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If I cannot give consent to my own death, whose body is this? Who owns my life? ~ Sue Rodriguez (42-year-old woman with ALS)

In my work as an advocate for those who are facing death and wish to have choice on how they will die when death is imminent, it helps to be walking the walk myself, to understand on a visceral level what we all are facing. After all reasonable measures to extend life have been exhausted, there is a point where fear of dying and facing the ultimate grief can kick in and heroic measures may be utilized to keep the body alive at any cost. Some of these measures include: intubating the trachea for ventilation, CPR, inserting a nasogastric tube that goes through the nose into the stomach for short-term nutritional support, and a gastrostomy, a feeding tube that is placed surgically through the stomach wall for long-term nutritional support. (I heard a doctor who personally had this procedure say that intubating the trachea is one of the most painful procedures one can have.)

Heroic measures is a legal term that to me is anything but heroic when utilized in avoidance of facing the inevitable, when a person is in the dying process. If these procedures would improve the person’s health or a person chooses this for themselves regardless of the outcome, I would completely support that personal choice. However, utilizing these procedures to avoid feeling the feelings that facing death evokes can actually prolong physical suffering and support our cultural fear of death. I’m not sure what is heroic about that. Often people feel compelled to do something, because feeling powerless is excruciating. I’ve been there with beloveds. It is not easy.

In order to dispel our cultural fear, talking about one’s impending death with our beloveds is essential. It is surprising how many people don’t. If the family can be courageous enough to face death straight on, which requires feeling our feelings and being vulnerable together, we can enter the Sacred together.

Many states have passed a law granting a person who is dying the right to choose how they can die to avoid needless suffering. The difficult discussions many people are having when facing their own mortality, or the mortality of a loved one, now includes the consideration of using MAID, medical aid in dying, if they meet the rigorous criteria for eligibility for this medication. Considering this choice can be less ambiguous when one is dying from an acute condition than when the condition is a progressive, degenerative neurological illness when end-of-life suffering can have a very different quality. With an acute condition like cancer, there is a more predictable trajectory depending on the aggressiveness of the particular cancer. With more chronic conditions such as COPD, ALS/MS, or others, there is more of a gradual decline, but during end-stage can have what seems like endless agony.

A DNR, or do not resuscitate, also known as no code directive for allowing a natural death, in my opinion, is a necessary paper to consider for anybody who chooses to exercise choice at a time when they are most vulnerable. I would consider it mandatory if you have a chronic illness that might require a 911 call and your autonomy is as important to you as mine is to me, where quality of life is more important than quantity. Most EMTs know to look on the refrigerator for a DNR. Many people don’t realize they can choose the level of suffering they have to endure. It takes a lot of Presence to be with an emergency in the moment and, if life-threatening, to move through it consciously. It is a big ask if one has not taken the time to contemplate our impermanence before things become emergent.

There is no right or wrong in my opinion. One must process through this rigorous part of the journey the best they can. At a certain point I decided I had lived in a victim framework long enough and I took my power back and got into the driver’s seat of my life, metaphorically. I began to realize that though I have much life force and a clear mind, my body was declining considerably and I needed to come to terms with the inevitable. It helps that I have a strong belief that our physical life is temporal and our soul is eternal. This understanding was hard earned. For some, letting go and letting doctors or family members make the decisions might be exactly what they need to do. It is not for me to determine what sort of death other people need.

Nobody who really knows me would say that I am a quitter.

Once I realized in 2007 that I was going to live alone with this degenerative, life-threatening illness in this harsh and magnificent desert town in Colorado, I gathered my resources, internally and externally, and began the sacred art of creating my life how I want it to be. Living alone for 18 hours a day and only being able to move from the neck up requires much creativity and fortitude, for myself and the caregiver. We have done it with Grace and much humor. It’s been a joy and a joint adventure with my caregivers and my family.

A few months ago, in a circle of women I had been meeting with for over ten years and with whom I have had a profound level of intimacy, I stated without fanfare that I felt complete. It was a strange sensation and a communication that came from an inspired, deep place inside mySelf. In a way, it felt like a proclamation. I was sharing my feelings about having the prescription that will release my body from the accelerating suffering. I realized that making that decision will take all of the courage I have inside me and, to me, that is true heroism.

