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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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There’s a feeling I get when I look to the West, and my spirit is crying for leaving… – Led Zeppelin

Beginning the conversation

Since the onset of subtle neurological symptoms in the late 80s, I have lived an increasingly more conscious, full life. I have valued my lifelong mission of service to a greater degree and lessened my fear of death, considerably. I am left with few regrets and incompletions. Having been given the opportunity to live a long life, to see my children grow up and have grandchildren, gratitude ekes out of my every pore. I have had the time for all the difficult conversations with my family and my beloveds. We have shared our grief which is, of course, never enough, but a good beginning.

Having lived what I feel is a “good” life, I have less fear of death. There may be minor regrets and incompletions, but I have the courage to be present with any unfinished business with the people most dear to me. I have come to terms with the limitations of my ability to control life, and death. Many people open to religion or spirituality when facing one’s mortality which may lead to questioning what happens after death when one’s physicality becomes less central and awareness on the soul level becomes more accessible.

At this point in life’s journey, completing The Five Wishes, a comprehensive guide for personalizing the circumstances surrounding one’s death presented HERE may become useful. Living with the kinesthetic understanding of impermanence, I have come to value each moment like it could be the last, because it could.

Until recently in my dreams I have been walking, running, or riding my motorcycle or horses and my dreams have been completely devoid of any disability. Others readily came to me with their own dreams of me being ambulatory. For the last year, my dreams have become more constrained with wheelchairs and disability. The “costume” for this curriculum is becoming too heavy to bear.

Death is trending

The topic of death is becoming less charged. Perhaps baby boomers, or the children of baby boomers, are beginning to experience physical decline, first-hand. Some are observing loved ones who experience prolonged, excruciating deaths due to the ability of modern medicine to prolong life by any means, regardless of the suffering incurred. Our culture’s phobic reaction to death is being revealed. Witnessing loved ones suffering a “bad” death has led many to consider offering more choice and autonomy during this sacred time in one’s life. For those who are less fearful, moving toward the understanding that life is eternal and the physical body temporal, can be truly liberating.

I received a communication from a woman from Australia who is known as the Deathwalker. She walks people through their transitions, including performing wedding ceremonies and death rituals. She came to Crestone to learn about our groundbreaking end-of-life program. Our open-air cremations and green burials are an attraction to those wanting to share this passage in a meaningful, ceremonial way with their community.

I have planned my cremation impeccably, down to every detail: my preferred music – Bruce, the Native American flute player/maker with his portable amplifier; clothing – my cobalt, silk dress and silk fabric from India; traditional prayer – Cindy will say Kaddish (the Aramaic prayer for mourners to sanctify the Divine); what I will hold – Mark’s and Basha’s ashes, sage from Wounded Knee, and my “lifeboat” fabricated with handmade paper by Allison to accompany me on my journey. My Beloveds will be able to speak if desired. I have no doubt that I will be there.

Self-determination as a Sacrament

I know that systems take time to change, but those who oppose the aid-in-dying law want to deny people the right to choose how they might die, when death is iminent. Don’t they know that people are suffering needlessly? For some people, suffering is intertwined with their religious beliefs. That is not a part of my belief system. I believe since people have the autonomy to choose how to live, they should also have the right to choose how they die. If their religious beliefs are in conflict with certain choices, they have the right to make the choice for themselves consistent with their own values. Of course, death brings its own circumstances, but life-prolonging medical interventions merely prolong suffering rather than extend quality of life in many end-of-life scenarios.

Historically, ancient Greeks and Romans practiced self-determination when facing the end of their lives before Christianity. Indigenous peoples knew when it was their time and they walked into the mountains to enter the spirit realm. Self-determination to me is a sacrament – a visible sign of divine Grace.

Crazy Horse, a holy man of the Lakota people, was immortalized by saying these words while going into the Battle of Big Horn, “Today is a good day to die.” This statement epitomized the philosophy of the indigenous peoples, to die an honorable, brave death:

Our lives are a circle just as the stars; the moon and the sun are circles. We are born, we live and we die. There were no greater prophets than Crazy Horse and the holy men and women of the many tribes of what is now America. – Tim Giago, founder of Lakota Times

My personal Journey

I am in a body that is like a prison cell. I have learned to love my cell: it keeps my organs together, it allows my heart to beat, and my lungs to breathe, diminished as it all is. I have learned so much in my prison cell. I am a Cancer, so I could call it my crab shell; it has supported my Sacred Retreat. I have studied life, learned to write, I have communicated wholeheartedly with loved ones and have repented my indiscretions. Through all of this I have been able to connect with the Beloved and learned that beyond ego all there is is love. I have faced my greatest fears and learned that what I have been seeking outside of myself all these years is inside.

My beloved body has been deteriorating at an accelerated rate since the diagnosis in 2003. It is progressively more fragile with each week. One injury, choking incident, or one errant virus can bring an end to my already limited quality of life. The resources it takes to maintain an ever-declining baseline is exhaustive. Nevertheless, I have much determination and life force.

To me, every day, every minute, is an opportunity to love: to express love, receive love, and to help others remove the blocks to love. I have been received on seven continents with the lessons of love, I have integrated and supported many through minor and catastrophic challenges. It is my Work. It is my joy.

I have worked hard to bring aid-in-dying into the conversation standing on many peoples’ shoulders, wheelchair and all. Why would anyone refuse to unlock the prison door if one has the power, the responsibility, and the law on one’s side?

I know I have the capacity to live longer in my cell and I will reap wonderful rewards in my confinement, but what about the people suffering needlessly without the financial resources to maintain a regenerative quality of life? What about the people suffering without the internal resources to turn poison into medicine, as my Buddhist friends say?

I trust that when my time has come, I will know it. I live a paradox with an ever-fading body, yet with much life force. If we can omit shame from the process of choosing how to die, are able to feel our grief of letting go fully (my greatest challenge), listening to a deeper Knowing is available to everyone. It is in the natural order and death can be a sacrament that completes the circle of life.

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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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