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If I cannot give consent to my own death, whose body is this? Who owns my life? ~ Sue Rodriguez (42-year-old woman with ALS)

In my work as an advocate for those who are facing death and wish to have choice on how they will die when death is imminent, it helps to be walking the walk myself, to understand on a visceral level what we all are facing. After all reasonable measures to extend life have been exhausted, there is a point where fear of dying and facing the ultimate grief can kick in and heroic measures may be utilized to keep the body alive at any cost. Some of these measures include: intubating the trachea for ventilation, CPR, inserting a nasogastric tube that goes through the nose into the stomach for short-term nutritional support, and a gastrostomy, a feeding tube that is placed surgically through the stomach wall for long-term nutritional support. (I heard a doctor who personally had this procedure say that intubating the trachea is one of the most painful procedures one can have.)

Heroic measures is a legal term that to me is anything but heroic when utilized in avoidance of facing the inevitable, when a person is in the dying process. If these procedures would improve the person’s health or a person chooses this for themselves regardless of the outcome, I would completely support that personal choice. However, utilizing these procedures to avoid feeling the feelings that facing death evokes can actually prolong physical suffering and support our cultural fear of death. I’m not sure what is heroic about that. Often people feel compelled to do something, because feeling powerless is excruciating. I’ve been there with beloveds. It is not easy.

In order to dispel our cultural fear, talking about one’s impending death with our beloveds is essential. It is surprising how many people don’t. If the family can be courageous enough to face death straight on, which requires feeling our feelings and being vulnerable together, we can enter the Sacred together.

Many states have passed a law granting a person who is dying the right to choose how they can die to avoid needless suffering. The difficult discussions many people are having when facing their own mortality, or the mortality of a loved one, now includes the consideration of using MAID, medical aid in dying, if they meet the rigorous criteria for eligibility for this medication. Considering this choice can be less ambiguous when one is dying from an acute condition than when the condition is a progressive, degenerative neurological illness when end-of-life suffering can have a very different quality. With an acute condition like cancer, there is a more predictable trajectory depending on the aggressiveness of the particular cancer. With more chronic conditions such as COPD, ALS/MS, or others, there is more of a gradual decline, but during end-stage can have what seems like endless agony.

A DNR, or do not resuscitate, also known as no code directive for allowing a natural death, in my opinion, is a necessary paper to consider for anybody who chooses to exercise choice at a time when they are most vulnerable. I would consider it mandatory if you have a chronic illness that might require a 911 call and your autonomy is as important to you as mine is to me, where quality of life is more important than quantity. Most EMTs know to look on the refrigerator for a DNR. Many people don’t realize they can choose the level of suffering they have to endure. It takes a lot of Presence to be with an emergency in the moment and, if life-threatening, to move through it consciously. It is a big ask if one has not taken the time to contemplate our impermanence before things become emergent.

There is no right or wrong in my opinion. One must process through this rigorous part of the journey the best they can. At a certain point I decided I had lived in a victim framework long enough and I took my power back and got into the driver’s seat of my life, metaphorically. I began to realize that though I have much life force and a clear mind, my body was declining considerably and I needed to come to terms with the inevitable. It helps that I have a strong belief that our physical life is temporal and our soul is eternal. This understanding was hard earned. For some, letting go and letting doctors or family members make the decisions might be exactly what they need to do. It is not for me to determine what sort of death other people need.

Nobody who really knows me would say that I am a quitter.

Once I realized in 2007 that I was going to live alone with this degenerative, life-threatening illness in this harsh and magnificent desert town in Colorado, I gathered my resources, internally and externally, and began the sacred art of creating my life how I want it to be. Living alone for 18 hours a day and only being able to move from the neck up requires much creativity and fortitude, for myself and the caregiver. We have done it with Grace and much humor. It’s been a joy and a joint adventure with my caregivers and my family.

