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There is a feeling we have sometimes of betraying some mission we were mandated to fulfill, and being unable to fulfill it. And then coming to understand that the real mandate was not to fulfill it. And that the deeper courage was to stand guiltless in the predicament in which you find yourself. – Leonard Cohen

People are usually surprised to hear how I really feel about living my life under such extreme circumstances: being unable to move from the neck down after being a competitive athlete my entire life, living in a body that can barely keep me alive, having difficulty speaking audibly when tired and barely being able to whisper. It just boggles people’s minds that I could live my life with so much gratitude for being, so much gratitude for having as much independence as I have, defying what our medical establishment is able to tolerate due to the excellent, compassionate, spiritually-driven circle of women and men who surround me and care for me. The paradigm we have co-created has allowed me to focus on what I truly value – connecting deeply with the people I love and helping them to allow more Love in their lives.

I live an interesting paradox. My body is in hospice, but my mind and my Spirit are experiencing the most joy I could ever imagine in life. How can that possibly be? I could never understand it without living it. It is true that I cannot move, eat, eliminate, without complete dependence on others, however, there is so much I can do that I would never have been able to with a fully, functioning body.

My life has always been about service–service through my psychotherapy practice, service through my interracial gospel choir in New Orleans, service through my nonviolent communication groups and my caregiving and women’s circles, not to mention service to anyone who enters my house, including the UPS man. There’s nothing that gives me more joy than helping someone recognize and allow more beauty and love into their lives, especially self-love which is from where all love emanates. It is only through love that world peace can be achieved.

With my body slowly dying from a neurological illness, the progression happens gradually; I lose one function, one ability after another. Everybody goes through this process during aging, mine is merely accelerated. To me, death will be an adventure when the time is right. After allowing myself many years of grieving, I began to see the brilliance of this curriculum. Suffering is minimal. I believe that grief only becomes suffering when it is not fully felt. My suffering has been mostly emotional. If I’d had too much physical pain to bear, I might be having a different conversation. Earlier in the illness, I broke many bones during accidents: sternum, toes, patella, femur, but they have all healed. Unlike most people with end-stage illness, I am fortunate to have little neurogenic pain. Everything is firing from the neck up, so I am able to strategize my circumstances to avoid pressure sores from becoming septic, aches from becoming chronic, my mind from becoming stagnant, and to free my heart to continually emanate and feel love.

When one is moving toward the end of their life, often dreams can become more vivid. Upon awakening, recounting the dreams of my sleeping state often reveal inner work that is yet to be addressed. Sometimes my dreams merely clear emotional material that is clouding my clarity; dreams are always regenerative teachers. Lately, I have been experiencing my dreams as a bridge to the Spirit world, perhaps to aid my transition.

In one such dream, I was painting columns of an antebellum home a particular color well known to Southerners – shutter green. Shutter green is the color many shutters are painted in Louisiana where I lived and raised my children for 30 years. I frequently dream of the turn-of-the-century home where I raised my family. The house in the dream was clearly a variation of that home and magnificent property. We lived off a highway called Military Road where confederate soldiers were rumored to have marched, thus giving it that name.

In the dream, I was painting these columns with the woman who owned the house. I knew her name clearly. It was Monique (or Monica) Marie Crane. I remember feeling that it was essential to me that the woman feel good about the work I was doing. Her husband would be home soon and I wanted the column he would see first to be meticulously painted. Doing a meticulous job felt almost like a spiritual calling. There was no duress, no external pressure.

I remember looking into a full-length mirror and seeing a very pleasant black man! I can remember moving my arms to see if the reflection would move with me. It did. I was clearly the man in the mirror. The love I felt looking for the man was profound. I can still feel it today as I recall the dream. There was no sense of time, no feeling of enslavement, no sense of victimization. Pleasing others with my craft was deeply satisfying.