Ironically, my digestive system began shutting down soon after this talk. (You know it’s bad when the hospice nurse cries for an hour giving you the diagnosis of gastroparesis.) I felt shock and grief stricken and wondered what happened to the part of me that felt complete. It’s like amnesia set in and my emotions took over. All of my human grief from living a full life arose: all of my attachments to the most important people to me arose, as did my attachments to my identity as a person of service to love, and even my attachment to this beautiful, struggling body; it all surfaced to be processed once again.

As I am writing, an adolescent mule deer peeked into my window. First, I saw velvety antlers and then a little face looked inside, curiously. It can’t be an accident that this young deer came at this moment, so close to my home, and peered into my window while I am writing this essay. The shamanic symbol for deer is that of gentleness, unconditional love, and kindness. The male deer, the buck, represents independence, purification, and pride. People have sought to identify with them ceremonially, wearing antler headdresses and imitating the deer’s leaping grace.

If you by chance connect with me in Spirit, you might notice me leaping gracefully through the clouds in ceremonial Joy. Rest assured that I will be finding a purer way to connect more deeply and in service to LOVE.
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Many immigrants do not talk about what they endured back home. They were fleeing that world, and when they left they didn’t want to talk about it because there had been pain and heartbreak. ~ Isabel Wilkerson, author of The Warmth of Other Suns

Altar To My Ancestors

Zayde means grandfather in Yiddish. The few stories I’ve been able to collect of my grandfathers’ fathers are scant, but tender, and the stories about the women in my family are even more limited. The photograph above is Zayde Rosenthal who became a widower and married a second wife.

I always felt strangely drawn to this photograph. Perhaps it was because my Aunt Paulie, Zayde’s eldest daughter sat at her antique Singer sewing machine and told me stories of the old country and their desire to come to America. Aunt Paulie came first and worked in sweatshops in lower Manhattan to bring her siblings to America. Although I felt riveted by the stories, I never detected any grief or had any idea about the trauma they carried, that is, until it all began to unfold for me last week.

During the White Awake: Before We Were White workshop (link in Part One), we were encouraged to create an altar to our ancestors. The purpose was to reestablish a connection that had likely been broken. Each individual’s journey during this process was unique, many perilous, requiring much courage to face the trauma that caused the disconnection, but all were deeply meaningful, filling in the dots of our ancestral stories that would have been lost forever. I was surprised how satisfying it felt to construct my altar and feel a yearning to learn more about my ancestors’ history.

Upon noticing my newly arranged altar, someone told me that I looked like my maternal great grandfather! Until then, I had never considered there might be a resemblance or even a direct bloodline between the strangers in the odd photograph that graced my grandparents’ central room in their meager Bronx apartment during the late 1950s. I was told that they had never left Eastern Europe – that they never made it on the boat. To have a photograph taken during that time period in Lithuania, they had to stand for a long exposure requiring a brace to hold their heads still. As I look at it now, almost 60 years later, I imagine the photograph being rolled up and carefully tucked under someone’s arm on a crowded boat traveling across the Atlantic seas. It was then framed in the Bronx, not far from Ellis Island, the port where my grandfather immigrated alone, at seven years of age!

All my grandparents traveled on the boat when they were very young. Three were immigrants from small villages (shtetls) in Lithuania. (Fiddler on the Roof, based on the stories by Shalom Aleichem, was an authentic representation of the villages in Eastern Europe.) My father’s generation was not allowed to talk about the old country, We are Americans, they were quickly corrected. They fled pogroms, the draft, and growing malignant anti-Semitism.

As I researched the villages where my grandparents’ were born, I knew that thirty years later 95% of the Jews would be exterminated in Lithuania. When I imagined what could possibly motivate a mother to put her 7-10 year old child, a mere baby, on a boat never to be seen again… it was just unimaginable to me. What horror did they predict, and why?

From what I read, it wasn’t just the Nazis that murdered Jews around World War II, but many Lithuanian collaborators joined in. It could be one’s barber, dentist, or middle school crush. Could these parents in the late 1800s possibly have predicted what would happen to their children thirty years later? What level of hatred must they have endured to anticipate this? And what did they imagine if they did not let them go? Were my grandparents actually protecting us by trying to erase their past and only look forward to their new American identity?

