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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.
Many years ago, a close friend who was a hospice social worker asked me to cover her hospice clients while she was out of town. I told her, “I don’t do death.” She then taught me something that was way beyond my 40 years. “Hospice is not about death, it is about life.” Because I had been experiencing subtle neurological symptoms for years and I feared a degenerative, life-threatening illness building in my body, this concept peaked my curiosity as it assaulted my logic. How could dying be about living? Almost like a Zen koan that evokes enlightenment by showing the inadequacy of the logical mind, I had the next two decades to contemplate this paradox, because two weeks ago I became a client of Hospice del Valle in Alamosa.
When I was considering entering hospice, I received desperate messages from friends around the country who had heard I was actively dying. After all, I must be actively dying if I was in hospice. This is one of the major misconceptions hospice workers encounter. Families usually consider hospice only in the last days or weeks of a person’s chronic or terminal illness, which, in my opinion, does a disservice to the patient and greatly limits the level of care available through the organization. The main purpose of hospice is to provide palliation to chronically, terminally, or seriously ill patients (not expected to live more than six months), which includes attending to their medical, psychological, and spiritual well-being and those of their families.
Living in a culture that is death-phobic, no one wants to mention the H word to a person who still has some life in them. What if hospice involved helping to reduce the suffering of persons deemed terminally ill, but still living for many months? The illness I have been living with is a slow, degenerative illness that has only affected me from the neck down. The effects have been devastating, but from the neck up I have been able to maintain a quality of life that is different, but regenerative in nature. Having been a psychotherapist for thirty years, my work has become more selective but much deeper, given my spiritual growth directly informed by what I consider my “spiritual curriculum.”
I had considered hospice for the last year, but since I was not actively dying, I did not consider it seriously. My most experienced caregiver who had worked ten years in a hospice told me that about 10% of her hospice clients lived an average of two years. Working through the necessary emotional stages, I engaged the closest hospice serving Crestone. To my surprise and tremendous relief, I have received care on every level I could imagine—physical, mental, psychological, and spiritual. They are an interdisciplinary team: MD, RN, CNAs, chaplain, and Family Support liaison. Whereas in home health, improvement needed to be noted, with hospice I could let go and receive care on all levels. This is supporting my dreamtime, depth of meditation, and, I believe, allowing me to begin a conscious death with open communication to my Guides on the other side. Intuitively, I have been able to let go and begin my journey through the Bardos.
I imagine that choosing to work in hospice naturally screens out individuals who are not comfortable “doing death.” My experience with each professional is that their level of skill, compassion, and care have surpassed my high expectations. I now know what my friend was saying; hospice has been about improving my quality of life, even though I can die within days. I can also live months and perhaps a year or so. That was never a possibility before I engaged hospice. I am a natural strategizer or I would never have been able to live alone while quadriplegic, but their expertise has taken this to a new level.
I will likely see 2017, but perhaps I might see 2018! With the help of my care team and now hospice, I can continue to lead my psychotherapy group on Skype, share my growing wisdom gained from living in stillness, and perhaps I’ll live to write another book!
Although the world is full of suffering, it is also full of the overcoming of it. – Helen Keller
I have been practicing Marshall Rosenberg’s seminal work on nonviolent communication for over nine years. Recently, I have been remembering his statement that every communication is an expression of either “Please” or “Thank you.” No matter how skillfully or un-skillfully the communication is delivered, all communications are either requesting something one needs or expressing gratitude. We don’t always get what we want or need from people, but we can always choose a response that is more conscious. A more conscious response will move the conversation closer to love and forgiveness; forgiveness of other, and more importantly, forgiveness of self. A less conscious, more impulsive reaction would likely keep the expression of pain going. It requires much skill to interact consciously with other human beings; I believe that is why we are here, learning with and from each other.
It is essential that we understand the feelings we are experiencing during conflict and that we understand the unmet need triggering the feeling. Identifying our feelings can take much spiritual maturity, because allowing oneself to be vulnerable during conflict is like what Stephen Levine calls, “opening your heart in hell.” Once one is feeling and need literate, conflict is easily reconciled. Here are some common examples:
Wife – You are always working, it’s like I’m a single woman in a marriage!
This is an expression of please. This is where the real work begins. The wife might only feel anger, but sadness or grief is always under anger. She might not even realize she is sad and missing her connection with her partner. In our culture, acknowledging our vulnerabilities is grossly undervalued, perpetuating an illusion that we are self-sufficient islands. Allowing one’s vulnerability, in my opinion, is how we can achieve world peace, one person at a time. At the core of this existential shift is the ability to find empathy for the self. To me, this is the prerequisite and the gift that neutralizes conflict and increases love of self and others. Once empathy is achieved, there is more self-reflection, and her communication might be, “My need for connection with you is not being met and I’m really sad about it. Would you manage your time so you can spend more time with me and the children? With practice, one can move more swiftly to vulnerability and affirming one’s love for the other can render more love.
Husband – I cannot do enough for you. All you do is nag nag nag.
This is an expression of please. It is important to hear beyond the pain. What he may be unable to express if he is not feeling literate is, “I feel so much pressure to provide financially, emotionally, and physically. I feel like I’m dying on the vine. I need some help here.”
The most difficult work is identifying the feelings and needs. Cultivating empathy for one’s self, leads to empathy for the other and will ultimately lead to feeling less isolated. This is the power of duality, or interacting intimately with others; the power of community.
Once self-empathy becomes natural, one can respond to these please requests with gratitude, rather than the automatic reaction of withdrawal or acting out our pain. Whether the communication is skillful or not, we can feel gratitude, because the other person is willing to express their unmet needs. Moving out of one’s own pain through self-empathy allows one to hear the other’s pain. Here is where love and connection can be restored and please can become thank you.
Recently, I reached out to a significant person in my life who has been disconnected from me, disconnected from my heart. As I move toward the end of my life, I know this is not truth. I reached out asking if we could reconnect. (Please.) I was met with a very cold, defensive response. I knew that we were not both in the place of reconciliation and I needed to honor that. In the past, I might have pushed for my needs to get met and it would not have ended well. I recognized the opportunity to honor where the other person was and more importantly, not to sacrifice my own well-being, knowing how open and vulnerable I am in my life right now. My reply was merely, Thank you.
And I meant those words, completely. “Thank you” to her for letting me know where she was. And, “thank you” to me for letting go, for having the wisdom to know that because we are disconnected on the physical plane, in another vibration where love is the only truth, we are connected forever.
All statements express please or thank you. Vulnerability is the key to open communication and inevitably leads to empathy. Empathy is the balm that changes poison (pain) to medicine (intimacy). You cannot give to others with an empty internal reservoir of love. This reservoir needs to be attended to constantly and consistently. This is the basis of most spiritual practices and the hope of heart-centered psychotherapy.
Marshall’s books can be purchased on Amazon, found in many libraries and YouTube videos are available online at no charge.
World peace can be achieved, one person at a time.