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

Ram Dass and Reb Zalman

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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.

StephanieStephanie–the Way of the Bodhisattva**

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

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

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

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

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

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

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

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

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

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

“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.

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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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