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For my patients who have used this law, I was honored that I could be with them every step of the way, ensuring that they were cared for, and that they had control of the final days of their lives. That’s what death with dignity really means. – Nicholas Gideonse, MD 

When I was a child, I grew up on a natural lake. I was probably in the water eight hours a day. My family called me a fish. As I got older I learned to waterski– two skis, then one, or slalomming. I was on the swim team in elementary school, delegated to the 500-yard freestyle, because I was the one with the physical endurance to swim 5 laps, straight. During the summer I rode my horse, daily. In high school, I was in the snow ski club. And, in graduate school in New Orleans, I rode horses and ran road races in the scalding heat of the Louisiana summers. Needless to say, I was always physically active and athletic.

Running was the first ability I lost. I was 47 years old, with two children, a horse farm, and a psychotherapy practice. Within three years, I could no longer ride my horse and I started tripping and dragging my right foot. While carrying my computer, I fell on the wood floor and broke my patella in half, which led me to a walker. Although I dreaded using a walking aid, I was glad for the safety it provided. That was, until I fell on my walker and cracked my sternum.

With a cracked sternum, standing, sitting, any movement was excruciating. I’d bruised ribs in the past, but nothing like a sternum crack which required assistance for any movement. I was losing my autonomy. Around this time, I began having “accidents,” incontinence particularly disturbed my husband. This affected my dignity.

After failing to engage the brakes in my car quickly enough and finally stopping in the middle of a busy street, I realized that I would never drive another car and risk endangering a life. I was losing my independence. I was still able to drive the golf cart on the farm, which gave me  some sense of autonomy, but all of the chores were left to my husband, which was not our agreement when we purchased a labor-intensive horse farm.

My husband was becoming more and more irritable and resentful. Burdening loved ones is another huge fear to an active person becoming disabled. Each of these losses could lead to major depression, but having been a therapist or in therapy much of my life, I have the internal resources to deal with these stressors. Fortunately, I was not financially dependent on my husband or the government. I cannot imagine the level of suffering people encounter, when terminally ill, who are less resourced than I, either internally or externally.

After cracking my sternum, I was almost relieved to sit in a chair where I was safe from excruciating injuries. “You don’t get the small stuff,” exclaimed the doctor who read my patella x-ray. So, sit in the wheelchair, I did.

Probably the two worst symptoms of progressive multiple sclerosis are heat intolerance and intractable fatigue. I used to call it “crying fatigue,” because all I could imagine doing was to lay on the floor and cry. It was not grief or sadness that led to crying, but intense exasperation, with no emotion attached. Only someone with chronic or terminal illness can understand this level of pain and suffering.

After Katrina, when we had no air-conditioning for a month, in the heat of the Louisiana summer. I remember stumbling to my car with my walker, turning the engine on, sitting in the air-conditioning and crying. I knew I could no longer live in this state of Louisiana that I loved, that the heat and the hurricanes were more than I could bear. I no longer had the endurance of the 500-yard freestyler or the independence to care for myself with a partner who was beginning to resent me more each day. We would move to Colorado. I thought that would solve many problems, but little did I know my life was about to, once again, change forever.

On the way to Colorado, a wheelchair accident resulted in my femur being shattered, the largest bone in the body. It was shattered so badly, that the surgeon had to scrape the pieces together, to screw the stainless steel plate to something. This is where my book Meet Me By the River – A Women’s Healing Journey begins and chronicles my life from devastation to deep gratitude and joy. (Shameless plug.) From the hospital, I was discharged to our new home in Colorado. Six months later, my husband/partner of 11 years left and I, reluctantly and not very gracefully, was to learn how to live alone with this degenerative, neurological illness. Fortunately, I had the financial resources to not be a burden on my family for at least a decade.

Many people facing terminal illness embrace a spiritual life for the first time. Even if they were religious, their beliefs take on greater meaning, much like a spiritual initiation.

I began to see these physical limitations as directed by a higher power. I no longer saw them as punishment or some failing on my part; I saw the Universe as loving and I saw how my ability to impact myself and others was much more effective in this condition. The healing in myself and others was profound. I began to love this illness and see it as a course correction that was leading me to my highest purpose in life. The joy I experienced was infectious. The help I could provide to others was more than I’d ever imagined, with an able body.

As the illness progressed, I began to assess the level of suffering I was experiencing. At some point I knew that my suffering would no longer be a positive catalyst; the suffering would be needless. This pivotal point is different for everyone, depending on their capacity to process the pain and suffering, their level of development, and the Mystery beyond our limited knowing.

