TAD Blog - The Actual Dance - a one-man play and story that explores what love really means

The Poetry of The Actual Dance: Hollow

4/10/2020

We always end up in the same place – standing alone in the center of the universe – truly alone.

The Actual Dance is the ritual of being with the person you love most in life as they take their last breath. It is indeed a beautiful, intime and elegant goodbye. It is the journey of two people who love each other so deeply their souls become entwined. At the end, the soul of one of them slips into eternity.

It is the play I wrote as I imagined the need to hold my wife Susan as she was supposed to succumb to her breast cancer. An end, as hard as it was, with beauty and dignity, of an elegant good-bye.

The first performance evoked a response that was not anticipated. “Beautify and dignity, you say.” Wrote a reviewer. “What about the shop owner shot in the throat gurgling blood as he lies dying on the street? His wife and kids at home. Where is the beauty and dignity in that?”

A provocative and difficult question. It helped me understand more deeply the meaning of the work I had written. The ritual – the actual dance – of losing someone we love happens no matter how the loss occurs. One is the elegant version –the chance to hold and be present for the person you love. Then there is, in effect, the phone call. The chaplain knocking at the door. News on television of the shooting at the grade school where your child is a student.

The “dance” -- if you will – still happens. In each case, we come to terms with the most difficult moment or event in our lives. Confronting the loss of someone we love in the world more than anything else. It is just different. We always end up in the same place – standing alone in the center of the universe – truly alone. Here is the poem I wrote and have now edited. It was written first in 2012.

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The Poetry of The Actual Dance

4/3/2020

It imagines the possibility that souls – essence of two people – can become literally, physically intertwined.

In honor of National Poetry Month, I will be sharing some of the poetry of The Actual Dance. These are poems, most of which I have written, are part of the story of The Actual Dance.

We will also be inviting other poets to share their work around themes of love and loss and resilience. There will also be interviews using the technology of Zoom that will allow participation.

The Actual Dance for a reader who might not be familiar is the play I wrote in 2012 and which has been performed hundreds of times since then. If you are reading this blog you are probably on the web site. I hope you will explore.

The Actual Dance is a love story – the tale of my journey as my wife, Susan, was diagnosed with advanced breast cancer. The doctors became convinced she was not going to survive, and her prognosis became steadily worse. I then had to prepare for the worst. The play is the story of that preparation. Spoiler, she survived, and we are going to celebrate our 54th wedding anniversary this year.

“The Actual Dance” is also a metaphor for the universal ritual of end-of-life. It imagines a place in the middle of infinity where there is a giant ballroom and an orchestra. There is a moment when the orchestra plays the song of our hearts. During that moment Susan would evaporate out of my arms into a bright white light.

The first poem I’m sharing with you this month is called US. It is the beginning and the end of the story. It is about what love really means. It is what I have come to understand how Susan and I – and I hope others who are in love – are connected.

It imagines the possibility that souls – essence of two people – can become literally, physically intertwined. We move from two to one, not necessarily in body or mind. Rather in soul. We are each and equal half of the other. Our essence has become intertwined. Is it because we are ‘meant to be’? B’shert is the Yiddish word for “meant-to-be.” A destiny. Or, is it something we became in time through ongoing intimate engagement and commitment? Or, is it something else? You decide.

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SEPARATION

6/22/2018

There are certain thoughts or images that we do not allow to enter our minds. They are our worst fears. The thing we cannot imagine we can cope with or handle. So, we just don’t think about them. We avoid possible triggers. Movies and TV shows about these ideas or thoughts are avoided. We change the channel. We don’t buy “those books.”

Then something happens, and we have no choice. My “something” was in 2000 and Susan was diagnosed with breast cancer. During the year her diagnosis became grim. I had to confront my worst nightmare: I would have to hold Susan’s hand as she took her last breath. I have since written a play about that time, which if you are reading this blog post you probably know, called The Actual Dance.

The scene in the play is when I step forward and speak the words: “I cannot imagine that I can do what I know I have to do.”

My play has a happy ending. I didn’t “have to” do that. Susan has recovered and is a long-term survivor of her very aggressive and extensive breast cancer. She is an outlier in probability terminology. She isn’t supposed to be here. With no better explanation than the grace of faith in something beyond us, I do NOT know what it would be like to be torn away from the person who was destined to be my soul mate in life. Who, in the play, I refer to as “the other half of my whole.” Today, we are about to celebrate 52 years of marriage.

