The Actual Dance - a one-man play and story that explores what love really means
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THE DUALITY OF THE FAMILY CAREGIVER

11/15/2019

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In the year 2000 Susan, my wife now of 53 years, went from diagnosis to grim prognosis: stage-three, triple-negative breast cancer.   And then a post-mastectomy lump.  The doctors said they had never had a patient with a post-mastectomy lump.   The were sure this was going to end badly.

For the two years of active treatment I was there for each doctor’s appointment, I slept in her room for post-mastectomy recovery in the hospital.  I was there for each one of her chemo-therapy sessions, the periodic hospitalizations during the therapy and at home. Then the radiation treatments.

There were times when I helped her when she was very sick from the therapy, the anesthesia and the pain.  I learned how to empty those small plastic tubes plugged into her post-operative chest that filled with pink liquids.

Yes, I was a Family Caregiver. I gave care.  Like many others who are family caregivers I had to put much of my other life on hold.  As difficult as it was to keep up with my professional responsibilities, I couldn’t imagine being anywhere but with Susan during those days.

Like so many other family caregivers, I did what needed to be done, and despite my own worst fears I reflected no them, but Susan’s determination to survive.

We are family caregivers. We care.  We give. We don’t imagine doing otherwise.

“Family Caregiver” however is only half-the story.  It is perhaps the outward facing journey of the family member.  There is the other half of the story which I have come to call the LovePartner story or journey.

 A family caregiver is almost always in a love relationship with family member who is ill, often gravely ill.  As they – we – give that care, we also have the experience of confronting the loss of that person. 

It is what I call the other Face of caregiving.  The LovePartner Journey.

For me, as the Caregiver I was always stoic, optimistic and supportive. is stoic. Even when engaged in the most difficult tasks. In the hospital I would hold that small, semi-circle metal pan in front of her as she vomited from the Chemo medicines.   I would help her get out of the bed and go to the bathroom.  I didn’t flinch.  I didn’t mind.  Indeed, my posture was to be there and hold her tight. Match her stoicism. Susan never wanted a negative thought spoken or expressed around her.  She intended to recovery.  My challenge was to reflect only that optimism no matter what I really felt.

As her LovePartner, I was experiencing the worst fears of my life.  I couldn’t imagine how I could be with her as she took her last breath.   Yet, I was convinced of the inevitability of that moment.  I experienced something that I still do not fully understand nearly 20 years later.  Periodically during the experience. I would escape the present into some other place in time and space.  I might be sitting in the doctor’s office as he outlined the Cancer and how extensive it was, or in the post-surgery meeting where he announced that there was extensive cancer in the lymph nodes.  Or the discovery of the dreaded post-mastectomy lump.

In those moments I would exit the present and cognitively find myself in a different plane of the universe.   I could look down and watch as the events in the physical world unfolded.  I believe in this other “world.”  It was as real as anything else.  I experienced the sound, space and self.  A change in temperature and images. There was no sense of time. Instead, a vison of the moment –the existential moment -- when we both would be together in the center of an empty, grand ballroom, dancing to our favorite song, and in an ecstatic moment she would slip the earthly bounds of my embrace into eternity.

The LovePartner. Our souls have intertwined with the one we love and for whom we care and give care.  We imagine a rending apart the other half of our own being as our loved one disappears.

The Duality of the Family Caregiver.

November is National Family Caregiver Month. Please click here for a great on-line resource for Family Caregivers. 

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The Power to Explicitly Do Something

10/18/2019

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It had not occurred to me that my story could be told by someone else until Susan suggested it.

The play is MY story -- the love partner -- facing the unthinkable, hold the person I love most in the world as she took her last breath.

Susan reminded me that the story itself was universal, and that the actor wasn't really me -- it was the representation of a universal "love-partner."

Her point was that the power and meaning of the story could reach many more if someone different -- age, ethnicity, race could also perform the play.

Chuk Obasi, a colleague at a non-profit, and a trained actor, was an obvious choice. At the time I spoke with him about the play, he was losing a dear friend. He was engaged in this existential ritual. There were so many reasons why he was a good fit but this was one of the most important.

Chuk tells us what it is like to find this process and what it means to him to have embarked on this journey as well. During #breastcancerawarenessmonth, he speaks to how his involvement in the play has changed his perspective.

I hope you'll take just a few minutes to hear what he has to say.

