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The Breast Cancer Awareness Blog Day 26:  Existential Moments

10/26/2017

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The Actual Dance as a play presents the events of the year 2000 from my point of view as the spouse of the woman going through breast cancer.  Now, seventeen years later, it is apparent that I did not fully understand how deeply the experience impacted me.  It took me 12 years to write the story, so to speak, and the last nearly 5 years I have been telling it through performances of the play.  Every October I blog daily to help in raising awareness and to share elements of the story that I hope are of value to those who read these blogs. (All quoted lines are text from the play.)

DAY  26:  Existential Moments: “That was in 1973, I have since come to understand that life exists in each of us in a tangible form, and that the essence of who we are beyond the physical body exists”

Hearing the words: “You have cancer.”  is an existential moment.  Any time you begin to realize that your life or that of someone you love may end, you have an “existential experience” or “moment.”  The year 2000 with Susan was full of those moments.  My first experience though was in 1973, as I stood in the hospital room next to my mother, Frieda Alfman Simon, as she took her last breath as the result of her breast cancer.

"It was the first time ever I experienced the super-natural,” is the line in the play as I re-enact the moment in 1973. “I was afraid because I thought I had … seen something I was not supposed to be able to see.”   I experienced … saw … a white tuft of a cloud, a giant swirl which rocketed past me out of the hospital room at the speed of light at the very instant of my mother’s last breath.  

I was privileged to experience that life force exit my mother at her last breath.  Even now as I write this I remember that moment and continue to understand that experience as it was – a unique privilege.  

Indeed, that is in some ways what The Actual Dance  is all about. An Existential Moment​. Getting ready to be with someone you love as they take their last breath.   How do you do that?  Answer tomorrow.

Stat of the Day: According to a poll conducted in late 2012, 45% of people believe that spirits of our loved ones can come back and interact with us in certain situations.   USA Today published an article on October 25, 2017 with additional stats on the numbers of people who believe in spirits.

Task of the Day:   Rent the movie Ghost and watch it, again and again and again.  This is actually a homework assignment.  A test will follow in ensuing posts.

Resource of the Day:  Check out Attitudinal Healing International. I learned that finding ways to express our deepest thoughts is not easy.  There are places to go where some of those deep, “crazy” thoughts are welcomed.

The Actual Dance:  Performances.   Donate.
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Breast Cancer Awareness Month Blog Day 1

10/1/2017

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​THE BREAST CANCER AWARENESS MONTH BLOG:  DAY 1
 
Breast cancer has had a defining impact on my life.  When I was 19 years old I met the family of the woman I was to marry.  Not long after that I learned that her mother had breast cancer.  Susan and I decided the next year we wanted to get married – it was 1965 – and neither family was particularly enthusiastic about the idea.  “The decision to let us get married I think was more about wanting Susan’s mother [Bertha Kalmans] to see her youngest daughter wed than thinking it was a good idea for two twenty-year old kids to get engaged.”   (The Actual Dance) 
 
On August 23rd, 1966, Susan and I got married. And indeed, on August 4th, 1967, Susan’s mother passed away from her metastasized breast cancer. Shortly before our 1st Anniversary.   And it was later that same year that my mother, Frieda Simon, was diagnosed with breast cancer and five years after that on September 8th, 1973 that she passed away from a metastasis to her brain.
 
It was the Spring of 2000 when Susan was diagnosed with breast cancer. From the Spring of 2000 to the Summer of 2001 Susan’s diagnosis changed radically as the doctors tripped over themselves in expecting good news and finding increasingly bad news.  Then came the moment when everyone went dark and it became clear that the medical establishment expected Susan to follow her mother.
 