It is through this lens that I now am experiencing the current national upheaval over the separation of children from parents at our border with the prospect of the parent never seeing the child again. I wonder if there is a ritual for that. The metaphorical “Actual Dance” is about the loss of a person with whom you have had a deep love relationship. It imagines the ritual as waltzing in a brightly light Ballroom surrounded by everyone one you have ever known and loved, not just in this life time but in the generations before and after, wrapping you with their love as you elegantly and boldly dance to the tune of the song of your collective choice as your life’s partner slips away from your arms into that white light of eternity.

Of course, sometimes it happens differently. The phone rings, there’s been an accident. A shooting. The unimaginable becomes real as you race to the scene or to the hospital. Yet ultimately this is an eternal cycle and we seek to find a new wholeness in life without that loved one.

As we experience the separation of children from parents at our borders a new and different dimension to the horror of an “unimaginable thought” takes shape. In the play the opening scene portrays THE moment, and the line is: “There is an end to the music, there is an end to do the dance. …. The ballroom sits achingly, intolerably empty, silent, almost in black and white....Hollow .”

What we have now, though is the intolerable situation of not-knowing. What could be worse than the loss of the loved one? What could be worse than holding your soulmate, your life-partner, your spouse, your parent …. your child as they take their last breath?

I suggest what is worse is someone taking them away from you and you never knowing their fate. If they are discovered and within a few weeks or months parent and child, husband and wife, are reunited there will be joy. The pain one could argue is compensated with an ecstasy of a happy ending.

My experience in life does include being in the company of a dear friend in the days after the loss of a child. It was and still is the worst pain that I have ever seen. I want to say even touched. I could feel the soul of another human being cry with unending pain. And in the mirror of life that lets us look back more than 20 years we get to consider the post-loss journey that eventually emerged even from this tragedy.

Separation I think is different. I do not have the experience nor am I in relationship with someone whose soulmate has simply disappeared: Ripped away with only unrequited hope for return that must be so often unbearable. There are parallels in war, of course, of those who are missing-in-action. Perhaps the pain is similar. And I think so much greater, because there is always a hope that gets dashed anew again and again. Maybe as often as the dawn of every new, lonely day.

My heart breaks for what I see. My soul wonders if my own redemption is jeopardized by a complicity of living in the time and in the place that perpetrates this horror.

COMING AND GOING

5/1/2018

I was walking today with my friend Bob. We just had lunch, sitting outside a diner on the first warm day of Spring.

I’ve known Bob for 48 years.   Last year Bob’s wife Nancy passed away, seven years after her first diagnosis with breast cancer.   Bob saw The Actual Dance this past week and we needed to talk.

Walking back from lunch toward Bob’s house we walked along the opposite side of the street than when we walked to lunch. It reminded me of how different scenes look to us when we drive in the opposite direction to return from a car trip as compared to what they looked like to us as when we were going.

It suddenly struck me that this is a metaphor for our lives.

Some might call it wisdom, others just old age. Yet it seems a fundamental truth that the “scenes” of our lives at some point change and are entirely different than they were before even though we are on the same road, just headed in the opposite direction.

When are we “there?” When do we start the trip back? What do we call that point?

It is a point in our lives when we understand in a fundamental way that we are returning home. Life is a single road. There are only two directions. In and out.   Same “existential road.” It begins as a miracle and ends as one.

It just looks entirely different. We now have our experiences, our relationships our situation, whatever it has become. Now we are going back over that same route.   Except we now know how precious each moment is; how miraculous each breath; how beautiful even the ugliest weed.   Maybe we won’t ever see this or that again, nor marvel at how we can just ask Alexa how to spell “expialidocious!” And she does!

We don’t always know which direction we are headed. Yes, one can argue that we are always headed one direction. Life as only a journey from birth to death is a truism with no meaning.

I think coming is “becoming” – it is a discovery over time of our purpose and loving relationships. Up and down and around different corners, occasionally small dents and for some there are large crashes.   Yet we are on our way – were coming – becoming what we will be in this world. Perhaps what we were "meant to be."