Sam
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What Does Susan Have to Say?

10/10/2019

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The idea of facing the loss of the person you love most in the world.

The Actual Dance is told from Sam’s point of view – the love partner. Yet, Susan is a central character of this drama. She stands as a pillar, the one who was sure that she would survive.

While Sam still listens and worries, Susan lives a life a strength and optimism.

Even though Sam is the sole actor, Susan’s presence in the show is unmistakable.

She beats the odds and is an unlikely survivor, and yet embraces the telling of this story.  

What advice does Susan have for all of us this #breastcancerawarenessmonth?

I hope you'll take just a few minutes to hear what she has to say.
Sam
P.S. Thanks Karen K. for commenting on our Facebook post!
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What Love Isn't

8/21/2019

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     Love again?  Yes – Love again!

     Friday, August 23rd is Susan and my 53rd Anniversary.  What else am I going to write about?

   Last week I wrote about “What Love Really Means.”  Then, unexpectedly, I found myself focusing on the question of “What Love Isn’t."

       It is often a way to clarify an idea or concept. Be clear about what “it” is not.   We use the word “love” so often in society that it occurs to me that this might be a useful exercise for me and perhaps you, the reader.   I don’t know this, I’m guessing that Love is probably the most common theme of books, novels, movies, and psychology.  Since this is not an academic paper, I’m not going to be citing sources nor quoting authors.  

     Rather, I’m offering my own theory of what love is between two people as I have come to understand it.  The experience of being in love with someone and facing the prospect of having to hold their hand as they take their last breath focuses the attention.  It is what brought me to this quest.  Having now written a play about the experience and performed it over and over, I have come to understand and believe in the truly sacred nature of love. 

​     First though a quick review of previous blogs about what love is, or really means:

  1. US – discovery or the creation of a shared soul.  “I am the other half that which makes “Susan and me complete.” Each an equal half of the other.   A spiritual oneness.   That is the essence of the play and of the poem US.  We are one.
  2. A sacred promise.  Promising each other something that cannot be undone.  “I do” – The words of matrimony are spoken in the presence of witnesses and something outside of us, a higher power. 
  3. Thou:  In Martin Buber’s world “thou” is the sacred, divine connection between people.  I imagine “thou moments” as Buber refers to them. as a form “interaction” between two animate objects or beings of a life-force. A discovery of the divine sparks within each of us.  A divinity that consists of unlimited unseen sparks that combine between two beings to create a single interconnected being or soul. 
  4. Love requires life.  We can only love those “objects” or beings that can host a divine element.  So yes, we can love trees, and dogs, and even cats (I’m a dog person).  I will argue though things – Ideas and inanimate objects can be liked, understood, favorites, they cannot be loved.
So, what isn’t love?   We could go on forever.  These I think are areas often confused with love.
  1. Loyalty.   This is often referred to as “love.”  Loyalty though is a behavior. It can be provoked by love.  We can admire someone or believe the rightness of their actions.  Loyalty alone is NOT  Love.  Love may provoke a behavior,  it is NOT the behavior.  Behaviors can be kind, or they can be “loving.”  This does not mean you are “in Love.”  It means you are loyal.
  2. Things & Ideas Can’t be Loved:   Enjoyment, desire, appreciation of inanimate objects can be objects of our desires. We may have favorite things to do or read.  We may want to be wealthy, and horde money or rare coins or beautiful pictures.  The objects themselves cannot be loved.  They are inanimate. They cannot interact with us.  You cannot love something that is incapable of returning the connection. Yes, you can horde it, you can have the most and you can abide by a code or live a particular way.  It is you, an individual, that acts this way.  Love requires however someone or some living thing that can connect with you.   
  3. Patriotism:  This is a form of loyalty.  We often demand loyalty because we “love our country.” One is “Patriotic” if one acts with loyalty and sacrifice to an organization, a government.  Do we “love America.” “Do we love the Flag?”    We can value something, believe in the principles of things, commit to ideas and systems, and we can act in ways that support and admire.  We can be loyal to a country, we can believe in the ideas and ideals, and we may be called on to die for it.   An obligation and a requirement for the right to enjoy the location and even safety.
  4.  Death:  Simon Fitzmaurice wrote in his book "Its Not Dark Yet"  that he once thought the opposite of death was life. He said he learned instead that the opposite of death was love. There is a poem we read at many funerals and it ends with: "Love doesn't die, people do."   I was also skimming through the book, "When Breath Becomes Air", by Paul Kalanithi.  In the Epilogue by Lucy Kalanithi, his wife, says "It never occurred to me that you could love someone the same way after he is gone."   
     
