You are currently browsing the category archive for the ‘Uncategorized’ category.

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.

Advertisements

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.

Feeling good is not the point – it’s being connected so that the highs and lows don’t matter. You spend less time at the mercy of all those heavy negative thoughts. – Krishna Das

My brothers were born four years apart and five years later I was born. They slept in a bedroom together and I slept alone. I don’t know when the terrors started, but I had a very hard time getting to sleep. In the new house where we moved when I was three, I was on the opposite side of the house from my parents. I would call to my mother, sometimes frantically, and she never came. I cried myself to sleep every night and sucked my thumb until I was eleven. I didn’t like being alone every night in that solitary room, where the lights from the traffic would shine across my wall and keep me awake.

One time my father came to my bed and asked me how I was feeling. I talked to him about how my legs hurt and he told me they were growing pains. I shared my deepest secrets about how afraid I was of the teachers and how I could not go to sleep at night. He taught me a self-meditation technique to help me sleep; I still use it to this day. Although he came to me only one time, I remember it like it was yesterday. I wonder if they consciously considered whether to talk to me or let me learn to self-soothe. I doubt the latter, because there was little conscious conversation in my home growing up. They just didn’t have the capacity. My fears escalated along with my anger.

I began to refuse to go to school; my teachers were too scary. My mother pretended to call the truant officer to report me, so I reluctantly went. Tough love. My mother was tough and distant, emotionally. It wasn’t until my 50s when she was dying that I actually realized she’d always loved me. Some people never know, so this is not a complaint or a tragedy, it’s just what often happened growing up in the 50s.

Being born in July had its advantages; we lived on a natural lake during the summer. It was a simple, intimate lake, before it became a resort area. I was happy there and so was my family. However, being born in July when the sun was in Cancer meant I had the potential to be hyper-sensitive, moody, and overly dependent/clingy. A clingy child and a touch-me-not mother created quite a challenge for compatibility and connection. The casual lifestyle at the lake nurtured my more positive traits: spontaneity, athleticism, in a community that loved nature. I didn’t fear being alone in my bedroom at the cottage, but when we moved back to city life each year my whole body contracted. The isolation, the inactivity, the stark school with the scary teachers were overwhelming.

My pillow was my transitional object and I kept it until well after I was married. During my early life, I avoided being alone at all costs, and the costs were dear. I clung to unhealthy relationships much too long. I did, however, experience a great deal of self-love when I finally had the courage to leave. Finding the courage to leave unhealthy situations seemed to be the edge I needed to meet what some call the Great Aloneness. There is an expression – we come into this world alone and we leave this world alone. That used to sound sad to me, but once I was able to hold grief long enough to fully feel it there was a shift and I was able to finally feel safe and to begin to love myself, deeply. I see that only by feeling everything, instead of feeling good, can self-love really be acquired. One must grow into it. I certainly had to.

It was only through experiencing the Great Aloneness that I began to understand that in our core we each want the same thing, to feel loved, and when we mature spiritually we begin to know that we are loved. If we follow this thought and are able to stay with it, our Awareness grows and we find that we are Love. When we internalize this, we open to the Knowing that we are all one. I was working at a community mental health center in Louisiana when this awareness began to take root. I remember the timing clearly, because my supervisor asked me to propose a password for the state computer system. I offered, “Allone,” imagining that in our area of the state of Louisiana, at that moment in time, everybody would be using Allone as their password to enter the mental health system! I love that irony/synchronicity. Don’t tell anybody, but this is still my password, or variations of the theme.

The moments I have felt most connected to my heart, connected to my Beloveds, connected to the Universe, have been the times that I Know that we are all inextricably linked, all one being, and that we are only separated by the belief, a mental construct, that we are separate. Many people fear loneliness, but loneliness is never about another person. It is and has been only through the felt-sensation of Oneness that I know this to be Truth.

I don’t for one minute believe that one has to be facing the end of their life to enter this Knowing that we are all one and we are all in this together. Crises can accelerate this awareness. They have a way of cracking open the defensive hardness that appears to separate us. By practicing empathy and forgiveness of the self, the boundaries of protection fall away.

Then, all that is left is Love. And, it is love, that we truly are all in together.