After I woke up, I felt such love for this man that I told my friend who is a hospice chaplain about the dream. She affirmed its significance and offered her own perspective. She saw how this man’s life appeared to parallel my life, that I’ve lived life’s circumstances with much gratitude and no feelings of enslavement, despite the lack of freedom of movement. As she described this, I felt the kinship with this man. I felt deep love that I cannot understand cognitively.

We live many lives in one life and perhaps we live many lives in many lives. The I who is, is constant. The I is forever.

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crestone-eagleMany years ago, a close friend who was a hospice social worker asked me to cover her hospice clients while she was out of town. I told her, “I don’t do death.” She then taught me something that was way beyond my 40 years. “Hospice is not about death, it is about life.” Because I had been experiencing subtle neurological symptoms for years and I feared a degenerative, life-threatening illness building in my body, this concept peaked my curiosity as it assaulted my logic. How could dying be about living? Almost like a Zen koan that evokes enlightenment by showing the inadequacy of the logical mind, I had the next two decades to contemplate this paradox, because two weeks ago I became a client of Hospice del Valle in Alamosa.

When I was considering entering hospice, I received desperate messages from friends around the country who had heard I was actively dying. After all, I must be actively dying if I was in hospice. This is one of the major misconceptions hospice workers encounter. Families usually consider hospice only in the last days or weeks of a person’s chronic or terminal illness, which, in my opinion, does a disservice to the patient and greatly limits the level of care available through the organization. The main purpose of hospice is to provide palliation to chronically, terminally, or seriously ill patients (not expected to live more than six months), which includes attending to their medical, psychological, and spiritual well-being and those of their families.

Living in a culture that is death-phobic, no one wants to mention the H word to a person who still has some life in them. What if hospice involved helping to reduce the suffering of persons deemed terminally ill, but still living for many months? The illness I have been living with is a slow, degenerative illness that has only affected me from the neck down. The effects have been devastating, but from the neck up I have been able to maintain a quality of life that is different, but regenerative in nature. Having been a psychotherapist for thirty years, my work has become more selective but much deeper, given my spiritual growth directly informed by what I consider my “spiritual curriculum.”

I had considered hospice for the last year, but since I was not actively dying, I did not consider it seriously. My most experienced caregiver who had worked ten years in a hospice told me that about 10% of her hospice clients lived an average of two years. Working through the necessary emotional stages, I engaged the closest hospice serving Crestone. To my surprise and tremendous relief, I have received care on every level I could imagine—physical, mental, psychological, and spiritual. They are an interdisciplinary team: MD, RN, CNAs, chaplain, and Family Support liaison. Whereas in home health, improvement needed to be noted, with hospice I could let go and receive care on all levels. This is supporting my dreamtime, depth of meditation, and, I believe, allowing me to begin a conscious death with open communication to my Guides on the other side. Intuitively, I have been able to let go and begin my journey through the Bardos.

I imagine that choosing to work in hospice naturally screens out individuals who are not comfortable “doing death.” My experience with each professional is that their level of skill, compassion, and care have surpassed my high expectations. I now know what my friend was saying; hospice has been about improving my quality of life, even though I can die within days. I can also live months and perhaps a year or so. That was never a possibility before I engaged hospice. I am a natural strategizer or I would never have been able to live alone while quadriplegic, but their expertise has taken this to a new level.

I will likely see 2017, but perhaps I might see 2018! With the help of my care team and now hospice, I can continue to lead my psychotherapy group on Skype, share my growing wisdom gained from living in stillness, and perhaps I’ll live to write another book!

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

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” -Margaret Mead

Vector illustration of a man in jailI watched a powerful documentary titled Serving Life, narrated by Forest Whitaker. It was filmed in Angola prison, one of the most violent prisons in the US. The Warden decreased the violence by 70% by infusing humanity into convicted murderers and sex offenders. He instituted a hospice program where the felons, acting as surrogate families, took care of each other through their final passage. Their lives were no longer focused on the life they took, but the life they served making his transition.

