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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.

The beauty of horseback riding is that you need to learn how to be in complete control while at the same time in complete surrender. It’s a condition you cannot explain until you have climbed on the back of a horse and held the reins in your hand. – via obsessionreflection

Spectre and Clarice

I thought of Spectre as the Patriarch of the horse farm, the head of our horse family, the alpha of our herd, both equine and human. He was the most beautiful horse in the world to me and still is, in my heart. Since he was a thoroughbred stallion when we got him, being gentle was important for us novice riders. Spectre was a paradox; he was both gorgeous and powerful with stallion lines including a big, thick neck and he knew how to strut his stuff, yet he was compliant and sensitive and wanted to please. It’s as if he knew his power and used it judiciously. David bought him for $500, because as many gray horses do, Spectre developed melanomas. The primary tumor near his lymph node was wrapped around his jugular vein, so it was inoperable. We adored Spectre with all our hearts. The previous owner told David that we might have five years with him and that was exactly what we had.

Horses were always special to me. As a young child, I started taking riding lessons at the same stable where my mother had ridden a generation earlier. I treasured her English riding boots she gave me and kept them most of my life, despite being two sizes too large. By twelve, I had a horse of my own and during graduate school in New Orleans, I exercised people’s horses at City Park Stables. Horses were in my blood.

Being able to finally have my own horse farm was a dream come true. Our barn drew an extraordinary community of riders, horses, and dogs. We began learning dressage with Spectre until we found out that he loved to jump! Our close friend, Barbara, a professional jumper, showed him in his first jumping competition ever and he won a blue ribbon! He was a natural, but mostly he was a natural born lover.

Little did I know that a few years later I would be diagnosed with a life-threatening illness as well. I don’t have melanomas, but I do have a progressive, neurological illness that is slowly deteriorating the musculature of my body and has landed me in hospice at 64.

80% of gray horses eventually develop melanomas, but Spectre was young when his developed. Everybody loved Spectre, but more importantly, everybody respected Spectre.

The last time I was thrown from a horse, it was from Spectre. He’d been a stallion for most of his life, but a well-behaved stallion. People who know horses would smile at that statement. I was riding Spectre in the arena with a friend riding Jasmine and little did we know, Jasmine was in season. Usually Spectre was disciplined, and riding with other horses wasn’t a big deal, but I guess he was strenuously trying to contain his enthusiasm and gave the slightest little rear end bunny hop and I was instantly sitting in the sand of the arena. Realizing something was wrong, Spectre turned his head around 180° and looked at me. Thought bubble: Hey, what are you doing down there?

Only 15% of people with multiple sclerosis have as progressive a form as I developed. When I was 33, subtle symptoms began, but weren’t physically evident for another decade. In 2001, my horse Ransom broke away requiring me to catch him when I noticed that I could not run. I would be diagnosed two years later and the physical decline would be rapid.

Spectre’s last day

During our fifth year together, the melanomas were surrounding Spectre’s intestines creating a blockage. Keith, our beloved veterinarian, put on a glove up to his shoulder and relieved Spectre of his life-threatening impaction. David would have happily done this daily if Keith agreed, but he told us Spectre needed to be euthanized. Not wanting him to suffer and knowing that melanoma was a progressive disease, we scheduled it for that evening. Spectre’s appetite was unaffected, so on his last day with us, Spectre was given as much grain and carrots as he wanted. I wonder if he sensed our sadness as we celebrated our five short years together.

A decade later I found myself in a similar predicament. Muscle weakness became evident in my gait first and spread through my body, mercilessly. Peristalsis diminished from my esophagus to my intestines. Eventually, bowel problems similar to Spectre’s and difficulty swallowing would manifest.

I have a high tolerance for suffering, because in my heart, I believe it can be for a greater purpose when the suffering is emotionally regenerative rather than avoidance of the inevitable. Learning to discern the difference has been both rigorous and liberating. The feelings of helplessness from having a terminal illness only became bearable when I realized I could choose some of my circumstances.

Due to the slow progression of this illness, I often feel like a correspondent reporting from a war zone hoping to educate and empower others about their choices.