What was my response?  How did I spend that time and what did I do?  That is the story told in the play I wrote in 2012 and continue to perform.  The play, The Actual Dance is a theatrical presentation of my journey in the year 2000 with Susan as she went through her bout of advanced breast cancer.   It has now been presented about 150 times in front of nearly 2500 people, and it has become what “I do.” 
Let me say that it took me many, many years – about 12 – to understand the deep impact that the breast cancer experience with Susan had on me.  In retrospect, I wrestled with the experience in the deepest possible way.  It forced me to confront the most fundamental existential questions of life. What does life really mean? What is love?  “How do I do this? How do I dance the last, the actual dance with Susan?” (quote from the play) Something I couldn’t imagine doing and how I discover that “I can do this.”  

My own life journey has taken many turns starting in 1970. I started working with Ralph Nader as a lawyer. I was in the army. I created a public affairs firm in Washington, DC and ran it for 25 years always thinking I was involved in activities that helped consumers and the public interest.  Even appearing periodically on shows like Face the Nation, Phil Donahue and Oprah Winfrey and enjoying a profile in the New York Times as early as 1971.   Yet today as important or as impactful as any of that was, none of it feels as meaningful as this journey of taking this piece of performance art to audiences who once they experience the show seem themselves to be transformed.
 
My mission in life now is to take The Actual Dance to all those who need to see it; and to bring it in a way with the art, music and energy that will help others see and experience their own journey with breast cancer, or any cancer or life-threatening disease, differently. 
 
Breast Cancer Awareness Month
calls me to “up my game” in this work and to join the effort to increase public awareness of this disease and to offer insights and links to perspectives that focus on what I now call “the other person in the room.”   That is people like me “the love partner” and that can be a spouse a child even just a friend. 
 
So, each day, as I have the past three years, I will blog about Breast Cancer Awareness.  I will attempt to offer a “stat” or some not well-known fact about Breast Cancer or Cancer itself. Suggest a task in honor of Awareness month, and then point to some resources or other organizations in the field. Indeed, this year I

​hope to focus a bit more on what others are doing.

Stats of the Day: According to breastcancer.org 252,710 new cases of invasive breast cancer are expected to be diagnosed in women in the US, along with 63,410 new cases of non-invasive (in situ) breast cancer.  About 2,470 new cases of invasive in men in 2017. 

Task of the Day: Start the month off by performing your own breast exam and scheduling, if you have not done it all ready, a mammogram.  Here is a great little tutorial on YouTube that is suitable for all ages.

Resource of the Day: Here is a great resource for materials about Breast Cancer Awareness Month.  You can add something to your Facebook profile, a badge for your website, even draft letters asking members of your organization to take action! https://healthfinder.gov/nho/octobertoolkit.aspx

The Actual Dance:  Performances.   Donate.
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You can follow these daily blog posts here.

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Welcome to October Breast Cancer Awareness Month -- Day 19

10/19/2015

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October is Breast Cancer Awareness Month.   The Actual Dance is about many different things.  It is about breast cancer. It is also about love.  It is also about relationships.   It is also about spirituality and what life really is.   It is about a lot of things. 

In October in recognition of Breast Cancer Awareness I will post a daily blog with a reflection about breast cancer. The reflections will stem from something in the play.  (All quoted lines are text from the play.)
 
Day 19:  Life.  
My preparation for the year 2000 and Susan’s diagnosis of Stage 3, triple negative breast cancer perhaps started in 1973.  “It was the first time ever I experienced the super-natural,” is the line in the play as I re-enact the moment in 1973 that I stood in the hospital room as my mother, Frieda Alfman Simon, took her last breath.  It took me a full six years (yes, I remember exactly how long) to tell anyone what I experienced at that moment, and it was to a psychiatrist.  “I was afraid because I thought I had … seen something I was not supposed to be able to see.”   I experienced … saw … a white tuft of a cloud, a giant swirl which rocketed past me out of the hospital room at the speed of light at the every instant of my mother’s last breath.   At first I thought it might be just a hallucination because “I know what you call them… people who hear and see things in their head that nobody else can hear or see.”   That was in 1973, “I have since come to understand that life exists in each of us in a tangible form and that the essence of who we are beyond the physical body exists.   I was privileged to experience that life force exit my mother at her last breath.”  Even now as I write this I remember that moment and continue to understand that experience as it was – the unique privilege of the experience.   I will write more about how hard it was to me in 2000 facing up to possibly being with Susan at that same moment.  Indeed, that is in some ways what The Actual Dance is all about.  Being with someone you love as they take their last breath.   In 2000 I learned from what happened in 1973 about the sacred nature of life as an element of the divine that resides within each of us. 