**This essay is dedicated to Kirsten Schreiber, my dear friend, sister of all ages, who nudged me to finish it.

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.

The higher we soar, the smaller we appear to those who cannot fly. – Frederick Nietzsche

There are times I feel on the periphery of life, that life is an illusion, and not feeling a part of it is, perhaps, less illusory. I’ve heard the theory that our dream life is more real than our waking life. Much of the time, I feel I am living in a liminal state on the threshold of a great adventure.

On the other hand, sitting in my chair twenty-two hours a day, does not preclude me from experiencing a vital and extraordinary life. I thoroughly enjoy the care and relationship with my caregivers, family, and friends. They know how important they are to me and how much I love them. They also know that I love my alone time. I tell them, I love when you come and I love when you go. This statement often relieves any concern they might have about leaving me alone, as I add, I am good company.

Some of my time is spent connecting with people online, supporting people experiencing grief, change, or even perilous challenges in their lives. I enjoy listening to podcasts, my friends’ blogs, archival news programs, or advocating for the latest issue I feel passionate about contacting senators, congressmen, or other officials. I call my chair command central.

The fly can survive the harshest living conditions and still manage to feed, grow, and breed. It is one tough survivor and plays a vital role in the cycle of life. Sometimes I feel like a fly on the wall of life. Often there is sadness when I cannot connect with my family when desired or when I feel out of sync with their lives. If I could fly and visit them on the East  Coast and share their lives, that might be a different story. Recently, I read a book by Robert Monroe titled, Journey Out of the Body, published in 1971, about the author experimenting with separating from his physical body. He was a scientist and took meticulous, contemporaneous notes. When he finally achieved his goal, his hand went through the wall feeling multiple layers of texture until he was on the other side of the wall and could journey freely without the encumbrance of his physical body.

Lately, when I think of myself as a fly on the wall, instead of feeling like there is a wall between myself and others, this wall is beginning to thin, to become permeable. It feels more like a portal, a sacred threshold leading to a sense of freedom I have never felt before in this lifetime. Intuitively, I just know on the other side of the wall is an expanded space of connection and love.

When I was a child, I used to have flying dreams. I could leap from building to building. Flying dreams are common, but often diminish through our lives. I wonder if, as one nears the end of one’s life, these dreams reawaken. Perhaps there is a Knowing that’s getting evoked, like recovering a memory.

People ask me how I could possibly feel so calm, so accepting of my physical circumstance. I sometimes sense a recollection of plans made prior to this lifetime. They are not vivid memories, but more allegorical. The feeling that I am in exactly the right place, doing exactly the right thing, is quite literal.

It is, perhaps, this knowing that gives me the peace and calm that is perceived by others and it is, perhaps, this Knowing that forms a bridge from this reality of matter to the numinous.

Soon enough I will get my wings and fly away from this beautiful life, this identity, this extraordinary curriculum I have so dearly cherish. And in that Knowing, I have no doubt I will assist my loved ones from the other side and be like a fly on the wall, ever persistent and ever present.

Where are you? Here. What time is it? Now. How are you? I’m okay. – Questions Ram Dass suggests during a time of crisis.

Our bodies are finely tuned instruments, whether they behave the way we would like, or whether they are following instructions beyond our ego’s desires. Someone who healed from multiple sclerosis once told me, “Our bodies are desperately trying to heal.” At that time, I wondered why the hell mine wouldn’t. I just knew that if I could heal I would, but something greater must be at work. Nevertheless, I felt betrayed. The feeling that my body was not in sync with my desires and understanding the trajectory of where this could go were more than I could bear at that time.

During my early years, my body was merely a means to an end. I had little communication or relationship with this sacred vehicle that would carry me through life. I had little understanding of how to care for, appreciate, and love this apparatus on which I relied so dearly. Not until my body showed symptoms, did I truly begin to listen.

