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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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“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” –Christopher ReeveI&Cr  

I met Christie in 2003, the same year I was diagnosed with progressive multiple sclerosis. Our interracial gospel choir was performing at an educational venue in New Orleans, when after the singing we broke up into small groups with the audience and spoke about racial issues and how they affected our lives. Christie was a delicate beauty as she spoke about her parents having been activists during the civil rights movement during the 60s. She felt particularly drawn to the mission of our choir.

Each person in the breakout session added more facets to a subject wrought with passion and heart breaks, bringing a sense of solidarity and mission. Christie admitted she liked to sing and would love to be a part of the choir, but she obviously held back. When I encouraged her, she disclosed that she had been in treatment for ovarian cancer for quite some time. This is a cancer that remains hidden and undetectable until it’s too late, the elusive killer. It seemed almost unimaginable that this vibrant, passionate young woman with her life in front of her could be undergoing an unseen struggle just to stay alive.

Christie clearly wanted to join the choir and when I told her of my recent diagnosis of multiple sclerosis, it seemed like more of a possibility to her. It was decided that she would come to rehearsal one Thursday evening at Loyola University to check out the possibility. Christie was met with great enthusiasm and welcomed into our impassioned singing group with a mission.

One of our CDs is dedicated to Christie who sang with us and lost her battle a couple years later. When Christie came to my farm to prepare for our performance at the St. Louis Cathedral, she acknowledged that she had been at my farm before. I didn’t consciously recognize her, but she and her boyfriend purchased cabinets from me a few years before. There was much Christie and I shared that evening in our discussion group that would unfold as crescendos and decrescendos during our truncated lives; truncated in quantity, perhaps, but long in quality.

Christie and I shared a passion for music, social justice and we were BOTH confronting catastrophic illness. When embarking on a journey involving life-threatening illness, we face our greatest fear, that of our mortality. I don’t know if anybody is ever ready for this ordeal, but it offers a particular challenge this early in life. One no longer has the luxury of being immobilized by the fear; illness requires that one’s values are assessed, which then requires action. Healing modalities will need to be strategized along with loved one’s input. By facing this Call, courage is the likely end product.

The connection between Christie and myself was instantaneous, like looking into a mirror. I felt her fragility and was able to reassure her that she could do it; she could join our choir and sing in solidarity. Christie was a fellow heroine.

Illness happens for many reasons in one’s life. It can be a catalyst to move forward, if one has been holding back. There can be agreements made on a soul level to move the individual and the soul family forward in their development. Making assumptions based on one’s own limited perspective as to why a person is ill can be very reductive for the person experiencing the illness or injury.

For people who knew Christie, she changed people’s lives for the better. The world is a better place because she and her family are/were in it. She is no longer in her body, but she still is. Almost 10 years later, she still lives in my heart, and for that I wanted to Honor her.