You are currently browsing the tag archive for the ‘Crestone end-of-life Project’ tag.

Put a candle in the window… ’cause I feel I’ve got to move. Now I’m goin’, goin’… I’ll be coming home soon. Long as I can see the light. ~ Creedence Clearwater Revival

The A Team

If you haven’t been to a cremation in Crestone and you feel so inclined, you would do well to go, even if it is 10° outside. The love, the intention, and the ritual of the community will keep you warm. I learned that last Sunday when I left the house for the first time in a year and a half. Confidentially, I’ve been afraid to die during the winter, because I didn’t want to put my loved ones through a cremation during the Crestone winters, before sunrise, when the fire threat in our high desert climate is reduced. My friend Marv just died and he and his family are giving his almost 90-year-old body a ceremonial sendoff. For the last few days of his life, his body was completely still, but clearly waiting for something unbeknownst to us. When his beloved grandson arrived from Japan, he took his last breath. Marv had his own perfect timing. He was then given the allotted three days to allow for his soul’s reorientation for his sacred Passage, his Pilgrimage, freedom.

I informed Lauren, my dear caregiver of nearly five years, that Marv had left his body. We stood in silence as she sensed a longing in me I had long since learned to suppress, due to the physical limitations that left my body immobilized from the neck down. Being close with Naomi, his wife and partner of a zillion years, someone who shared love, children, and laughed and cried with him, I felt the paradoxical combination of deep grief and relief she must feel. I had the honor to witness their deep, oceanic connection firsthand, during a concert performed in 2015 in my living room, by a few dear friends and brilliant musicians, who generously play for me, because I am housebound. That is the sort of community I live in. There were a few songs that elicited tears of grief and joy that revealed a direct channel between Naomi and Marv, the depth of which none of us could ever share, but was palpable and spread throughout the room as such feelings do.

I first met Marv a decade ago, after moving to Crestone from the New Orleans area after Katrina. Marv is someone you don’t forget; he makes an indelible impression with his colorful history of thirty-five years in the Hollywood music business, including being vice president of Columbia records. He had many stories to tell. Those days, Marv and I were getting around much better. More recently, we shared a particular experience of being at the end of our lives, which created a sort of connection in and of itself. As my life began to unravel shortly after arriving in Crestone, an experience shared by many Crestonians (knowing smile) and some initial resistance, I let go into facing an uncertain future alone, my greatest fear of my lifetime.

My former husband, while on his way out of our eleven year relationship, informed me that my horse Jasmine had a companion who loved her deeply and wanted to buy her. All I knew was her name was Elizabeth, she was the wife of a local Rinpoche (a highly respected Tibetan Buddhist teacher), and she would care for Jasmine, my elegant, billowy, chestnut mare, as I no longer could.

I suspected Elizabeth and I shared an auspicious bond. In the last year when she came to meet me, we coincidentally gifted each other photographs of horses. Her father, Marv and she had a deep connection with Jasmine. Although our lives were very different, there was a mutuality that couldn’t be understood in our three-dimensional reality, that horses tend to illuminate.

Naomi has been in my women’s circle for a number of years. (Don’t tell anybody, because it’s confidential.) One day Naomi came to visit me by herself. I wanted to show her my voice software that completely controls my computer, hands-free, thinking it might help her. We ended up talking for hours as she shared her life, her Dharma, perhaps one and the same, and her gratitude for my having reached out to her.

When Lauren sensed my feelings for the Mattis-Namgyel family, she naturally and innocently, in her own Lauren way, offered, “Do you want to go to the cremation? I will take you.” For a moment, I was speechless, because I had let go of the possibility of leaving the house long ago. After all, I am housebound and in hospice care! It was just too precarious for this frail body. Still, a moment later I replied, “Yes!” It was completely incomprehensible, but our intention was stated aloud, so we just needed to work out the details.

First, Lauren called Stephanie, the director of Crestone End-of-Life Project, to see if it was possible to logistically carry out this plan. After Stephanie realized from Lauren’s telephone call that someone had not died, as many of the calls to Stephanie portend, she was less in facilitator mode and more in exhilaration from our Vision that we still didn’t know could be actualized.

Next we called hospice to see if I really had lost my mind. I’ve been reluctant to even go in the courtyard of my home and hadn’t ridden in my accessible vehicle, since I realized my vestibular system and my connective tissue could no longer tolerate the movement. At the time, I felt like my internal organs would fall out of my body.