      Love is a process of becoming.  Of being.  "Love at first sight"  might be just a hint, a clue.   Yes, we can see someone and feel a connection.  That connection may well be a marker, or a pointer or the beginning of the inter-connection.  Maybe even there is a “love seed.”  Love though is a process that grows from that hint, or seed or start into a fullness,  It is intimate, it is the exchange of breath and heart and time. I see it as the shared experience of divine essence, that starts and grows until we are full of each other. 

     It takes time, work and an awareness of soul.  It isn’t optional and it isn’t disposable.  When we are fortunate to find that person, that life partner with whom our souls intermingle, we can find our way through whatever times and events we encounter.  Love isn’t paradise. Love isn’t being perfect.

     Love is becoming one with another.  

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Tu B’Av 5779 (2019) -- What Love Really Means

8/16/2019

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 I just love, no pun intended, that the Jewish calendar has an official, though minor, religious holiday devoted to “love”.  I confess that I didn’t know about it until three years ago as I began researching what to do for our, Susan and my, 50th wedding anniversary.  I noticed that Tu B’Av is just one week before our wedding date of August 23, 1966.  

So today, Tu B’av, 5779 (2019), I want to share some of my reflections on Love that have emerged over the years since 5727 (1966) when Susan and I were married on August 23rd.

The Actual Dance – the play I have written and now perform – is itself a love story.  It turns out that even though I wrote the story, the act of performing and repeating and engaging the story has taught me more than I could ever hope about what, in my view, love really means.  Indeed, one of the lines in the play is:

“I wonder if two 20-year old kids really knew what love meant.” 

Indeed, ever since then I’ve been wondering: “What does love really mean?”

There is no better day to write about Love than Tu B’av.  (Okay maybe the secular version, “Valentines’ Day”.)

The story of The Actual Dance is one of facing the prospect of losing Susan to breast cancer during our 34th year of marriage.  It is “Our Story” – you can watch Susan and I talk about it here in a short video.

A complicated question, “What does love really mean?” 

My journey has me scrambling to understand more and more about love. I have read several books about love over the years.  One of the best, if not the best, is Jacob Needleman’s book, “The Wisdom of Love: Toward a Shared Inner Life.”  In many ways it affirms both my spiritual perspective on love as well as the practical implementation of love in the physical world.

So, here are some of the thoughts that are provoked today, Tu B’av –
  1. Let’s though start with Love Story, the book and movie, with the mantra of “Love means not having to say you are sorry.”   I would argue that love means the opposite.  Love means being sorry and saying so and showing you are when appropriate. I get the idea that love transcends momentary indiscretions and mean actions.  I think that Love means having to say: “I love you and I’m sorry” as often as necessary, and to behave in relationship to that person in ways that give meaning to those words.
  2. Jacob Needleman argues that Love really means enabling our life partner to realize their spiritual and essential fullness.  Love really means being a strength in your partners journey to full actualization of their own spiritual fulfillment.
  3. There is a line in the play, The Actual Dance, that captures for me the idea of what love really means:
         “I am the other half of that which makes Susan and me complete.”

         This line attempts to capture the idea of a spiritual interconnection – that combining of breath and               soul between two individuals.  It happens.  It is as is anything existential, inexplicable.  Rather it is                sensed, felt, or known.    In the poem “US” that I have written it is said this way:
       
         “Life exists in each of us as a form of the divine. A tangible essence of who we are.  Love              is when our essence became entwined, each an equal half of the other.”

I have come to understand that the “ultimate act of love” is being with your partner as they take their last breath.  The play imagines a liminal place in the universe between the physical and spiritual world that the two people can occupy for that moment, that instant, holding each other, until the one slips away in a tuft of whiteness into eternity.

I once was at a conference where a group of people were asked onto the stage with the mandate to offer “last words”.  Whatever that meant to us.   I reflected on this and ended up suggesting my last words would be the words I would say to the person I loved most in the world as they took their last breath:
  • I am sorry -- for all that I have done knowingly or unknowingly to hurt you.
  • I forgive you -- for anything you may feel you have done to hurt me.
  • I love you now and forever.



