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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.
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.
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
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.
If you identify with your soul while you’re alive, death is just another moment. – Ram Dass
When my husband left our relationship of eleven years, I knew my life was about to change dramatically. I could not imagine what living alone with this progressive, degenerative illness would require of me. Kicking and screaming, however, I moved with the flow. I knew my physical life as I had known it was shutting down and I now would live the adage – When one door closes another door opens. It soon became clear that I had been resisting this passage: entering the doorway to my Heart, which would require complete openness and vulnerability. I was entering a life of asceticism and unbeknownst to me, through this portal many miracles of healing beyond the body would happen for myself and for those around me.
Upon David’s final departure, he told me, “I hope you have a lot of love in your life.” When he said that I knew he meant romantic love. After all, he had been partnered with me for more than a decade and he had seen how much love I had in my life. After all, this quality is what drew him to me, my ability to receive and generate a form of love that was broad in scope, not restricted to romantic love. I didn’t realize at the time that having to face this ordeal alone would force a level of spiritual maturity, catalyzing a higher expression of love that would explode exponentially. This evolution would involve more the upper energy centers of the body, including the heart, throat, and crown chakras rather than the lower chakras developed earlier in my life, involving physical survival, creativity, and the development of the I am.
Twenty-five years of inner work, two divorces and raising my children contributed to a strong foundation for my next passage. Everyone who raises children knows how gut-wrenching, ego-stripping and deeply heartening this process can be. In retrospect, I can see how this prepared me to blast open my upper energy centers, exponentially. Having led a very physical life, the thought of living life with a paralyzed body was way more than I could bear. As the trajectory of my life became clear, I knew I needed to find higher meaning in this rigorous curriculum I had in front of me. I was unwilling to leave a legacy of defeat; a life of tragedy was not my calling. That fact was clear when nothing else was.
Derived from the Greek word áskesis, meaning “exercise” or “training,” Wikipedia defines asceticism as a lifestyle characterized by abstinence from worldly pleasures, often for the purpose of pursuing spiritual goals. In retrospect, this was the trajectory of my life, and I don’t believe for one moment that it was arbitrary or any failure on my part. I have come to understand that I came to live a bigger inner life than I was accommodating, and this curriculum would offer this certain and sacred opportunity. When I fully embraced the greater meaning offered, a much purer form of love became abundantly available, my inner and outer work were more effective, and people around me either left or came with greater offerings and experienced accelerated growth.
As I integrated the effects of these changes, it became clear to me that I would lead a life stripped of ego. My deepest yearning had always been to be of service, but fear had been an interminable obstacle. Developing faith seemed to be a necessary prerequisite; faith, not centered around the belief in an unseen being, but of a spiritual system based on love, above all.
When I shifted my focus from loss to unconditional love, I knew my physical life and my lifelong yearnings had intersected. The pursuit of spiritual goals could be realized. Did my ego plan this? As we say in New Orleans, “Not for a New York second.” Do I grieve for what could have been? You bet. All in all, it has been my life, and I wouldn’t change a minute of it.
“In each of us there is another whom we do not know.” ~ Carl Gustav Jung
Have you ever had an old aunt or parent who was in assisted living and they complained that you never came to visit? Maybe you were there the day before, but in their minds it was never and you knew there was no way you could convince them otherwise. Feeling exasperated, you thought, “What’s the point? I can never do enough.”
Well, from the perspective of someone who is alone eighteen hours a day, seven days a week and having felt this Great Aloneness my whole life, the kind of aloneness that being with other people does not touch, I am beginning to understand this dilemma in a completely different way. With this new understanding, beloved family members finding themselves in what feels like a bottomless pit of despair they could never climb out of, just a shift in perspective could significantly reduce suffering.
Many people, like myself, have lived much of our lives close to the veil that lies between this physical existence and our Soul selves. The veil is getting thinner as people are becoming more conscious, whether our egos accept this or not. After all, we, our souls, have chosen to enter human bodies for a courageous reason. When entering the lower vibrations of duality, the work of evolution of the soul is, paradoxically, accelerated. From duality, we move toward unitive consciousness. (Our culture is craving this shift and this is the hope for humanity.)
As people near their transitions, they become closer to their soul selves. It begins as an internal process that may not become outwardly visible until a critical mass has been reached within the consciousness of the individual. It can be subtle, where the person we’ve known all our lives becomes different. It may have a balancing effect where they appear belligerent where they were gentle or they become peaceful where they had previously been hostile. Sometimes, this process happens through acquiring dementia to fully experience their Shadow, the part of their personalities they were unable to live due to a lack of acceptance of these behaviors. (Maybe a significant person in their lives had been aggressive and they chose to live passively, refusing any angry impulses.) We take on human bodies to acquire experience, to grow and heal by balancing karma. The more determined the soul, the more likely one may choose illness, addiction or injury to assure we are following the soul’s plan rather than the ego’s plan.