The workshop led us through ancestral recovery, a necessary step for the collective shift in consciousness mentioned in Part One. If we go back far enough into our family histories, we can find our own indigenous roots. When I began to scrape together the few stories of my family from the old country, I uncovered lumberers and herbalists. I also uncovered the roots of social activism born out of religious and cultural persecution that I would label as heroism. With courage and perseverance, we can restore the disconnection caused by ancestral trauma, and begin to restore wholeness to our family lineage.

I don’t mean to make this sound easy. I became so physically ill during this process that I wondered if I would survive the grief that was nearly more than this frail body could process. I did survive this life-changing process and will describe more in the Aftermath and Integration in my final essay of this series.

Here is a gift to begin the integration process. I must express a disclaimer that jumping into forgiveness before processing all of the grief, in whatever form it needs to be expressed, only leads to more suffering. With Heart and Help I trust I will eventually be able to lighten my heaviness. But, hey, there are no guarantees, are there? In my essays, I like to be on the other side of the Great Grief and speak from there. Not true this time.

For now, I will grieve and rage and sick it out, as I have done with all unimaginable catastrophes I’ve experienced through life. And I will await the shift that is ultimately sure to come and turn my worldview inside out, as most multigenerational or family constellation work does. And if I and my helpers have what it takes, healing will happen seven generations backward and forward.

Kuan Yin’s Prayer for the Abuser

To those who withhold refuge,
I cradle you in safety at the core of my Being.
To those that cause a child to cry out,
I grant you the freedom to express your own choked agony.
To those that inflict terror,
I remind you that you shine with the purity of a thousand suns.
To those who would confine, suppress, or deny,
I offer the limitless expanse of the sky.
To those who need to cut, slash, or burn,
I remind you of the invincibility of Spring.
To those who cling and grasp,
I promise more abundance than you could ever hold onto.
To those who vent their rage on small children,
I return to you your deepest innocence.
To those who must frighten into submission,
I hold you in the bosom of your original mother.
To those who cause agony to others,
I give the gift of free flowing tears.
To those that deny another’s right to be,
I remind you that the angels sang
in celebration of you on the day of your birth.
To those who see only division and separateness,
I remind you that a part is born only by bisecting a whole.
For those who have forgotten
the tender mercy of a mother’s embrace,
I send a gentle breeze to caress your brow.
To those who still feel somehow incomplete,
I offer the perfect sanctity of this very moment.

~Vera de Chalambert

 

 

 


“We each have distinct karma and basic elemental natures that shape our unique journey in this one, single lifetime towards that loving intention. But I think this is what we are about–to embody as much love from Source as possible while here with the cards we’re dealt.” -Kathryn Brady

unknownDuring a concert at my home I casually mentioned anger at my former husband for leaving our relationship of eleven years. The male musicians exclaimed in unison and perfect harmony, “I’m angry at him, too!” It was obvious that they didn’t even know David and the room broke out into laughter. The spontaneity of the solidarity surprised and comforted me.

Maybe I shouldn’t have been surprised. These musicians who had volunteered their time for a private concert on my behalf have known their share of heart breaks. The energy in the room was electric with empathy and love. The moment made me reflect upon that relationship, the relationship which would be my last partnership, with my last companion for this lifetime. It wasn’t that I was so sad to see him go, but more that I was so sad to let our life go.

It was in that relationship where I finally was able to realize some of the adventures I had always sought in previous relationships. David helped me to hold the container for a life full of adventures, like camping, horseback riding, long road trips and things I had never thought I would be able to experience. Now that I live alone in the wilderness, knowing many other powerful wilderness women, I wonder where that insecurity could possibly have come from. After all, I had ridden my own motorcycle to Key West, jumped off mountains in California on a zip line and learned to jump horses in my 50s.

Granted, David was a warrior in the outdoors. After all, he had been a geophysicist, a public school teacher and was able to operate any heavy machinery needed. He taught me how to hook up, load a horse and pull a horse trailer by myself. I had no reluctance to do so, in fact, I was excited to add this to my repertoire. In our life together, this skill was required.

David could fix anything. And when we connected, many of my things were broken and needed to be fixed; and fix them he did. David appreciated being helpful. What was strong and unbroken, however, was my heart and spirit having just spent three years recovering from a relationship so devastating that it forced me to reflect on the quality of all previous relationships. To do so, I had chosen to extricate myself from romantic relationships in order to focus on the most important relationship, the relationship to Self.

