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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:

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(Dedicated to Barbara and Leslie, who loved and lost Spectre, along with us. Thank you.)

Remember to love deeply and hold loosely. – Gussie Fauntleroy

Fly Spectre Fly!!

What I didn’t want to cover in my last essay about Spectre was that, although his body was unable to function due to the melanomas wrapped around his jugular vein and intestines, he was not ready to go. When we prepared to euthanize him, we gathered in the remote, upper field – our animal graveyard, where the bodies of our beloveds returned to the soil. Moving a dead horse is not an easy task and the death ritual has to be planned in advance. The backhoe has to be ready to dig the hole, right then and there, to bury him. If a horse dies in a stall, you have a serious problem on your hands.

When Keith inserted the needle to euthanize Spectre, despite David holding him, Spectre boldly tried to walk on. Two men were nearly unable to keep the needle in his neck. Barbara and I stood by in horror at the scene where our veterinarian was trying to end the life of Spectre, our beautiful, mighty Patriarch of the barn. Finally, Spectre went down on one knee; he needed to be completely overpowered to go down. He demonstrated to me what the body is capable of: that the body wants to live at any cost, whether it has melanomas strangling organs from the inside out, or not. In looking back at the trauma of the spectacle, I saw Spectre’s warrior nature. I saw his power and I saw his terror. With Spectre’s strength, he could have overpowered us, but he just walked on – always a gentleman. Spectre didn’t go gentle into that good night.

In my last blog, I did not talk about the emotional cost of keeping my body alive. I did not talk about the intermittent, insidious bladder spasms that often leave me soaked in urine that inevitably accelerates skin breakdown. I don’t like to complain about the small stuff; I just do my version of walking on. I believe much of my suffering so far has been necessary, humbling me, stripping me to my basic core. I have learned that when I can love myself with this illness, I can love myself wholly and in that way, the process becomes a holy practice. The true love of my life has been my inner work which extends to my work with others, so they can also access that holy state of being. This illness has served my highest soul’s desire and for that I am deeply grateful. I am not special; it is just my time and I have said yes to the Universe. Everybody will, in one’s own time.

When I listen deeply to my bladder, I hear that it is trying desperately to expel the catheter, the foreign object that has invaded it for the past six years. In the vernacular, my bladder is pissed off. When I realize this, I have compassion and know that my body is not my enemy, but my advocate, and a damn good sport at that!

I didn’t mention my extreme diet and protocols I have followed for the last thirty years – the daily green smoothies I force myself to swallow, knowing that they make my skin more resilient to heal the inevitable pressure sores from sitting twenty-two hours a day and the multiple injuries I am sustaining more frequently, due to my body’s increased structural weakness. The disease progression continues, despite my efforts to enter remission. I am constantly strategizing on how to prolong my life, while lessening the suffering. For me, it is a Sacred practice chosen by my soul. I know that, because my ego would never freaking choose this!

I refused the traditional MS drugs, because I did not want to suppress my immune system, which was the best the medical profession had to offer this unrelenting, mysterious illness they call primary progressive multiple sclerosis, or PPMS, and have no clue how to treat. I searched for healing on three continents over twenty-five years, both alternative and allopathic. My main criteria was that it had to resonate as true healing, not tricking the body. In retrospect, many of my friends who attempted the mostly ineffective MS drugs have more debilitating symptoms today, due to the disastrous side effects, without having slowed the disease process, as promised. I don’t feel righteous or resentful; I feel tremendous heartbreak watching the physical devastation unfold in those I care about and for those who courageously watch mine.

We are all just walking each other Home – Ram Dass

Ram Dass says, when we live more from our souls, then death becomes just another moment. As we become initiated by life: either due to body breakdown through illness, injury, aging, death of a loved one, or even our beloved pets dying when we are young, we learn that we are more than this vehicle we call our body. As we meet our initiations and move through the anger and fear, we can begin to live more from our Souls.