My mother would have been a Renaissance woman if born during a different time. She was an independent, able woman who skipped grades in school, but married young and began having children at 19. She never completed college, which I imagine created much frustration due to limiting her options in life. Over time, her personality became aggressive and belligerent, which was not her true nature. She was frustrated and I felt terrorized by her behavior. I learned to not be my mother, so I denied any feelings of anger. On the surface, I appeared to be a sweet person who could have won a prize for “most congenial,” until one day a spiritual teacher gave me a Shadow gift of a plastic machine gun. I instantly felt shame, but a part of me felt liberated as I began to love the sound of the plastic machine gun, and, more importantly, I began to experience the buried aggression in my personality. Allowing myself to feel the repressed aggression and befriending it freed me to begin to allow vulnerability, a quality necessary for intimacy in relationships, and therefore freeing me to live a more authentic life.
When it became dangerous for my mother to live alone, we had to place her in a nursing home. She went through a period of confusion and outrage, until she surrendered and became a sweet old lady. My brothers and I commented on the irony, “A sweet old lady called me today, do you know who that might have been?” She was finally able to live her true self.
Understanding the changes in ourselves and our loved ones as we near death can significantly decrease suffering and allow us to truly come Home to our own true nature.
“Our holy grit… it’s the sandpaper in your psyche that rubs you raw until you make it conscious.” – Jacqueline Small, on Shadow
Lake Winola
Karen turned sixty this month.
I grew up on a glacial lake at the end of the Endless Mountains in Pennsylvania during the summer months. Karen lived with her parents and three brothers in the cottage next-door. My best friend, Cathy, rented the cottage behind them, at least her parents did. The circumference of the lake was approximately three miles, so children knew each other for long stretches that were walkable from their cottage. The lake was a friendly community where families looked out for each other and their children.
Being born in July, this lake was my first home. Sometime during the 60s my home became a state lake and everything changed. But prior to this, the lake was serene, the people familiar and it was a safe, aesthetically beautiful place in nature to grow up.
Our neighbors became extensions of our family. Karen lived next door and since we grew up together, I didn’t notice the developmental delays. Karen was mentally disabled, but we all thought she was odd. From a child’s perspective, there was just something different about her, damaged, maybe. Children were unkind to her, but not her brothers. Karen always liked me. One day, however, I joined the heartless descent as she walked in front of the trajectory of the swing I was on. I didn’t stop abruptly as I could have. I knocked her down. Fifty years later I remember that moment and I cry with so much shame. Perhaps I can understand the other children’s cruelty by understanding my own. Karen was an external manifestation of the damage I felt inside of me, the damage the other children must have felt, as well. Christians might call it Original Sin, Jungians call it Shadow, the unlikable parts of ourselves we hide until we have the inner resources to heal these parts and integrate them into a more forgiving personality.
Cathy’s family was very religious. Her mother, Lucy, told me children like Karen were sent here by God and reported back to him about how others treated her. Now, from my perspective, I can believe some of Lucy’s story/parable. Karen and her sacred curriculum was a mirror for people to look at themselves through. Not everybody liked what they saw.
Soon after that, Karen no longer lived next door. She came home on visits and loved to go for a boat ride with me. Karen never held a grudge. Her older brother became a minister and I worked with disabled children for a couple decades, as a teenager and an adult.
I wonder if Karen knows how much she affected the others around her or how much she taught people something about themselves, that they probably didn’t want to see.
Karen turned sixty this month. Happy birthday Karen. From my end-of-life perspective, I now understand the careful selection of the costume you chose for this lifetime and I know you are what some call an angel and I know, without equivocation, that you were my and many other children’s sacred teacher.
**One of my very favorite books on the subject is: Expecting Adam – A true story of birth, rebirth and every day magic by Martha Beck.
“Death is a wardrobe change.” -Pete Bernard
Dearest Stephanie,
I was so happy to hear from you from your hospice (!) after my last blog essay. I know you cannot interact with me the way you would like to. I miss that and I will grieve. What else can we do?
I don’t know how you found me, but I do know why. I will listen for you in the wind and hear you in my heart. You are so generous with your offerings. And I know you will be, forever.
Write if you can. I will be listening.
When you can no longer connect with me, I will see you on the other side . Thank you for all the articles and your loving support.
I will love you always, Aliyah
Stephanie Sugars is a beautiful, survivor of Life who has had metastatic cancer for nearly twenty-five years. She has been a lifelong activist, perennial teacher and has, in the last year, become my friend.
Stephanie reached out to me nearly a year ago with much support, identification and empathy for my challenges, with so much love. She is a proponent of natural death and she is presently, with the support of hospice, teaching by example.
http://www.pushinglimits.i941.net/?p=488
“When you look long enough into the abyss, the abyss looks into you.” Nietzsche
Recently, a caregiver asked me with a slightly horrified tone, “What if you can no longer speak?” Actually, there are times now, during the day when I cannot speak, like when I am on the stationary bike, when I am on the stander and late afternoon when speaking in groups, of which I am in ten per month. This particular disability has been happening gradually for the last four years, especially since I returned to high-altitude and It has become much more pronounced in the last six months.