Then at some point we know we are going. There is the road back, and it will be over similar territory. It will just look and feel entirely different.

I wonder if we know when we are headed home or if that too is only discovered as we are about to get there?

Maybe true wisdom is knowing in which direction we are headed? Coming or going?

SHAPE

3/2/2018

I had the privilege to perform The Actual Dance at an independent living community last night. It was probably close to my 175th performance over the last 5 years, not counting all the rehearsing I do. And yet once again, I learned something new. This time from a brief conversation with a couple from the audience after the show.

The Actual Dance, for those not familiar with the show, is about the ritual of facing the loss of the person you love most in this world to cancer. The show of course has a surprise and happy ending.

Yet for many people, and especially seniors, the ending is different. Many in the audience last night had been through the loss of a spouse.   It can become difficult for them to watch a piece of theater that so realistically replays some of the worst times of that journey. Sometimes even too difficult and people have had to leave the theater.

Last night with an audience seeming in their mid to late 80’s I could tell from the stage that a number of people were becoming uncomfortable. A few left. I wondered in my own mind if it wasn’t unfair because I was weaving a story where the expected outcome suddenly doesn’t happen. Can a happy outcome be unfair to people whose own experience didn’t get so lucky? I think probably yes and will now let audiences know before the show starts that it has a happy ending.

Yet that isn’t what I learned. Rather, the couple that came up to me after the performance were clearly struggling with what they had just seen. Each had lost a spouse many years ago, and the show had them reliving that experience. And then they said: “Thank you.”   Even after many, many years the experience – the ritual – of going through such a loss can be and often is chaotic.   The mind focuses on specific moments, words events that are seared into memory.

What The Actual Dance did, I was told, was to give a form or a shape to what happened those many years ago so that it made more sense to them. Even a quarter of a century later. The shape of the experience was more coherent and meaningful with the gift of words said out loud – words that usually are not given voice. Instead we try to put the entire experience away somewhere not to be recalled.

Theater in some ways is meant to give voice to the darkest thoughts and fears we have in our heads. A gift perhaps of The Actual Dance that I didn’t understand is that it can help resolve even long ago experienced pain and grief by helping to form the chaos into a coherent shape that gives understanding and comfort.

The Shape I think becomes apparent from the line:

   “I understand now that the actual dance will be the ultimate consummation of our love.”

What am I? Who am I?

1/30/2018

What am I? Who am I? When I sit in that chair at that time?

Really for me it is “What was I” since it has been almost 18 years. I think it is sort of like a secret club, if you have been there you know what I mean. We never forget. What was I? And for those in that chair at this moment, what are you? Who are you?

I let this question go by for a long time, in part because it was convenient and in part because I didn’t know better. I do know better now. The question has an emerging urgency in me as I engage the world of love and loss through activities that surround The Actual Dance.

If you are reading this Blog, you probably know the context.   The play I wrote and perform now for five years about having been with Susan – now my wife of 51 ½ years – as her breast cancer was supposed to kill her.   The play, The Actual Dance, is the voice of the person in that yet to be named role as they prepare for the loss of the person they love most in the world.

The Actual Dance addresses the question: How do you do that? The line in the show most illustrative of this role comes when the character stares out into space and almost sobs: “I can’t imagine that I can do what I know I have to do.”

Who is that person? When your love is so deep that your soul and that of the one you love are intertwined, each an equal half of the other.   Who is that person that is going to be spiritually split in two when one-half of who they are disappears?

Society has lots of different words or adjectives. Caregiver is a term and role that is often used to describe that person.   Or it might be the relational name: husband, wife, parent, child, friend.   Yet none of those work.

We all have multiple roles in life, often played at the same time. We relate to the world in multifaceted ways. So yes, I can be a caregiver and a husband to my sick wife.   But that isn’t the person I am when my heart is breaking, when that “half of me” that is also her leaves this earthly dimension or plane.

Yes, I will have her or him in my heart as a memory, but it is not the same thing. Life is not a lingering feeling nor a remembered first date. Life “exists in a tangible form” and it will exist in this world as we know it only so long as the person “lives.” It exists and goes somewhere else or nowhere else depending on your theology and faith; but it does not stay here.

When the other half of our whole leaves us we become broken. I have written a fair amount the process of becoming whole again.   Today my question is, “what am I as I could through the process of breaking in half.” What am I as my soul or heart is breaking?