Update from the war zone– I have been choking while eating and needing help eliminating for six years. Despite the choking, I have chosen not to have a feeding tube, choosing quality of life over quantity. I designed my diet to strengthen the mitochondria of my cells, hoping it would clear the illness, but it hasn’t. I began to see that there is a greater plan at work for me and for all those whose lives I touch so deeply and being a reporter from a war zone is a large part of that plan. A feeding tube and a colostomy are not in my plan. To protect my kidneys, I agreed to a urinary catheter six years ago. Moving around with a catheter is something I’ve learned to live with; it is acceptable, despite having pulled it out once, accidentally. If you can imagine pulling a balloon through a penis, it was almost that bad. Wars zones elicit graphic images and dying is messy.

Being unable to cough or blow my nose, I have decided not to be resuscitated should I have a recurrence of pneumonia; drowning in my own fluids is not a form of suffering I need to re-experience. Images of waterboarding and other torturous methods come to mind. Inserting a nasogastric tube is one of the most painful and common procedures performed in the ER. Experiencing the suction machine was similar enough to determine a redline for me. So, no more 911 calls or ERs. If it were to restore me to a healthy life, that would be different.

Being virtually quadriplegic and living alone is not for most people. Fortunately, I have had the internal and external resources to pull this off. I have a care team of exceptional people who support me in this experiment. I have the opportunity and the joy to affect people all over the world with my writings and conversations.

I have learned a great deal from this curriculum from the inside out. I believe everyone has the sovereignty to choose for themselves how to live and how to die. More opportunities are being made available to empower those who choose to use them, from DNRs to MAID (medical aid in dying).

I believe as we evolve, we live more from our hearts (souls) than from our heads (egos). I know this, because my head would have given up long ago. Being a psychotherapist, I have come to understand that people make the best choices they can based on their level of development. We all have consequences for our choices, both good and bad– that’s how we evolve. In my heart of hearts, I believe that is what we are all here for.

I feel comforted knowing that the aid in dying law is passing state-by-state. If one meets the rigorous criteria to determine eligibility, it can reduce needless suffering that often plunges the dying and their families into helplessness and debt.

Nobody wanted to see Spectre suffer needlessly. He taught me a lot about having the courage to make the hard choices, despite my grief. I believe we humans have the same right, when death is inevitable.

Hard times require serious dancing. – Alice Walker

No. I don’t have a pretty picture like a great ship sailing in stormy waters or an image of a physical body’s particles dissolving into eternal, ecstatic light. This is my latest injury. My right leg sustained yet another injury last Friday while transferring to the stationary bike. (I know it’s bad when the hospice nurse cries.) What will I do when my legs can no longer support any of my weight, when I cannot stand or ride my bike or even take care of the basic daily living skills? My body is known for healing quickly, but each injury is more debilitating and each recovery finds a new baseline with less ability.

The night before the injury, I slept ten hours which is nearly a record. My sleeping has been getting better and even my occasional naps are becoming longer. I’ve heard that as people move toward dying they sleep more. I believe we are given much preparation for our transition in our sleep, whether it is received consciously or unconsciously. The day after the injury I woke up from a dream that was partially autobiographical, but with dreamlike embellishments. I believe they – the Voice I’ve spoken of previously– wake me early some nights, because there is something I am needing to acknowledge and/or process that in waking hours I cannot access. In my dream, my former husband was becoming more distant from me with coldness and resentment. I tried to call him near, but he told me that he was closer to his new girlfriend’s family than my family. When he told me this, I cried desperately from the grief and fear of going forward alone with this illness. This was mostly biographically accurate, but I received it as a reminder to grieve. Being able to grieve is so important in our bittersweet, human lives and I believe it’s necessary to grieve well in order to truly feel joy. Since I began psychotherapy in my 20s and through fifteen years of Holotropic Breathwork practice and becoming a trainer, I have become more comfortable with grief knowing that joy is just on the other side. David was unable to process grief openly during the eleven years we were together. No one could navigate this curriculum without the capacity for grief/joy. I understand that this is an accelerated course in life and not for everybody. It is not a failing to be overwhelmed by my life. Believe me, I get it.

