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The truth will set you free, but first it will piss you off. – Joe Klass

Ram Dass and Reb Zalman

I have always been an independent person. I have jumped off mountains in California and Maine with rappelling gear, I rode my motorcycle to Key West alone for weekends in college, and I learned to jump my very large thoroughbred horse when I was nearly fifty years old.

Today, I find myself unable to move from the neck down with continued weakening of any peristalsis in my body’s alimentary canal that moves food North to South, or East to West if lying horizontally, an asana I assume throughout much of the day and night.

My sense of autonomy has always been important to me and is fiercely defended by my will – condolences to my parents and gratitude to my husbands. One of the most difficult parts of aging and/or disability is losing one’s autonomy. 90% of the people who choose to end their life using medical aid in dying (MAID) is due to loss of their autonomy.

Erik Erikson, a German-American psychologist whose work was covered extensively in my Masters degree program at Tulane University in the 70s, developed a theory of human development comprised of eight stages from birth to adulthood with each stage ending with a developmental crisis that led to the next stage. He was best known for coining the phrase identity crisis.

Stage II of Erikson’s model involves developing a greater sense of self-control. It has been commonly observed that when individuals age, they revisit the psychosocial stages of development from childhood. Often children end up parenting their adult parents either physically, emotionally, or both. I believe multigenerational healings can occur during this reversal of roles, when unresolved issues from the past resurface to be healed. Occasionally, the trauma is too great to be reworked or it is just not time, which can be overwhelming. Families get through this time the best way they can. Perhaps, if people can cultivate a sense of empathy, either through counseling or other support systems, working with these crises can be extremely restorative.

In this essay, I will explore my own personal experience of how Erikson’s second stage Autonomy versus Shame and Doubt has manifested to clear residual shame and doubt during the end of my life. Each stage has its own particular challenge, it’s crisis of identity, but each stage moves toward healing, interdependence, and communion/love.

For me, letting go of control has always been a challenging requirement in this theater called life and often I do it kicking and screaming, with sometimes bone shattering consequences, quite literally. During major transitions, letting go and trusting the natural process of life has been a challenge for me. Giving away my power to external sources of authority in lieu of trusting my own inherent wisdom has been a related and recurring life lesson. Mediating between the two tendencies of deferring authority and needing autonomy during this end-of-life time has been challenging.

Last week, I experienced a sense of anxiety so huge that with my level of frailty, it could have ended my physical life. Nevertheless, I decided to sit with the fear, not an easy ask. This is probably one of the hardest spiritual practices, to sit in the place of not-knowing. (Ironically, all I really can do is sit, but I could have distracted myself, or quite honestly, having the lethal prescription, I could have chosen this as my exit point, if the suffering was too great.) There is no right or wrong decision. Each has their own sovereignty to decide for themselves. Instead, I decided to just BE with it to see what would emerge. Fortunately, I also have been given healthy doses of determination and stamina to meet these areas of limitation.

I sat and felt more and more fear until it was beyond overwhelming. I called my very skilled caregiver/fellow traveler to be with me, revealing yet another challenge in my life – asking for help. I just knew I could not go there alone. She tenderly affirmed she was there, completely present, and available for whatever I needed. With someone I trusted deeply to hold the container, I went there.

It was like entering a dense orb of anxiety that had been suspended in time. I was transported to the pregnancy with my first child, which had been one of the most joyful times of my life. Once it was time for her birth, however, I found myself feeling completely alone and unsupported, with no sense of trust in the natural process. Feeling that vulnerable, I asked the doctor for a cesarean which started a series of events that spun completely out of control. I was given a general anesthetic that upon awakening left me in tremendous physical pain and completely disoriented – Where is my baby? Two days later, when the confusion began to clear, I demanded they bring my baby to me and called my mother who got on a plane immediately. The doctors threatened me, because that was the 70s and they didn’t yet have the practice of rooming in, nevertheless, I persevered – alone, helpless, and disoriented, I persevered. Two days post cesarean, I developed a postpartum depressive reaction, the likes of which I’d never before experienced. I just did not have the internal resources to integrate the trauma. This was before midwives and doulas were welcomed in hospitals. I felt completely ill prepared for the onslaught of feelings of fear, helplessness, and shame.