If my beloveds experience me only as my physical presentation, the loss is devastating. If we have a soul connection beyond the physical my process can also be awe-inspiring, because paradoxically, as my body deconstructs, my spirit grows, exponentially. I am left with gratitude as it has helped me grow patience in accepting my circumstances with Grace and dignity. (If you are reading my blogs, you are likely in the latter category and you are being initiated right along with me. Thank you for that. It is clearly the road less traveled.)

We tried any experimental drug available on Spectre. Like progressive MS, there is no treatment for progressive equine melanoma, at this time. We would have extended his life at any cost, however I am now learning that more time does not necessarily equate with more quality of life. I came to realize that by prolonging Spectre’s suffering, I was avoiding my own grief at his expense, not an easy realization to hold.

Fortunately, for our animal friends we have euthanasia to help them avoid needless suffering. Some of my Buddhist friends reject its use believing that all suffering, in animals and humans, is necessary for our evolution. Every animal communicators (those gifted individuals who can speak to our beloved animals “on the other side”) whom I’ve read, or spoken to directly about euthanasia, have, unequivocally, expressed our animal’s gratitude to the humans for helping to end their suffering.

I believe animals are here to teach us humans. Many states have begun to offer aid-in-dying, which is popular with over 60% of the people. The qualification process is arduous for those facing death, but empowering once completed. Now we have the choice to discern what resonates for each of us as ethical and true to help our physical bodies come to completion, gently.

Six years ago I was told that my kidneys were going to fail if I didn’t allow a urinary catheter to be inserted permanently. I agreed, because I had places to go and people to see! There is a cost for going against nature; the contraindications need to be considered. My bladder revolts at times resulting in spasms (mentioned above) and urinary tract infections. Constant use of antibiotics can result in resistance leading to superbugs. Kidney failure, aspiration pneumonia, and sepsis are common causes of death, when allowed to follow the natural progression of the illness. One doesn’t die from MS, one dies from “complications from MS.”

As we evolve as a culture and there is less fear around death, more options for supporting this sacred transition are becoming available to ease one’s suffering. When the body is ready to complete itself and turn from the physical toward the soul for animation, other initiates will appear. Perhaps they will be in the form of friends, family, those being trained as death doulas and midwives. As the Feminine rises, there will be less fear around choice, and the desire to control other people’s bodies will be seen as archaic.

There is a time to walk on and a time to take a knee in surrender to the soul’s desires. May we be granted the Wisdom to hear our  inner guidance and the Courage to follow our own Truth.

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“When you look long enough into the abyss, the abyss looks into you.” Nietzsche

SpeechlessRecently, a caregiver asked me with a slightly horrified tone, “What if you can no longer speak?” Actually, there are times now, during the day when I cannot speak, like when I am on the stationary bike, when I am on the stander and late afternoon when speaking in groups, of which I am in ten per month. This particular disability has been happening gradually for the last four years, especially since I returned to high-altitude and It has become much more pronounced in the last six months.

I have learned to accommodate yet another disability, dysarthria– motor speech disorder caused by muscle weakness with neurological illness. I have learned that if I pause or whisper for a few sentences, I can often get my breath back and project a little more to make myself heard. Summer and the heat it brings exacerbates this symptom.

The potential for having this disability has been obvious to others, but being unable to speak and the ramifications had never occurred to me. I tend to not project into the future imagining what abilities I might lose next. This has probably been an effective strategy for lessening what is called “anticipatory dread” and, therefore, decreasing unnecessary emotional suffering. This represents another way my personality has evolved. I used to be accused of seeing the cup as half empty, as opposed to half full. Ironic that with this terminal neurodegenerative disease I’ve become more optimistic.