What does love really to mean to you?  Perhaps you can leave a comment and share today, the Jewish “minor holiday” of Tu B’av, the day of love on the Hebrew calendar. The proper greeting in this context is
​Hag HaAhava

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THE ACTUAL DANCE OF EL PASO  -- Broken Hearts & Guns

8/9/2019

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I was born in El Paso.  I grew up there.  Mesita Elementary School.  El Paso High School.  Then four years of college at what was known first as Texas Western College when I started, and then University of Texas at El Paso when I graduated.  I met Susan Simon, my wife now of almost 53 years (August 23rd) at Texas Western.  My parents, grandparents, aunts, uncles, cousins are all buried there.  Our trips back are often to visit them.

We have lived in the Washington DC area since 1970.  I often joke that after you live somewhere longer than where you grew-up, your “native status” changes.  Not today.

Today I am a proud El Paso native.  I am #ElPasoStrong   My El Paso is  beautiful.  Growing up there I went everywhere.  Often with other kids into Juarez, especially us high school guys.  Our classmates and friends often Hispanic.  An hispanic woman from Juarez stayed in our home during the week as a housekeeper and nanny. She helped raise us.  Most people in our neighborhood had live-in help from Juarez.  In grade school, 4th grade, they started teaching us Spanish.  It was mandatory.

El Paso did not then and does not now have a “problem” with migrants or Hispanics.   It’s clear today we as a nation have a different problem.  Racist hate.  It comes from outside of El Paso.

My passion now these years later is the play I wrote and perform, “The Actual Dance.” It is the story of getting ready to hold the person I love most in the world, Susan, as she takes her last breath.  It is what I anticipated I was going to have to do because of her advance breast cancer in the year 2000.

My story has a happy ending. Susan today is an unlikely survivor. Families of 22 people in El Paso (and Juarez) do not have a happy ending.

I want to share today two poems.  First is the one called “Hollow” written in recognition of the horror of sudden and unexpected loss.  The second is about the Gun.  The Gun as a killer that needs to be stopped. The existential purpose of a Gun, it argues, is simply to kill. 
​
I cry along with my fellow El Paso neighbors who have suffered such great tragedy.  I hope we as a nation can find the courage to end the hate and stop the carnage.  
                                                                       Hollow
12/17/2012
   
The dance that one day each-and-every one of us will dance.
The orchestra that forms and plays only when it is needed.
A wonderful, and intimate and beautiful goodbye.

Instead the music stops, suddenly without warning.
This dance takes only an instant.
A lifetime in the Universe.

The ballroom sits achingly, intolerable empty, silent.
Almost in black and white.

Hollow
 
                                                                          GUN
3/23/2018
​​
Why Am I?
Cold metal with moveable parts
Places for bullets to be propelled into hearts

To be shot
At a target on the mark
Stop a robber who isn’t smart
Kill the enemy who wants my heart
Redeem my honor
Show them who I am
Make them see me now

Why Am I?
Cold metal with moveable parts
Places for bullets to be propelled into hearts

To kill and nothing more
A destroyer of life and worlds
In hands of soldiers & police
Racists and robbers and thieves
Moms and dads
Students

Cold metal with moveable parts
Places for bullets to be propelled into hearts
Destroyer of lives – ender of worlds

Gun
 
 
© The Actual Dance, LLC, Samuel A Simon 2019
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LOVE

7/26/2019

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It has been some time since I have written about Love. 

In the year 2000, Susan my wife then of 34 years was diagnosed with what turned out to be stage three breast cancer. Susan now 19 years later and in the 53rd year of our marriage is an unlikely survivor of what is now referred to as “triple negative” breast cancer.  During her early medical treatment, a new and unexpected lump appeared.   The tone of the medical team changed drastically.

