Once or twice a day I’ve held a pulley fastened to the back of a door with both hands, and moved my injured hand up and down using the strength in my good arm. I’ve stretched my arm along a tabletop, powering that movement by leaning forward with my upper body. I’ve very carefully followed all the directives of the doctor and the physical therapist, but when I get into the room where the technician is to take the x-rays, she begins moving my body in ways that I have not been moving it.

“Put your arm all the way across your body,” she says and I can’t do that without it hurting. When I tell her that she says she’s trying to get the angle that the doctor wants to see. I’m thinking if we are going to compare the images from before, why would it be necessary for me to do something I couldn’t possibly have done before? I refrained from asking that question, but I did suggest that she and the physical therapist might need to get together.

Apparently it worked out and the doctor got what he needed. He pointed out on the image that the bones of my shoulder are still in place and showing some signs of healing. This was a great relief to me but my husband, who was accompanying me, was eager to know more. 

“What percentage is she healed, would you say?”

The doctor smiled, “Everybody wants percentages.”

My husband smiled back and stood quietly waiting for his answer.

“I’d say 40 percent.”

“When can she drive?” my husband asked, with quite a bit of eagerness in his voice. I already knew my not driving was a big drag for both of us.

“It’s a liability issue,” the doctor said. “People do sue, and I can’t protect you from that.”

“The physical therapist told me I have no strength in that arm. If I had to turn the wheel quickly, it could be dangerous,” I said.

“There are people who drive with one hand but they take a people with disabilities drivers’ training course in order to do so. The problem with that is there’s a six-month waiting list for the class. The doctor gave his advice as he exited.

“I’d suggest, drive when you feel ready. We’ll add resistance training to your physical therapy regime and I’ll see you in six weeks.”

It’s clear there will be no short cuts on this journey, six weeks will take us pretty close to the end of the summer. But I am grateful for the recovery I have gotten. I’m able to dress myself, put contacts in and out, tie my shoes. I’m grateful that I have access to excellent physical therapists, the discipline to practice the exercises they are teaching me, and for the special bonus of being able to walk to the physical therapy office from my house.Now if I can master using Uber, I’ll be able to move about the city.