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Hard times require serious dancing. – Alice Walker

No. I don’t have a pretty picture like a great ship sailing in stormy waters or an image of a physical body’s particles dissolving into eternal, ecstatic light. This is my latest injury. My right leg sustained yet another injury last Friday while transferring to the stationary bike. (I know it’s bad when the hospice nurse cries.) What will I do when my legs can no longer support any of my weight, when I cannot stand or ride my bike or even take care of the basic daily living skills? My body is known for healing quickly, but each injury is more debilitating and each recovery finds a new baseline with less ability.

The night before the injury, I slept ten hours which is nearly a record. My sleeping has been getting better and even my occasional naps are becoming longer. I’ve heard that as people move toward dying they sleep more. I believe we are given much preparation for our transition in our sleep, whether it is received consciously or unconsciously. The day after the injury I woke up from a dream that was partially autobiographical, but with dreamlike embellishments. I believe they – the Voice I’ve spoken of previously– wake me early some nights, because there is something I am needing to acknowledge and/or process that in waking hours I cannot access. In my dream, my former husband was becoming more distant from me with coldness and resentment. I tried to call him near, but he told me that he was closer to his new girlfriend’s family than my family. When he told me this, I cried desperately from the grief and fear of going forward alone with this illness. This was mostly biographically accurate, but I received it as a reminder to grieve. Being able to grieve is so important in our bittersweet, human lives and I believe it’s necessary to grieve well in order to truly feel joy. Since I began psychotherapy in my 20s and through fifteen years of Holotropic Breathwork practice and becoming a trainer, I have become more comfortable with grief knowing that joy is just on the other side. David was unable to process grief openly during the eleven years we were together. No one could navigate this curriculum without the capacity for grief/joy. I understand that this is an accelerated course in life and not for everybody. It is not a failing to be overwhelmed by my life. Believe me, I get it.

In her seminal book, The Hero Within, Carol Pearson, presents six heroic archetypes that exist in all of us. To access this best-selling classic with strong Jungian influence, click here. According to her teachings, we all have access to each archetype, or ally, and when made conscious they can elevate our self-awareness. The archetypes evolve developmentally as we evolve.

Suddenly in the dream, I slapped my face. Referring to Pearson’s archetypes, I realize that I have been avoiding the feelings of the Orphan archetype (vulnerability, innocence, fear of abandonment), wanting more the Warrior archetype (strength and physical persistence). This translates literally to my waking life. Authors like Carol Pearson and Michael Brown offer us so many tools to aid in our evolution.

By waking up 2 1/2 hours early, I had the time to explore the meaning within the dream. I remembered an earlier time when I sustained multiple injuries while I was avoiding the use of a wheelchair. If you know anyone with a progressive neurological illness, as the disease progresses and one’s equilibrium is affected, one may tend to wall-walk in order to stay upright. I became adept at wall-walking, that is, until I fell with my computer landing on my knee to avoid damage to my laptop. My kneecap cracked with the force. Still, I persevered and dragged myself onto the tractor. If will could have kept this illness at bay, I might have dragged myself up Mount Everest. Climbing off the tractor, I fell on my knee again and broke my patella in half! I have always minimized my injuries, that is until I couldn’t.

I required crutches and then a walker while the injury healed. Soon, I fell onto my computer desk and cracked my sternum! When I finally sat in the freaking wheelchair, I felt the relief of surrender. The dream last night and my time in contemplation allowed me to wonder if the series of injuries I’m experiencing now is an indication that I am needing to surrender once again.

The Orphan archetype, an ally that brings resilience and realism to situations through a willingness to feel vulnerable might be the exact medicine I most need now. Ironically, the illusion of abandonment is the pitfall of the Orphan when life is not met head-on. So it seems that these recurring injuries may be a message that I am needing to meet what is head-on.

Ultimately, letting go of my will means letting go of the illusion of control, an illusion we share as humans and seems to be a recurring theme in my life. Feeling the grief of what I am leaving behind is part of the work of moving from Orphan to Innocent to Warrior to Magician, to ultimately allow myself to be transformed, to be more of who I truly Am.