Actually, my first thought upon hearing this question was of recently having seen The Diving Bell and the Butterfly, a film about a man with “locked in syndrome” who, after sustaining a severe stroke, could not communicate after having been a robust communicator all his life. Somehow, I trust I would get my point across, even if I need to blink my eyes three times as he did. Sometimes I practice that while laughing about the irony with my caregivers. Fortunately, I don’t take this ordeal very serious much of the time. I don’t tend to marinate in fears of the future, at least not these types of fears.

What I have learned in accepting this “curriculum” is that if I become unable to speak, there is a greater teaching in the symptom. I have no doubt that my focus would need to go beyond the cortically-based area of the left brain where speech arises, exploring areas much deeper than the fears of becoming speechless. I bow to this anomaly and will accept it as my next teacher.

In my humble opinion, nothing is arbitrary when I have accepted such a rigorous path and it becomes more clear that I have, in fact, entered the Holy ground.

“I ain’t afraid to love a man. I ain’t afraid to shoot him.” -Annie Oakley

Scuba buddies

Last night I dreamed I was in my beloved house on Military Road in Covington, Louisiana, a setting for a majority of my dreams, I’m guessing because it was my happiest, most fulfilling and beautiful home on a river where Sid (my second husband) and I moved after I realized we had been nomads for too long. Casey was eleven years old and she had moved eleven times in those short eleven years. This is where we settled and this is where the majority of my dreams take place, in this house.

A house built in 1910 with all of the amenities of high ceilings and hardwood floors, outbuildings, a greenhouse and small orchard and a large yard that ended at the river’s edge. Casey named my book for this river where she imagines meeting me after I leave my body.

A memorable segment of the dream involved Sid and me outside this home and someone had released toxic gas. Sid had an oxygen regulator with a mask that he would breathe into and then pass it to me to breathe. We did this for a few minutes and the dream ended.

The significance of this dream would be lost without some history:
I was married for two years when Eric (my first husband) and I separated. We were apart for almost that long when we reconciled. Neither of us wanted a divorce, but we had neither the skills nor providence on our side, but try we did. After so long a separation, we had both changed. During this separation, I was in intensive psychotherapy three days a week, raising our baby. During this time Eric had become an avid scuba diver and he was certain that if we had fun together that would erase our problems.

So, I found the most rigorous class at the Y at Lee Circle in New Orleans so I could become proficient. In order to complete this class, I had to swim underwater the full length of the Olympic size pool, reverse and continue underwater halfway back to the beginning. It was quite a feat and I did not know if I could accomplish this, but I could and I did. I learned a trick for holding my breath that long that when I was dangerously out of air, if I swallowed it would give me more time, because swallowing gives the pulmonary system the sensation of breathing. Still, to this day, I use this strategy when my breath is not available.

One of the skills scuba instructors teach is buddy breathing. To buddy breathe you would pair up with a buddy, take one tank and descend to the bottom of the pool using weight belts. Two people would alternate breathing, calmly and patiently. This was preparation for saving one’s life when underwater and one oxygen tank malfunctions. I completed this required skill in the swimming pool of the Y, but deep down I realized, “There is no freaking way I would go 20 feet down with Eric and have that level of trust. I realized there was nobody on this planet I would go 20 feet under and trust to buddy breed with. Nobody.

Over the years, this has become a metaphor for both assessing my trust in another person and assessing the level at which I could surrender in the moment. When I awoke from this dream, I was ironically unable to breathe due to the unexpected rise in temperature during the night. Heat weakens my already weakened pulmonary muscles and I felt congestion in my lungs. This must have replicated my scuba memory. I felt anxiety similar to when I was hospitalized with pneumonia three years ago. I know the main reason people die from neurological disease is from complications such as these. My difficulty breathing had bled into my dreamtime. I also noticed that I was buddy breathing!

Dreams can serve many purposes. They can help to release feelings, they can offer teachings from our guides and they can make us aware of something we need to know. Waking up at 3 AM, unable to breathe, yet with the knowing that my level of trust (in the elements) had finally surpassed my level of fear. I’m thankful for the reassurance that whatever I will need during this next passage, I will be able to meet. Reassurance comes in many ways. We just have to be able to recognize it and believe it.