Just recalling the memory makes me cry all over again. Then I realized that this orb of unresolved feelings, now relegated to my unconscious, were familiar and had recurred a few times later in my life. Each recurrence left me with the exact same feelings – fear, helplessness, and shame. It began to make perfect sense that it would resurface as I was preparing for another major transition – dying! With this awareness, I felt gratitude that this ominous trauma had reemerged into my awareness. I felt in awe of the natural order of life during this auspicious time. When confronted with the end of one’s life, the holes in our souls caused by past trauma can become more evident, along with the neurosis that had taken up residence. These are the places that most need our love and acceptance for healing. In our culture, I’m sure these karmic appointments often get medicated away. Again, no right or wrong. For me, this was an important piece to clear before my final transition of birthing myself through the doorway called death.

At this point, I would like to digress to the timely issue of aid in dying in our culture. Personally, I am grateful to have the safety net of having the prescription in my possession, whether I choose to use it or not. I am grateful I was able to open to my greater suffering necessary to meet the emotional crisis presented at this sacred time of transition. When I secured the prescription, I made an agreement with myself that I would not use it to avoid anything emotionally uncomfortable, but because I was ready to go forward. I intuitively know I don’t need to endure needless physical suffering. It is my style to confront obstacles for my greater good. I wouldn’t begin to make this decision for others or take it away. One of Erickson’s criticisms has been that he excluded the emotional and spiritual aspects of development. I don’t have that limitation in my toolkit. If you know me, you know I am fierce with passion and determination to fill these holes in my soul with love and joy (and anybody else who crosses my path).

During the aging process, losing one’s independence and sense of control in life can lead to despair as the body deconstructs. In his own words, Erikson reflected on his view of his life now in his 80s, You’ve got to accept the law of life, and face the fact that we are disintegrating slowly. Deconstructing the developmental stages that were so hard won when we were young is a mirror image which requires acceptance and letting go of will. From a spiritual perspective, one needs to shift from the egoic level to the spiritual, which is not a path for everyone. Sometimes, what is called for is just planting seeds and that is enough.

In their ninth decade together Erickson and his wife, his lifelong collaborator, expanded their theory which included issues that arise during the old age years. They identified the conflict during this stage as Integrity versus a Sense of Defeat (despair). The fruit of this tension can ripen into wisdom. The Ericksons further posited that the lessons during this time of life involve developing empathy and resilience, that having the courage of our convictions to move toward greater wholeness dispels the ominous sense of despair that so plagues many elders. This is not unlike Viktor Frankl’s theory of attributing greater meaning to adversity, a practice he developed while in the concentration camp with his family in the 40s.

In his seminal work, Rabbi Zalman Schachter-Shalomi described the importance of mentorship in one’s older years, or as he called it spiritual mentoring when he wrote From Age-ing to Sage-ing. (It should be noted that Reb Zalman was ordained as an Orthodox rabbi until he experimented with the “the sacramental value of lysergic acid” in 1962. His experimental style along with the cross-cultural influence, which included feminism and LGBT rights into Judaism, mysticism, and a rainbow prayer shawl he designed, inspired me to reconnect with my Jewish heritage in the 80s.) He traveled with other rabbis to India to meet the Dalai Lama. His holiness was interested in knowing how the Jewish people had survived with their culture intact, a significant issue for the Tibetan Buddhists in exile. If this interests you, read Beyond the Ashes, written by a rabbi ordained by Reb Zalman and Jew in the Lotus, a book that chronicled this journey.

If you read my last essay, you likely understand when I describe the anomalous quest of those of us who need to reach the summit of the Himalayas. Having been a psychotherapist and in therapy myself much of my life, I have had the privilege and opportunity to develop a huge capacity to ride the suffering with the faith that in doing so, I would eventually find liberation.

During the height of my anxiety, my prayer was for PEACE. Reb Zalman spoke clearly about anxiety, how it helps the ego become more translucent and transparent, to remove the opacity so the divine light can shine through. These words hold such TRUTH for me now.