In her seminal book, The Hero Within, Carol Pearson, presents six heroic archetypes that exist in all of us. To access this best-selling classic with strong Jungian influence, click here. According to her teachings, we all have access to each archetype, or ally, and when made conscious they can elevate our self-awareness. The archetypes evolve developmentally as we evolve.

Suddenly in the dream, I slapped my face. Referring to Pearson’s archetypes, I realize that I have been avoiding the feelings of the Orphan archetype (vulnerability, innocence, fear of abandonment), wanting more the Warrior archetype (strength and physical persistence). This translates literally to my waking life. Authors like Carol Pearson and Michael Brown offer us so many tools to aid in our evolution.

By waking up 2 1/2 hours early, I had the time to explore the meaning within the dream. I remembered an earlier time when I sustained multiple injuries while I was avoiding the use of a wheelchair. If you know anyone with a progressive neurological illness, as the disease progresses and one’s equilibrium is affected, one may tend to wall-walk in order to stay upright. I became adept at wall-walking, that is, until I fell with my computer landing on my knee to avoid damage to my laptop. My kneecap cracked with the force. Still, I persevered and dragged myself onto the tractor. If will could have kept this illness at bay, I might have dragged myself up Mount Everest. Climbing off the tractor, I fell on my knee again and broke my patella in half! I have always minimized my injuries, that is until I couldn’t.

I required crutches and then a walker while the injury healed. Soon, I fell onto my computer desk and cracked my sternum! When I finally sat in the freaking wheelchair, I felt the relief of surrender. The dream last night and my time in contemplation allowed me to wonder if the series of injuries I’m experiencing now is an indication that I am needing to surrender once again.

The Orphan archetype, an ally that brings resilience and realism to situations through a willingness to feel vulnerable might be the exact medicine I most need now. Ironically, the illusion of abandonment is the pitfall of the Orphan when life is not met head-on. So it seems that these recurring injuries may be a message that I am needing to meet what is head-on.

Ultimately, letting go of my will means letting go of the illusion of control, an illusion we share as humans and seems to be a recurring theme in my life. Feeling the grief of what I am leaving behind is part of the work of moving from Orphan to Innocent to Warrior to Magician, to ultimately allow myself to be transformed, to be more of who I truly Am.

My dear friends tell me daily how courageous I am and what an inspiration I am for their lives. If you are reading this, you are one of them. I appreciate being received as inspiring, but I know everybody will be facing this level of surrender eventually in our lives. I am just doing it earlier than most, in slow motion, and reporting in real-time.

I am moving into the next level of this heartbreaking and joyfully sacred path we call life, which includes death. May I do it all with Grace and Gratitude. Namaste.

When a great ship is in harbor and moored, it is safe. There can be no doubt. But that is not what great ships are made for. – Clarissa Pinkola Estes

When I was a young girl, my father had a 1923 Ford Model T antique touring car that had a crank on the front that needed to be turned to start the engine. I’d heard you had to be careful it didn’t jerk your arm out of socket when you cranked it, it had quite a kick! The purpose was, in my seven-year-old understanding, to create a spark for the engine to start.

In looking back over the 40 years since completing my masters degree to practice psychotherapy, I recognize that I have played that same role with the people I served, to create a spark to get their psycho/spiritual engines going. This is neither a responsibility I take lightly, nor has competency come easily. It is a sacred task so deeply-rooted in my being that I believe I must have agreed to it prior to incarnating. My desire to serve has been just that pervasive throughout my personal and professional life and the joy I experience when their metaphoric engine gets running is profound!

Learning to hear the call of this sacred assignment began while I was still in single digits of age. In order to be effective, however, I had to reach a level of confidence that was not easy to come by. This journey toward self-love was wrought with many challenges, but I came into this world with a fierce desire to serve and I came to realize that in order to serve others, I first needed to heal myself. With this awareness, I started a life of seeking that led to many teachers and disciplines to help overcome my limitations. I’ve spoken before of my greatest teaching – to learn to trust my inner authority, which I believe is the only way to truly know one’s power. The experience of learning to drive a manual transmission in the late 60s served as a useful metaphor for understanding and developing this teaching.