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

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

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

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

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

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

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

“One works on oneself as a gift to other people so one doesn’t create more suffering. I help people as I work on myself and I work on myself to help people.” -Ram Dass

1-brighworldI’ve written before about my intuition that this illness is an opportunity to heal a very specific developmental fracture in my life, one involving attachment. I also have cited four other cases where individuals with progressive multiple sclerosis incurred early trauma from provocative maternal relationships. This connection has always been of interest to me, but a superficial study of five individuals does not prove a hypothesis. Nevertheless, exploring this anomaly in my own life has been extremely compelling, especially since I spend so much time in my chair allowing such an inquiry to evolve, with little distraction.

I keep thinking that I am complete with this lifetime, that I am in the throes just prior to my transition. I have completed my will, had the talks with my family anyone would wish for, arranged for my celebration/cremation. I even selected a master of ceremony, family liaison, created a CD to leave for loved ones, distributed many of my material items, and much more. However, more emotional/spiritual material seems to be surfacing.

The other day while I was re-experiencing a level of grief that was so familiar and primal that it had to be primordial, I experienced a visual that maybe gave the grief some context. I realize that I may lose some people at this point in my reporting. Being a visual learner and having practiced a form of breathwork that traverses non-ordinary states of consciousness for over fifteen years, intuitions seem to come to me in visual form. I understand that others may not access the source of teachings in the same way. Please bear with me.

The vision was presented as if exploring a geographical location with Google Earth; it was like traveling through a wormhole from the macro to the micro of my physiology. It also traveled through my development, the point of destination being a tiny pinpoint spot on my neural tube. The understanding I received was that there had been a fracturing sustained, not only during my pre-verbal stage of development, but pre-birth, probably during the first month of pregnancy before my mother even knew she was pregnant.

I had been feeling for the last months that this condition of my body had reached a plateau of sorts. The goal-oriented part of me wanted to be done with it, done with this rigorous curriculum and the inability for any outward bodily movement to happen volitionally. Being completely dependent on others had become tiresome. This plateau was feeling like treading water. This vision completely left the illusion that healing was not happening in its tracks. I clearly saw this pinpoint place in my nervous system, this place where early fracturing did not allow for the necessary emotional attachment to occur. With this vision came the realization that though I feel nothing significant is happening, actually some of my deepest healing is, in fact, occurring in my nervous system.

Perhaps this illness provided the most expeditious way for this fracturing to heal so that wholeness could be attained. My mother had been both complicit and a central part of the healing. I was shown that this fracturing was an accumulation of unresolved traumas from previous lifetimes.

With this vision came much peace and gratitude, gratitude for the strength to see this illness through and to appreciate my helpers along the way, both embodied and disembodied. This vision further revealed that once this fracturing was healed, it transformed into a portal to the infinite, to other galaxies and to the multi-verse. Ironically, five weeks ago I asked my caregiver to draw a symbol that would be lovingly fabricated by a local artist onto a plaque for individuals cremated ceremonially in our beloved community. The symbol that came to me was of two ellipses intersecting. There was a small circle in the intersection that represented my present life. The horizontal ellipse represented my temporal life and the vertical ellipse represented my Spiritual life. I now understand much more about this circular pinpoint.

Two months ago my three-year-old grandson and his father constructed a spaceship out of recyclables. This is the text he dictated to his father to write on the spaceship:

August, 2015
Dear Gram, I love you so much, Gram. you are like a miracle. Model aircraft blasts off, it goes to fifteen galaxies. I’m giving this to you as a present. I love you so much, River

The greatest gift I could give in this lifetime has been to be of service to others. With the healing of each internal fracture comes more love and forgiveness for all sentient beings. Continuing this sacred healing journey for myself and others is my gift and my prayer.