I was born with an interesting paradox, astrologically. On one hand, I was born under the sign of Cancer. People born in July are often deeply loving, nurturing people, and often with a fear of rejection and, therefore, can have a tendency to sidestep issues, like a crab that walks sideways. I also was born with a fierce determination to meet things head-on and with the inclination of a revolutionary (Mars and Uranus conjunct the Cancer Sun). Learning to harness the latter energies and lean into the former were many of my struggles during my early years. Becoming a competitive athlete was natural to me; harnessing my will and dealing with my fears and oversensitivity were more of a challenge. Some people believe they are limited by their astrology, but I believe we  consciously choose these constellations to help us go beyond the limitations with which we entered this incarnation. Contrary to some beliefs, we are not born as a blank slate, we have Work to do and astrology can be a roadmap for that work.

In the late 80s, when subtle neurological symptoms began to occur I felt immobilized. Fear had taken over and I was afraid to move forward. I remember awaking one morning, still groggy from sleep, and hearing the words, With the symptoms come the Renaissance. I looked in the mirror attempting to ground myself, “What does Renaissance mean? Rebirth. With the symptoms come the rebirth.” I don’t know where this message came from, I just knew I couldn’t forget it. Still immobilized with fear, but with this new possibility, my very intuitive and direct 10-year-old daughter, sensing my trepidation, said to me, “Mom, you need to get a life!” With guidance from unlikely sources, I decided to do just that.

I began singing lessons with a well-known soprano from the St. Louis Cathedral choir. The crab in me wanted to hide, but another part wanted revolution, liberation. I had the intuitive knowing that singing would open my throat center, the area where self-expression can be blocked. To this day, I have a fear of speaking out, a fear that what I have to say will, somehow, hurt another. Causing others pain would inevitably lead to my primal fear of rejection. During the early days, I learned to temper my authentic power and developed an artificially sweet voice to compensate for the overwhelming anxiety. The blockage was clearly centered in my throat.

With this awareness, I gradually learned, ordeal after ordeal, that rejection from others was impossible when I could rely on my own resources; I could trust myself and my internal guidance. No longer being tethered to others elicited a freedom I had never known before this body journey. In my case, I was to learn over many years that illness was a course correction. Many people feel betrayed when their bodies behave incongruently with their wants, but the body has an intelligence that is following instructions beyond the ego. If we befriend our bodies and listen deeply with extraordinary courage, we can open to guidance that heals our souls. Renaissance is possible, if we trust a power greater than ourselves, with faith and gratitude.

This path has not been easy, but I don’t think we come here for easy, especially during this time in history. Recently, I woke up at 3 AM gasping for breath. This episode went on for three hours! I wondered if this was just another symptom I would have to accept, as I cried in desperation. After a few hours, I realized I had some difficult issues to discuss with someone close to me, that my primal fears were triggered and I remembered my voice lessons. (It was during my voice lessons that the symptoms began.) Our bodies know.

What if, instead of accommodating the symptom of breathlessness, I leaned into it, listening to the blockage in my throat and what it had to tell me? Perhaps, if I could do this, there would be no need for the symptom. Once I finally faced this fear head-on, I knew I would not have trouble breathing, again. It was miraculous how free of fear I felt, because I listened to my body’s wisdom.

Sometimes, listening to the body doesn’t tell us what our ego wants to hear. I’ve heard loud and clear that my body is manifesting a teaching much greater than a fear of speaking out and that this rigorous curriculum is not for me to understand fully while I am embodied. This can be particularly true when the curriculum involves a catastrophic illness or injury. It is during these times that we enter the Mystery, where Grace becomes a real possibility.

By opening to our body’s wisdom, we can begin to open to a sense of well-being that is beyond this earthly realm; it is on the level of the soul.

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?

For my patients who have used this law, I was honored that I could be with them every step of the way, ensuring that they were cared for, and that they had control of the final days of their lives. That’s what death with dignity really means. – Nicholas Gideonse, MD 

When I was a child, I grew up on a natural lake. I was probably in the water eight hours a day. My family called me a fish. As I got older I learned to waterski– two skis, then one, or slalomming. I was on the swim team in elementary school, delegated to the 500-yard freestyle, because I was the one with the physical endurance to swim 5 laps, straight. During the summer I rode my horse, daily. In high school, I was in the snow ski club. And, in graduate school in New Orleans, I rode horses and ran road races in the scalding heat of the Louisiana summers. Needless to say, I was always physically active and athletic.