Our parents and our older siblings serve as our first authority figures to help us practice vital lessons of personal power. When my brother was 21, he became my instructor and his 1968 GTO with a clutch that was about to fail became the instrument of my education. He knew the clutch could fail if handled recklessly and, believe me, he let me know it. What a set up for high tension. I knew if I didn’t learn fast, I’d be in serious trouble with my brother. What a perfect metaphor. My lack of confidence in life manifested as a fear of my own power (acceleration). Engaging the clutch unskillfully would immobilize the engine abruptly and infuriate my brother. Immobilization (shutting down) was my go-to strategy for warding off anxiety. My brother amplified the voice in my head creating reluctance, (fear). He taught me about the friction point, the point where the clutch and acceleration meet for forward motion. When met with accuracy, there was no damage to the clutch. To add to this tension, I was learning to drive a manual transmission in the hill section of Scranton, Pennsylvania. Engaging the clutch with your left foot on an incline could cause the car to roll requiring quick use of the brakes, also with your left foot. If there were a car behind me, catastrophe could ensue. The tension was great with the potential for collision with another car. You get the picture.

This mirrored a conflict that I refer to frequently in my life – immobilization versus empowerment, clutch versus accelerator. Applying the brakes offers more control, but I only have two feet! As I became more proficient at driving a stick shift, I felt less immobilized in life, less afraid of my power (acceleration). This has served as a good example of meeting my fears at the exact point where acceleration is required, to avoid stalling in the middle of traffic, to avoid a collision with fate, or my brother’s rage.

Another powerful metaphor was learning to waterski on one ski. Learning to ski on two skis was elementary growing up on a lake, but learning to slalom demonstrated the next level of proficiency. Learning to slalom, one needed to be able to shift one’s weight from two skis to one. This required shifting one’s whole equilibrium from two points of contact to one point of contact. Having the tendency to lose myself in relationships, the kinesthetic sense of balancing over my own center of gravity reminds me of learning to slalom. I often felt this shift after a divorce. After processing through the stages of grief, I always felt empowered when my center of gravity shifted over one ski, my ski!

And there is the snow ski metaphor when you have to lean forward as you ski downhill in order to navigate through the snow without losing your balance. Intuitively, we lean backwards to compensate for the downward slope. Leaning into issues sometimes means going against one’s intuition and one’s comfort zone. Thank you for indulging me in exploring these teachings.

Having spent most of my life in my body learning kinesthetically (in motion) to be still and listen deeply has been a huge gift that my ego would never freaking have chosen. Nevertheless, it has served me well. This carnal (physical) curriculum is not for the faint of heart. If my heart were anymore faint, I could never do terminal illness nearly as gracefully. As I live this end-stage form of neurological illness, I can see things in slow mo. My life force is growing exponentially as my body is weakening. My identification with this blessed vehicle is shifting to a greater me, the part of me that is more aware of other dimensions. There are times when my perceptions and my sense of love is so heightened that I know that transition to Spirit will be a minor step. Each time I experience this, fear of the unknown diminishes.

In their published work, James Lawley and Penny Thompkins assert that “metaphor is an active process which is at the very heart of understanding ourselves, others and the world about us.” I have much gratitude for the teachings that surround us when the intention is self-reflection that leads to empathy. After all, teachings that lead to having greater compassion for ourselves and others is the essential work of this time. As Clarissa Pinkola Estes so beautifully reassures us to not lose heart, because We were made for these times.

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.

There is a feeling we have sometimes of betraying some mission we were mandated to fulfill, and being unable to fulfill it. And then coming to understand that the real mandate was not to fulfill it. And that the deeper courage was to stand guiltless in the predicament in which you find yourself. – Leonard Cohen

People are usually surprised to hear how I really feel about living my life under such extreme circumstances: being unable to move from the neck down after being a competitive athlete my entire life, living in a body that can barely keep me alive, having difficulty speaking audibly when tired and barely being able to whisper. It just boggles people’s minds that I could live my life with so much gratitude for being, so much gratitude for having as much independence as I have, defying what our medical establishment is able to tolerate due to the excellent, compassionate, spiritually-driven circle of women and men who surround me and care for me. The paradigm we have co-created has allowed me to focus on what I truly value – connecting deeply with the people I love and helping them to allow more Love in their lives.