My hospice nurse said, “If you want to go, do what your soul wants.” With this encouragement Lauren and I both cried as we knew it really could happen! We had the blessings of Stephanie and hospice; I now had to inform Allison (drumroll). Allison is my primary caregiver, the one who holds my organs together, both metaphorically and quite literally, at times. Allison provides the voice of reason. If we had not considered the “what if’s,” she would provide them. Allison was scheduled to tend the fire at the cremation that Sunday, which would require her full attention. She is off on the weekends and I try not to engage her, unless it is an emergency. If I had not consulted Allison, it would have been an emergency of a different sort.

It was the day before the cremation, that Blue Rooster offered to play music for me and any friends and my living room was packed. I’m usually tired for three days after a concert, but the cremation was the next day and I didn’t have the luxury of a slow recovery! Waking at 5 AM the next morning to prepare for being at the pyre by 7 AM, would require nothing short of a miracle. Ironically, the musicians provided the necessary fuel when they dedicated the concert to Marv! My first request was the Creedence Clearwater Revival selection that is the title of this essay, my favorite request, which happened to be Marv’s as well.

The song transported me back to the concert with Marv and Naomi in 2015. The most common question I get when people hear I have MS is, “can you feel anything?” Often people with paralysis have no sensation, but the opposite is true for me. Sitting in my chair I felt a sensation I hadn’t felt in over a decade. Naomi, sitting across from me with constant loving communication of gratitude to me for providing this opportunity, Marv on my left, sitting unsteadily, yet joyfully on his walker, I suddenly felt a hand on my thigh and looked over and saw Marv’s sparkling eyes. His eyes sparkled with a combination of the innocent joy of a three-year-old boy and the dangerous joy of a sixteen-year-old. It was so dear, Marv, Naomi, and me, in this marvelous triangle of love together with the vision that only comes from an end-of-life perspective. It was both comical and deeply sacred at the same time.

At 5 AM, Lauren, Cindy, and Marie arrived for the Herculean task ahead of us. I have a back brace that we put on backwards with the hope of holding my organs in place and I took Dramamine for the inevitable motion sickness.

Lauren’s experience with me, Cindy’s practicality and confidence as an EMT and a sister in so many ways, and Marie’s wisdom to strategize with buckles, seatbelts and blankets – lots of blankets –  gave us the confidence that we could do this, despite the knowing that, as with any encounter, this could be my last.

Everything fell into place as we got to the pyre at 7 AM as planned. Being at the site was like a dress rehearsal for me, as I had registered with CEOLP (Crestone End-of-life Project) many years ago. I saw Marv’s family sitting where my family will soon be. I had not been to a cremation in nine years and the site had changed considerably. It was now lovingly embraced by a meticulously crafted bamboo fence with copper finials. In such an intimate community, I knew the artisans and the committed team members who contemplatively orchestrated such a meaningful way to leave this beautiful life with our beloved family and community as witnesses.

The intimacy and generosity of Marv’s family for sharing this sacred time together was nearly overwhelming and just the miracle I needed and hoped for.

There’s a feeling I get when I look to the West, and my spirit is crying for leaving… – Led Zeppelin

Beginning the conversation

Since the onset of subtle neurological symptoms in the late 80s, I have lived an increasingly more conscious, full life. I have valued my lifelong mission of service to a greater degree and lessened my fear of death, considerably. I am left with few regrets and incompletions. Having been given the opportunity to live a long life, to see my children grow up and have grandchildren, gratitude ekes out of my every pore. I have had the time for all the difficult conversations with my family and my beloveds. We have shared our grief which is, of course, never enough, but a good beginning.

Having lived what I feel is a “good” life, I have less fear of death. There may be minor regrets and incompletions, but I have the courage to be present with any unfinished business with the people most dear to me. I have come to terms with the limitations of my ability to control life, and death. Many people open to religion or spirituality when facing one’s mortality which may lead to questioning what happens after death when one’s physicality becomes less central and awareness on the soul level becomes more accessible.

At this point in life’s journey, completing The Five Wishes, a comprehensive guide for personalizing the circumstances surrounding one’s death presented HERE may become useful. Living with the kinesthetic understanding of impermanence, I have come to value each moment like it could be the last, because it could.

Until recently in my dreams I have been walking, running, or riding my motorcycle or horses and my dreams have been completely devoid of any disability. Others readily came to me with their own dreams of me being ambulatory. For the last year, my dreams have become more constrained with wheelchairs and disability. The “costume” for this curriculum is becoming too heavy to bear.

