Tag Archives: grieving

Giving Voice to My Book

WarriorMotherAudioIt’s finally happened! The audio version of my book Warrior Mother is available on Amazon and Audible. The links to find it are at the end of this post.But let me tell you the back-story on how this came about.

As a writer I’ve heard a lot about literary voice, especially from my writers’ group. In breaking me of habits I acquired writing as a professor in academia, and since I was writing a memoir, they would often say, “we want to hear you on the page.”

Voice is the style or personality of the author showing through the words and phrases. Since as a dancer my first language is movement, the transition to using only written words to tell my tales was not a swift or graceful one. It took longer than I expected to perfect my writing skills to do justice to the story I was attempting to tell. I did succeed to my own satisfaction eventually and Warrior Mother received book awards and positive reviews from readers and professionals alike. I come up with a way to Perform the Book that merged both verbal and non-verbal language with help from my improv troupe and others around the country. This became an especially satisfying way to share the book. http://sheilakcollins.com/services/performances/

But almost from the beginning I felt a strong urge to tell the Warrior Mother story in the audio book format. Here I could use my actual voice to communicate through tone, rhythm, and pace, the passion I felt for my subject. I received encouragement from people who know about such things that, since the story is my story and I have a decent voice, and some experience in theater, reading my own work would be recommended. Conversely if your book is a novel or mystery story that involves many characters with various accents, it’s best to hire a professional actor.

audio.recording.studiojpgAbout a year ago, I set out to narrate Warrior Mother. My closet became my sound studio. I connected with a talented sound specialist who had the know how, the equipment needed, and the patience to deal with my somewhat unruly dog Cody. In order to keep him from barking and messing up the sound track Cody had to sit beside the technician, all the while appearing fascinated by his every move.

I’ve received my first audio book review from a woman who knows a great deal about books since her profession is to help people write their books. Here is what Bonnie C. Budzowski wrote to me, Your book is truly beautiful, and the quality of the audio is excellent. Listening to your own voice telling your story enhanced my experience.”

The process of narrating my book has been most satisfying. I’m not sure I can articulate it yet, but it has changed me in a different way then writing the story changed me. And it definitely has changed my writing – increasing my attention to pacing and rhythm, and tone, and yes, literary voice.

https://www.audible.com/pd/Bios-Memoirs/Warrior-Mother-Audiobook/B074KPS1TQ?ref_=a_newreleas_c2_19_t

https://www.amazon.com/Warrior-Mother-Fierce-Unbearable-Rituals/dp/B074KPXQSN/ref=tmm_aud_swatch_0?_encoding=UTF8&qid=&sr

The Art of Grieving: When Parting Becomes Sweet Sorrow

Candle-burning-in-hands-in-the-darkEarly morning on the Summer Solstice, twenty years ago, my 31-year old son, Kenneth died of AIDS. This fact has insured that I would never forget the anniversary of his crossing and always be reminded of the gift of his life.

There was heartbreaking loss and blessed relief in those final hours. When the path to recovery and a longer life is no longer possible, death becomes the desired goal – the end to pain and suffering for our loved ones and for ourselves. And then begins the long journey of grief and bereavement as we continue on without them. I didn’t know then that my loss would eventually become a resource for my life, a spark of sweet sorrow where remembering would be a way to continue my love for Ken and to give his life meaning in the larger world.

  • Do you have stories of lessons learned from someone no longer with you?
  • Have you found special ways to honor a loved one now deceased?
  • What reminds you of your deceased loved one and how do you respond when that occurs?
  • Are you aware of ways you can extend your loved one’s legacy beyond their lifetime?

Ken’s 3½-year journey living with the disease had meant managing the fear and pain of a death-defying challenge and the social stigma and resulting isolation necessary at that time to live life as fully as possible. “Do not tell anyone,” he was told by the AIDS Outreach Center, “even your best friend, if you want to keep your job.”

Ken and Samantha300Experimenting with medication trials and ways to manage their side effects, Ken bravely continued to life the life he wanted for himself. He called on skills learned in his theater career to help him put aide the discomforts and difficulties and step into his life’s stage in the role of a healthy person. His doctor called his strategy “healthy denial.” It was not a denial of the fact of having a serious disease, but of its inevitable outcome. Ken repeated often to himself, “My main focus is to take really good care of myself so I’ll be here when the cure arrives.”