It is my hope that anyone facing adversity find the same comfort I have found during this sacred time. Here is medicine for all who are facing life’s sacred transitions. It is a trailer from Ram Dass’ documentary Going Home:

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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:

Dedicated to my cousin Doris for reasons she will understand–

When we awaken the ego does die, but it is not what many think. The caterpillar transforms into a butterfly, dies to its old form and can never go back to being a caterpillar. Yet, if you look closely, the main body of it still retains its caterpillar form. ~ Atreya Thomas

During the White Awake workshop described in the two previous essays, we were encouraged to mend the fabric of the inevitable disconnection with our ancestral roots. When I did, I began to realize why my family had been silent about their histories. Not only did I encounter their overwhelming religious persecution, but I began to understand my grandparents’ abject rejection of speaking about anything related to the old country, as they desperately tried to embraced a whole new culture of becoming Americans and all that meant to them. For them, it was about basic survival – a new beginning in a new country. Severing ties from everything that was familiar to them, including their parents, aunts and uncles, their grandparents, and their whole way of life was a prerequisite.

During the late 1800s in Lithuania, pogroms (organized massacres targeting Jewish communities) were instituted which resulted in mass emigration to America. Some emigrants chose acquiescence, desperately wanting to assimilate; whereas some who had become revolutionaries in the old country brought that energy of resistance to America. The latter group had sought to unite all the Jews in Lithuania in a class-based fight for social reform. They had organizing to demand: an improvement in living standards, a more democratic political system, and the introduction of equal rights for Jews. They were revolutionaries, socialists and communists. My grandfather brought these ideals with him to America. In his 80s, my father first acknowledged to me that he had gone to the Workmen’s Circle, a socialist camp during high school. He explained that there was a communist camp and a socialist camp and he attended the latter.

I wish I knew then what I know now. I would have told my grandfather that, perhaps through osmosis (or DNA), I had received the teaching that hatred of other, whether expressed as racism, classism, sectarianism or anti-Semitism, was something to fiercely resist against! I would have told my grandparents that their suffering was not in vain, that I got the message. My whole life has been about dispelling hatred in myself and others. And now, in the 21st century, many of those socio-political issues are still present and growing. Dad, you prepared me well. Although, I didn’t understand all of what our ancestors endured when we had this intimate, revealing conversation just a few years before he died, I did begin to piece together why our home was secular, devoid of God. Many of the revolutionaries from Eastern Europe who had experienced such trauma became atheists, at least my father, and I suspect, my grandfather did. I don’t know how this trauma manifested in his older brother Azer, the firstborn, born into a family of immigrants, trying to piece together new lives amid the catastrophic trauma from which they fled, to carry-on in America. The firstborn often carries more weight than the other children, more responsibility, and more of the raw, direct trauma from the parents and grandparents, whether physically present or not.

My grandfather, who arrived in America around the turn-of-the-century, was a craftsman who built furniture and started selling his creations and used furniture along the railroad tracks in Pennsylvania where the trains would bring them to his storefront. My grandmother was more of a pragmatist who chose to not eat their limited rations during the Great Depression so her children could. After bankruptcies and dire survival struggles, my father began working with his father while still in high school. As I mentioned in the previous essay, I suspect my father (who was a bit of a mama’s boy) rejected his father’s ideology and became a capitalist to save his family. He would sacrifice a great deal not have his siblings, wife, or children starve as his family had. With a high school education, my father provided for his family and left a legacy of abundance and philanthropy, not scarcity and financial hardship.

I suspect he rejected his father’s gentle, humanistic way of being and saw it as passivity, and maybe it was, as trauma can take the form of immobilization. I see these polarities of capitalism versus socialism, revolutionary versus pacifist in myself. During our present, tumultuous times, having this internal conversation between the polarities of ourselves is necessary preparation for contemplating how we want to express ourselves, both personally and politically. Understanding our ancestry is an important part of our identity. If you understand epigenetics, trauma from previous generations actually can change the expression of our DNA and manifest in devastating and mysterious ways. For an interesting article click here.