I live an interesting paradox. My body is in hospice, but my mind and my Spirit are experiencing the most joy I could ever imagine in life. How can that possibly be? I could never understand it without living it. It is true that I cannot move, eat, eliminate, without complete dependence on others, however, there is so much I can do that I would never have been able to with a fully, functioning body.

My life has always been about service–service through my psychotherapy practice, service through my interracial gospel choir in New Orleans, service through my nonviolent communication groups and my caregiving and women’s circles, not to mention service to anyone who enters my house, including the UPS man. There’s nothing that gives me more joy than helping someone recognize and allow more beauty and love into their lives, especially self-love which is from where all love emanates. It is only through love that world peace can be achieved.

With my body slowly dying from a neurological illness, the progression happens gradually; I lose one function, one ability after another. Everybody goes through this process during aging, mine is merely accelerated. To me, death will be an adventure when the time is right. After allowing myself many years of grieving, I began to see the brilliance of this curriculum. Suffering is minimal. I believe that grief only becomes suffering when it is not fully felt. My suffering has been mostly emotional. If I’d had too much physical pain to bear, I might be having a different conversation. Earlier in the illness, I broke many bones during accidents: sternum, toes, patella, femur, but they have all healed. Unlike most people with end-stage illness, I am fortunate to have little neurogenic pain. Everything is firing from the neck up, so I am able to strategize my circumstances to avoid pressure sores from becoming septic, aches from becoming chronic, my mind from becoming stagnant, and to free my heart to continually emanate and feel love.

When one is moving toward the end of their life, often dreams can become more vivid. Upon awakening, recounting the dreams of my sleeping state often reveal inner work that is yet to be addressed. Sometimes my dreams merely clear emotional material that is clouding my clarity; dreams are always regenerative teachers. Lately, I have been experiencing my dreams as a bridge to the Spirit world, perhaps to aid my transition.

In one such dream, I was painting columns of an antebellum home a particular color well known to Southerners – shutter green. Shutter green is the color many shutters are painted in Louisiana where I lived and raised my children for 30 years. I frequently dream of the turn-of-the-century home where I raised my family. The house in the dream was clearly a variation of that home and magnificent property. We lived off a highway called Military Road where confederate soldiers were rumored to have marched, thus giving it that name.

In the dream, I was painting these columns with the woman who owned the house. I knew her name clearly. It was Monique (or Monica) Marie Crane. I remember feeling that it was essential to me that the woman feel good about the work I was doing. Her husband would be home soon and I wanted the column he would see first to be meticulously painted. Doing a meticulous job felt almost like a spiritual calling. There was no duress, no external pressure.

I remember looking into a full-length mirror and seeing a very pleasant black man! I can remember moving my arms to see if the reflection would move with me. It did. I was clearly the man in the mirror. The love I felt looking for the man was profound. I can still feel it today as I recall the dream. There was no sense of time, no feeling of enslavement, no sense of victimization. Pleasing others with my craft was deeply satisfying.

After I woke up, I felt such love for this man that I told my friend who is a hospice chaplain about the dream. She affirmed its significance and offered her own perspective. She saw how this man’s life appeared to parallel my life, that I’ve lived life’s circumstances with much gratitude and no feelings of enslavement, despite the lack of freedom of movement. As she described this, I felt the kinship with this man. I felt deep love that I cannot understand cognitively.

We live many lives in one life and perhaps we live many lives in many lives. The I who is, is constant. The I is forever.

We are one, after all, you and I; together we suffer, together exist, and forever will re-create each other. – Pierre Teilhard de Chardin

Well, today’s the day for my second physician’s appointment to determine eligibility for the new Colorado Aid-in-Dying law. A major factor determining eligibility is to establish that I am of sound mind.

To determine if one is of sound mind, a mental status exam is performed. The patient needs to be “oriented times three”, as we say in the profession. That means the patient needs to know who they are, where they are, and when they are – person, place, and time. Often a common question that is asked is, “Do you know who the president is?” Please please please, don’t ask me that question!