The cure is still not here. In spite of the great strides made for AIDS to become a chronic disease people can live with – people must know they have the disease and must have access to the newer medications. More than 1.1 million people in the U.S. are living with HIV today, and 1 in 7 of them don’t know it. An estimated 37,600 Americans became newly infected in 2014.

Some years I celebrate Ken’s anniversary by finding ways to call attention to and educate young people about the facts of HIV/AIDS. One year, my improv troupe Wing & a Prayer Pittsburgh Players used the singing, dancing, storytelling improv art-based system of InterPlay to introduce teens to Ken’s story in the program Educating Teens About HIV/AIDS.

http://www.educatingteens.org/mission.html

I knew what Ken would say to them if he had the opportunity and using his voice I got their attention. I figure, preventing even one person a year from getting AIDS is a great way to remember Ken. It feels good to know that something I’ve done on behalf of Ken’s memory may have contributed to the fact that, in the U.S, there are fewer new cases. From 2005 to 2014, the estimated number of annual HIV infections in the U.S. declined 18%.

Taking To The Streets

Last Friday when I was visiting New York City to celebrate a cousin’s wedding I googled “Things to do this weekend.” Two large-scale street events with themes relevant to my life popped up. The 11th Annual Dance Parade was being held Saturday from 1 – 3 pm. Approximately 10,000 dancers would be dancing down Broadway from 21st Street to Tompkins Square Park in the Village. IMG_3365One hundred and sixty seven groups demonstrating Salsa, Hip-hop, Tap, Ballroom, African, Bolivian, Indian, Chinese, Jazz, and Flamingo – in short, every kind of dance imaginable, organized the event.

Sunday morning AIDS Walk New York was happening through the streets of Central Park – the largest event to protect public health and support people living with HIV/AIDS. Versions of both of these events are held in other cities across the country but the NY versions are likely the biggest and the best.

As a life-long dancer, few things are more rewarding for me than to dance, witness dance and celebrate dance. I welcome any occasion to dance, and I love being inspired and challenged by different types of dance. I know through my own experience and through my studies the gifts that dance brings to our physical health and well being, to our brains and memories, our emotions and our spirits. Though scientific research is currently documenting these benefits, they are not widely known and appreciated in western culture as yet. So a parade and festival are a great way to go. I loved dancing along the sidelines as I snapped pictures of the beautifully costumed people of various sizes, shapes, ages, and abilities, as they demonstrated their cultures and the dances that enliven and invigorate them.

IMG_3420The AIDS Walk opportunity was especially meaningful to me because I had just told one of my friends that the 20th anniversary of my son Ken’s death from AIDS is coming up next month. ”I’d love to find some special way to honor him,” I told her. So here it was, a chance to support a cause that mattered a great deal to Ken and our family. I found my way to the park and the sign-in table after a challenging ride on a under construction NY subway, to seize the opportunity to stand and walk with others who care about this important issue. I felt I had found my tribe; people who have lost friends and family members to the disease, who are living with or know people living with the disease, and whose fondest wish is to insure that no one else need suffer from it.

As I joined into the stream of hundreds of other tee-shirted walkers, clustered in occupational and church affiliated groups, I thought about the power of taking our concerns to the streets. How rewarding it is to enter a group body that is walking on behalf of what we care about and how we want our world to be. I was reminded of a ritual practice and chant I learned from some first nation people, “Every step a prayer.”

Given the strong connection I have to each of these themes, I was amazed that they were both being held the particular weekend of my short visit. When I told one of my husband’s relatives about this she smiled and mentioned a Yiddish word. It’s meaning – “it was meant to be.”

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.

A Visit to Who We Used To Be

img_2724While visiting relatives in Boston this past weekend we toured the Presidential Library of John R. Kennedy, our 35th president. This experience confirmed an important truth I learned from two of my African American girl friends, from their culture – Sankofa. It means sometimes it’s necessary to go back in order to go forward. For my sister and I, reliving the inspiring political conversations that took place before we were old enough to vote, proved to be a balm to our troubled souls.