“It’s the stuff God hits your ass with, when he doesn’t want to kill ya, he just wants to slow ya down.” -Richard Pryor on MS

Leanne_Spiritual_Heart.341200433_stdI believe that people take on catastrophic challenges for different reasons, because in our deepest Being, we want to wake up; we want to evolve and we want to effect the collective evolution of humanity. That is not small potatoes. Otherwise, the Universe would be seen as an uncompromising, sadistic force, which I do not, cannot and will not ever believe; that is too antithetical to what I feel in my heart. Without my cumulative felt-perceptions nurtured over many decades and perhaps many lifetimes, I might have the consciousness of a chickpea, not meaning to disparage a chickpea. Sorry Rumi.

My belief system has been nurtured by my evolving love for myself and humanity. How could this curriculum be for anything but my betterment? When I feel moved to look deeper into the etiology of the illness I feel like an investigator looking for clues. Either we volunteer for these rigorous curricula or they are arbitrary, the latter of which I don’t believe for a minute given the outcomes I have witnessed and experienced. I also believe that we set up reminders along the way when we might be deviating from our chosen course. At these points, like breadcrumbs along the path, we face crossroads where free choice can be exercised to alter the trajectory.

I can remember making choices during my life that, in retrospect, were not in my best interest. Rather than seeing these choices as failures or even tests that would imply right or wrong, I see these moments as opportunities for my Soul to catch my attention. Based on the curricula chosen by the Soul, these nudges are instructive and they become louder and louder when ignored.

Working on surrendering my egoic willfulness, I suspect that I created a failsafe plan to get my attention that would not allow for error. Early in the illness, I felt punished and ashamed. Now I understand that the opposite is really true. Because I am a courageous soul with fierce determination, I set out a curriculum where surrender was the only option.

I can remember example after example of times in my life when I deferred my own judgment to other people’s opinions. I can remember denying my own intuitions and desires to meet other people’s needs. The most representative example of this self injurious behavior was after a marital separation where I was left emotionally devastated. It took two days to get myself out of bed and back to work, after six weeks of singing Amazing Grace for an hour each day while driving over the causeway to New Orleans, I gradually brought my life back to a place of joyful homeostasis. I began to dream of finding a small house for myself and the children that was only mine.

When my husband sensed my joy he requested  a reconciliation, I pivoted away from my dream to reconcile. I began having anxiety attacks like I had never experienced. I remember being unable to leave the car, but still I ignored them. In retrospect, these felt like wake-up calls that I systematically ignored. What could my soul do, but make the alarms louder? That was when the symptoms were beginning. But it is never just one incident; there are often many unheeded calls. Remember, the illnesses or injuries are not punishments. They are sacred breadcrumbs to assist your return to your chosen path.

Around this time the symptoms had begun. Instead of abandoning my dream, I needed to turn toward my dream, to empower it, to empower myself. Only in retrospect do it realize the significance of ignoring the prompting from my soul. I gave my soul no choice but to intensify the constriction. This was a loving gesture, like a parent creating instructive containment to assure healthy development in their child. There is no judgment regarding the required curriculum on a Soul level. Challenges and resulting behaviors are met with neutrality. What is most important is the return to a deeper sense of self-love. “God does not want to kill ya, just slow ya down.”

People design specific karmic lessons during their pre-birth planning to focus on developing particular traits, i.e. self-esteem, generosity, compassion, becoming more self-referential during their mortal lifetimes. I believe that becoming self-referential was central to my learning and being willful was in the way of making better choices that would deepen self trust. Okay, enter progressive degenerative illness  to affirm to my ego that my soul is in charge. From the perspective of this singular life, it seems like a big deal, but from the scope of thousands of lifetimes it is a mere speck in the bigger picture.

The hope and promise of a life fully lived brings with it the perspective of seeing our lives from the bigger picture perspective. With this understanding, suffering can be greatly reduced and deep joy and satisfaction attained from the knowing that we have done our best. It is for this intended outcome that I continue to log my Journey.

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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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