The Actual Dance, the play, is the story of my coping with what seemed to be an inevitable end, something I feared I could not endure.  It was written in 2012, more than a decade later finally giving expression to what had sat inside of me since that time.  The first poem I ever wrote was posted on the web site based on my evolved understanding of a love that connected Susan and me in some fundamental way.  The Poem                                                           US        

Life exists within each of us - a form of the Divine.
A tangible essence of who we are.
Love is when our essence became entwined.
Each an equal half of the other.
"I love you" simply awakens the US in you and me.
​

I am prompted to write now because of the beautiful sermon Rabbi, Amy Schwartzman of Temple Rodef Shalom, our Jewish home, gave on Friday night, July 19th It is the practice at the Temple that during the summer months for the clergy to speak on a theme.  This summer the theme or focus is on what is called in Judaism Pierkei Avot, or Ethics of Our Fathers.  The section is 5:16. A short paragraph.  It is a bit arcane read alone and suggests one might need to know more about the different stories.  Rabbi Amy in ten short minutes draws out of these few sentences a perspective on “what love really means” that beautifully enhances for me what I find in The Actual Dance.

This is Pierket Avot 5:16; (Ethics of our Fathers)

All love that depends on a something, [when the] thing ceases, [the] love ceases; and [all love] that does not depend on anything, will never cease. What is an example of love that depended on a something? Such was the love of Amnon for Tamar. And what is an example of love that did not depend on anything? Such was the love of David and Jonathan.

                You can watch it here,  starting at minute 48:13 until 58:05.

Wait!  Finish reading this and then listen to Rabbi Amy!  Come back share your thoughts.
               
The idea is of unconditional love – love that does not depend on anything. In 
The Actual Dance, the play I wrote six years ago, the lines that echo these sentiments are:
  
           “
I am the other half of that which makes us, Susan and me complete, and when else in our lives is  it more important to be whole than when our body is badly broken.”

Rabbi Amy uses the metaphor of “knitting” – that souls knit together.  She created for me the imagery of two people weaving or knitting their essence or souls as life’s journey continues over time. 

The Actual Dance evokes a ritual, a metaphor for the end of that life journey of a graceful dance of the two people/souls dancing and swaying on a floor of sky in a different dimension of the universe heading toward that bright light as one evaporates into a tuft of “essence” and slips into eternity.  Maybe though Rabbi Amy is right, that it works a little different.  Instead, the end involves the knotting-off of the knitted together of the two into a completed US.  It becomes a finished union so that what leaves isn’t the love, nor either the other half.  The soul of the other stays.  Instead it is only the physical manifestation that leaves.  The love never does

It is worth the listen of Rabbi Schwartzman’s 10 minutes:  She ends her sermon with these words: 

                                         Love is why we are here.  


To that I say: Amen.
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What You Need to Know about Asbestos and Mesothelioma

6/12/2019

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By: Scott Raymond
 
Mesothelioma is a type of cancer that is most often associated with older men because workplace exposure to asbestos is the primary cause. But even though asbestos has been restricted in the last several decades, it is still all around and anyone could be vulnerable. It’s important to understand what this cancer is, what causes it, how to lower risk, and what to do with a diagnosis of mesothelioma.
 
What is Asbestos?
Asbestos is a mineral that is also a human carcinogen. It is a natural substance that has been mined and use by people for millennia. It has a number of properties that have made it useful for many applications: strength, flexibility, heat and fire resistance, electrical resistance, and chemical resistance. While it has long been used in human endeavors, it wasn’t until just over 100 years ago that asbestos was used extensively.
 
Industries like construction, insulation, shipbuilding, manufacturing, power generation, heating and boilers, and many others relied on asbestos to insulate, stop the spread of fire, and make materials stronger without adding a lot of weight. Anyone who worked in an industry with a lot of asbestos was put at risk for developing mesothelioma.
 
How Asbestos Causes Mesothelioma
Mesothelioma is a cancer of the mesothelium, which is a thin, double-layer of tissue that surrounds the body’s organs. The most common type of mesothelioma is pleural, the kind that begins in the tissue around the lungs. Small, needle-like fibers that come loose from asbestos can become part of the dust in the air and on surfaces. A person exposed to it in this way may inhale or ingest these fibers.
 
The fibers then get stuck in tissues inside the body and cause damage. Some people will then develop cancer as a result of this damage, although the signs and the diagnosis don’t usually come until a few decades after the exposure. Asbestos can also cause lung cancer, some other types of cancer, and a lung scarring disease called asbestosis.
 
Symptoms and Types of Mesothelioma
The most common type of mesothelioma is pleural mesothelioma. It causes symptoms similar to lung cancer and other lung diseases, making it difficult to diagnose. Symptoms include shortness of breath, chest pains, a persistent cough, and difficulty swallowing.
 
