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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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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:

“Death is a part of the achievement of life.” -Mother Teresa

sovereignty

I’ve been thinking about the Aid In Dying law that passed in Colorado by nearly a 2/3 margin and the resistance it is getting. I’ve been exploring my own feelings about people rejecting the law based on what they describe as a caring gesture. I don’t doubt that people are concerned about other more physically vulnerable people being taken advantage of; this is a valid concern. However, having been a family therapist for almost 30 years, I understand that if a dynamic of overpowering an individual already exists in a family, this pattern will likely happen, regardless, as the family member becomes more vulnerable. Haven’t we all seen the elderly or infirmed be unjustly treated as part of an unconscious pathology in a family? Most of us have heard the stories or witnessed family members overriding the dying person’s wishes, overpowering the medical staff with threats, overt or covert. Fortunately, the Colorado law was crafted well with many safeguards for protecting the vulnerable. Otherwise, I would not have supported it.

Another concern I’ve heard voiced is that the circumstances surrounding death is God’s will. Okay, so does that mean extending life through technological advances is God’s will also, even if that means prolonging peoples’ suffering, when the quality of life is diminished, and death is imminent? I don’t mean to diminish the value of suffering; I have evolved considerably through my suffering, but I also know the difference between productive suffering and needless suffering, for myself, and I believe everybody should have the right to choose what they can tolerate for themselves. Through much inner psychological and spiritual work prior to and accelerated by this progressive, terminal form of multiple sclerosis, I have cultivated an inner capacity for suffering that other people may never need, or as Buddhists call, “turning poison into medicine.” Sometimes this transcendence only happens at the end, sometimes not until we crossover. Suffering can be an obstacle to transcendence or it can be a catalyst. We must remember that our soul is in charge. I believe everyone in the dying process should have the right to choose how they make their final transition. The Aid In Dying law allows us the autonomy to decide what our bodies and spirits need.

Many opponents to this law call it “assisted suicide.” As a licensed psychotherapist, I evaluated suicidality in people. People who are suicidal want to die. Most people I know of who are dying and considering the prescription want to live; they just want to have some choice in how they die.

Whose bodies are these, anyway, once we have passed the age of majority? My belief is we have  sovereignty over our own bodies if we are mentally competent. Who are we to judge what decisions other people make or do with their own human bodies? One may judge another for eating meat or for not eating meat. Jack Kornfield, author and Buddhist teacher, once said, “Vegetarians are just not sensitive enough to hear a broccoli scream.”

I have been told that I am the perfect candidate for our Aid in Dying bill. Why am I any more perfect than the person dying from cancer with a family that believes all medical means available should be used to prolong their loved one’s life, which also prolongs their suffering, if that isn’t their wish? What would it take for the dying person to be able to choose a better of quality of death, or what is called a good death?

I understand that this requires a paradigm shift in a culture that is death phobic, as Stephen Jenkinson, the author of Die Wise – A Manifesto for Sanity and Soul, so aptly posits. I understand that there can be a slippery slope determining one’s mental status and true stewardship of their body when dementia is a part of the picture. I understand the opponents of Colorado’s Aid In Dying care about others and they fear the vulnerable might be coerced, but this caring should not usurp the dying person’s power of choice, whether one would make the same choice for themselves or not. The law provides safeguards.

If our culture is to become more accepting of death as a part of life, in deed as well as word, we need to confront the fact that we will all die. When we had a more agrarian society, chickens, turkeys, and other animals were sacrificed on a daily basis. On our farm, if we had been more aware, we would have thanked Franklin the turkey for giving his meat so we could live. Actually, the coyotes got Franklin and I was devastated as I went to the grocery store for a Butterball turkey for Thanksgiving, or its organic equivalent. I learned quickly not to name the poultry and make them pets. I am a part of this death phobic culture and perhaps that is why I am so outraged. I feel the resistance internally, the old pattern leaving as the new pattern is forming.

We learn early in our culture that death is bad. When Jordan was two and I was feeding him a lamb chop and Mary had a Little Lamb was his favorite song, he looked at me with tears of betrayal in his eyes and asked me, “Did somebody chop a lamb!?” It was one of those moments mothers fear. I told him that we could thank the lamb for giving its life so we can live. Jordan cried his eyes out. Perhaps if we had been giving thanks for everything that died for our meals, even the broccoli, his heart may not have been so broken. Maybe heartbreak is unavoidable and we need to feel the grief fully when a living being loses its life, whether from cancer, neurological disease, or an elk running free on our land that was needed to feed a family.

I wonder what other deeply held unconscious beliefs get triggered if one who is dying is allowed sovereignty over their body.

Probably my greatest revelation with this cause is that if I imagine having the prescription and I have the legal right to choose, I am freed up to reflect on my life—what is incomplete, what regrets I might have, and finally, whatever is in the way of completely letting go is illuminated. I am free to move to the next level of dying, emotionally and spiritually. I wonder if this is the real issue behind the collective resistance to allowing everyone choice. Perhaps accepting, but truly accepting, that what is at the core of the resistance of allowing everyone choice is our collective fear of facing our own mortality!

Perhaps the patronizing, paternalistic professing of care for others is a cover for the realization that we are not in control of anything, much less our physical bodies. When every state in the union finally accepts Aid In Dying for all individuals, maybe, just maybe, our culture will finally allow death to take its rightful place as a significant part of 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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