A few months ago, in a circle of women I had been meeting with for over ten years and with whom I have had a profound level of intimacy, I stated without fanfare that I felt complete. It was a strange sensation and a communication that came from an inspired, deep place inside mySelf. In a way, it felt like a proclamation. I was sharing my feelings about having the prescription that will release my body from the accelerating suffering. I realized that making that decision will take all of the courage I have inside me and, to me, that is true heroism.

Ironically, my digestive system began shutting down soon after this talk. (You know it’s bad when the hospice nurse cries for an hour giving you the diagnosis of gastroparesis.) I felt shock and grief stricken and wondered what happened to the part of me that felt complete. It’s like amnesia set in and my emotions took over. All of my human grief from living a full life arose: all of my attachments to the most important people to me arose, as did my attachments to my identity as a person of service to love, and even my attachment to this beautiful, struggling body; it all surfaced to be processed once again.

As I am writing, an adolescent mule deer peeked into my window. First, I saw velvety antlers and then a little face looked inside, curiously. It can’t be an accident that this young deer came at this moment, so close to my home, and peered into my window while I am writing this essay. The shamanic symbol for deer is that of gentleness, unconditional love, and kindness. The male deer, the buck, represents independence, purification, and pride. People have sought to identify with them ceremonially, wearing antler headdresses and imitating the deer’s leaping grace.

If you by chance connect with me in Spirit, you might notice me leaping gracefully through the clouds in ceremonial Joy. Rest assured that I will be finding a purer way to connect more deeply and in service to LOVE.
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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:

The beauty of horseback riding is that you need to learn how to be in complete control while at the same time in complete surrender. It’s a condition you cannot explain until you have climbed on the back of a horse and held the reins in your hand. – via obsessionreflection

Spectre and Clarice

I thought of Spectre as the Patriarch of the horse farm, the head of our horse family, the alpha of our herd, both equine and human. He was the most beautiful horse in the world to me and still is, in my heart. Since he was a thoroughbred stallion when we got him, being gentle was important for us novice riders. Spectre was a paradox; he was both gorgeous and powerful with stallion lines including a big, thick neck and he knew how to strut his stuff, yet he was compliant and sensitive and wanted to please. It’s as if he knew his power and used it judiciously. David bought him for $500, because as many gray horses do, Spectre developed melanomas. The primary tumor near his lymph node was wrapped around his jugular vein, so it was inoperable. We adored Spectre with all our hearts. The previous owner told David that we might have five years with him and that was exactly what we had.

Horses were always special to me. As a young child, I started taking riding lessons at the same stable where my mother had ridden a generation earlier. I treasured her English riding boots she gave me and kept them most of my life, despite being two sizes too large. By twelve, I had a horse of my own and during graduate school in New Orleans, I exercised people’s horses at City Park Stables. Horses were in my blood.

Being able to finally have my own horse farm was a dream come true. Our barn drew an extraordinary community of riders, horses, and dogs. We began learning dressage with Spectre until we found out that he loved to jump! Our close friend, Barbara, a professional jumper, showed him in his first jumping competition ever and he won a blue ribbon! He was a natural, but mostly he was a natural born lover.

Little did I know that a few years later I would be diagnosed with a life-threatening illness as well. I don’t have melanomas, but I do have a progressive, neurological illness that is slowly deteriorating the musculature of my body and has landed me in hospice at 64.

80% of gray horses eventually develop melanomas, but Spectre was young when his developed. Everybody loved Spectre, but more importantly, everybody respected Spectre.

The last time I was thrown from a horse, it was from Spectre. He’d been a stallion for most of his life, but a well-behaved stallion. People who know horses would smile at that statement. I was riding Spectre in the arena with a friend riding Jasmine and little did we know, Jasmine was in season. Usually Spectre was disciplined, and riding with other horses wasn’t a big deal, but I guess he was strenuously trying to contain his enthusiasm and gave the slightest little rear end bunny hop and I was instantly sitting in the sand of the arena. Realizing something was wrong, Spectre turned his head around 180° and looked at me. Thought bubble: Hey, what are you doing down there?

