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There is a crack in everything. That’s how the light gets in. – Leonard Cohen

Throughout this journey of chronic illness, I rarely speak of the nearly unbearable grief I’ve experienced, as my body slowly failed over many years, and progressed rapidly over the last decade. I almost exclusively describe the gifts I’ve received by facing the challenges with determination and courage, not so much, the heartbreak.

My children were three and nine when the symptoms began. I remember driving my son to elementary school and praying that I would be able to meet his and his sister’s needs through high school, while my children were completely dependent on me (and I, probably, on them). Who would drive them to school, accompany them to soccer games, dance performances, and Mardi Gras parades? Who would talk to the teachers when they had conferences in school or problems with their friends? How would I be able to go to therapy three times a week to heal myself emotionally to better meet their growing needs? My life had become totally unpredictable and everything was on the table for catastrophic change.

When the first symptom began during the late 80s, my first thought was for my children. What kind of legacy would this leave  them? The terror I felt about not living up to my greatest responsibility and privilege was more than I could bear, or so I thought at the time. I’m sure the specter of desperation followed me and shaded every choice I made during my 40s and 50s. Not all of my choices were well thought out and generous. After all, I was losing my physical strength that had carried me through many challenges – if I could count on anything, I could count on my body – and my body had been the vehicle for much reliability and joy in my life.

I began running road races with my daughter when she was three during the heat of New Orleans summers, I swam laps for miles and miles to restore some semblance of well-being and hope for the future. I believed if I could heal, it would be in the water. This does not describe the radical lifestyle changes I made or trips to India for stem cell treatment and many other alternative treatments.

When I see the look of shock and despair on people’s faces when they meet me, see my profound physical limitations, or hear my story, my common line is, “My life is not a tragedy.” Well, it isn’t, but it has been marked with many tears, regrets, and feelings of despair along the way.

My hospice workers tell me I am a legend around their office, my friends tell me I am a hero. Well, I’m here to tell you I have made desperate choices in my life that have deleteriously affected my children, I have lived with a great deal of fear, depression, and cowardice. I’ve cried an ocean of tears. No one facing catastrophic illness or injury should ever feel reticent about expressing their grief. It is through the cracks where the light gets in.

I have grown through this illness. I probably have grown some heroism. I am also human with human frailties. Human nature is an incredible thing. If I can do this, anybody can do this. About that, I have no doubt.

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I ain’t afraid to love a man. I ain’t afraid to shoot him either. – Annie Oakley

We are the authors of our lives. We write our own daring endings. We craft love from heartbreak, compassion from shame, grace from disappointment, courage from failure. – Brene Brown, PhD

What a gift human life is with all its challenges and opportunities for liberation through adversity; as a snake needs a rock to rub against to remove the old skin, humans need ordeals to evolve. It is through adversity that humanity acquirers empathy, increasing its capacity for love. This is one of humanity’s deepest teachings. Love is. Anything in the way of that knowing is, I believe, what we are here to learn from and transform, to turn lead into gold, poison into medicine.

Living a human life is not for the faint of heart. If we dig deeply enough, most of us live with an insidious amount of unworthiness, or shame, imprinted during childhood whether this imprint is conscious or not to our adult selves. In my opinion, one of our greatest accomplishments during our lifetime is to chip away at this shame – the belief that in our core we do not matter or are in some way deeply flawed, that if someone gets close enough, this secret will be revealed. Often this imprint gets projected outwardly as a defense against feeling the unworthiness that dwells in our beliefs about ourselves, the unknown hitchhikers in our individual personas that wreak havoc in our personal lives. With such a belief operating in our core, intimacy, with ourselves and others, can become difficult to allow. It is through intimate relationships that healing takes an accelerated path and poison can become medicine.

Our most unlikely, yet beneficial, allies during our lifetimes are the ones who, often unknowingly, take us into that core, the faulty foundation where untruths mold our beliefs just waiting to be transformed. Of course, we don’t see these messengers as great teachers at first, but over time as we develop the capacity for self-reflection and often through grueling repetition we begin to experience a level of liberation. In my experience, it is only when I am able to feel the shame completely, without turning away, that self-love is restored. This ability may be unreachable for some people, but I believe this is the hope for humanity.

My husbands have been the Trojan horses that provided the grit necessary to take me into the deep, recurring, faulty beliefs that caused me tremendous suffering. They exposed these beliefs often unconsciously and sometimes with cruelty. Learning to not shoot the messenger was key to taking responsibility for my childhood imprints and finding liberation. Often we can become distracted by trying to derail the messenger, in an attempt to invalidate the message, propagating an illusion that we can somehow avoid feeling the shame. Developing the capacity to sit with the pain of “not enough,” is the only way to release its hold over us. To do so requires practice, increasing empathy toward the self, and not taking what seems to be criticism from others, personally.

To look at these messengers with equanimity, we realize they are doing us a great service. I believe the messengers can become more harsh if we resist the greater teachings. This is not to be confused with being victimized by another’s unskillful projections. Discernment is necessary to courageously unwrap the projections and determine what is the grain of truth that is useful for one’s liberation. Multiple marriages can be seen in this culture as a failure, but people are changing quickly and one cannot determine what others might require. Each of my three marriages has been like a different incarnation, one building upon the previous. What ever brings awareness is exactly what is needed by the determined soul. After all, you cannot heal what you do not acknowledge. By my second marriage, seeing the repetitive patterns, I understood that I was the common denominator. Once aware of the pattern, I could choose – shame or self-love.

I have had communications in the last months with all three previous husbands to varying degrees of connectedness. My first husband I call my greatest teacher, because he was creative, intelligent, and brutal in his younger years. In my 30s and while in therapy, it had become apparent that I had embraced a level of victim mentality. With his help and my courage, determination, and a lot of therapy I was able to release myself from the grips of this insidious form of self-hatred. Not everyone needs this level of intervention, but I had been a willful child and not able to change, otherwise. An identity of victim is one of the most excruciating forms shame can take. When embraced with empathy, this pattern can be transformed to self-love. Recently, my daughter asked me to contact her father, my first husband. Over the years, I have forgiven his hurtful behavior and begun to see him as soul family, someone who had agreed to provide this ordeal out of love, to bring us forward in our evolution. I know, this is a generous shift in beliefs, but if one could choose our perceptions, why would anyone choose otherwise? Because of this shift in my perception, he was able to tell me that he loved me, he had always loved me, and he will always love me. Intuitively, I knew this, but the medicine this acknowledgment brought to myself and my daughter was immeasurable.

Shame is an insidious poison that can rob us of our birthright to feel loved and loving in a Universe where Love is the only Truth.

“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.