Less common is peritoneal mesothelioma, which begins in the tissue around organs in the abdomen. This type causes abdominal pain and swelling, a feeling of fullness, constipation, bowel obstruction, diarrhea, weight loss, and anemia. Pericardial mesothelioma, which affects the tissue around the heart is very rare and causes difficulty breathing, heart palpitations and irregular rhythms, chest pains, coughing, and shortness of breath when lying down in particular.
 
Reducing Risk
Far few people are at great risk for mesothelioma today. But, asbestos is still used in some industries and materials, although in a much more restricted and limited way than in previous years. Anyone working with or around asbestos has to be told about the risks, and trained with and given appropriate safety gear, all of which reduces the risk of harmful exposure.
 
Asbestos is also still present in many older buildings. It can be found in insulation, siding, roofing materials, flooring, adhesives, wallboard and plaster, sound- and fire-proof materials, and materials used in and around furnaces, fireplaces, and stoves. It is important for anyone living in a home built before the 1980s to have an asbestos assessment done by a professional abatement team before doing any home improvement work. Renovations, even small ones, can disrupt asbestos and cause exposure.
 
Treating and Managing Mesothelioma
A diagnosis of mesothelioma can be hard to swallow, as this type of cancer is aggressive and often caught only in the later stages when it is difficult to treat. Management of the illness usually involves some combination of surgery, chemotherapy, and radiation treatment. Newer treatments are being developed, but are not yet widely available or proven to work for everyone.
 
If you or someone you care about gets a diagnosis of mesothelioma, it is important to find an expert in the field. This is a rare cancer and most doctors and even oncologists never see it in their patients. A team of professionals in oncology, surgery, and mesothelioma in particular can help give you the best options and odds
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NATIONAL CANCER SURVIVORS DAY 2019                                               The Love-Partner Journey

5/30/2019

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June 3, 2019 is National Cancer Survivors Day. A day very important in my life, the husband of Susan, who celebrates 2019 as her 19th year of survivorship. 
    
Susan was diagnosed in early 2000 with Stage 3 breast cancer. That diagnosis began a journey that has changed the course of both her and my life, and in very dramatic and different ways.

What started out as a “just check it out, it is probably nothing” suggestion by Susan’s internist who felt “something funny” during her routine annual exam, became over the course of six months a diagnosis of Stage 3, “triple negative” (they didn’t use the term then) breast cancer.

On May 2, 2000, Susan underwent a radical double mastectomy.  Cancer was found in 7 of her lymph nodes, and during her very first examination by her oncologist, a post-mastectomy lump was discovered on her chest.  It wasn’t supposed to be there.

It is hard to describe the darkness of that time, at least for me.  The lights-went-out.  Having lost my mother to breast cancer and Susan her mother as well to the disease, it was clear to me how this was going to end.
Of course, 19 years later, I have been proved wrong ----so far. 

The impact on our lives has been enormous.  On one hand, Susan is a model of stoic determination to do everything in her power to survive and thrive.   From the day of diagnosis until today Susan’s focus is on maintaining a stable, joyful existence.  She is awesome. 

Me?  Well for me my entire life has been transformed.  Something happened that I still do not fully understand nor can I adequately describe, though I now know I am not alone.   Survivorship, I have learned is not only a journey for the person with the cancer, it is also for all of those who exist in the circle of love for the cancer survivor. 

The story of facing the loss of someone I love has become a journey of discovery and meaning.   It has manifested itself in a written document, a play called The Actual Dance.  With the help of acting coaches, improv classes and a talented “dramaturg”, I wrote a play and have been performing it now for six years.  It has become my life purpose.

The Actual Dance tells the story of the love-partner in the cancer journey, from diagnosis through the survivorship process.   The difference between Susan and me is that she will claim – and has in often dramatic fashion:

            “Sam, I don’t have cancer anymore.”  -- Perhaps that might be the survivor’s Gold Medal.

Me, well for me, I listen.   You see my experience during her cancer was to figure out how I was going to be able to hold Susan as she took her last breath.  How was I going to be able to interact with her as she transitioned from this life.

I learned what love really means.  I have come to believe that two people can in fact become “soul mates” – meaning that our souls, our life-forces, our breath are intermingled, as I say in the play, “Each, and equal half of the other.”

My life since then has become, in part, one of listening.   The metaphor of The Actual Dance – the ritual of holding the one you love as they take their last breath – is real to me and I think many of the love-partners of people who have or have had cancer.