When I knew him, my grandfather had advanced Parkinson’s disease. Having been the only two people in our family with progressive neurological illness, I have developed a kinship with him that only increases as this illness progresses. I can viscerally imagine the despair this loyal, enormously strong man felt as his body began to fail him. He was known to have carried an iron woodstove up a staircase by himself, something no human I know could accomplish. As his body weakened, he had to surrender to his somewhat caustic, but faithful wife who likely didn’t understand how past trauma may have manifested in herself and her husband. I remember my grandmother’s fierce loyalty caring for her husband as he grew more disabled and her unwillingness to place him elsewhere, regardless of the excessive demands on her. Love and trauma, trauma and love. There are no heroes or villains in this Sacred Work that is Life.

I consider myself spiritual, but not religious. I dutifully attended Hebrew school and synagogue in my early years, but there was little continuity at home which seemed to reveal a fracture I didn’t quite understand until later in life when my father finally admitted to having been a staunch atheist his whole life (until his death which I described in previous essays – our most intimate moment).

I found the Old Testament scary, presented by a rabbi who had little rapport with children. A punishing, threatening God was more of the stuff of my worst nightmares than a power that informs and heartens me. When I later learned of the atrocities perpetrated in the name of the church, this further reinforced my resistance to organized religion. The Jesus that was talked about in my early years, the prophet who was killed by Jews, created further shame in me for being different, for being Jewish.

Always having been a spiritual person by nature, the more mystical aspects of Judaism appealed to me when I later studied Kabbalah. I found that the mystical aspects all major religions seem to converge at the same point, the point where Jesus and other masters spoke from – Love. When we live from the soul, there is no other; there is only We.

The spirituality that I gravitate to is inconclusive, profoundly compassionate, deeply mystical, and emanates from my heart and not my head. That being said, I came to realize through the workshop that I had blatantly and aggressively rejected all aspects of the religion in which I grew up – the baby with the bathwater – and with that I had rejected significant parts of myself and my lineage.

The facilitator explained our relationship with our ancestors brilliantly – like with any intimate relationship, if one person has not achieved wholeness, they are like two halves of a whole, but two whole people can move past duality and co-create.

Today, we live in a world where capitalism has run amok and we have forgotten how to take care of each other. We have work to do. I am so grateful to stand on the shoulders of those who went before me, to reintroduce myself to them. The courage, the grief, the fortitude is quite a legacy they left for me to recover, by my willingness to feel shame and grief fully. This is what I contemplate when I sit at my altar to my ancestors.

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.

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

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

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

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

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

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

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

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

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

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

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.

I ain’t afraid to love a man. I ain’t afraid to shoot him either. – Annie Oakley

We are the authors of our lives. We write our own daring endings. We craft love from heartbreak, compassion from shame, grace from disappointment, courage from failure. – Brene Brown, PhD

What a gift human life is with all its challenges and opportunities for liberation through adversity; as a snake needs a rock to rub against to remove the old skin, humans need ordeals to evolve. It is through adversity that humanity acquirers empathy, increasing its capacity for love. This is one of humanity’s deepest teachings. Love is. Anything in the way of that knowing is, I believe, what we are here to learn from and transform, to turn lead into gold, poison into medicine.

Living a human life is not for the faint of heart. If we dig deeply enough, most of us live with an insidious amount of unworthiness, or shame, imprinted during childhood whether this imprint is conscious or not to our adult selves. In my opinion, one of our greatest accomplishments during our lifetime is to chip away at this shame – the belief that in our core we do not matter or are in some way deeply flawed, that if someone gets close enough, this secret will be revealed. Often this imprint gets projected outwardly as a defense against feeling the unworthiness that dwells in our beliefs about ourselves, the unknown hitchhikers in our individual personas that wreak havoc in our personal lives. With such a belief operating in our core, intimacy, with ourselves and others, can become difficult to allow. It is through intimate relationships that healing takes an accelerated path and poison can become medicine.

Our most unlikely, yet beneficial, allies during our lifetimes are the ones who, often unknowingly, take us into that core, the faulty foundation where untruths mold our beliefs just waiting to be transformed. Of course, we don’t see these messengers as great teachers at first, but over time as we develop the capacity for self-reflection and often through grueling repetition we begin to experience a level of liberation. In my experience, it is only when I am able to feel the shame completely, without turning away, that self-love is restored. This ability may be unreachable for some people, but I believe this is the hope for humanity.