The goal of the library with its 5 million pages of personal, congressional, and presidential papers, 500,000 photographs and 12,000 reels of sound recording, is to promote greater understanding of American politics, the process of governing, and the importance of public service.

In the 60s politics wasn’t a dirty word as it has become in present time. It’s been difficult to watch lately, as people believe a candidate when he declares what he alone will accomplish. This widespread gullibility demonstrates profound ignorance of the process of governing in a democracy. Let’s hear it for amping up high school civics classes. But It’s that last goal – “ask not what your country can do for you, ask what you can do for your country,” that ignited our hearts. It took us back to a day when serving one’s country and the greater good were what we young people aspired to.

The sections on the initiations of space travel to the moon, the establishment of the Peace Corps, the nuclear test ban treaty, the civil rights legislation – left us in awe of all that was accomplished in three short years. Of what’s possible when our country is united behind an articulate, inspiring servant leader.

President Kennedy had his own version of Sankofa when he said, “We celebrate the past to awaken the future.” As this past election process has been teaching us, when we do not stay true to the wisdom of our better angels, our collective demons take over our public and private lives.

What’s a patriotic citizen to do? I was especially inspired by Kennedy’s response when asked by the press if he was enjoying serving as president. He said that he agreed with the ancient Greek definition of happiness, which was “the full use of your powers along lines of excellence.” My sister and I decided we needed to revisit more historical  that inspire us to do that.

Undoing the Damage

IMG_1356-1 It’s been a month since the fall that changed my life and I’m now beginning the restoration phase of the project. Last Thursday I had an evaluation at the physical therapy clinic in my neighborhood where I was given a few passive exercises to begin undoing the muscle tension that prevents me from having use of my left hand and arm. As I now understand it, when my bone broke, it enlisted enormous help from the muscles in my arm to lock it in place so the broken pieces could reconnect and fuse. And for the past month my part has been to hold the arm in a fixed position through the use of a sling, which I wore every day, even at night while sleeping.

I’m loving being able to let go of the sling for all but the times I’m in a crowded public space and need to signal other people to avoid bumping into my left side. I’ve also worn the sling when I’m teaching InterPlay to remind myself not to try to use muscles that have lost most of their strength. Strengthening will happen in the third phase – after the bones are securely mended.

As I’ve begun the exercises to reclaim some flexibility, the emotional challenge has been significant. I’m brought to the edge of tears, not just from physical pain, but from the feelings of shaky vulnerability that become ignited, like a bird with a broken wing continuingly attempting, but not quite able, to achieve flight.

Not surprisingly, since memories are stored in our bodies, working with the inner muscles close to the bone activated a memory of an incident that happened during a bodywork session I did 30 years ago. The practitioner working with me as I lay on the massage table held my left shoulder in her hands. Sending my breath into that place, and with her help, I was able to release tension from deep inside my shoulder, which coincidentally was the same shoulder that I’ve now broken. The immediate aftermath was a sensation of deep chill and my whole body began shivering. When I asked her what this might be about she said simply, “It’s fear.”  

A few minutes later when I went outside into the streets of New York City, I experienced that shoulder as porous, and the wind as moving through open spaces I had created within it. I never was quite sure what that was all about but I never missed whatever I’d let go of and I’m hoping I won’t miss the tension I’m working on letting go of now.  

Falling: Aftermath

magnetIt’s day 24 since my fall in a Sunday morning dance class ended my life-as-usual routines. Instead of taking a Zumba class this morning I will sit on a chair in the hallway outside the bathroom door, set the timer on my cell phone and use a pulley apparatus to slowly and carefully, exercise my arm and shoulder. When the good arm lowers the wounded one rises. I concentrate on listening deeply to how my body is handling this simple yet dramatic challenge. The goal is to introduce flexibility while not disrupting the proper placement and alignment needed for the bones to heal on their own.

Since my fall I’ve heard many stories of other people falling, including one of my long time friends Jyoti, who has lived in a memory center for close to 10 years. According to her husband someone left a suitcase in the middle of her room while she was sleeping, and when she woke and began moving about she tripped over it. No broken bones but lots of bruises that needed a couple of days in a hospital.