In November, the Aid-in-Dying law became legal in Colorado. The most common reasons people choose Aid-in-Dying are loss of autonomy, becoming a burden on one’s family, loss of independence, financial concerns, loss of control of bodily function, fear of uncontrollable pain, loss of ability to participate in pleasurable activities, and loss of dignity. (I highlighted some of the issues that cause me the most suffering in red.) This law is well-crafted to protect the vulnerable from abuse: one must be in the process of dying, be of sound mind, be able to self-administer, and no other person can benefit from this choice.

Opponents of this law often use the word suicide to incite people, emotionally, in my opinion. I have assessed suicidality for 30 years as a psychotherapist. When suicidal, a person wants to die. I have talked many a person “off the ledge.” It is an insult and a misnomer to ascribe suicidality to a person in the sacred dying process, who is finally able to surrender and let go. What a harmful imprint this could leave for the family to carry. Words have power.

All of this being said, my first choice would be to die naturally. Unfortunately, people never die from MS, they die from “complications from multiple sclerosis.” The complications can be: sepsis from pressure sores, choking to death which has to involve a beloved caregiver trying so hard to keep me alive, drowning in my own fluids from pneumonia, or some other horror I don’t yet know about. The best option I could hope for would be failing to thrive, or starving to death, slowly. Keep this in mind when considering choice.

Societies that rule with a more parental, autocratic style usurp one’s sovereignty for making choices for themselves and their bodies, which includes how they might want to leave this beautiful world. These regimes characteristically manifest a disregard for women’s rights, or a disrespect of the Feminine. (I use “the Feminine” as a term applicable to either gender: having more of a tendency toward vulnerability, empathy, and sensitivity. These are values that have been punished for nearly 5000 years.) Hopefully, we are integrating more feminine values moving toward a kinder, less violent world.

In the meantime, if I begin to feel complete with this lifetime and ready to let go and serve my loved ones from Spirit, do not conflate this sacred decision with suicide. This is not suicide. I do not want to die. My life has always been about service and learning to connect more deeply in Love, I know myself and I know this intimacy and animation will continue, and, most likely, express itself in a much deeper Way.

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“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.

“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.

“Even when you think you have your life all mapped out, things happen that shape your destiny in ways you might never have imagined.” -Deepak Chopra

HeavenYesterday, an opinion commentary I submitted to the Denver Post was rejected. His words were, “Thank you for your submission. We’re going to pass on this one.” That’s it. No other comment. I suspect this is a reflection of the management’s view. I’m slightly exasperated that opposing views would not be presented for people to make their own informed decisions about laws that affect us.

This brings up a greater issue I tried to avoid addressing in my last blog essay, but I cannot avoid it any longer. For many in our culture, accepting death is taboo. Perhaps it is considered a failure in a culture where might is idealized and vulnerability considered weakness. In order to understand that the opposite is actually true, a paradigm shift needs to occur, culturally. As each person awakens to the truth that death is a natural part of life, ideologies will change. War and destruction of the planet will be incomprehensible. Everybody does not have to shift their consciousness, merely reaching a critical mass will be sufficient.

What is holding this revolution back is fear. Perhaps this fear is caused by wanting to avoid the grief of losing a loved one. Perhaps it is the fear of facing one’s own mortality, letting go of the personality into the numinous. Being in my situation, I can clearly see that this fear keeps people from understanding the continuity and interconnectedness of the soul. Courage is what nearly everyone will have to summon when they are in the dying process. Kathleen Singh wrote a brilliant book titled Grace In Dying where she described the stage of panic and despair being just prior to the stage of transcendence. What keeps people from understanding the continuity of the soul, I believe, is a lack of courage, or cowardice. Wikipedia’s definition:

Cowardice is a trait wherein fear and excess self-concern override doing or saying what is right, good and of help to others or oneself in a time of need—it is the opposite of courage. As a label, “cowardice” indicates a failure of character in the face of a challenge.

My commentary was a rebuttal of the now minority held belief that people should not have the right to choose when to end their pain and suffering when they are in the dying process. The anti-right to choose group Not Dead Yet’s perspective was presented in a previous commentary. I presented point by point a rebuttal. Obviously, the Denver Post is biased.

I recently interacted with some state representatives and state senators in a respectful and interactive way. Personally, I am not near the need to consider these choices mentally, emotionally or spiritually, but physically I am extremely vulnerable. If faced with this choice, I’m not sure what I would choose for myself. Everybody has different thresholds for what they can bear. If I got pneumonia again, that would be my threshold. I’m not interested in drowning to death in my own fluids. That would be my moment to call in hospice for palliative care and to hasten my final transition. Having the option to lessen needless suffering for myself and my family would give me great comfort.

What I truly believe is what Rabindranath Tagor succinctly said: “Death is not extinguishing the light; it is putting out the lantern because the dawn has come.”

When the majority of our culture accepts this, there will be much less violence and suffering in the world, much more peace and compassion. Making peace with our final passage can happen at any time in our living or dying process. After all, we are all merely returning Home.