Only 15% of people with multiple sclerosis have as progressive a form as I developed. When I was 33, subtle symptoms began, but weren’t physically evident for another decade. In 2001, my horse Ransom broke away requiring me to catch him when I noticed that I could not run. I would be diagnosed two years later and the physical decline would be rapid.

Spectre’s last day

During our fifth year together, the melanomas were surrounding Spectre’s intestines creating a blockage. Keith, our beloved veterinarian, put on a glove up to his shoulder and relieved Spectre of his life-threatening impaction. David would have happily done this daily if Keith agreed, but he told us Spectre needed to be euthanized. Not wanting him to suffer and knowing that melanoma was a progressive disease, we scheduled it for that evening. Spectre’s appetite was unaffected, so on his last day with us, Spectre was given as much grain and carrots as he wanted. I wonder if he sensed our sadness as we celebrated our five short years together.

A decade later I found myself in a similar predicament. Muscle weakness became evident in my gait first and spread through my body, mercilessly. Peristalsis diminished from my esophagus to my intestines. Eventually, bowel problems similar to Spectre’s and difficulty swallowing would manifest.

I have a high tolerance for suffering, because in my heart, I believe it can be for a greater purpose when the suffering is emotionally regenerative rather than avoidance of the inevitable. Learning to discern the difference has been both rigorous and liberating. The feelings of helplessness from having a terminal illness only became bearable when I realized I could choose some of my circumstances.

Due to the slow progression of this illness, I often feel like a correspondent reporting from a war zone hoping to educate and empower others about their choices.

Update from the war zone– I have been choking while eating and needing help eliminating for six years. Despite the choking, I have chosen not to have a feeding tube, choosing quality of life over quantity. I designed my diet to strengthen the mitochondria of my cells, hoping it would clear the illness, but it hasn’t. I began to see that there is a greater plan at work for me and for all those whose lives I touch so deeply and being a reporter from a war zone is a large part of that plan. A feeding tube and a colostomy are not in my plan. To protect my kidneys, I agreed to a urinary catheter six years ago. Moving around with a catheter is something I’ve learned to live with; it is acceptable, despite having pulled it out once, accidentally. If you can imagine pulling a balloon through a penis, it was almost that bad. Wars zones elicit graphic images and dying is messy.

Being unable to cough or blow my nose, I have decided not to be resuscitated should I have a recurrence of pneumonia; drowning in my own fluids is not a form of suffering I need to re-experience. Images of waterboarding and other torturous methods come to mind. Inserting a nasogastric tube is one of the most painful and common procedures performed in the ER. Experiencing the suction machine was similar enough to determine a redline for me. So, no more 911 calls or ERs. If it were to restore me to a healthy life, that would be different.

Being virtually quadriplegic and living alone is not for most people. Fortunately, I have had the internal and external resources to pull this off. I have a care team of exceptional people who support me in this experiment. I have the opportunity and the joy to affect people all over the world with my writings and conversations.

I have learned a great deal from this curriculum from the inside out. I believe everyone has the sovereignty to choose for themselves how to live and how to die. More opportunities are being made available to empower those who choose to use them, from DNRs to MAID (medical aid in dying).

I believe as we evolve, we live more from our hearts (souls) than from our heads (egos). I know this, because my head would have given up long ago. Being a psychotherapist, I have come to understand that people make the best choices they can based on their level of development. We all have consequences for our choices, both good and bad– that’s how we evolve. In my heart of hearts, I believe that is what we are all here for.

I feel comforted knowing that the aid in dying law is passing state-by-state. If one meets the rigorous criteria to determine eligibility, it can reduce needless suffering that often plunges the dying and their families into helplessness and debt.

Nobody wanted to see Spectre suffer needlessly. He taught me a lot about having the courage to make the hard choices, despite my grief. I believe we humans have the same right, when death is inevitable.

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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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