So maybe someone who is reading this can help. What is the word for that person. Who was I when the “doctor’s fingers slid along the lips of the incision point” on Susan’s bare chest post double-mastectomy, “and he suddenly stops” and announces a post-surgery lump that he and all the other doctors think is a marker of a rampant spread of the breast cancer?

Give me a name please? Give me a word? Who are we then? What are we then?

Breast Cancer Awareness Month Blog: Day 19 The Actual Dance

10/19/2017

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 19: The Actual Dance. “There is a dance. A dance that one day each and every one of us will dance. . .. When it is my turn to dance, I want to dance with the person I have loved most in the world; and if it is her turn first, I want to be her dance partner.”

These are among the opening lines of the play. And of course, “The Actual Dance” is a play. It is also a metaphor for the ritual we go through at the end-of-life. It imagines a beautiful, elegant ballroom filled with everyone you have ever met, ever known and ever loved in your life. It suggests that among those “watching” this “dance” include “generations before us” and maybe even “generations yet to come.”

The Actual Dance portrays or imagines an elegant and lovely good-bye. It starts at the instant the possibility of death becomes a possibility in our mind. It never really ends. (More on that in another blog.)

In reality The Actual Dance is a ritual that is not real except that it is.   Or at least it was for me. I have come to understand from others that it is for them as well.   As we engage in this unique and ultimate task, we some sometimes need to be somewhere else. That place is where The Actual Dance happens in a different reality – a different place perhaps created in our minds but as real and as tangible to us as anything or anywhere else.

There were moments in my journey and as portrayed in the play where one moment I am in Susan’s hospital room and the next I’m somewhere else, watching the musicians who are going to play the music for our dance mount the orchestral riser.

As I said yesterday I often found myself “being alone” – the stark and elemental terror of being with Susan as she would take her last breath, I need to leave the reality of the moment and find somewhere else to be.   That place I will describe tomorrow, but it was real to me and I now think it is “real”

In reality, a ritual that is not real except that it is. It is the place we go to when we think we can’t do what we know we have to do.

Stat of the Day: Brest cancer is the most common cancer among women worldwide with 1.7 million new cases diagnosed in 2012. This according to the World Cancer Research Fund International.

Task of the Day: Start a “sacred time” practice. Every day some time to imagine a “safe place” for your being or your soul. Where do you go if you need to confront the unimaginable in your life.    Talking about or even acknowledging that there is a “place” we go and feel as a sacred moment is difficult.

Resource of the Day: A wonderful web site by Jeanine Walton called Healing Now with alot of information about spirituality and imagery

The Actual Dance: Performances.   Donate.

Breast Cancer Awareness Month Blog: Day 17 Who Decides?

10/17/2017

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 17: Picking a Doctor: “I have a question for you? How the hell do you pick a cancer doctor? The Actual Dance

I have recently changed this line in the show and how I present the scene. It used to be just: “I have a question. How do you pick a cancer doctor? This is not an easy question." Now, it is "How the hell do you pick a cancer doctor?"

Picking the oncologist for YOUR CANCER is on continued reflection one of the most difficult and important steps in the cancer journey. The doctor him or herself, their team, the hospital affiliations are all factors that can make a difference in YOUR outcomes. It might just be a life and death decision. Indeed, it will not be until years later that you can know if the decision was the right one.

To add to the complication – when it is your spouse that is the patient – what is you’re the role? Who decides? Is the choice of a “cancer doctor” in a marriage a mutual decision?

            In the play and in life I resisted the urge to take control of the process – a typical male response – and I came to understand that “I am not the director. No, my job is to be the supporter.” I resisted a very strong urge to take Susan to a major cancer center. Even as we were hearing the worst news and dire prognosis the last thing I wanted to add to our marriage was a “fight” over which cancer doctor to use. “So Susan’s choice” are the words from the play.

            I have been proud of that decision. Perhaps a bit righteous in my telling how “I let” Susan pick her own doctor.   It has been pointed out to me though that my view of this part of the story is colored by the fact that Susan has survived. Had she not, I wonder how guilty I would feel for not having insisted on her seeking other opinions and treatment?

            There are no easy answers on the cancer journey.