My husbands have been the Trojan horses that provided the grit necessary to take me into the deep, recurring, faulty beliefs that caused me tremendous suffering. They exposed these beliefs often unconsciously and sometimes with cruelty. Learning to not shoot the messenger was key to taking responsibility for my childhood imprints and finding liberation. Often we can become distracted by trying to derail the messenger, in an attempt to invalidate the message, propagating an illusion that we can somehow avoid feeling the shame. Developing the capacity to sit with the pain of “not enough,” is the only way to release its hold over us. To do so requires practice, increasing empathy toward the self, and not taking what seems to be criticism from others, personally.

To look at these messengers with equanimity, we realize they are doing us a great service. I believe the messengers can become more harsh if we resist the greater teachings. This is not to be confused with being victimized by another’s unskillful projections. Discernment is necessary to courageously unwrap the projections and determine what is the grain of truth that is useful for one’s liberation. Multiple marriages can be seen in this culture as a failure, but people are changing quickly and one cannot determine what others might require. Each of my three marriages has been like a different incarnation, one building upon the previous. What ever brings awareness is exactly what is needed by the determined soul. After all, you cannot heal what you do not acknowledge. By my second marriage, seeing the repetitive patterns, I understood that I was the common denominator. Once aware of the pattern, I could choose – shame or self-love.

I have had communications in the last months with all three previous husbands to varying degrees of connectedness. My first husband I call my greatest teacher, because he was creative, intelligent, and brutal in his younger years. In my 30s and while in therapy, it had become apparent that I had embraced a level of victim mentality. With his help and my courage, determination, and a lot of therapy I was able to release myself from the grips of this insidious form of self-hatred. Not everyone needs this level of intervention, but I had been a willful child and not able to change, otherwise. An identity of victim is one of the most excruciating forms shame can take. When embraced with empathy, this pattern can be transformed to self-love. Recently, my daughter asked me to contact her father, my first husband. Over the years, I have forgiven his hurtful behavior and begun to see him as soul family, someone who had agreed to provide this ordeal out of love, to bring us forward in our evolution. I know, this is a generous shift in beliefs, but if one could choose our perceptions, why would anyone choose otherwise? Because of this shift in my perception, he was able to tell me that he loved me, he had always loved me, and he will always love me. Intuitively, I knew this, but the medicine this acknowledgment brought to myself and my daughter was immeasurable.

Shame is an insidious poison that can rob us of our birthright to feel loved and loving in a Universe where Love is the only Truth.

Although the world is full of suffering, it is also full of the overcoming of it. – Helen Keller

balance

I have been practicing Marshall Rosenberg’s seminal work on nonviolent communication for over nine years. Recently, I have been remembering his statement that every communication is an expression of either “Please” or “Thank you.” No matter how skillfully or un-skillfully the communication is delivered, all communications are either requesting something one needs or expressing gratitude. We don’t always get what we want or need from people, but we can always choose a response that is more conscious. A more conscious response will move the conversation closer to love and forgiveness; forgiveness of other, and more importantly, forgiveness of self. A less conscious, more impulsive reaction would likely keep the expression of pain going. It requires much skill to interact consciously with other human beings; I believe that is why we are here, learning with and from each other.

It is essential that we understand the feelings we are experiencing during conflict and that we understand the unmet need triggering the feeling. Identifying our feelings can take much spiritual maturity, because allowing oneself to be vulnerable during conflict is like what Stephen Levine calls, “opening your heart in hell.” Once one is feeling and need literate, conflict is easily reconciled. Here are some common examples:

Wife – You are always working, it’s like I’m a single woman in a marriage!

This is an expression of please. This is where the real work begins. The wife might only feel anger, but sadness or grief is always under anger. She might not even realize she is sad and missing her connection with her partner. In our culture, acknowledging our vulnerabilities is grossly undervalued, perpetuating an illusion that we are self-sufficient islands. Allowing one’s vulnerability, in my opinion, is how we can achieve world peace, one person at a time. At the core of this existential shift is the ability to find empathy for the self. To me, this is the prerequisite and the gift that neutralizes conflict and increases love of self and others. Once empathy is achieved, there is more self-reflection, and her communication might be, “My need for connection with you is not being met and I’m really sad about it. Would you manage your time so you can spend more time with me and the children? With practice, one can move more swiftly to vulnerability and affirming one’s love for the other can render more love.