The closest I got to Angola penitentiary was hiking outside the prison. I have always had a difficult time being in the dense, impacted energy of prisons. I had a student intern who was placed at a local prison. My denial regarding sociopathic personality disorders rendered me vulnerable to their manipulation; prisons were not safe to my psyche. My student introduced me to interesting personalities within that particular system. One such sociopath would wait for a person to walk by his prison cell and ejaculate through the keyhole. His aim was impeccable and a message was clearly delivered. I was out of my element within the prison walls.

It would be a few years before I became initiated to finally accept the intransigence of the sociopathic personality disorder. This excruciating process was described in a previous blog entry titled Dancing With the Devil.

My first male psychotherapist named Ken had spent many years in a maximum security prison until he had systematically taken down the internal walls around his heart and the prison system could not spit him out fast enough. A certain energetic frequency needs to be maintained internally, in order for the external walls to be maintained. Once his vibration raised, his environment needed to change to attain a new equilibrium. It is merely physics.

We create self-imposed prisons based on our internal beliefs and thoughts, which is what determines our energetic frequencies. As we clear the clutter around our minds and hearts, liberation is achieved. From what I have read, which resonates through my Being, we will merge into Unity once we all heal and evolve. The ramifications of this Truth are profound, if we can grasp the reality as our own. It means we all need to help each other. No one can be left behind.

The ones who have lost their way and exhibited predatory behavior are also included in this Whole. When I see the work being done in Angola, the “bloodiest prison in America,”  I can see, without equivocation, that this is possible.

“Out beyond ideas of wrongdoing and right doing, there is a field. I’ll meet you there!” -Rumi

LR5 yell adj bluehue-7833

I am calling hospice today to see if I qualify for their services. Living in the wilderness, there are few services available in our area. Even the home health organization cannot provide outreach for our area anymore. Although I am self-sufficient, occasionally there are issues that are beyond me medically. For example, a few weeks ago my heart rate went to 152 while I was standing, so I was exerting. I didn’t know who to consult.

Making the decision to call hospice came from me. Nobody referred me to them, not the home health organization that regretfully discharge me, not the doctor who agreed to be my primary care doctor, not my caregivers or friends, some of whom are nurses. I don’t think anybody wanted to connect me with THAT organization. So it really wasn’t a matter of neglect or oversight, but perhaps it was more a matter of denial, denial and grief.

We called and although I don’t qualify for their short-term program (hooray), I qualify for their long-term palliative care program. Palliative care is defined as multidisciplinary approach to providing medical care for those with serious illnesses, to relieve pain, symptoms and stress. The administrative person explained the program and said with a doctor’s order, I could sign the paperwork. I explained that I cannot use my hands and she suggested a power of attorney. A power of attorney to me suggests deferring power to another. Doesn’t she realize that is what I have done my whole life?! I refuse to do it now. My suggestion was duct tape, but she didn’t seem to appreciate that.

There is a part of me (by the way, who is in charge much of the time) that really does not take this seriously. When you have a life-threatening illness for as long as I have and have moved through the state of acceptance to a state of transcendence, it is hard to take these circumstances too seriously; I would be way too serious, way too often. I had to give that up.

I feel like someone who is about to go on a beautiful journey and is excited about the adventure. Thinking about my place of departure is not really the point, when you are going on a “pilgrimage.” There is much I will appreciate to not have to deal with, like my in floor radiant heat, the physical discomfort I deal with on a daily basis and the enormous energy it takes to stay proactive, just to stay alive. When I think of my greatest grief, it is in leaving my children and grandchildren. As I open more to the belief that I will not truly be leaving them, what’s the point? It’s not like I can go skiing, swimming or riding anymore. After all, once we all make our transitions, we will be together again.

So I have the dubious distinction of being a member of a group of which I didn’t really want membership, but I am a member of a broader group, a group formed and expressed through LOVE, and I embrace that membership.