Running was the first ability I lost. I was 47 years old, with two children, a horse farm, and a psychotherapy practice. Within three years, I could no longer ride my horse and I started tripping and dragging my right foot. While carrying my computer, I fell on the wood floor and broke my patella in half, which led me to a walker. Although I dreaded using a walking aid, I was glad for the safety it provided. That was, until I fell on my walker and cracked my sternum.

With a cracked sternum, standing, sitting, any movement was excruciating. I’d bruised ribs in the past, but nothing like a sternum crack which required assistance for any movement. I was losing my autonomy. Around this time, I began having “accidents,” incontinence particularly disturbed my husband. This affected my dignity.

After failing to engage the brakes in my car quickly enough and finally stopping in the middle of a busy street, I realized that I would never drive another car and risk endangering a life. I was losing my independence. I was still able to drive the golf cart on the farm, which gave me  some sense of autonomy, but all of the chores were left to my husband, which was not our agreement when we purchased a labor-intensive horse farm.

My husband was becoming more and more irritable and resentful. Burdening loved ones is another huge fear to an active person becoming disabled. Each of these losses could lead to major depression, but having been a therapist or in therapy much of my life, I have the internal resources to deal with these stressors. Fortunately, I was not financially dependent on my husband or the government. I cannot imagine the level of suffering people encounter, when terminally ill, who are less resourced than I, either internally or externally.

After cracking my sternum, I was almost relieved to sit in a chair where I was safe from excruciating injuries. “You don’t get the small stuff,” exclaimed the doctor who read my patella x-ray. So, sit in the wheelchair, I did.

Probably the two worst symptoms of progressive multiple sclerosis are heat intolerance and intractable fatigue. I used to call it “crying fatigue,” because all I could imagine doing was to lay on the floor and cry. It was not grief or sadness that led to crying, but intense exasperation, with no emotion attached. Only someone with chronic or terminal illness can understand this level of pain and suffering.

After Katrina, when we had no air-conditioning for a month, in the heat of the Louisiana summer. I remember stumbling to my car with my walker, turning the engine on, sitting in the air-conditioning and crying. I knew I could no longer live in this state of Louisiana that I loved, that the heat and the hurricanes were more than I could bear. I no longer had the endurance of the 500-yard freestyler or the independence to care for myself with a partner who was beginning to resent me more each day. We would move to Colorado. I thought that would solve many problems, but little did I know my life was about to, once again, change forever.

On the way to Colorado, a wheelchair accident resulted in my femur being shattered, the largest bone in the body. It was shattered so badly, that the surgeon had to scrape the pieces together, to screw the stainless steel plate to something. This is where my book Meet Me By the River – A Women’s Healing Journey begins and chronicles my life from devastation to deep gratitude and joy. (Shameless plug.) From the hospital, I was discharged to our new home in Colorado. Six months later, my husband/partner of 11 years left and I, reluctantly and not very gracefully, was to learn how to live alone with this degenerative, neurological illness. Fortunately, I had the financial resources to not be a burden on my family for at least a decade.

Many people facing terminal illness embrace a spiritual life for the first time. Even if they were religious, their beliefs take on greater meaning, much like a spiritual initiation.

I began to see these physical limitations as directed by a higher power. I no longer saw them as punishment or some failing on my part; I saw the Universe as loving and I saw how my ability to impact myself and others was much more effective in this condition. The healing in myself and others was profound. I began to love this illness and see it as a course correction that was leading me to my highest purpose in life. The joy I experienced was infectious. The help I could provide to others was more than I’d ever imagined, with an able body.

As the illness progressed, I began to assess the level of suffering I was experiencing. At some point I knew that my suffering would no longer be a positive catalyst; the suffering would be needless. This pivotal point is different for everyone, depending on their capacity to process the pain and suffering, their level of development, and the Mystery beyond our limited knowing.

In November, the Aid-in-Dying law became legal in Colorado. The most common reasons people choose Aid-in-Dying are loss of autonomy, becoming a burden on one’s family, loss of independence, financial concerns, loss of control of bodily function, fear of uncontrollable pain, loss of ability to participate in pleasurable activities, and loss of dignity. (I highlighted some of the issues that cause me the most suffering in red.) This law is well-crafted to protect the vulnerable from abuse: one must be in the process of dying, be of sound mind, be able to self-administer, and no other person can benefit from this choice.