Stat of the Day: According to a poll conducted in late 2012, 45% of people believe that spirits of our loved ones can come back and interact with us in certain situations. It is not unusual for audience members of The Actual Dance to whisper to me after the show that they too experienced the spirit of a loved one they lost even years after their passing.

Task of the Day:   Rent the movie Ghost and watch it, again and again and again.  This is actually a homework assignment.  A test will follow in ensuing posts.

Resource of the Day:  Check out Attitudinal Healing International. I learned that finding ways to express our deepest thoughts is not easy.  There are places to go where some of those deep, “crazy” thoughts are welcomed.



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Welcome to October Breast Cancer Awareness Month --- Day 1

10/1/2015

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October is Breast Cancer Awareness Month.   The Actual Dance is, among many different things, about breast cancer. It is also about love.  It is also about relationships.   It is also about spirituality and what life really means.   It is about a lot of things. 

In October in recognition of Breast Cancer Awareness I will post a daily blog with a reflection about breast cancer. The reflections will stem from something in the play.

Day 1: I did not have breast cancer.  My relationship to breast cancer is based on the impact that breast cancer has had on our family.   Susan’s mother, Bertha Kalmans, and my mother, Frieda Alfman Simon, both died from metastatic breast cancer.  My sister Marion Simon Garmel is a survivor.  Susan’s sister-in-law Roz Kalmans is a survivor. The Actual Dance tells a story of MY journey in response to Susan’s diagnosis of stage 3 breast cancer in 2000.   Given our family history you now have of my mother and Susan’s mother, what do you think my reaction was to Susan's diagnosis?  If you have seen the show you know. 

Stats of the Day: According to breastcancer.org 231,840 new cases of invasive breast cancer are expected to be diagnosed in women in the US, along with 60,290 new cases of non-invasive (in situ) breast cancer.  About 2,350 new cases of invasive in men in 2015. 

Task of the Day (for men and women):  To be aware is to be conscious of something. That means think about it.

Resource of the Day:  Cancer Support Community In July 2009, The Wellness Community and Gilda’s Club Worldwide joined forces to become the Cancer Support Community. By helping to complete the cancer care plan, CSC optimizes patient care by providing essential, but often overlooked, services including support groups, counseling, education and healthy lifestyle programs. Today, CSC provides the highest quality emotional and social support through a network of more than 50 local affiliates, 100 satellite locations and online.  Find a local Cancer Support Community affiliate here.

The Actual Dance:  Performances.   Donate. 

You can follow these daily blog posts here.

Please share your experiences with breast cancer by leaving a comment here.

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On Turning 70:   A Perfect Moment in My Time

7/17/2015

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On July 18th I turn 70.

                For the first time my question on this “special birthday” is not about where I will be at the end of this coming decade, it is about IF I will be.

                It is natural at this particular milestone to be reflective about life’s journey and what it all means.   As I do so I realize that on July 18, 2015, seventy years into this journey, I am at a perfect moment in my time.

                 There are many facets of perfect as I do a three dimensional examination of my journey.  I struggle with the words as I want to catch just how deeply perfect my soul feels at this one moment in time and how grateful I am for all that has happened in my life.   I look forward to the next decade (or two) or how many or few years might be mine with the confidence that the process of “perfection” will continue.   I am not afraid of what will happen when I won’t be here anymore.  “I have come to understand that Life exists in each of us in a tangible form and that the essence of who we are beyond the physical body exists.” (All quotes from The Actual Dance). There is no doubt for me that the essence that is me will continue forever in some form in the universe and that it will be good. 

