Tag Archives: death of a child

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.

 

A Grandmother Looks at Vaccinations

In 1945, during the only semester I attended kindergarten, I brought back to my family’s household of four younger siblings, the three most common childhood diseases of that time; measles, mumps, and chicken pox. Luckily my mother was a nurse and knew how to take care of a houseful of sick children. We all survived and since then, we’ve had immunity without being vaccinated. But survival had not been assumed, especially for my youngest sister Mary Jane, who was six to eight months old at the time and still recovering from being gravely ill at birth.

11973371-child-vaccination-2Part of how things turned out well during and after our house became an infectious disease ward, was that no pregnant woman visited us during that time. No person with a suppressed immune system came past the front door. We were able to completely quarantine ourselves so as not to become agents of illness and death to anyone else, especially someone who might not have the immune system strength to recover that we apparently did.

Flash-forward to 2015, and I’m watching the accounts on the evening news of the spread of measles in the United States – ten states, then twelve, then eighteen. I note the state where I live, Pennsylvania, is one of them as is California, the state where my unvaccinated 2½-year-old granddaughter lives. Her parents, concerned for her safety have not decided to have her vaccinated yet.

Am I worried? Yes. But my worries have changed as I’ve paid attention to the realities and the science behind vaccinations. Initially, I was worried about my granddaughter. Last fall, I didn’t want her flying through the DFW airport when I heard that some cases of Whooping Cough had been reported in Texas. Since she hadn’t been vaccinated, I reasoned, she might get the disease and die from it.

color-flu-vac-cat-webBut now I realize if my granddaughter, who is extremely healthy, contracted one of the diseases prevalent in my childhood, she most likely would survive it as I did.  My worry now moves to a concern for somebody she might infect, somebody not as fortunate as she is. Frail elderly people are at risk, as are children and adults whose immune systems are compromised, like someone in treatment from another disease or health challenge. My unvaccinated granddaughter could be an agent of serious illness and death for some one else. And in the manner that epidemics move, it would eventually become impossible to trace the trail of how many people had died from her particular linked series of exposures.

I wish I had the power and influence to make certain that my granddaughter will not be an agent of harm to someone else.  But apparently I do not. My own son, my granddaughters’ father, thinks as many of his friends do, that the government can not be trusted to tell the truth. They’ve heard stories of perfectly healthy children being harmed by vaccines as these stories are passed through the community where they live. They don’t watch television news or read the morning papers. They haven’t heard that the stories, even the study they are based on, have been scientifically refuted.

They think my advice is based on experiences from the olden days, not relevant to their generation. And it is true that, in my day, we had no choice but to take our chances with the diseases themselves, before there were vaccinations to prevent them. When vaccines became available, as they were when my three children were young, my family and most others gratefully followed the medical guidelines and had them administered to our children. Now as an elder, my own self care involves following the medical profession’s advice and getting shots to prevent the flu, pneumonia, and shingles.

But to this grandmother, as the opportunities to prevent illnesses are greater, so are the risks to humankind if such opportunities are not subscribed to. Modern life involves international travelers sharing oxygen in small cramped quarters of airplanes, newborn and young infants clustered together in daycare centers, families eating in restaurants and coming into contact with others at large shopping malls; none of this existed in my day. So my prayer for my granddaughter, and for us all, is that we not return to the days when most people were not vaccinated against highly contagious diseases. That we not return to the days when everyone knew someone who had died or been seriously impaired by diseases that, in the 21st century, are entirely preventable.

Hallow’s Eve

The pumpkins are prominently displayed at the grocers, along with the colorful pots of the season’s most celebrated flower, chrysanthemums. Front yards in my urban neighborhood sport dried corn stocks while the nearest farmland is at least a twenty- minute drive away. Homes with resident young children exhibit walkways and front doors decorated with spiders, cobwebs, and life-size white-sheeted ghosts.

Halloween-Home-Decor-Ideas-Cobwebs When visiting the homes of older children you may likely be greeted by a life-size black outfitted, gory, fanged, blood dripping, skeleton. As the costumed trick or treat crowd make their way from house to house on Hallow’s Eve, no one mentions that these playful, sometimes scary provocations of horror, are actually a contemporary version of ancient end-of-harvest ritual that celebrated the spirits of the dead. It was believed that in this transition time between fall and the hibernation of winter, the veil between the worlds was lifted, and spirits who had once walked this earth, might return on this one night.

 For my children Halloween was their favorite holiday, and before the Halloween candy had been sorted, let along eaten, they would begin planning for what they wanted “to be” for the following year. The dressing up as someone or something that they were not, or the opportunity to express a part of themselves in an artistic creative way seems especially satisfy, way beyond other holidays where gifts are exchanged or the turnover of the calendar is marked.

I still remember my youngest son, Ken dressed as a three year old devil, carrying a pitchfork made of cardboard, seven year old Corinne, dressed as a fanged tooth witch, her blond hair hidden by a black wig, and handsome five year old Kevin, outfitted as a swashbuckling pirate, (his dagger was also hand crafted by his parents out of cardboard.)big-scary-halloween-props

During this period of time in my life, my then husband was a radio news broadcaster assigned to the 6 pm and 11 pm news, so for all practical purposes, I was a single Mom on Halloween night. Fortunately I had a sister who came to help dress the children and who stayed at the house to give out the candy while I took the kids on their walk around the neighborhood. The evening  really was a two adult person operation.

