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Your body is the church where Nature asks to be reverenced. ~ Marquis de Sade
Dispelling the Cultural Phobia Around Death
When faced with the inevitable challenges life brings, I have tried to meet each trial head-on, once I was able to tap into the hard-earned resources I have acquired through the years. The diagnosis of progressive multiple sclerosis in 2003, presented me with the greatest ordeal I would have to face in life. Mysteriously, when the symptoms began in the late 80s, I instantly grasped the profound level of disability that would eventually evolve from this illness. This resulted in the greatest fear of my life, yet I slowly began to move forward with the willingness to simply not know.
I and my family are coming to terms with the shortening of my life that used to be an abstract concept, but has become very real recently as my organs are beginning to shut down. Little did I know when the symptoms began, there was no treatment for this neurological disease. Meeting my death at 64, has presented my greatest challenge as well as my greatest opportunity. There may be no treatment for many of the these devastating neurological illnesses, but we ARE developing options to meet an inevitable and sometimes premature death, with more compassion, awareness, and humility. As our culture begins to meet death with greater acceptance, we are better able to care for ourselves and for each other. In doing so, we will be better able to meet our final transition with Grace and awe, knowing we are coming face-to-face with the Sacred.
Meeting the Unknown
When I recently realized my organs were shutting down, it took a while for my mind to grasp the significance. My modus operandi for meeting each physical challenge has been to just keep moving forward. Most of the acute obstacles to moving forward were in the form of injuries that had to be addressed immediately. Concurrently, there was the constant background noise, the signs of a continual downward trajectory in functioning. Injuries were easier to manage, because they had: the initial injury, a recovery time, and then finding a new baseline. Functional decline was more difficult to deal with. I was continually strategizing: being vigilant to avoid further injury, listening deeply to my body to what was wanting to be heard, and attending to the changes required. Due to the efficacy of this strategizing, I, and my beloveds, had become lulled into a form of denial that somehow strategizing could actually keep my body going, ad infinitum.
At this sacred time of shutting down a vibrant, generous, and loving life, I have begun my life review, which is a common practice once the shock and grief abate. Looking back, I am aware that I have lived a good life, yet as with any life well lived, I have also made many questionable and downright poor choices along the way. However, with this broader perspective, I am realizing that there really are no mistakes. Each supposed mistake was a learning experience that provided an opportunity for acknowledgment, forgiveness and led to more educated choices in the future. For me personally, it is about discerning how to live my life with greater integrity, authenticity, and grace as I move toward the doorway we call death.
It was merely ten days ago when it became obvious that my digestive system could no longer process foods as it had. Concurrently, my appetite plummeted and it was clear where I was in the trajectory of my life – that I was facing my death. I began to grieve acutely, revealing an understandable level of denial. I am aware of the many times I told clients that some denial is necessary during times of great change. I recognize that I could not have lived such a regenerative life without this ability to compartmentalize. My body was no longer wanting the fuel that would sustain it, so I knew my days were being drastically shortened and that I needed to consider my options carefully.
The Many Options Open to Us Now
Since Colorado passed the end-of-life options act last November and I had gone through the arduous process of securing the prescription, I had the comfort of knowing I had the safety net it afforded, should I begin to suffer needlessly. Another option would be to do V-SED – voluntarily stopping eating and drinking, a process my body had already begun. Although not eating felt voluntary on a certain level, I knew in my heart of hearts that if I were to live in full integrity, it would mean following the direction my body was leading. MAID and V-SED are both viable options, but they just felt too abrupt for this body at this time, given my lack of pain and suffering, at least at this time.
I knew my soul was ready to go and I wondered what it would take for the rest of me to let go and follow. My body was already beginning the process of letting go, but my mind had been strategizing for many years in order to live alone with this condition that demanded continually being in survival mode. Rejecting food appeared voluntary on the surface, but what I knew internally and was afraid to admit, was that it actually was involuntary and I felt to force it would be out of integrity. I knew my soul was ready to let go, to move on to my next adventure of going Home, but I felt conflicted, because it would cause others so much pain. Was I betraying my beloveds? Was I betraying my body? How could I possibly share this with others and feel their grief along with mine, when each of ours was so raw?