               My first inclination in taking the inventory has been to list perfection in a two-dimensional sense. My internal physical well-being and the external relational well-being with the external world.    For a seventy-year old, I’m doing pretty darn well.  Take a look, and everything inside right now is working just fine thank you!   Suffice it to say that I have performed The Actual Dance about 82 times now, most recently July 16th, 2015, and I have never missed a performance because of illness.   I stand on my feet and present the show for about 1 hour, and I love every second of it.                


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         On the relational – second-- dimension of my life it too cannot get better.  Susan and I will be celebrating our 49th wedding anniversary on the 23rd of August of this year.   We met 51 years ago! (Though I “noticed” this “girl with curly black hair and big braces on her teeth 54 years ago” – see the play.

             
0ur son, Marcus, just turned 45, is happily married to a wonderful woman who we consider also our daughter and has two fabulous children, Zachery and Emily.  Our daughter Rachel is 18 months younger than our son and has a husband whom we are pleased to consider our son.  Their two girls are a delight, Joanna and Sydney.  They are both also achieving all their own goals in their life –or so it appears to me.


               We, Susan and I, each have siblings and we all talk to each other, we share our life-cycle events with them and share a family love that is unconditional. We have great, and even great-grand, nieces and nephews and cousins.

               And Susan and I are comfortably situated to take care of ourselves financially through whatever remaining time we have.

               What could be better?  There is better.

               There is the third dimension.  The spiritual dimension.   It too is perfect at this moment, and I look forward to the process of further “perfection.”  In the course of the last few years as I have gone through a radical personal transformation, a gift of radical amazement, that has come to me through the process of writing and now performing The Actual Dance.  This process has led me to understand what love really means in a way that every day and in every interaction I experience a new and different level of that perfect understanding.   Perfect can get more perfect.   Love cannot be bottled because it cannot be contained, there is no end or fullness that cannot become even more or fuller.

               My gifts and transformations have come over a lifetime.  No one piece or experience without every other piece or experience would have enough to get me to today. The Actual Dance would not have been possible but for the time with my mother at the moment she took her last breath.  Nor would this moment have been possible without first having gotten ready to hold Susan as it appeared she might be taking her last breath.    All discovered through The Actual Dance.

               As I enter my 8th decade of existence, I am a different and transformed human being. The journey’s rough spots are not important – only that they too were necessary steps to today.  What I would like to do is acknowledge a few people who have had (and some continue to have) an important role in my journey to this perfect moment.  Of course everyone who “I have ever met, ever known, ever loved in my entire life” have had a role in bringing me to this place, so a thank you – you will know who you are if you read this.

               Of special thanks and acknowledgement because perhaps of the most unexpected ways you have touched my soul:

Susan Meryl Kalmans (that’s her maiden name) – who has taught me what love really means.  A soul mate that has endured all the different stages of the relationship with amazing devotion and continues to my life’s partner.

Frieda Alfman Simon:  My mother who allowed me to experience her life-force exit her body at her last breath.  It is with that experience I have garner the perfect belief that “life exists within each of us in a tangible form.”  

Marion Simon Garmel, Evelyn Simon Fox, Sylvia Sue Simon Pickens Owens, my still living siblings.   Each of whom have given me something special in our relationships and today share in daily study with each other of Torah.

Harriet Rae Simon, my sister who died at the age of 32, who taught me how to lose a sibling and still go on.

Ken and Ginny Goldberg.   Ken and I grew up with each other from about the age of 13.  He and Ginny got married a couple of years after Susan and me. I consider Ken my best friend.  They both have taught me what being a friend really means. They also taught me the hardest lesson in life; how to be present in the midst of the worst tragedy in life.  They let me hear a soul cry.  And to experience the journey to a new wholeness thereafter. 