My dear friends tell me daily how courageous I am and what an inspiration I am for their lives. If you are reading this, you are one of them. I appreciate being received as inspiring, but I know everybody will be facing this level of surrender eventually in our lives. I am just doing it earlier than most, in slow motion, and reporting in real-time.

I am moving into the next level of this heartbreaking and joyfully sacred path we call life, which includes death. May I do it all with Grace and Gratitude. Namaste.

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We are one, after all, you and I; together we suffer, together exist, and forever will re-create each other. – Pierre Teilhard de Chardin

Well, today’s the day for my second physician’s appointment to determine eligibility for the new Colorado Aid-in-Dying law. A major factor determining eligibility is to establish that I am of sound mind.

To determine if one is of sound mind, a mental status exam is performed. The patient needs to be “oriented times three”, as we say in the profession. That means the patient needs to know who they are, where they are, and when they are – person, place, and time. Often a common question that is asked is, “Do you know who the president is?” Please please please, don’t ask me that question!

Allison, my primary caregiver, friend, and partner in discussing philosophy, spirituality, and geopolitical ramifications of the present day circumstances, etc., has been with me every step of the way through this end-of-life learning curve. Allison and I do not shy away from any topic, no matter the depth nor the breadth, and we share a sense of gallows humor that would make other people shutter. It is the sort of humor I relied on in the mental health center while dealing with continual heartbreaking situations. One has to be initiated, in order to share this type of Mash humor, in order to meet each moment. Allison and I are talkers, and when we talk we become so entranced with the content and our brilliance that we become somewhat disoriented, that identifying the date during such discussions becomes momentarily unreachable. We have this joke that when the doctor asks me the date, my reply will be, “Can I call my lifeline?”* It’s not that we are mental status-deficient, actually, quite the opposite is true; we allow ourselves to be transported. I hope and know that Allison will go on to do fascinating, significant Work in the world, when this work together is complete. I know our time together will be a catalyst for both of us. That is the nature of our connection, not a small ask from either of us.

The most common question I get from people is, “How are you able to be so present with this curriculum and be so lighthearted and present with other people’s suffering? Well, my answer is in two parts: I have people like Allison in my life who can go there with me, to be in my pain or to be in my excitement of going on The Great Adventure, both equally as important. Secondly, I have come to understand that I AM much more than my physical body. Realize that I live one injury, one choking incident, one errant bacteria or virus away from death. All my caregivers and friends are well aware of this fact. They, too, have been initiated, by loving me, watching my body weaken over time, and watching my life force grow.

Since I am not quite ready to feel the weight and magnitude of my meeting today, I will offer some other topics Allison and I find hilarious. After I have a choking attack where my eyes bulge and the caregiver is listening intently for that crucial in-breath, my mind is thinking about other things. As soon as I catch my breath and resume the ability to speak, I will often comment on something totally unrelated and banal. Perhaps there is a dissociative process happening, but as long as the choking is not life-threatening, my mind entertains itself, which then entertains my caregiver. Often, this is a moment where comic relief is needed. (I learned humor as a coping skill in my family of origin.) Many people find this type of humor tasteless. I’ve certainly had that reaction from people. Either you get tastelessness or you don’t. Either you experience relief from it or shock. It is, perhaps, an acquired taste. Nevertheless, sometimes we laugh so hard we have tears dripping down our faces. I know what dying laughing means.

When I assess people, I look at physical, mental, psychological, and spiritual well-being. Fortunately, for me the last three are functioning and developing well. Today, the doctor is assessing the first three qualities. Today, I hope he doesn’t ask me that question. Dissociating during a mental status exam would be counterproductive.