As I am sitting with the predicament, a new option has appeared. I could eat and drink only when there was the desire and open to my body’s natural timing. I could find the courage to completely let go of control, and see how this new way of being could serve me (and also serve others). Taking this option meant suspending any sense of knowing and opening to my loved ones’ love and generosity when I am the most vulnerable! This meant that I had to fully embrace being the recipient of so much love that it would stretch my remaining feelings of unworthiness that I knew I still harbored. To me, receiving love and not feeling deserving represents the last frontier of my arduous and sacred Work.
It is essential to clarify that this slow moving illness that is accompanied by very little physical pain is extremely unusual. If I had unbearable pain, acute cancer, ALS, or if I had less support or fewer resources, I would choose MAID in a New York second, as we said in New Orleans.
Given my propensity to struggle with letting go, I decided to write a love letter to my body/mind in the hopes it can finally relax and let go. Although it is very personal, I graciously want to share this with you, my devoted readers. Thank you for your unyielding support over the past months and years.
Love Letter to My Body
My dear loving body/mind, my precious vehicle for this lifetime,
You have served me well. Thank you for being a body with so much endurance and so much forgiveness. I am humbled at your service.
You have taken so many insults, so much abuse, and you have met it all with so much grace. You have had your bones broken, twisted, forced to go beyond your capacity, but you have served us well.
You grew two of the most amazing children I can ever imagine. And from them came amazing grandchildren and perhaps there will be more. I, Aliyah’s soul, will be watching, listening, ever giving my two cents, but always loving.
You have weathered quite a curriculum to teach me how to better love and that I am worthy of being loved. The former, I came wired with the ability, but the latter was more hard earned. I guess that is why it’s called a “curriculum.”
You have fulfilled your Sacred commitment to me with generosity and grace – I release you with loving gratitude. You are free to do what bodies do. You have served me to the utmost and I can’t imagine any better body to carry me through this life.
I will not force you to eat when your system does not want to digest. I will not trick your body with medications, I will let you shut down with as little struggle possible. I will help you let go, if your mind pushes you beyond your limits due to the guilt from perfectionism that has plagued you, or an unrealistic belief that you are necessary to lessen others’ grief. I will not abandon you. I will help you let go of needless suffering with whatever resources I have available to me with the same generosity you have afforded me.
Your mind has served me well. It has helped me be the first person in my family to have an advanced degree and use that in service to others. What better joy in life can there be? You have helped me to strategize an impossible curriculum with impossible circumstances. Without you I could not have accomplished living alone unable to move from the neck down for as many years as I have, touching so many lives. I learned to receive love and the greater challenge was I learned to ask for help.
Without my body and mind, I would have left long ago. We did really really well!
It is almost time to completely let go, to scatter joy to the earth, the air, and water, especially the water. We can know that we did what we came here to do. We can let go and let Love!
Weekly, Crestone’s Threshold Choir comes to sing a cappella at my bedside. Here is an example of one of their songs:
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The task is not to live our life in which we never got our hearts broken. The task is to become larger with each heart break. – David Whyte
In a past essay titled Mountain Metaphor, I described Michael Brown’s brilliant metaphor about life choices. Click here for the original or below is a [paraphrased] excerpt:
Some people feel deeply drawn to the Himalayan Mountains, so much so that they might have a photograph of the mountain range on their refrigerator and they are happy with that level of appreciation. Fewer people might have a picture book of the Himalayas on their coffee table and they are happy with that. Even fewer travel to India to see the Himalayas in the distance and they are happy with that. Some will go to base camp at the foot of the mountains and they are happy with that. Still fewer will have to hike all the way to the summit. Going to the summit is not for everyone. It is important to hear this with no judgment, no right or wrong, no hierarchy. People merely have different needs and capacities during their lives, different soul plans in each lifetime.