Lynn Fielder. Lynn is a friend who has so deeply touched my inside that I don’t know how to acknowledge it fully.  A most totally unexpected and “random” (only if you believe that anything can be random) relationship.  We served on the board of directors of the World Institute on Disability together. Lynn taught me that there is a purpose to my life and that I could discover that purpose.   She taught me that God does not make mistakes, and everything we are – in her instance including her Parkinson’s disease -- is part of our purpose.  My real spiritual journey began with Lynn one day in 2001 at lunch at a Vietnamese restaurant in Oakland, California.  Most importantly Lynn taught me to be “grateful for whatever I have, when I have it” because it may be gone tomorrow.

Rabbi Richard Sternberger. Rabbi Sternberger in life was the most not spiritual man you might ever meet. He was also among the most ethical and prophetic voices in America for four decades.   He also gave me the ultimate gift of letting me know about 6 days after I sat in his hospital room as he took his last breath that “everything is going to be okay.”

Ralph Nader. His impact on my life since I first worked for him in 1970 has been profound.  He has taught me what finding purpose looks like.  Most often from afar, but from time to time as closely as knee-to-knee – what love of family and tradition can feel like.

Rabbi Laszlo Berkowits.  If I had an older brother, it would have been Laszlo.  So, Susan’s oldest sibling is 16 years older than she, Laszlo is about the same relative to me.  He has allowed me to be a partner in his world in ways that have taught me deeply the ultimate value of every human life.   We have traveled and experienced places where no human being should have ever been and in a way that few people who weren’t there at that time get to experience. 

Marcus and Rachael Simon our children have blessed me (and Susan) with their gift of honoring us in the full ten commandment contextual meaning of that word “Honor.” 

Nadja Fidelia, whose gift of conversation about existential wrestling with God have helped stretch open my own spiritual container.   There are some conversations that we can imagine in our heads sometimes, and she has had those with me in the real world.  She has help me validate what I sometimes begin to doubt about my own experiences.

Gary Austin¸ the legendary improv teacher and founder of the Groundlings in Los Angeles.  An intimate relationship with Gary as teacher can be hard.  I describe it sometime as if I stuck my hand down my throat and turned myself inside out exposing every cell in my body to the brilliant light of the outside.   Wow it hurt so good!  It was Gary who offered,  “improvise a story, write it down and then perform it.”  It was his encouragement that brought me to find The Actual Dance.

Carol Fox Prescott.  Carol my first real acting teacher.  I discovered her through the Improv retreats sponsored by Artistic New Directions has been such an important part of my transformation and The Actual Dance.  Through “On the Breath” acting work I have learned how to find a place where “angels sing on rays of light and love pours fourth from the heart of the universe.”   Through years of her classes I have come to understand so many things differently, like “generosity.”  Not as money but as spirit and giving love to others.

Gabrielle Maisels, my dramaturg and acting coach was both a fellow student of Carol Fox Prescott and earned the blessing from Carol to lead “on the breath” classes. Gabrielle is a full partner in the development and pursuit of The Actual Dance.   Gabrielle in some many complicated and straight forward ways has kept me going on an unlikely journey.  She has guided me to the amazing and delightful place for me to be able to say and believe: “I am an actor and a playwright.”

There are many more people. Friends and colleagues particularly those discovered during this time of transition for me, such as Robert (Bob) Chase, at Intersections,  Carol Hexner part of the Values Roundtable that I worked with and Fred Johnson the amazing Fred Johnson, whose voice and heart are models for me, and I know more are so essential to my being “here” now. 

***

               So as I turn 70 – I find that I am at a perfect moment in my time because of YOU. Everyone mentioned and unmentioned.  Everything that has happened in my life I am convinced happened to bring me to this exact time and place and it is at this very instant Perfect.

               Thank YOU!

 


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    Sam Simon

    Samuel A. Simon is the playwright and performer of The Actual Dance. 

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