Right from the beginning of our relationship, I was upfront with David about the concerns around my physical body. Along with many of my material items needing to be fixed, I needed a breast biopsy and abdominal surgery for fibroid tumors. Ever since being a young child, I tended to somaticize emotional issues. This gave me much material to address psychologically and many physical issues to deal with medically.

David really tried to be helpful around my physical vulnerabilities, but he was much more capable around the mechanical items. His caring was never an issue, his ability to express that caring was considerably limited. In my opinion, and realize that I am not the most objective reporter, when partners in his life were physically and emotionally vulnerable, David left.

I’m not sure whether my children so vehemently disliked my former husband, because they perceived that he left me when I most needed him, or because he never really was able to connect with them on an emotional level. Perhaps both are true. In the spirit of not tossing the baby out with the bath water, I would like to honestly visit what this relationship was to me.

I met David at the Gurdgieff school during the early 90s when I was entering this work. We were with our respective spouses and I cannot say there was any connection between us beyond the surface level. Fast forward five or six years and two divorces, when he brought an at risk student to the mental health clinic where I was employed. Still, no connection beyond colleagues with the intention to save an adolescent from imploding. A few years later we connected at a play in our neighboring community. At this point he asked me to dinner and a movie. We were slow to connect, but there was something gentle and deep about him.

As I previously mentioned, I had just spent three years consciously turning inward for the first time in my life, forging a relationship with my deepest Self, something I had resisted until, as Anaïs Nin wrote, “…the risk to remain tight in a bud was more painful than the risk it took to blossom.” I wasn’t sure about this new person, but I was encouraged vehemently by others whom I trusted, so I continued to explore this connection.

I never really knew myself until I was nearly fifty, so how could I know what was deeply fulfilling in a significant relationship? I would suspect that most people know themselves better than I did. I was a slow learner, after all, my first husband was a Republican who told me the Holocaust never happened. How well could I really have known myself then? My second husband and I shared a deep love and grew a lot together, but he wasn’t wild about being outdoors. He would play racquetball, occasionally, serving with his left hand, which was accommodating, but his idea of camping was staying in the Holiday Inn. With both of these men I had my children for which I am tremendously grateful. And I had a beautiful stepdaughter who initiated me into the teenage years. They all enriched my life tremendously.

When I connected with him, David lived on a peninsula in a pristine Louisiana cypress swamp draped with Spanish moss in a house he built with no running water. Along with our outdoors activities we soon realized we both shared a deep love for horses. We began going on weekend field trips to visit different farms. We began riding and eventually purchased a horse for each of us. When the boarding expense became too great, we purchased a small horse farm in the neighboring village. When the commute became too difficult, for example, when a horse’s life was in danger and required instant attention from us and a veterinarian, we decided to move to a larger farm where we could live on the premises.

9We began boarding other people’s horses and developed a horse community. At this point in my life, surrounded by many animals and like minded people, riding and showing, practicing psychotherapy, driving weekly to sing in my interracial gospel choir in New Orleans, I was living my dream. Concurrently, I was being chased by an unknown specter, a progressive life-threatening degenerative illness. The weakness was progressing steadily as I tried to enjoy every minute I was afforded.

In all fairness, this was not a minor vulnerability. David had to retrieve me off the floor many times and fix many fences that I drove the tractor into when losing coordination. It was not a pretty sight and certainly not for the faint of heart. David was extremely strong, but this strength manifested on a physical level and what was being stretched was on the emotional level.

The majority of marriages with a degenerative, life-threatening illness end in divorce, especially if the husband is the caregiver. Regardless of why this is, it just is. In our situation, we waited too long to ask for help. We could not foresee the level of disability I would incur, not in our wildest dreams. And I was so focused on healing physically, that the alternative was not even an option for either of us. When we were married in 2004, I was already limping. My default feeling has always tended to be fear versus anger. I was terrified. I desperately wanted David to fix this situation and David thought that if he loved me enough, I would heal physically.

Never in my wildest dreams would I have realized that there was a greater healing possible. The wisdom I have accrued from finding the courage to face this challenge head-on can be summarized in this quote I wrote in my book:

“When we talk about healing, what does this mean in its greatest sense? Does it mean the body heals? Does it mean that we feel better? What I have learned in my journey, is that true healing means bringing oneself to wholeness, understanding the totality of our existence; finding love from the inside out.”

From this older and wiser vantage point, it is clear that I needed to do this curriculum on my own. I do not believe a curricula this demanding could at all be arbitrary. I have come to feel in my cells that this is for my highest evolution and for the evolution of those around me.