Recently, a dear being died after a prolonged struggle with multiple sclerosis after living a life of deep contribution, especially to young people. Since our first conversation in 1990, she has been in my heart and just a few steps ahead of me in this illness curriculum. While in my 30s, she was the first person to affirm my greatest fear, that my subtle neurological symptoms were likely early signs of MS. There are worse things to get than MS, I remember her telling me knowingly, because she had been diagnosed a few years before. Somehow, it was easier hearing this from her, someone who was, part of the club to which she would sadly welcome me when I was diagnosed at 50, than a doctor who was emotionally removed and outside of the club I now had the dubious distinction of being an intimate part of. As her illness progressed, I observed her Grace as the fear of my future grew, exponentially. For many years doctors told me my concerns were nothing, that I should just get on with my life. If I had known then, that this was the most progressive form of this neurological illness they call MS, and that there was absolutely no treatment, I don’t know how well I would have lived my life. I eventually stopped going to doctors who were, many inadvertently, peddling false hope in the form of pharmaceuticals with scary, permanent side effects. It would be many more years before I could find my own Grace and eventually Gratitude for this arduous curriculum. Today I am grateful to my friend and others I have come to know who have blazed the trail for me. This essay will explore how friends and their beloveds can help each other through the most perilous parts of our journeys if we can be open to the changing forms.
When my husband who had been with me prior to my diagnosis, during my diagnosis, and after my diagnosis, left our marriage after we moved to a new home in a new state, I was emotionally devastated. He had always been a fixer and when it became clear that this could not be fixed, he moved on. Although I came to understand this as a necessary parting of our paths many years later, at the time I was devastated. (Did I say that already?) At the time, the thought of living alone in a big house, in a new community, with a degenerative illness was more than I could bear.
I was reminded of a powerful and effective intervention in my psychotherapy practice when an individual was presenting with Major Depression (acute depression that leaves the person unable to eat or sleep), because they were brokenhearted after their long-term partner had left them, if they were able to feel the grief deeply and let in the necessary support from others, they might realize that they, in fact, had been the one who left the relationship first, emotionally. With this awareness, their partner had no other choice but to leave. If this can be acknowledged, there is often an existential shift and the grief may disappear completely. The story of having been left shifts into a whole new story of having ignored one’s own needs which unconsciously set up the leaving in order to avoid being the one who leaves. Byron Katie, founder of The Work, a powerful process for decreasing suffering in the world, describes this as the turnaround. If you are not familiar with Byron Katie’s worksheet, check it out. It could change your life.
When I heard my friend’s husband had moved on, it triggered my own feelings of having been left. [Caveat: This is MY projection. I know her husband and he did not in any way move on or away from her. His commitment to her I found exceptional and I have told him so many times.] All of my feelings from ten years ago resurfaced as if it had just happened. With that level of grief, I knew I needed to speak to my friend directly, to go into deep meditation, not too different from what I learned in Gestalt therapy in my late 20s and that is exactly what I did. Whether one believes it was she who came forward, a projection of mine, a symbolic story, or a Guide speaking on our behalf, it doesn’t really matter; I know that the information I received was not in my awareness before this auspicious meeting.
I was able to hear from my friend something very personal that only those in such a club could share. She told me that we had agreed before we took bodies to go all the way to the summit, no matter what the cost. And she continued that we had actually left them, because we had to in order to get to the summit! She told me that our partners had their own paths they needed to follow and that we are all still connected exactly as we should be, despite what our consensus reality indicates. In the past, I remembered seeing a photograph of my former husband’s new partner playing lovingly and joyfully with my former grandchildren. At first I felt heartbroken, betrayed, and unworthy. Then, it occurred to me like a revelation (the turnaround) that I was doing exactly what I needed to be doing! With that realization, all of the grief disappeared and what was left was a sense of honor, dignity, and self-respect much greater than the grief I’d previously felt. I also experienced gratitude toward his partner for being able to be there for my loved ones I’d never gotten to know. My friend reminded me that she and I were, indeed, fulfilling our soul agreement and so were our partners.
During a time of self-doubt, Terri Daniel, an author, educator, and end-of-life advisor who became a dear friend once told me, Your life is an expression of the highest possible commitment to spiritual awakening. I am reminded of that quote by Donna Roberts ~A friend is someone who knows the song in your heart, and can sing it back to you when you have forgotten the words. Thank you Terri, you have been there when I most needed you.
In my heart of hearts, I know I had no other choice but to aim for the summit. She and I had gone to the summit and our partners supported us according to our respective soul agreements. Her husband had once told me that the three of us were in the same lifeboat together. He and I have had many soul-level conversations over the years for which I am deeply grateful. Perhaps she was telling me that we were in the same soul family and her husband used the lifeboat metaphor to express this. Friends – we just cannot do this in isolation, can we?