Stat of the Day: The CDC reports that in 2014, 41,211 women and 465 men in the United States died from breast cancer! Numerically up slightly from 2013.

Task of the Day:   It is October – breast cancer awareness month. Be part of the process by doing your part. Today put on something pink if you are going out, wear a pink ribbon or change your Facebook profile to include a pink ribbon. Here are some images

Resource of the Day: iCare Do not pick a “doctor” pick a team. iCare presents a new approach to cancer treatment that coordinates patient, physician and research that are expert in the specific cancer and diagnosis of each patient.

The Actual Dance: Performances.   Donate.

BREAST CANCER AWARENESS MONTH BLOG: DAY 12 -- For Men

10/12/2017

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.

Day 12: “I can’t explain or maybe better said I cannot justify why, but I cannot leave Susan alone. My job is to be here with her in this room. My cot sits near the floor on the right side as you face the bed. In the opposite corner on the same side of the room I set up the table and a chair as a desk for my computer so I could work and be (in the room) at the same time.”   The Actual Dance

There is no training for this journey for most people and especially for men. “How do I do this?” Be with a wife or mother or child as they undergo treatment for a life-threatening disease. In Susan’s case of advanced breast cancer I didn’t even think to look for a how-to manual. I just did "it." For a good part of the journey I served in the role of what I call a traditional caregiver, especially during the early medical procedures. A “laugh line” in the play is “Hell I did not even change the kids diapers and now I am helping Susan vomit.”

The Actual Dance is a play about many things. It is a love story about two people just out of their teens who get married. And it is about breast cancer. And it is a male caregiver’s story. A caregiver’s story that uses theater to demonstrate that when confronted with the unthinkable in our lives we can do the unimaginable.

Stat of the Day: 40% of family caregivers are men, meaning there are about 16 million men family caregivers according to AARP.

Task of the Day: Just-In-Case-List.   Now this isn’t a will or an evacuation plan for a hurricane or a fire. It is a check list for if someone you love and live with is diagnosed with cancer. Who to call? What are the policies at your work? Insurance? A lot of that can be done early. Just stop right now and start a just-in-case list. Here are some resources and ideas. Book Blog

Resource of the Day: Check out Men Against Breast Cancer. A handy Breast Cancer Action Plan and Caregiver’s Guide for Men, which is free to download.

The Actual Dance: Performances.   Donate.

BREAST CANCER AWARENESS BLOG: DAY 8 --SINGLE OR DOUBLE

10/8/2017

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.

Day 8: Mastectomy. “The doctor says she needs a mastectomy. I am the one who asks about the other, the left breast. Clearly there is no way to know if there is any cancer in the left breast because in the right breast there wasn’t even a tumor. Just cancer. We all agree, a double mastectomy.” The Actual Dance

          Treatment options have changed in the last 17 years.   Chemotherapy is often given before any surgery. For us back in 2000 it was different.   The doctor was clear, the breast needed to be removed.

          As we sat at the table digesting the doctor’s words, it became obvious to me that a double the other, the left, breast also needed to be removed. The mammogram clearly missed the cancer in the right breast, so how could we know if it existed in the left breast. And there wasn’t a lump in the right breast, just breast tissue with cancer. Any biopsy of the left breast would be just guessing and could easily miss the cancer.

          We all agreed then, a double mastectomy. It seemed obvious and easy for me at that moment. As the date for the surgery approached, I started thinking a lot about what she was going to look like without her breast. My internal dialogue was just that. I remember it precisely like that… “It doesn’t matter because it is what we have to do.” I wouldn’t be honest if I didn’t wonder if she was going to be less physically attractive to me without them, and I admit in the play, “I wonder if it would be different had her prognosis been bright.”   Now 17 years later, I can say that I have never regretted that decision for a second.

Stat of the Day: According to a study, for women who have strong breast cancer history in their family there is an 8 to 24% risk of cancer appearing in the second breast within 20 years. That is compared to an average 20-year risk of 4 to 8%

Task of the Day: Have some fun. Check out the role of breast in sex, for men and women.   You never know when that opportunity will be gone. Check out some different views on the role of Breast in Sex. Here from a women’s magazine. Here from a men’s magazine.

Resource of the Day: There is growing trend today in double mastectomy. Here is an article on this trend and factors to consider before making the decision.