So, to set the record straight, we all have done the best we could. This invisible taskmaster has demanded it all from each one of us, including and especially my children who were unaware of my unspeakable demand during that accelerated time and forgiveness from that time is my prayer.

“The main thing is to be moved, to love, to hope, to tremble, to live.” ~Auguste Rodin

I had always wanted to paint, but completing my masters degree, birthing my children and establishing my career had taken central focus. When my children were in middle school, I enrolled in a painting class in Abita Springs. My instructor, Alexander, was a well-known Russian painter. He had an air of being accomplished, whatever that means. He believed that painting on other people’s paintings was a desirable, effective method of teaching. I, on the other hand, had a difference of opinion. I felt violated when he painted on my painting. Evidentially, this is a common dilemma in art school. When I complained, he told me people liked it.bottle 2

When you incarnate to work on a particular issue, your life becomes a microcosm that projects and amplifies this very issue, everywhere. It took until my third painting to realize that I could scrape his paint off my painting. I remember his surprise when he noticed I had done that. Obviously, people actually liked him painting on their work. In me, however, this elicited rage! Finding my own voice and not giving my power over to the authority had been a central challenge my whole life. When he noticed I had scraped his paint off, the words just simply came to me, “I know you can do it, I just don’t know that I can do it.” That was it. Handled. A lifelong issue can be handled in a moment when a critical mass has been reached and the student is ready. I thought I signed up for oil painting! Isn’t that the way?

black and whiteAfter that, he knew where I stood, I had marked my territory. My first oil painting in my life was of the cobalt bottle. I remember the awkwardness of painting the knife, be unending squares of tablecloth. I also remember when Alexander painted on my pear; I felt paralyzed. My feeble markings looked in adequate next to his. Isn’t this how giving one’s power away works? After all, this was my first painting ever. It would take two more paintings for me to find my voice.

Our next still life was a study in virtually black-and-white. What an interesting challenge. I had barely noticed the peach colored design on the background cloth, that is, until Alexander painted peach on my black-and-white. I had not even noticed the third color. That is, until I did.red

Alexander knew how to create a challenge. Our last painting had a red background. I thought it was loud and garish. Nevertheless, I was beginning to trust the wisdom in Alexander’s choices for the development of my newfound craft. The varying textures, the metal candlesticks and different fruits ended up being brilliant choices to go beyond my comfort zone. If you think my paintings are pretty good, everybody’s paintings in this class were as good or better than mine. I suspect that this class was a good fit.

red truck 2It was now time to embark on a solo journey, with the red Taos truck. I love trucks from the 50s and planned on painting a whole series on old trucks. Unfortunately, after the red truck, my father died and I began losing fine motor skills. There was no connection between these two events, because being with my father, holding his hand when he took his last breath, had been the high point of our relationship. This experience is covered in a previous blog titled “My Father’s Greatest Gift.”

I painted the doorway painting, but I was losing my patience along with my coordination. Nevertheless, letting go is not easy for me. I began my final painting, the blue truck, which remains unfinished today.doorway

So there you have it: my complete gallery. Contemplating end-of-life decisions, issues regarding my legacy and considering my loved ones, I have been going through all of my material items, weighing their importance, feeling much grief and letting it go to the best of my ability. I have decided to leave the red truck, my only completed painting, and to River, my grandson. Hope he will receive it with half the joy that went into it. The blue truck is to be for Luc. My daughter Casey has agreed to finish it for me. We have very different style, but she is a true artist. This became clear when she was only three years old, in her first art class, when she built a Madonna out of clay. Tika, her art teacher was amazed, but unfortunately, it exploded in the kiln while being fired.

blue truckIt is so difficult to hold onto the artwork we treasure throughout our lives. I have Casey’s self-portrait in plaster on the water feature and Jordan’s Buddha on the fireplace. There are numerous two and three-dimensional art pieces throughout my home. Jordan was so proud of his three little turtles that are on display in the bathroom. What will happen to all of this when I am no longer in this body? I can’t say that I won’t be here, because I believe that I will, just vibrating at a different frequency.

There will be no grave, no mausoleum. But my children know that they can speak to me anytime and they can always meet me by the river.

VISIT THE BLOG FOR MY NEW BOOK – MEET ME BY THE RIVER!

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Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. more...

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