I am not special. Everybody has their own zenith they must reach at some point in their life or lifetimes. Perhaps our summit is indistinguishable from our eternal Home. Martin Luther King, Jr spoke of the promised land in his mountaintop speech. I want to end this essay with this speech that he tearfully, fearlessly, and prophetically delivered the day before he was assassinated fifty years ago:
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.
(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.
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.
We are all beads strung together on the thread of life. – Amma
I was a determined willful child, not easy for a parent to raise, but with these qualities I developed the necessary skills for living life well with extreme physical challenges. In my household growing up, I wielded a lot of power which does not make for a happy child or a happy family. Parents who are secure in their authority teach their children surrender, a necessary skill to avoid becoming an egocentric adult. We often learn to surrender to a higher power when we have a masculine influence who is in right relationship with his/her authority – not dominating to create powerlessness in the child, but confidently guiding the children toward empowerment and respect. As this quality is modeled, the child grows up with self-confidence and self-respect. Our culture is confused about authority and healthy balance rarely evolves naturally. When a parent is unclear of their own power, the child must learn with surrogates to learn their ego is not the center of the world. In a culture where egocentricity is the norm, many different forms of addictions develop. Fortunately, there are many paths and programs to help individuals surrender to a power greater than themselves. Life has a way of dancing us into the rhythm of a spiritual life, whether it happens consciously or not.
I grew up Jewish, but I received my first holy Communion in a Catholic church when I was a tween. My best friend, Cathy, came from a religious family where many of her aunts and uncles were nuns and priests. She and her brother were adopted from St. Michael’s Children’s Home very early in life. We were inseparable during the summers where we lived at a lake. Her family recited Stations of the Cross every night and I knew the Lord’s prayer and Hail Marys by heart. I often went to church with them on Sundays. We went everywhere together and it seemed natural to follow her when she went to the front of the service for communion. When I realized not everybody was following us, I looked back at her family who looked shocked, but motioned to me to keep going. I received the host that day. There was no fanfare, but looking back at the many different initiations in my life, that was surely one of them.
During my years of exploration, I also received a Gohonzon, a sacred scroll in Nichiren Buddhism tradition, I received 2nd° reiki, which is an attunement of the heart for activating a healing technique that transmits Universal life force energy through the body, and, in my teens, I was confirmed in the Jewish religion.
Although I received these different initiations through my 20s, I refused to believe in a God that was imposed on me, externally. Having read some of the Old Testament, I refused to believe that God was a man in the sky with a beard who doled out punishments to those “he” felt deserving. I would not suspend my innocence for such a harsh teaching. At this point, my will overrode anything I deemed irrational.
In my 30s, I participated in a progressive psychotherapy community which involved attending three groups per week and five-day intensives at the Gulf Coast beach. Through this concentrated experience, I was able to access my own authentic understanding of what God is to me. As I looked around the group and felt the love and acceptance I had always yearned for, I realizing that I no longer felt the depression that had been with me my whole life. I realized in that moment that all everybody in my circle wanted was to be seen and feel loved. In this circle of beloved souls and while learning to resolve any conflicts that separated us, I learned that love was the medicine that drew out the poison of what ever ills were in the way of our connection to ourselves and each other. In that way, I understand what Ram Dass means when he says, “All sickness is Homesickness.”
With this realization, an internal shift happened and I had the felt-experience in my heart that God is love. In this circle of my Beloveds, I witnessed one person after another transform fear that might have taken the form of anger, resentment, or hatred into love. My whole worldview shifted in that circle and I have not deviated from that belief since.
Knowing that love and fear cannot occupy the same space and having experienced much fear in my life, I have become adept at seeing the many forms fear takes by understanding all the forms of fear I experience. When I feel separate from others, either through anger outwardly expressed or inner self-loathing, I notice there is always a thought that triggers separating behavior. Identifying the thought that precedes the reaction can be transformative and restore the desired connection. Once this is mastered, compassion just happens. This is not an easy practice, but a necessary one to restore love and compassion for self and others.
