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Your body is the church where Nature asks to be reverenced. ~ Marquis de Sade

Dispelling the Cultural Phobia Around Death

When faced with the inevitable challenges life brings, I have tried to meet each trial head-on, once I was able to tap into the hard-earned resources I have acquired through the years. The diagnosis of progressive multiple sclerosis in 2003, presented me with the greatest ordeal I would have to face in life. Mysteriously, when the symptoms began in the late 80s, I instantly grasped the profound level of disability that would eventually evolve from this illness. This resulted in the greatest fear of my life, yet I slowly began to move forward with the willingness to simply not know.

I and my family are coming to terms with the shortening of my life that used to be an abstract concept, but has become very real recently as my organs are beginning to shut down. Little did I know when the symptoms began, there was no treatment for this neurological disease. Meeting my death at 64, has presented my greatest challenge as well as my greatest opportunity. There may be no treatment for many of the these devastating neurological illnesses, but we ARE developing options to meet an inevitable and sometimes premature death, with more compassion, awareness, and humility. As our culture begins to meet death with greater acceptance, we are better able to care for ourselves and for each other. In doing so, we will be better able to meet our final transition with Grace and awe, knowing we are coming face-to-face with the Sacred.

Meeting the Unknown

When I recently realized my organs were shutting down, it took a while for my mind to grasp the significance. My modus operandi for meeting each physical challenge has been to just keep moving forward. Most of the acute obstacles to moving forward were in the form of injuries that had to be addressed immediately. Concurrently, there was the constant background noise, the signs of a continual downward trajectory in functioning. Injuries were easier to manage, because they had: the initial injury, a recovery time, and then finding a new baseline. Functional decline was more difficult to deal with. I was continually strategizing: being vigilant to avoid further injury, listening deeply to my body to what was wanting to be heard, and attending to the changes required. Due to the efficacy of this strategizing, I, and my beloveds, had become lulled into a form of denial that somehow strategizing could actually keep my body going, ad infinitum.

At this sacred time of shutting down a vibrant, generous, and loving life, I have begun my life review, which is a common practice once the shock and grief abate. Looking back, I am aware that I have lived a good life, yet as with any life well lived, I have also made many questionable and downright poor choices along the way. However, with this broader perspective, I am realizing that there really are no mistakes. Each supposed mistake was a learning experience that provided an opportunity for acknowledgment, forgiveness and led to more educated choices in the future. For me personally, it is about discerning how to live my life with greater integrity, authenticity, and grace as I move toward the doorway we call death.

It was merely ten days ago when it became obvious that my digestive system could no longer process foods as it had. Concurrently, my appetite plummeted and it was clear where I was in the trajectory of my life – that I was facing my death. I began to grieve acutely, revealing an understandable level of denial. I am aware of the many times I told clients that some denial is necessary during times of great change. I recognize that I could not have lived such a regenerative life without this ability to compartmentalize. My body was no longer wanting the fuel that would sustain it, so I knew my days were being drastically shortened and that I needed to consider my options carefully.

The Many Options Open to Us Now

Since Colorado passed the end-of-life options act last November and I had gone through the arduous process of securing the prescription, I had the comfort of knowing I had the safety net it afforded, should I begin to suffer needlessly. Another option would be to do V-SED – voluntarily stopping eating and drinking, a process my body had already begun. Although not eating felt voluntary on a certain level, I knew in my heart of hearts that if I were to live in full integrity, it would mean following the direction my body was leading. MAID and V-SED are both viable options, but they just felt too abrupt for this body at this time, given my lack of pain and suffering, at least at this time.

I knew my soul was ready to go and I wondered what it would take for the rest of me to let go and follow. My body was already beginning the process of letting go, but my mind had been strategizing for many years in order to live alone with this condition that demanded continually being in survival mode. Rejecting food appeared voluntary on the surface, but what I knew internally and was afraid to admit, was that it actually was involuntary and I felt to force it would be out of integrity. I knew my soul was ready to let go, to move on to my next adventure of going Home, but I felt conflicted, because it would cause others so much pain. Was I betraying my beloveds? Was I betraying my body? How could I possibly share this with others and feel their grief along with mine, when each of ours was so raw?

As I am sitting with the predicament, a new option has appeared. I could eat and drink only when there was the desire and open to my body’s natural timing. I could find the courage to completely let go of control, and see how this new way of being could serve me (and also serve others). Taking this option meant suspending any sense of knowing and opening to my loved ones’ love and generosity when I am the most vulnerable! This meant that I had to fully embrace being the recipient of so much love that it would stretch my remaining feelings of unworthiness that I knew I still harbored. To me, receiving love and not feeling deserving represents the last frontier of my arduous and sacred Work.

It is essential to clarify that this slow moving illness that is accompanied by very little physical pain is extremely unusual. If I had unbearable pain, acute cancer, ALS, or if I had less support or fewer resources, I would choose MAID in a New York second, as we said in New Orleans.

Given my propensity to struggle with letting go, I decided to write a love letter to my body/mind in the hopes it can finally relax and let go. Although it is very personal, I graciously want to share this with you, my devoted readers. Thank you for your unyielding support over the past months and years.

Love Letter to My Body

My dear loving body/mind, my precious vehicle for this lifetime,

You have served me well. Thank you for being a body with so much endurance and so much forgiveness. I am humbled at your service.

You have taken so many insults, so much abuse, and you have met it all with so much grace. You have had your bones broken, twisted, forced to go beyond your capacity, but you have served us well.

You grew two of the most amazing children I can ever imagine. And from them came amazing grandchildren and perhaps there will be more. I, Aliyah’s soul, will be watching, listening, ever giving my two cents, but always loving.

You have weathered quite a curriculum to teach me how to better love and that I am worthy of being loved. The former, I came wired with the ability, but the latter was more hard earned. I guess that is why it’s called a “curriculum.”

You have fulfilled your Sacred commitment to me with generosity and grace – I release you with loving gratitude. You are free to do what bodies do. You have served me to the utmost and I can’t imagine any better body to carry me through this life.

I will not force you to eat when your system does not want to digest. I will not trick your body with medications, I will let you shut down with as little struggle possible. I will help you let go, if your mind pushes you beyond your limits due to the guilt from perfectionism that has plagued you, or an unrealistic belief that you are necessary to lessen others’ grief. I will not abandon you. I will help you let go of needless suffering with whatever resources I have available to me with the same generosity you have afforded me.

Your mind has served me well. It has helped me be the first person in my family to have an advanced degree and use that in service to others. What better joy in life can there be? You have helped me to strategize an impossible curriculum with impossible circumstances. Without you I could not have accomplished living alone unable to move from the neck down for as many years as I have, touching so many lives. I learned to receive love and the greater challenge was I learned to ask for help.

Without my body and mind, I would have left long ago. We did really really well!

It is almost time to completely let go, to scatter joy to the earth, the air, and water, especially the water. We can know that we did what we came here to do. We can let go and let Love!

Weekly, Crestone’s Threshold Choir comes to sing a cappella at my bedside. Here is an example of one of their songs:

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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:

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

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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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