Death is trending

The topic of death is becoming less charged. Perhaps baby boomers, or the children of baby boomers, are beginning to experience physical decline, first-hand. Some are observing loved ones who experience prolonged, excruciating deaths due to the ability of modern medicine to prolong life by any means, regardless of the suffering incurred. Our culture’s phobic reaction to death is being revealed. Witnessing loved ones suffering a “bad” death has led many to consider offering more choice and autonomy during this sacred time in one’s life. For those who are less fearful, moving toward the understanding that life is eternal and the physical body temporal, can be truly liberating.

I received a communication from a woman from Australia who is known as the Deathwalker. She walks people through their transitions, including performing wedding ceremonies and death rituals. She came to Crestone to learn about our groundbreaking end-of-life program. Our open-air cremations and green burials are an attraction to those wanting to share this passage in a meaningful, ceremonial way with their community.

I have planned my cremation impeccably, down to every detail: my preferred music – Bruce, the Native American flute player/maker with his portable amplifier; clothing – my cobalt, silk dress and silk fabric from India; traditional prayer – Cindy will say Kaddish (the Aramaic prayer for mourners to sanctify the Divine); what I will hold – Mark’s and Basha’s ashes, sage from Wounded Knee, and my “lifeboat” fabricated with handmade paper by Allison to accompany me on my journey. My Beloveds will be able to speak if desired. I have no doubt that I will be there.

Self-determination as a Sacrament

I know that systems take time to change, but those who oppose the aid-in-dying law want to deny people the right to choose how they might die, when death is iminent. Don’t they know that people are suffering needlessly? For some people, suffering is intertwined with their religious beliefs. That is not a part of my belief system. I believe since people have the autonomy to choose how to live, they should also have the right to choose how they die. If their religious beliefs are in conflict with certain choices, they have the right to make the choice for themselves consistent with their own values. Of course, death brings its own circumstances, but life-prolonging medical interventions merely prolong suffering rather than extend quality of life in many end-of-life scenarios.

Historically, ancient Greeks and Romans practiced self-determination when facing the end of their lives before Christianity. Indigenous peoples knew when it was their time and they walked into the mountains to enter the spirit realm. Self-determination to me is a sacrament – a visible sign of divine Grace.

Crazy Horse, a holy man of the Lakota people, was immortalized by saying these words while going into the Battle of Big Horn, “Today is a good day to die.” This statement epitomized the philosophy of the indigenous peoples, to die an honorable, brave death:

Our lives are a circle just as the stars; the moon and the sun are circles. We are born, we live and we die. There were no greater prophets than Crazy Horse and the holy men and women of the many tribes of what is now America. – Tim Giago, founder of Lakota Times

My personal Journey

I am in a body that is like a prison cell. I have learned to love my cell: it keeps my organs together, it allows my heart to beat, and my lungs to breathe, diminished as it all is. I have learned so much in my prison cell. I am a Cancer, so I could call it my crab shell; it has supported my Sacred Retreat. I have studied life, learned to write, I have communicated wholeheartedly with loved ones and have repented my indiscretions. Through all of this I have been able to connect with the Beloved and learned that beyond ego all there is is love. I have faced my greatest fears and learned that what I have been seeking outside of myself all these years is inside.

My beloved body has been deteriorating at an accelerated rate since the diagnosis in 2003. It is progressively more fragile with each week. One injury, choking incident, or one errant virus can bring an end to my already limited quality of life. The resources it takes to maintain an ever-declining baseline is exhaustive. Nevertheless, I have much determination and life force.

To me, every day, every minute, is an opportunity to love: to express love, receive love, and to help others remove the blocks to love. I have been received on seven continents with the lessons of love, I have integrated and supported many through minor and catastrophic challenges. It is my Work. It is my joy.

I have worked hard to bring aid-in-dying into the conversation standing on many peoples’ shoulders, wheelchair and all. Why would anyone refuse to unlock the prison door if one has the power, the responsibility, and the law on one’s side?

I know I have the capacity to live longer in my cell and I will reap wonderful rewards in my confinement, but what about the people suffering needlessly without the financial resources to maintain a regenerative quality of life? What about the people suffering without the internal resources to turn poison into medicine, as my Buddhist friends say?

I trust that when my time has come, I will know it. I live a paradox with an ever-fading body, yet with much life force. If we can omit shame from the process of choosing how to die, are able to feel our grief of letting go fully (my greatest challenge), listening to a deeper Knowing is available to everyone. It is in the natural order and death can be a sacrament that completes the circle of life.

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

Go to - http://www.meetmebytheriver.net -- And you can find it on Amazon!
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...

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 114 other followers