Last week my neighbor Claire saw me walking with my arm in a sling and she offered to check with me the next time she goes to the grocery store to see if I might need anything. A couple of days later she called. “I’m sorry I won’t be able to follow up on my offer to bring you groceries,” she began. “I’m in a rehab center after taking a fall myself during one of my power walks in our neighborhood.” The culprit was an uneven sidewalk, the outcome two broken bones in her left wrist, bruised ribs, and a sore left side

“Falling is part of life” according to the refrigerator magnet my friend Lynn brought me. She had her own encounter last summer with falling and breaking her heal when she walked out of a restaurant in Lawrenceville and turned her ankle in a hole in the sidewalk. After surgery and relying on a boot and crutches and the generosity of friends to get to work and back for 6 or so months, plus lots of physical therapy, she’s now an inspiring example that healing does happen.  IMG_1162

The second half of the magnet’s message, “Getting Back Up is Living,” challenges me to not focus on what I’ve had to cancel, (European vacation, grandparent trip with my granddaughter), or things I can not do (driving my car, taking dance classes, and ballroom dancing with my husband), but on the lessons being provided. I’ve become aware of how attached I am to my competencies. The 4 year old inside me who was ecstatic about being able to tie her own shoes, is still discouraged at herself when she cannot do that or other more important tasks. Looks like she and I are getting the opportunity to relearn many basic skills. I hope we’ll be like we were the first time around, proud and eager to let everyone know of our accomplishments so they can celebrate each small but important victory with us.     

Memory 2.0

My husband and I shiver as we stand with our friend Randall at the front door of the Memory Care Center waiting for someone to let us in. “How long has Jyoti been in this facility?” Rich asks. Randall briefly details the 10-year history of his advocacy for his wife in a string of facilities of this type and, blowing my breath on my gloveless hands,  I wonder if it might be time to move her again. “This company pays its staff a bit more so their turnover is lower,” Randall says. Through the glass door I catch a glimpse of a cleaning cart and knock more vigorously on the door. A maid responds and lets us in.

We walk into the main living room and find Jyoti, one of our best friends of 30 years, asleep in a recliner in front of a dark television screen, the same spot I left her on my last visit nine months ago. She’s dressed in comfortable, warm looking grey slipper boots as Randall approaches her chair from behind and gently calls her name. Coming around to the front of her seat, he offers his hands to pull her from the chair and lead her to a more private area for our visit. My husband Rich and Randall walk on either side of her, each holding a hand, and I walk behind. When we arrive in the new space she and I look at each other and I imagine I see a spark of recognition on her face.

IMG_1162The men and I slow way down in order to be in communion with her rhythm. She and I sit close together on a love seat and she lets me put my arm around her. As we hug she murmurs and mumbles a sound that sounds like “Mama.” Randall sits in a chair across from her and teases her about looking so intently at him. Rich sits in a chair on her other side while she creates sounds a young child might make, occasionally saying expressions like, “Oh, my,” with an inflection of surprise or delight. She breaks out in a song, and I respond by singing a few lines of “Amazing Grace.” I tell her that’s what her song reminded me of. She says some syllables in a rhythmic manner like reciting a poem and we remind each other and her of what a good poet she was. Randall invites Jyoti to dance with him and she seems delighted to do that. She’s a bit more reserved when Rich and I join the two of them in a circle dance, but though shaky on her feet she allows it. 

We take pictures of us together and Randall leaves the room and bringing back a framed picture of several women and us in our spirituality group from her room. I comment, “We’re all dressed up and at a wedding but I can’t remember whose wedding it was.“ As we study the picture together I say, “I look pregnant in that picture, but that couldn’t have been the case. I was way too old by that time.” Jyoti begins making a cooing sound and pointing to my stomach. As we sit together in the silence she rubs my tummy while making cooing sounds and I get the message that she’s teasing me about there being a child inside.

Returning home to Pittsburgh I’m disoriented, having trouble picking up the threads of my usual life, as though I’ve traveled to another place beyond space and time, another place we are all headed toward, one way or another.