Allison, my primary caregiver, friend, and partner in discussing philosophy, spirituality, and geopolitical ramifications of the present day circumstances, etc., has been with me every step of the way through this end-of-life learning curve. Allison and I do not shy away from any topic, no matter the depth nor the breadth, and we share a sense of gallows humor that would make other people shutter. It is the sort of humor I relied on in the mental health center while dealing with continual heartbreaking situations. One has to be initiated, in order to share this type of Mash humor, in order to meet each moment. Allison and I are talkers, and when we talk we become so entranced with the content and our brilliance that we become somewhat disoriented, that identifying the date during such discussions becomes momentarily unreachable. We have this joke that when the doctor asks me the date, my reply will be, “Can I call my lifeline?”* It’s not that we are mental status-deficient, actually, quite the opposite is true; we allow ourselves to be transported. I hope and know that Allison will go on to do fascinating, significant Work in the world, when this work together is complete. I know our time together will be a catalyst for both of us. That is the nature of our connection, not a small ask from either of us.

The most common question I get from people is, “How are you able to be so present with this curriculum and be so lighthearted and present with other people’s suffering? Well, my answer is in two parts: I have people like Allison in my life who can go there with me, to be in my pain or to be in my excitement of going on The Great Adventure, both equally as important. Secondly, I have come to understand that I AM much more than my physical body. Realize that I live one injury, one choking incident, one errant bacteria or virus away from death. All my caregivers and friends are well aware of this fact. They, too, have been initiated, by loving me, watching my body weaken over time, and watching my life force grow.

Since I am not quite ready to feel the weight and magnitude of my meeting today, I will offer some other topics Allison and I find hilarious. After I have a choking attack where my eyes bulge and the caregiver is listening intently for that crucial in-breath, my mind is thinking about other things. As soon as I catch my breath and resume the ability to speak, I will often comment on something totally unrelated and banal. Perhaps there is a dissociative process happening, but as long as the choking is not life-threatening, my mind entertains itself, which then entertains my caregiver. Often, this is a moment where comic relief is needed. (I learned humor as a coping skill in my family of origin.) Many people find this type of humor tasteless. I’ve certainly had that reaction from people. Either you get tastelessness or you don’t. Either you experience relief from it or shock. It is, perhaps, an acquired taste. Nevertheless, sometimes we laugh so hard we have tears dripping down our faces. I know what dying laughing means.

When I assess people, I look at physical, mental, psychological, and spiritual well-being. Fortunately, for me the last three are functioning and developing well. Today, the doctor is assessing the first three qualities. Today, I hope he doesn’t ask me that question. Dissociating during a mental status exam would be counterproductive.

The shit is getting real. I am needing to accomplish a multitude of tasks in order to secure the medicine before I can even fully open to the grief for where these practical matters are leading. My grief is personal, but I also feel grief for the people who desire this right to lessen suffering at the end of their life, but don’t have a Masters degree, the capacity for humor, or a support system like I have. For them, the shit is very real and many likely don’t have the resources to complete this arduous task. My wish is for my words to reach them and they somehow feel comfort, that they can reach for the Love that is also reaching for them.

*This line is from the game show Who Wants To Be a Millionaire, aired in 2002?

crestone-eagleMany years ago, a close friend who was a hospice social worker asked me to cover her hospice clients while she was out of town. I told her, “I don’t do death.” She then taught me something that was way beyond my 40 years. “Hospice is not about death, it is about life.” Because I had been experiencing subtle neurological symptoms for years and I feared a degenerative, life-threatening illness building in my body, this concept peaked my curiosity as it assaulted my logic. How could dying be about living? Almost like a Zen koan that evokes enlightenment by showing the inadequacy of the logical mind, I had the next two decades to contemplate this paradox, because two weeks ago I became a client of Hospice del Valle in Alamosa.

When I was considering entering hospice, I received desperate messages from friends around the country who had heard I was actively dying. After all, I must be actively dying if I was in hospice. This is one of the major misconceptions hospice workers encounter. Families usually consider hospice only in the last days or weeks of a person’s chronic or terminal illness, which, in my opinion, does a disservice to the patient and greatly limits the level of care available through the organization. The main purpose of hospice is to provide palliation to chronically, terminally, or seriously ill patients (not expected to live more than six months), which includes attending to their medical, psychological, and spiritual well-being and those of their families.

