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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 Specter 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 Specter. 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.

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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.

“Pain and happiness are simply conditions of the ego. Forget the ego.” -Lao Tsu

Late 80s

Late 80s

Jordan was born in 1985. His father and I were deeply in love and Jordan was born with much love and readiness on the part of his immediate family. His sister Casey, had been asking for a baby sister or brother for years. Being nearly seven years old when he was born, she was allowed to hold him and watch over him as much as a seven-year-old could.

There is an expression that true happiness is when you realize your children have grown up to be wonderful people. My son is a wonderful person. He is deep and sensitive, intelligent and he loves his mother very much, which is a quality I find admirable. Smile.

When his father and I separated, his heart was broken for the first time. No doubt this catastrophe in his life also fed his depth and sensitivity. Who knows why “things” happen to people. I never believe these things are arbitrary; not marriages, divorces, illnesses or addictions for that matter. (For an evocative read on this theory see Robert Schwartz’s books on soul plans. They changed my life.)

During my last essay, when discussing my difficulty breathing, Jordan offered a quote from the Smashing Pumpkins:

A pure soul and beautiful you, don’t understand
Don’t feel me now, [I will breathe, for the both of us]
Travel the world, traverse the skies
Your home is here, within my heart

This, and much more, is what my son offers the people he loves. I have come to terms with many of the losses from this terminal illness and have transformed those losses into gains. The hardest is losing physical proximity to my children. When Casey, my firstborn, left for college I had to prepare emotionally for years to deal with this grief. I talked about this grief, performed rituals surrounding my perceived loss and wrote about it. Probably, the deepest teachings on grief surrounding my children have been from five discarnate monks who imparted these profound words. Instead of paraphrasing, I will print their original, penetrating communication:

Loved one, you must rest assured that death and loss are an essential piece of life that is so often ignored in this time on earth. Not only will your family be ok, but they will be matured through this gift of sharing your experience. Death is a beautiful path home to a place of peace and joy and magic. We are bothered with the sanitization of death from life as though it were a disease or a plaque or scourge or evil. It is none of those things. The false sense of immortality that cripples the souls of so many will not cripple your family. Your family will always be more aware than others, more present, more able to love and forgive. Please understand that through what they have witnessed in you, they will be much more aware as human beings with a broader perspective on life. We suggest again, although we know it will take much will power (of which you have an abundance), that when walking through the valley of the shadows of fear, you tell yourself “this is not real”. Right now, your fears of death and for your family are fears of the unknown. That is truly what they are. Just like the primal need for survival, the fear of the unknown is powerful. And the lower self can chime in and say “what will they do without me?” The truth is that your power becomes a part of all of them. Your words and your presence and your attitude and experience filters through them even now, but in death, you are sealed into their souls. This is not what we say to sound “Pollyanna”, but this is truth. Real truth. Try to resist the “boogey men under the bed”. Your loved ones will miss you and they will grieve, as is healthy for the emotional body, but they will rebound with your power and take that into the remainder of their lives with them as a part of their constitution. Continue to show your grandchildren your hope and power over mind. They will not be lost in a quagmire of sorrow or loss or feel abandoned. They will always be strengthened by your courage and their lives changed by the acceptance and awareness of the transition of the body as a natural flow of life and love.

Whatever one thinks about how these teachings were imparted, one cannot discount the quality of the message. I have found tremendous comfort in these words and hope others, my beloved readers, will as well. I think it was Ram Dass who said that we are all just walking each other Home.

“I admire that you are not willing to sacrifice life, for survival.” – Harald Kasper, physical therapistperson-sitting-on-cliff

When I was two years old, I was standing in the front bench seat of our 1955 automobile when we ran into another car. My mother broke her pelvis, walked around to be sure all the children were safe, sat down and could not stand up. There were no seatbelts those days and there wasn’t yet an awareness of the lethality of motor vehicle accidents. As we integrated automobiles into our culture, the need for safety came to the forefront. During my generation, car seats for children became a necessary commodity. Some people wore their seatbelts and others did not. It was a choice, until it was not. When people were sustaining injuries and dying, wearing a seatbelt became law. Some laws evolve with the technology and some laws become obsolete as the culture evolves.

Recently, I have been criticize for choosing a lifestyle that is unconventional for someone as disabled as I am. After all, I cannot move a muscle from the neck down. I am completely dependent on my care team for every bodily function, except breathing. And I live in a remote mountain town that is considered the frontier, not even rural, which would have more medical services.

I have always lived on the edge of this paradigm we call life, but it has never been as obvious as now when I am breaking all the rules of what one should do when one is critically ill. From pushing my limits as an adolescent to riding my motorcycle to Key West during college (yes, I wore a helmet with a visor!) I have always pushed people who love me to their edge of reasoning, past their comfort zone. I don’t mean to sound cavalier about this at all. A lot of me wants to stay safe in the old, familiar ways of living life. I have to trudge through a lot of difficult feelings to summon the courage of forging new ground.

First, I have to feel the uneasiness of moving forward from a place I could call familiar, but as I’ve become more sensitive, I notice and incongruence. When I think of taking an an alternate route that feels more authentic, I have to wade through the density of darkness. When I dissect this darkness, it not only includes my own remnants of self-hatred, but also ways I’ve absorbed other people’s fear of the unknown. For me, fear is always a catalyst for entering this level of blackness. Being able to bear the pain at this level of malignant, self-hatred and, instead of retracting, going one step further and creating expansiveness around it allows the blackness to begin to lighten. Peering into the light, I can see the anatomy of this old, familiar feelings of unworthiness. Memories of all the times I’ve betrayed myself from deferring to other people’s truth. In deeper exploration, I was able to see the many times I was  willing to sacrifice my life for mere survival, which translated into sacrificing my significant need for autonomy for either of two reasons: to avoid feeling my greatest fear – being alone and helpless or to alleviate other people’s pain. Although the former is more conscious, the latter might seem noble, but, believe me, it is more insidious.

So, yes, I am on the leading edge of the natural death movement, something I hope will lead to “a good death,” not unlike the natural childbirths so inspiring in our area. And yes, it does push the old boundaries of the medical model, making people fearful of the issues like liability . I followed the medical model with my childbirths and I had two cesareans and general anesthesia. As many of you know about me, I don’t want to be fearful in this new birth.

I have always taken myself to the edge and rallied the resources to push a little further, so it would make sense that I would do that with others, especially being in the capacity of psychotherapist. My astrological natal chart reflects one of a powerful revolutionary with heart. It is ironic that when I cannot move a finger, I am still projecting that energetic essence. My daughter once told me that I go to places that scare her and show her that it is safe. During this time when people are creating a new paradigm for living and dying, it’s important to illuminate and dismantle that which keeps us from our birthright, living life and death fully and authentically.