The shit is getting real. I am needing to accomplish a multitude of tasks in order to secure the medicine before I can even fully open to the grief for where these practical matters are leading. My grief is personal, but I also feel grief for the people who desire this right to lessen suffering at the end of their life, but don’t have a Masters degree, the capacity for humor, or a support system like I have. For them, the shit is very real and many likely don’t have the resources to complete this arduous task. My wish is for my words to reach them and they somehow feel comfort, that they can reach for the Love that is also reaching for them.

*This line is from the game show Who Wants To Be a Millionaire, aired in 2002?

Riders on the storm. Into this house we’re born. Into this world we’re thrown. Like a dog without a bone. An actor out alone… – The Doors

himalayas

There are times in our lives when we need others and there are times when we absolutely need to be alone. Sometimes discerning the difference is easy and other times we learn by default. In my opinion, there is no right or wrong, just living life with, what Krishna Das calls, a pilgrim’s heart. We learn by following or avoiding the inner promptings we designed prior to taking bodies, by allowing, or avoiding the flow. There were times in my life where resisting the flow was a necessary teaching, not easy, but humbling and has made my ego more pliable, more open to surrender.

I have had many incarnations in my sixty plus years on the planet, including three wonderful marriages, living in multiple geographical locations, and raising two deeply talented children. I used to live in much self-doubt questioning all my choices, but I’m becoming more and more convinced that there are no mistakes. We each do the best we can with the internal resources we have, listening deeply to best adhere to the plan we’ve made for our life. Some people live a single lifetime with laser focus in relatively static relationships; others live many lifetimes in one with a meandering trajectory. There is no better or worse, right or wrong, but merely different curricula. My particular curriculum has been more the latter, many lifetimes including different immediate family members for long stretches of time. Living family life with so much change, yet with deep intimacy, requires an enormous amount of emotional elasticity.

Often there are tools along the way for expediting the journey if we are fortunate enough to recognize them. Michael Brown, author of The Presence Process and South African shaman, generously shares a process that has been enormously helpful to himself and many others, certainly to me. It merely involves reading his book and following the steps with his generous guidance. Recently, I have completed this process for the second time. In short, his book presents a ten week process of developing more presence by deepening one’s self-awareness. By sitting twice a day and following specific instructions, deep change occurs. It is the most effective process for eliciting a deepening of one’s consciousness.

Being at a crossroads in my life and having others I am working with who would benefit from the structure of Brown’s process, I decided to repeat it while helping to facilitate my beloveds. The crossroads I mentioned involves revisiting the question of whether the time is right to enter hospice. The illness has progressed which has accelerated my decision to enter hospice. Noticing internal resistance and needing the stillness the presence process offered, I started the ten week once again.

During my sitting last night, in the stillness and the safety this process provides, I heard, “If I enter hospice, people will give up on me.” It didn’t take long for me to hear the resistance, the blockage to fully opening to the gifts hospice offers. I understand why it was difficult for me to hear these fears, because it’s always been hard to make the hard choices, to go places where others cannot go. As I suspected, some people are moving away from me and other people are coming closer, being attracted to this accelerated form of my curriculum. Michael Brown uses an interesting metaphor involving the Himalayan Mountains to explain this daunting and painful tendency that really spoke to me:

Some people feel drawn to the Himalayan Mountains and they have a picture book of the mountains on their coffee table. They are happy with that. Fewer people have a photograph of the Himalayas on the refrigerator 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 go to the summit. Going to the summit is not for everyone. There is no judgment, no right or wrong. People merely have different needs and capacities.

Everybody has their own version of the Himalayas in their lives. Some yearnings are more easily satisfied, some more arduous, but each has his/her own journey. Once we agree to make the journey, there are many lessons along the way, like following the breadcrumbs left in the path as in Grimm’s fairy tales. For me, learning to let go of control has been like releasing a huge backpack on the climb. Developing the capacity to feel grief has been another requirement along this beautiful adventure we call life.

Developing Presence, being present for every moment, no matter what is required, is a tall order for this grief-illiterate culture. Fortunately, there are trailblazers like Michael Brown showing us the way to live more authentically in this increasingly complex culture. One of my favorite lines in his book is, “It’s not about feeling better, but getting better at feeling.” Ironically, when we develop the capacity to feel anything and everything life presents, our sense of peacefulness and joy grow exponentially.