One particular year, the scary costumes didn’t keep the evil spirits away from our house. While my sister and I were at our agreed upon posts, someone came around the back of our house and through an open window took our purses that were sitting on the kitchen table. In the aftermath of the celebration, not only were we both out of the money that was in our purses, but it was impossible to get a check cashed or have access to a bank account without our stolen identification.

Now all three of my children are grown and two of them are “on the other side,” as first nation peoples refer to death. As I light a Jack-a Lantern in my front window, I hope the spirits of my relations know that I would welcome a visit from them, in whatever state of dress or undress they might be.

The Summer Solstice

Today is the Summer Solstice. It is the longest day of the year in the northern hemisphere, because the Earth tilts 23.5 degrees on its axis and causes this part of the Earth to face the sun directly. We’re not moving closer to the sun as people often think, it’s just a better direct angle. In the southern hemisphere, it’s the Winter Solstice and the shortest day of the year as the tilt changes their angle in the opposite direction. 

Summer-solsticeI don’t remember much mention or attention to this day in my family or in the Catholic schools where I was a student, but I somehow always knew it was a special day.

It must have been later research and actually visiting some sites in Mexico and Ireland where I learned the true importance of this day. Many ancient cultures around the globe; the Mayans, Druids, Celtics and others, oriented their sacred sites to highlight this day.  For them it symbolized the triumph of light over darkness. Stone structures or caves were crafted to allow the light to stream in to their altars announcing that the journey to enlightenment had reached its apex.  

I remember just after my son Kenneth died, looking up at the bright moonlight streaming into our living room, and realizing his death was on a particularly auspicious day, the summer solstice. This assured me that I would never forget the day, never allow it to go by unnoticed. My practice is to find something special to do to honor my son, and to express my gratitude for his life and the part I was allowed to play in it.

Ken, Sheila and Rich in CorpusThis year I’m participating in the Re-Source Gathering of Creation Spirituality here in Pittsburgh around the theme of Compassion.  The conference began last night with circle dancing and chants lead by master teachers from the Christian, Jewish, and Buddhist traditions. We used InterPlay forms to connect with ourselves, each other, and those we love who are far away, on this plane and on another. This focus on compassion seems especially fitting for this occasion as Ken and I were compassionate companions, suffering together until, on that early morning of the Summer Solstice 1997, the suffering was no more.

Commencement

It’s a tremendous accomplishment, though I’ve often wondered, whose accomplishment is it? If it takes a village to raise a child, when the eldest child of my eldest child was scheduled to graduate from college a couple of weeks ago, our family determined it would take at least that many relatives and friends to help him celebrate.

 EthanGradThe graduation was to take place in the spring in the center of the country, in a city where none of us lived. Traversing the country from all directions, relatives drove south 10 hours from their home in Nebraska, Auntie Pat flew from Detroit, my husband and I from Pittsburgh, one granddad from Oregon and our grandson’s uncle, wife and 20 month old flew north and east from Palm Springs. His sister Vitoria had to stay home due to a rained out and rescheduled soccer game but she was able to participate via Facetime when her brother’s Iphone was passed around during the family’s celebration dinner.  

 Spring rainstorms across the country turned everyone’s travels into a most challenging saga, testing our stamina, flexibility, endurance, financial solvency, and group problem-solving skills. When flights are cancelled due to weather, airlines bear no responsibility and are held harmless, thus the need for all the above skills. When our nearly 20 month-old granddaughter and her parents were slated to spend the night at an airport on cots, this grandmother had to swing into action to find them real beds nearby.

MeEthanKelly Looking back now was it all worth it, all this effort to mark a family milestone? It wasn’t till I got home that I fully realized why it was all so important to me. I’d worked with my grandson to plan the events. I’d rented a house so everyone would have a place to stay.  His grandfather and I held a reception that included his friends and ours, and we sponsored the family dinner he wanted at one of his favorite restaurants near campus. Ethan’s mothers had died when he was 12, and as her mother, I had to be sure and do for him whatever she would have done, had she had the chance.

A Different Kind of Gypsy

In the musical comedy theaterTravellers_Decorated_Caravan_(6136023633) the dancers are called “gypsies.” I suppose it’s because the nature of their employment involves changing jobs and moving around the country often. The first year I was in New York, I lived in 11 different places around the city, including the times I arranged to sleep on a friend’s couch.

This week I’m falling back on those learned long ago gypsy skills – moving around the world with a spirit of adventure, and practicing the spiritual discipline of extreme flexibility. I’m been in North Texas on what might be termed “a book tour.” With the help of my sister who lives north of Denton, I organized one book event in Fort Worth and two in Dallas. Sandwiched in between I attended a women’s retreat at a ranch an hour and a half northwest of Fort Worth.highways

I lived in this area of the world for over 20 years but having left eight years ago, I’d forgotten the amount of time people here spend in their cars and how carefully they plan their trips to miss the rush hours and the logjams created by road construction projects.  As a visitor it strikes me that most every roadway is being worked on, or expanded to accommodate even more traffic. Toll roads are under construction to swoop people over the top of the current roadways and make money for the state and the construction companies.

I’m now at my next stop, Atlanta GA. doing a home stay with a friend as I prepare for a Warrior Mother Performing the Book event this evening at Charis Books and More,  http://charis.indiebound.com/ the nation’ s oldest independent feminist bookstore. If you’re in the area, please join me as I help Charis celebrate their 43rd year as one of the “must see” places in the Atlanta area.charis