Opponents of this law often use the word suicide to incite people, emotionally, in my opinion. I have assessed suicidality for 30 years as a psychotherapist. When suicidal, a person wants to die. I have talked many a person “off the ledge.” It is an insult and a misnomer to ascribe suicidality to a person in the sacred dying process, who is finally able to surrender and let go. What a harmful imprint this could leave for the family to carry. Words have power.

All of this being said, my first choice would be to die naturally. Unfortunately, people never die from MS, they die from “complications from multiple sclerosis.” The complications can be: sepsis from pressure sores, choking to death which has to involve a beloved caregiver trying so hard to keep me alive, drowning in my own fluids from pneumonia, or some other horror I don’t yet know about. The best option I could hope for would be failing to thrive, or starving to death, slowly. Keep this in mind when considering choice.

Societies that rule with a more parental, autocratic style usurp one’s sovereignty for making choices for themselves and their bodies, which includes how they might want to leave this beautiful world. These regimes characteristically manifest a disregard for women’s rights, or a disrespect of the Feminine. (I use “the Feminine” as a term applicable to either gender: having more of a tendency toward vulnerability, empathy, and sensitivity. These are values that have been punished for nearly 5000 years.) Hopefully, we are integrating more feminine values moving toward a kinder, less violent world.

In the meantime, if I begin to feel complete with this lifetime and ready to let go and serve my loved ones from Spirit, do not conflate this sacred decision with suicide. This is not suicide. I do not want to die. My life has always been about service and learning to connect more deeply in Love, I know myself and I know this intimacy and animation will continue, and, most likely, express itself in a much deeper Way.

There is a crack in everything. That’s how the light gets in. – Leonard Cohen

Throughout this journey of chronic illness, I rarely speak of the nearly unbearable grief I’ve experienced, as my body slowly failed over many years, and progressed rapidly over the last decade. I almost exclusively describe the gifts I’ve received by facing the challenges with determination and courage, not so much, the heartbreak.

My children were three and nine when the symptoms began. I remember driving my son to elementary school and praying that I would be able to meet his and his sister’s needs through high school, while my children were completely dependent on me (and I, probably, on them). Who would drive them to school, accompany them to soccer games, dance performances, and Mardi Gras parades? Who would talk to the teachers when they had conferences in school or problems with their friends? How would I be able to go to therapy three times a week to heal myself emotionally to better meet their growing needs? My life had become totally unpredictable and everything was on the table for catastrophic change.

When the first symptom began during the late 80s, my first thought was for my children. What kind of legacy would this leave  them? The terror I felt about not living up to my greatest responsibility and privilege was more than I could bear, or so I thought at the time. I’m sure the specter of desperation followed me and shaded every choice I made during my 40s and 50s. Not all of my choices were well thought out and generous. After all, I was losing my physical strength that had carried me through many challenges – if I could count on anything, I could count on my body – and my body had been the vehicle for much reliability and joy in my life.

I began running road races with my daughter when she was three during the heat of New Orleans summers, I swam laps for miles and miles to restore some semblance of well-being and hope for the future. I believed if I could heal, it would be in the water. This does not describe the radical lifestyle changes I made or trips to India for stem cell treatment and many other alternative treatments.

When I see the look of shock and despair on people’s faces when they meet me, see my profound physical limitations, or hear my story, my common line is, “My life is not a tragedy.” Well, it isn’t, but it has been marked with many tears, regrets, and feelings of despair along the way.

My hospice workers tell me I am a legend around their office, my friends tell me I am a hero. Well, I’m here to tell you I have made desperate choices in my life that have deleteriously affected my children, I have lived with a great deal of fear, depression, and cowardice. I’ve cried an ocean of tears. No one facing catastrophic illness or injury should ever feel reticent about expressing their grief. It is through the cracks where the light gets in.

I have grown through this illness. I probably have grown some heroism. I am also human with human frailties. Human nature is an incredible thing. If I can do this, anybody can do this. About that, I have no doubt.