Stephanie“Death is a wardrobe change.” -Pete Bernard

Dearest Stephanie,

I was so happy to hear from you from your hospice (!) after my last blog essay. I know you cannot interact with me the way you would like to. I miss that and I will grieve. What else can we do?

I don’t know how you found me, but I do know why. I will listen for you in the wind and hear you in my heart. You are so generous with your offerings. And I know you will be, forever.

Write if you can. I will be listening.

When you can no longer connect with me, I will see you on the other side . Thank you for all the articles and your loving support.

I will love you always, Aliyah

 

Stephanie Sugars is a beautiful, survivor of Life who has had metastatic cancer for nearly twenty-five years. She has been a lifelong activist, perennial teacher and has, in the last year, become my friend.

Stephanie reached out to me nearly a year ago with much support, identification and empathy for my challenges, with so much love. She is a proponent of natural death and she is presently, with the support of hospice, teaching by example.
http://www.pushinglimits.i941.net/?p=488

“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.

“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” –Christopher ReeveI&Cr  

I met Christie in 2003, the same year I was diagnosed with progressive multiple sclerosis. Our interracial gospel choir was performing at an educational venue in New Orleans, when after the singing we broke up into small groups with the audience and spoke about racial issues and how they affected our lives. Christie was a delicate beauty as she spoke about her parents having been activists during the civil rights movement during the 60s. She felt particularly drawn to the mission of our choir.

Each person in the breakout session added more facets to a subject wrought with passion and heart breaks, bringing a sense of solidarity and mission. Christie admitted she liked to sing and would love to be a part of the choir, but she obviously held back. When I encouraged her, she disclosed that she had been in treatment for ovarian cancer for quite some time. This is a cancer that remains hidden and undetectable until it’s too late, the elusive killer. It seemed almost unimaginable that this vibrant, passionate young woman with her life in front of her could be undergoing an unseen struggle just to stay alive.

Christie clearly wanted to join the choir and when I told her of my recent diagnosis of multiple sclerosis, it seemed like more of a possibility to her. It was decided that she would come to rehearsal one Thursday evening at Loyola University to check out the possibility. Christie was met with great enthusiasm and welcomed into our impassioned singing group with a mission.

One of our CDs is dedicated to Christie who sang with us and lost her battle a couple years later. When Christie came to my farm to prepare for our performance at the St. Louis Cathedral, she acknowledged that she had been at my farm before. I didn’t consciously recognize her, but she and her boyfriend purchased cabinets from me a few years before. There was much Christie and I shared that evening in our discussion group that would unfold as crescendos and decrescendos during our truncated lives; truncated in quantity, perhaps, but long in quality.

Christie and I shared a passion for music, social justice and we were BOTH confronting catastrophic illness. When embarking on a journey involving life-threatening illness, we face our greatest fear, that of our mortality. I don’t know if anybody is ever ready for this ordeal, but it offers a particular challenge this early in life. One no longer has the luxury of being immobilized by the fear; illness requires that one’s values are assessed, which then requires action. Healing modalities will need to be strategized along with loved one’s input. By facing this Call, courage is the likely end product.

The connection between Christie and myself was instantaneous, like looking into a mirror. I felt her fragility and was able to reassure her that she could do it; she could join our choir and sing in solidarity. Christie was a fellow heroine.

Illness happens for many reasons in one’s life. It can be a catalyst to move forward, if one has been holding back. There can be agreements made on a soul level to move the individual and the soul family forward in their development. Making assumptions based on one’s own limited perspective as to why a person is ill can be very reductive for the person experiencing the illness or injury.

For people who knew Christie, she changed people’s lives for the better. The world is a better place because she and her family are/were in it. She is no longer in her body, but she still is. Almost 10 years later, she still lives in my heart, and for that I wanted to Honor her.