My willfulness served me well to find my own experience of God, the Divine, Source. I was not one to follow others blindly. I believe everyone must arrive at their own experience of God and this perception will change as we change. It is not something that can be imposed on another person, in my opinion. Arriving at one’s own sacred sense of the Divine is one of life’s greatest teachings and surrendering one’s ego to a power greater than ourselves, no matter what one calls this power, is the only way to true liberation.
By finding peace inside of us, one person at a time, we can come together as a collective in peace. That is the medicine that is so needed at this time. Namaste. I bow to you.
You are a drop and God is the ocean. Just allow yourself to fall back into it. – Michael Brown
Healing means different things to different people. For some people, healing means that the body ceases to have physical symptoms that were causing discomfort. Once they heal physically, they may choose to inspire others who are suffering. Healing on this level can bring physical and emotional relief and inspiring others can be a valuable contribution. Many of us experience this level of healing, frequently.
Some people who heal physically also heal mentally (thoughts) and spiritually. They often have a broader story of healing to model and to teach others.
Some Self-selected individuals may have taken on challenging curricula in order to heal personally and to accelerate their soul family’s journey, called soul contracts. (Many are not aware of this consciously, but that doesn’t negate the likelihood.) Often these people heal mentally and spiritually, but not physically. Myself and, I suspect, many people I know with progressive, incurable illnesses have chosen these rigorous paths while in Spirit. Not for the faint of heart, these distinct teachings can reduce the emphasis on of the ego in the physical world, if embraced with awareness. Our personalities are egocentric and limiting our identification with the ego can open doors to the numinous. In my experience, the more catastrophic my curriculum has been, the more liberating. Living this curriculum with grace can spread these teachings through the collective, to the seen and unseen worlds.
Occasionally, I come across others who appear to have similar curricula for whom I feel an instant kinship on an intuitive level. Marc Stecker, AKA Wheelchair Kamikaze, a fellow blogger, profound in his scope, humor, and development over time, is one such individual. If interested, you would do well to follow his blog.
Some healers who have healed physically, mentally, and spiritually have developed their own processes to help bring the collective forward in our development toward finding peace in our lives. One such teacher is Michael Brown, who I have spoken of in previous blog essays, because I find his work profound. Fellow psychotherapists/colleagues have used The Presence Process with their clients to deepen their therapeutic work. He has many YouTube videos along with his book to guide people through his teachings.
Michael often uses different parables and sacred Stories in his teachings similar to the stories disseminated by indigenous cultures. Here is one of my favorites:
He teaches about the three stories we tell ourselves. The first story, is of the “bad” one—about our damage, our victimization and how this shaped us—even how it might have driven us to doing some good things in the world, but how we were driven by the ghosts of our childhood or loss of parent figure [literally or figuratively, perhaps searching for the nurturing (mother) or direction (father) we’d never had], at some juncture, to enter the world in search of the missing parent in the external world. That’s the first story.
The second story is the flip side of the “bad”–it’s the “good” story of what we found on our search for our missing mother or father figure and how when we got down to the bottom of it—the details of the story dropped away and we met this energy inside, not outside of ourselves—and we felt a foundation of self-love at last.
The third story includes his spin on the word “Legend”—-he says after living the “good” and “bad” stories in a lot of fullness, we are completely freed from the history of those—we don’t carry the wounds in the same way, we don’t organize our waking moments around the same obstacles or false longings—and everything is different and we aren’t questing in the same sense—instead we just enjoy being as we symbolically stand on the ledge of our life, on the very end of the ledge of our life. And then we step off—and we live our own ” ledge-end.” We are free to define ourselves, our work, our resources, our abundance, our relations—in any way we want that serves this open-endedness we have stepped into.
When we are in our “bad” or “good” stories, there is work to do that can be grueling, because we must feel the grief of each story fully.
We each have our curriculum that is sacred and perfect for our lifework. From healing the issues with our mothers, or those who may be a surrogate for mother, we learn to nurture ourselves. From healing the issues with our fathers, we understand our perspective on God, the Divine, the Source of Universal Love. To do this, we must pass through the illusion of separation Stephen Levine described it well when he called it, “learning to opening your heart in hell.”
Whether we access this Knowing now or later in our development, our Beloveds have entered an agreement with us, soul to soul, for the well-being of all. And it is through this level of awareness of the soul, beyond the ego, that opening our hearts in hell is possible and finding peace can be a true reality.
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.