Living in a culture that is death-phobic, no one wants to mention the H word to a person who still has some life in them. What if hospice involved helping to reduce the suffering of persons deemed terminally ill, but still living for many months? The illness I have been living with is a slow, degenerative illness that has only affected me from the neck down. The effects have been devastating, but from the neck up I have been able to maintain a quality of life that is different, but regenerative in nature. Having been a psychotherapist for thirty years, my work has become more selective but much deeper, given my spiritual growth directly informed by what I consider my “spiritual curriculum.”

I had considered hospice for the last year, but since I was not actively dying, I did not consider it seriously. My most experienced caregiver who had worked ten years in a hospice told me that about 10% of her hospice clients lived an average of two years. Working through the necessary emotional stages, I engaged the closest hospice serving Crestone. To my surprise and tremendous relief, I have received care on every level I could imagine—physical, mental, psychological, and spiritual. They are an interdisciplinary team: MD, RN, CNAs, chaplain, and Family Support liaison. Whereas in home health, improvement needed to be noted, with hospice I could let go and receive care on all levels. This is supporting my dreamtime, depth of meditation, and, I believe, allowing me to begin a conscious death with open communication to my Guides on the other side. Intuitively, I have been able to let go and begin my journey through the Bardos.

I imagine that choosing to work in hospice naturally screens out individuals who are not comfortable “doing death.” My experience with each professional is that their level of skill, compassion, and care have surpassed my high expectations. I now know what my friend was saying; hospice has been about improving my quality of life, even though I can die within days. I can also live months and perhaps a year or so. That was never a possibility before I engaged hospice. I am a natural strategizer or I would never have been able to live alone while quadriplegic, but their expertise has taken this to a new level.

I will likely see 2017, but perhaps I might see 2018! With the help of my care team and now hospice, I can continue to lead my psychotherapy group on Skype, share my growing wisdom gained from living in stillness, and perhaps I’ll live to write another book!

“When you look long enough into the abyss, the abyss looks into you.” Nietzsche

SpeechlessRecently, a caregiver asked me with a slightly horrified tone, “What if you can no longer speak?” Actually, there are times now, during the day when I cannot speak, like when I am on the stationary bike, when I am on the stander and late afternoon when speaking in groups, of which I am in ten per month. This particular disability has been happening gradually for the last four years, especially since I returned to high-altitude and It has become much more pronounced in the last six months.

I have learned to accommodate yet another disability, dysarthria– motor speech disorder caused by muscle weakness with neurological illness. I have learned that if I pause or whisper for a few sentences, I can often get my breath back and project a little more to make myself heard. Summer and the heat it brings exacerbates this symptom.

The potential for having this disability has been obvious to others, but being unable to speak and the ramifications had never occurred to me. I tend to not project into the future imagining what abilities I might lose next. This has probably been an effective strategy for lessening what is called “anticipatory dread” and, therefore, decreasing unnecessary emotional suffering. This represents another way my personality has evolved. I used to be accused of seeing the cup as half empty, as opposed to half full. Ironic that with this terminal neurodegenerative disease I’ve become more optimistic.

Actually, my first thought upon hearing this question was of recently having seen The Diving Bell and the Butterfly, a film about a man with “locked in syndrome” who, after sustaining a severe stroke, could not communicate after having been a robust communicator all his life. Somehow, I trust I would get my point across, even if I need to blink my eyes three times as he did. Sometimes I practice that while laughing about the irony with my caregivers. Fortunately, I don’t take this ordeal very serious much of the time. I don’t tend to marinate in fears of the future, at least not these types of fears.

What I have learned in accepting this “curriculum” is that if I become unable to speak, there is a greater teaching in the symptom. I have no doubt that my focus would need to go beyond the cortically-based area of the left brain where speech arises, exploring areas much deeper than the fears of becoming speechless. I bow to this anomaly and will accept it as my next teacher.

In my humble opinion, nothing is arbitrary when I have accepted such a rigorous path and it becomes more clear that I have, in fact, entered the Holy ground.

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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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