Husband – I cannot do enough for you. All you do is nag nag nag.

This is an expression of please. It is important to hear beyond the pain. What he may be unable to express if he is not feeling literate is, “I feel so much pressure to provide financially, emotionally, and physically. I feel like I’m dying on the vine. I need some help here.”

The most difficult work is identifying the feelings and needs. Cultivating empathy for one’s self, leads to empathy for the other and will ultimately lead to feeling less isolated. This is the power of duality, or interacting intimately with others; the power of community.

Once self-empathy becomes natural, one can respond to these please requests with gratitude, rather than the automatic reaction of withdrawal or acting out our pain. Whether the communication is skillful or not, we can feel gratitude, because the other person is willing to express their unmet needs. Moving out of one’s own pain through self-empathy allows one to hear the other’s pain. Here is where love and connection can be restored and please can become thank you.

Recently, I reached out to a significant person in my life who has been disconnected from me, disconnected from my heart. As I move toward the end of my life, I know this is not truth. I reached out asking if we could reconnect. (Please.) I was met with a very cold, defensive response. I knew that we were not both in the place of reconciliation and I needed to honor that. In the past, I might have pushed for my needs to get met and it would not have ended well. I recognized the opportunity to honor where the other person was and more importantly, not to sacrifice my own well-being, knowing how open and vulnerable I am in my life right now. My reply was merely, Thank you.

And I meant those words, completely. “Thank you” to her for letting me know where she was. And, “thank you” to me for letting go, for having the wisdom to know that because we are disconnected on the physical plane, in another vibration where love is the only truth, we are connected forever.

All statements express please or thank you. Vulnerability is the key to open communication and inevitably leads to empathy. Empathy is the balm that changes poison (pain) to medicine (intimacy). You cannot give to others with an empty internal reservoir of love. This reservoir needs to be attended to constantly and consistently. This is the basis of most spiritual practices and the hope of heart-centered psychotherapy.

Marshall’s books can be purchased on Amazon, found in many libraries and YouTube videos are available online at no charge.

World peace can be achieved, one person at a time.

StephanieStephanie–the Way of the Bodhisattva**

On Sunday, my dear friend Stephanie left her body after a lifetime of illness and activism. She developed a worldwide network to support people with PJS, or Peutz–jeghers syndrome, a genetic birth anomaly that often leads to cancer.

Stephanie was an AIDS and cancer activist, a natural death proponent, and an educator, encouraging living life to the fullest, no matter one’s circumstances or longevity.

Stephanie reached out to me more than a year ago after reading all the archives of my blog, no small feat. Stephanie heard deeply the themes in my essays. She recommended readings including academic papers to support my theories. Stephanie met me where I was and this is one of her many gifts to humanity.*

Three days before Stephanie left her body, she wrote to me, “I love this time of grace when I turn from this world toward a bigger world where I live now. I am giving up my computer to move toward God and moving closer toward the door called death.”

Stephanie said goodbye and encouraged me to shift my attention when I am ready to make this journey. Always the teacher, always the lover of life.

We connected in our love of life and of helping humanity in whatever way we could. We recognized kindred spirits and we were amazed at the depth of love we shared in this unconventional, cyber way.

Godspeed, Stephanie and I will see you in a flash.

* If you would like hear an audio interview of Stephanie, http://tns.commonweal.org/podcasts/stephanie-sugars/#.WDRk66PMyYU

**She has carried many and now she is being carried. https://www.youtube.com/watch?v=DzPTHstpJ2I

Here is a video made by Stephanie’s friends: https://youtu.be/JaaNVKIsffQf

VISIT THE BLOG FOR MY NEW BOOK – MEET ME BY THE RIVER!

Go to - http://www.meetmebytheriver.net -- And you can find it on Amazon!
Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. more...

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