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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.

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(Dedicated to Barbara and Leslie, who loved and lost Spectre, along with us. Thank you.)

Remember to love deeply and hold loosely. – Gussie Fauntleroy

Fly Spectre Fly!!

What I didn’t want to cover in my last essay about Spectre was that, although his body was unable to function due to the melanomas wrapped around his jugular vein and intestines, he was not ready to go. When we prepared to euthanize him, we gathered in the remote, upper field – our animal graveyard, where the bodies of our beloveds returned to the soil. Moving a dead horse is not an easy task and the death ritual has to be planned in advance. The backhoe has to be ready to dig the hole, right then and there, to bury him. If a horse dies in a stall, you have a serious problem on your hands.

When Keith inserted the needle to euthanize Spectre, despite David holding him, Spectre boldly tried to walk on. Two men were nearly unable to keep the needle in his neck. Barbara and I stood by in horror at the scene where our veterinarian was trying to end the life of Spectre, our beautiful, mighty Patriarch of the barn. Finally, Spectre went down on one knee; he needed to be completely overpowered to go down. He demonstrated to me what the body is capable of: that the body wants to live at any cost, whether it has melanomas strangling organs from the inside out, or not. In looking back at the trauma of the spectacle, I saw Spectre’s warrior nature. I saw his power and I saw his terror. With Spectre’s strength, he could have overpowered us, but he just walked on – always a gentleman. Spectre didn’t go gentle into that good night.

In my last blog, I did not talk about the emotional cost of keeping my body alive. I did not talk about the intermittent, insidious bladder spasms that often leave me soaked in urine that inevitably accelerates skin breakdown. I don’t like to complain about the small stuff; I just do my version of walking on. I believe much of my suffering so far has been necessary, humbling me, stripping me to my basic core. I have learned that when I can love myself with this illness, I can love myself wholly and in that way, the process becomes a holy practice. The true love of my life has been my inner work which extends to my work with others, so they can also access that holy state of being. This illness has served my highest soul’s desire and for that I am deeply grateful. I am not special; it is just my time and I have said yes to the Universe. Everybody will, in one’s own time.

When I listen deeply to my bladder, I hear that it is trying desperately to expel the catheter, the foreign object that has invaded it for the past six years. In the vernacular, my bladder is pissed off. When I realize this, I have compassion and know that my body is not my enemy, but my advocate, and a damn good sport at that!

I didn’t mention my extreme diet and protocols I have followed for the last thirty years – the daily green smoothies I force myself to swallow, knowing that they make my skin more resilient to heal the inevitable pressure sores from sitting twenty-two hours a day and the multiple injuries I am sustaining more frequently, due to my body’s increased structural weakness. The disease progression continues, despite my efforts to enter remission. I am constantly strategizing on how to prolong my life, while lessening the suffering. For me, it is a Sacred practice chosen by my soul. I know that, because my ego would never freaking choose this!

I refused the traditional MS drugs, because I did not want to suppress my immune system, which was the best the medical profession had to offer this unrelenting, mysterious illness they call primary progressive multiple sclerosis, or PPMS, and have no clue how to treat. I searched for healing on three continents over twenty-five years, both alternative and allopathic. My main criteria was that it had to resonate as true healing, not tricking the body. In retrospect, many of my friends who attempted the mostly ineffective MS drugs have more debilitating symptoms today, due to the disastrous side effects, without having slowed the disease process, as promised. I don’t feel righteous or resentful; I feel tremendous heartbreak watching the physical devastation unfold in those I care about and for those who courageously watch mine.

We are all just walking each other Home – Ram Dass

Ram Dass says, when we live more from our souls, then death becomes just another moment. As we become initiated by life: either due to body breakdown through illness, injury, aging, death of a loved one, or even our beloved pets dying when we are young, we learn that we are more than this vehicle we call our body. As we meet our initiations and move through the anger and fear, we can begin to live more from our Souls.

If my beloveds experience me only as my physical presentation, the loss is devastating. If we have a soul connection beyond the physical my process can also be awe-inspiring, because paradoxically, as my body deconstructs, my spirit grows, exponentially. I am left with gratitude as it has helped me grow patience in accepting my circumstances with Grace and dignity. (If you are reading my blogs, you are likely in the latter category and you are being initiated right along with me. Thank you for that. It is clearly the road less traveled.)

We tried any experimental drug available on Spectre. Like progressive MS, there is no treatment for progressive equine melanoma, at this time. We would have extended his life at any cost, however I am now learning that more time does not necessarily equate with more quality of life. I came to realize that by prolonging Spectre’s suffering, I was avoiding my own grief at his expense, not an easy realization to hold.

Fortunately, for our animal friends we have euthanasia to help them avoid needless suffering. Some of my Buddhist friends reject its use believing that all suffering, in animals and humans, is necessary for our evolution. Every animal communicators (those gifted individuals who can speak to our beloved animals “on the other side”) whom I’ve read, or spoken to directly about euthanasia, have, unequivocally, expressed our animal’s gratitude to the humans for helping to end their suffering.

I believe animals are here to teach us humans. Many states have begun to offer aid-in-dying, which is popular with over 60% of the people. The qualification process is arduous for those facing death, but empowering once completed. Now we have the choice to discern what resonates for each of us as ethical and true to help our physical bodies come to completion, gently.

Six years ago I was told that my kidneys were going to fail if I didn’t allow a urinary catheter to be inserted permanently. I agreed, because I had places to go and people to see! There is a cost for going against nature; the contraindications need to be considered. My bladder revolts at times resulting in spasms (mentioned above) and urinary tract infections. Constant use of antibiotics can result in resistance leading to superbugs. Kidney failure, aspiration pneumonia, and sepsis are common causes of death, when allowed to follow the natural progression of the illness. One doesn’t die from MS, one dies from “complications from MS.”

As we evolve as a culture and there is less fear around death, more options for supporting this sacred transition are becoming available to ease one’s suffering. When the body is ready to complete itself and turn from the physical toward the soul for animation, other initiates will appear. Perhaps they will be in the form of friends, family, those being trained as death doulas and midwives. As the Feminine rises, there will be less fear around choice, and the desire to control other people’s bodies will be seen as archaic.

There is a time to walk on and a time to take a knee in surrender to the soul’s desires. May we be granted the Wisdom to hear our  inner guidance and the Courage to follow our own Truth.

Many of my Beloveds are struggling now. Have faith and the world needs you. Here is a  gift to be with:

Much love to you all. Aliyah

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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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