To us, Survivorship means listening, another metaphor for waiting, listening for the sounds of an orchestra that plays whatever song we – Susan and I—will want to hear as we hold each other and move onto an ethereal ballroom dance floor, dance, swaying in each other’s arms,  until she disappears turns into a white wisp of cloud that simply disappears.

Even today, I wait, and I listen for the orchestra that appears only when it is needed.

As the surviving love-partner I listen: “Is that them (the orchestra) playing?  Are they back?  Is the cancer back?  Even today, 19 plus years later I listen, I listen with my heart where my love sits for the every so slight change in the balance of the Universe that will indicate that new and different orchestra has been called to form.”

​**** 
            The Actual Dance has been touring the Untied States for six years.  It has recently been adapted to be performed by Chuk Obasi reflecting the journey through the eyes of an African American actor.  The Actual Dance with Chuk Obasi will premiere in Washington, DC as part of the DC Black Theater and Arts Festival on June 23rd and 24th.  Information is below.  Tickets can be purchased by clicking here:
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Is there a word for that?

11/21/2018

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The Actual Dance, the play that I wrote and perform is about one of the most difficult moments in life.  Confronting the anticipated loss of a person that we love most in this world. 

The show is an autobiographical theatrical version of the journey I took in the year 2000 as Susan went through advanced breast cancer.   She is an unlikely survivor though.  In that year --- now almost 19 years ago – we didn’t know that she would be a survivor. In fact, there were moments when everyone “went dark” – that is the medical community went dark.  I could tell by their looks, their voices and their suggestions that they believed that Susan would not survive.

November is National Family Caregiver Month, a time when the nation gives thanks to those who family members give of themselves in time, money and energy to care for family loved ones.

The Actual Dance has been referred to by my friend Reverend Greg Johnson as “another face of family caregiving.”   And of course, and as usual, he is correct.   Among the many things that I had to do in 2000 was to learn how to keep Susan safe and supported in the hospital and at home as was undergoing treatment.  I learned how to empty the “two small plastic bulbs that hung of either side of chest, filled with a red liquid.”   I learned how to give her injections while we were traveling to keep her red blood count at the right levels.  I made sure she could get her medicines, and I would cook and do other things that normally she did.  

But that is NOT what The Actual Dance is really about.  If only it were.  No. The Actual Dance is about a different journey – the existential journey of facing the crushing pain of the loss of the person you love most in the world.  In the play, and in my case, it was Susan, my wife of then 33 years.  The person who I had come to view as my soul mate and that her loss would be the loss of half my own being.
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How do you do that?  That is what The Actual Dance is about.  And it offers some answers, though the answer is unique for each person going through this ritual.

What I have realized is that the word “Caregiver” is a catch-all that is not useful to describe or identify the role of love-partner.  There is not, as far as I can tell, a word for role.  For the moment I use the word “love-partner,” yet I continue to wonder if there isn’t something better.  

The absence of a word also suggests to me that the role itself is not well recognized in our society. I say that knowing that in most hospitals there is a “Chapel.”  Indeed, it may be that the medical world looks upon this part of journey as not their responsibility.   They experience the “other person” at the table as a caregiver or more coldly the person with the “medical power of attorney.”  Perhaps they do so because this is a part of their job that is too hard to deal with. In the name of objectivity or just because they must go on to the next patient that it is necessary to compartmentalize and not confront that unfolding part of the love-partner’s journey.

I have also come to believe that a fuller recognition of the love-partner as the love-partner has something to offer the medical professionals.   They too are human and experience the full range of human emotions.  Being in the presence of intense emotional trauma itself is its’ own trauma.   Medical professionals in my experience fight to keep the “game-face.”   Yet they too walk out of the room, turn the corner and cry.
  
I am looking forward in 2019 to engaging the various organizations and medical venues to explore this conversation.  Already my performances at Medical schools such as University of Virginia and Johns Hopkins, and hospitals such as MedStar Washington and Memorial Sloan Kettering have shown me how deeply medical professionals and caregiving professionals themselves are affected by the love-partner’s journey.

So, I think a first step is coming back to the question of finding “a word for that” role in the journey.  I think once we can name it, we can begin to address it more deeply and compassionately for everyone involved. 
 
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    Sam Simon

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

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