I have learned to accommodate yet another disability, dysarthria– motor speech disorder caused by muscle weakness with neurological illness. I have learned that if I pause or whisper for a few sentences, I can often get my breath back and project a little more to make myself heard. Summer and the heat it brings exacerbates this symptom.
The potential for having this disability has been obvious to others, but being unable to speak and the ramifications had never occurred to me. I tend to not project into the future imagining what abilities I might lose next. This has probably been an effective strategy for lessening what is called “anticipatory dread” and, therefore, decreasing unnecessary emotional suffering. This represents another way my personality has evolved. I used to be accused of seeing the cup as half empty, as opposed to half full. Ironic that with this terminal neurodegenerative disease I’ve become more optimistic.
Actually, my first thought upon hearing this question was of recently having seen The Diving Bell and the Butterfly, a film about a man with “locked in syndrome” who, after sustaining a severe stroke, could not communicate after having been a robust communicator all his life. Somehow, I trust I would get my point across, even if I need to blink my eyes three times as he did. Sometimes I practice that while laughing about the irony with my caregivers. Fortunately, I don’t take this ordeal very serious much of the time. I don’t tend to marinate in fears of the future, at least not these types of fears.
What I have learned in accepting this “curriculum” is that if I become unable to speak, there is a greater teaching in the symptom. I have no doubt that my focus would need to go beyond the cortically-based area of the left brain where speech arises, exploring areas much deeper than the fears of becoming speechless. I bow to this anomaly and will accept it as my next teacher.
In my humble opinion, nothing is arbitrary when I have accepted such a rigorous path and it becomes more clear that I have, in fact, entered the Holy ground.
“When we are no longer able to change a situation, we are challenged to change ourselves.” – Viktor Frankl
At the age of thirty-five, I was raising two children, struggling in my marital relationship and at an impasse regarding my career. I wanted to practice as a psychotherapist, but was seemingly stuck in a Catch-22; in order to attain licensure I needed to secure professional supervision in a job I could not secure without my state license. I felt like I was in a vice and could not move forward. I remember walking out to my deck and desperately screaming to God, the Universe, to anyone who would listen, “Please let something change. I would do anything to get through this hopelessness.”
It was soon after that that the subtlest neurological symptoms began to appear in my body. I was able to stave off major anxiety until my husband returned home for the holidays, and then I lost it completely into a state of high anxiety. It was as if I could immediately imagine the outcome of the illness, with all of the devastating limitations. Either I remembered the pre-birth planning of this possible challenge, or the option that terrified me more, my greatest fear would be realized-catastrophic illness. After all, I had heard the new age theory that thoughts become reality. If the latter option would manifest, I would be riddled with shame and helplessness. I desperately sought any strategy or support that would render me innocent, innocent from ruining my mission in life to help change the world into a better place, innocent from abandoning my children when they most needed me, and innocent from disregarding the life I had been given. With this shame riddled process, debilitating anxiety was assured.
In retrospect, I can see how all of my self-hatred was being brought to the surface to be dealt with. I lost thirty pounds that I could not afford. However, I was also completely present to my process of plunging into the depths of my soul. My meditations were rich with instructive symbols and messages. I knew that if I didn’t move forward, I would die. I could now see that I didn’t incarnate to merely tread water. Despite constant anxiety attacks, I secured a job with a community mental health clinic as a psychotherapist. In addition to being a therapist by day, I would assess after-hour emergencies, many of which were people surviving suicide attempts or dramatic circumstances. In the midst of my own crisis, I remember telling my friend and colleague that I could not become suicidal, because I would have to call myself. My humor has been a tremendous gift throughout this ordeal. In the midst of facing my greatest fear in life, I was able to detach enough to also be a witness to the process.
Having been raised in an atheistic, though culturally Jewish family, there was no God in my house. However, I had always felt a deep, spiritual connection to nature and animals, recognizing these connections as greater than how they appeared on the surface. This Knowing of the interconnectedness expanded to include humans while I was in intensive group therapy in my thirties. At this critical time, this spiritual connection became internalized. Perhaps this ordeal was necessary to trust my inner Guidance above all else, in order to ascend spiritually for myself and others. It was becoming clear that the symptoms were a call for me to balance the love in my life that was too outer directed and needed to be redirected internally as self-love.
Viktor Frankl was a psychiatrist who encountered his transcendental ordeal when sent with his family to a concentration camp during the 40s. Dr. Frankl, being the only survivor in his family, became a leader in existential and humanistic psychology. He posited that it was essential to find greater meaning in all of life’s circumstances, especially those that were more brutal and catastrophic. It is only by attributing greater meaning to these horrific experiences that one could lead a meaningful life.
Today, there is much suffering in the world that is getting purified by souls who are willing to live a meaningful life with catastrophic injuries and illnesses. I would like to spend the rest of my life reminding myself and others of this higher, Sacred purpose for what we would otherwise believe to be unnecessary suffering.
