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“We never face death unless death unequivocally faces us.” -Christine Longacre

Freedom three

As many of my friends and readers know about me, power has been a significant, rigorous teacher in my life. I believe we are here to work on a particular life lesson or lessons during our lifetimes. For me, the struggle between trusting my own power and abdicating my power has been a recurring theme that shaped my sense of self and ultimately formed my emotional and spiritual well-being. Ignoring these teachings had catastrophic effects on my psyche which led to profound anxiety and depression. Much like playing the childhood game with my brother, “You’re getting warmer, you’re getting colder…” the symptoms shaped a more powerful me. Eventually, abdicating my power began to manifest very subtly in my physical body, where I could no longer ignore it.

Perhaps the source of this illness is arbitrary and abdication of power is not the pernicious cause I suspect, but, regardless, I am in the end-stage of a degenerative, neurological illness which has rendered me unable to move any muscle below my neck. Eating meals results in choking and aspirating which indicates the need for a feeding tube, or gastrostomy if one is to prolong life.

My first professional job was to set up a social service program in a children’s home for profoundly disabled children, facing the end of their lives. These children were given blended foods forced directly into their stomachs with a syringe. They could not taste the foods and also could not object. These were the choices of the medical establishment made in concert with the families in the 70s. I have chosen to not have a feeding tube. There is no right or wrong. In my opinion, the power to choose is not just a right, but necessary for the liberation of my soul. Autonomy has always been important to me; I found my power and my voice by exercising my own right to make my own choices.

Another potentially life-threatening symptom is weakness of my core muscles, resulting in shallow breathing and accelerated heart rate. I choose to live at 8000 feet altitude, despite the breathing difficulties. Again, my choice. It may not be the choice of others, but we live in a pluralistic society of diversity. It is important for me to honor other people’s choices as well as my own. Elimination is another bodily function I cannot perform on my own. Other people’s choices may include a colostomy. I choose to draw a line where others might make other choices for themselves. Isn’t that everybody is right?

My hometown is aesthetically beautiful and offers a caring, intimate community that will accommodate my specific needs, being housebound and bedridden. As a psychotherapist, my love of group dynamics can manifest in this caring, progressive community. I participate in or lead nine groups per month from my chair I call “command central.” Quality of life is more important to me than quantity. My family understands this about me and they are supportive. Ironically, when I was a competitive athlete with many blue ribbons, I never felt as powerful as I do now despite being unable to move a muscle.

A wave of options is moving through the country, state by state. In Colorado it is called the Colorado End-of-life Options Act which has been sensitively and thoughtfully crafted. Organizations that oppose this movement consider these options to be assisted suicide. In suicide, the person wants to die. Assisted suicide is illegal and will continue to be illegal. In my profession, I “talked people off the ledge,” which I was extremely successful doing; you just had to show them some hope. With a terminal illness, people want to live, but death is imminent. In order to qualify, the bill requires two different physicians to assess that the individual will likely die within six months. There is a fear that coercion could be a concern. If one physician suspects coercion or an inability for the person to make an informed decision for themselves, a referral is made to a licensed mental health professional for counseling. In my opinion, patients vulnerable to coercion by family members will unfortunately have that dynamic regardless of the increased options available. A hospice or care team, led by the physician should know the patient well enough to provide the necessary protocols to support the individual and family at this vulnerable time. The end-of-life option is for the purpose of lessening pain and suffering at the end of one’s life by prolonged, ineffective Herculean medical efforts.

I have seen families devastated and overwhelmed by the pressure to prolong their loved one’s life, but instead end up prolonging their pain and suffering which, in fact, diminishes their quality of life. These families have been devastated by the unnecessary medical treatments, literally torturing their loved ones while they take their last breaths in agony. I do not choose this for myself, my family or my loved ones.

From what I understand about the trajectory of my illness, my life will end with either suffocation from choking, sepsis from pressure sores or pneumonia. I have executed a DNR that precludes hospitalization for these circumstances, however each will involve tremendous suffering for myself or loved one. The Colorado End of life Options Act would provide comfort and empowerment during my final transition. No one is required to use this option, but everyone deserves the right. Support our politicians to vote yes on HB 16 – 024 and SB 16 – 1054 and let our last breath be  taken with love and peace.

 

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“Never doubt the softness of this Love’s strength to pass through any obstacle…” -Kathryn Brady

8a660b37da8f23013bbaa08422973223Recently, I texted my brother, letting him know I had an injury. Being 2000 miles away, I believe it is important to keep in touch with my loved ones. This illness renders my physical existence precarious to say the least. One injury, one errant bug could easily take me out. I would rather they not be surprised.

When I told him about the injury, I added our predictable Jaffe humor, “you cannot keep a good woman down, especially a descendent of Beatrice.” My mother, Beatrice, was a complicated woman, born in the Bronx in 1924 to a family with immigrant parents and all male siblings. Her relationship with her mother was not very strong from what I have heard. My mother had been a tomboy. I remember seeing a photograph of her as a small child with a broken arm after she had fallen out of a window in the Bronx. I probably had more in common with this young girl than I ever realized and I am realizing it more and more as I am maturing and that it is not a detriment.

My relationship with my mother was extremely conflicted. Perhaps she was less comfortable with girls and women than boys and men. I remember overhearing her when I was young saying she cared for her daughter, but her sons, she adored. I remember not being devastated by hearing this, but feeling affirmed, because I already knew this. My mother was not subtle, you pretty much knew where you stood with her.

In all fairness, the package I represented to her was challenging to say the least. I was an emotional, overly-sensitive, dependent child with more demands than my mother could meet at thirty years old with three children and a marriage that overwhelmed her. My mother was the glue of the family, the liaison who brought all of the factions in her family together. My mother was loved in the family and the community.

The older I get, the closer I feel to my mother and I believe she feels the same way. The greatest gift I ever gave her was a daughter. When Casey was born by cesarean section, I was awake during surgery, but given a general anesthetic afterword. I’m sure I infected the anesthesiologist with my fears. That is the only way I can understand the circumstances. Being out of it, Casey was placed in an incubator for two days. When I found this out, I immediately sent for my mother. She was running errands when she got my message, packed her bag, left a note for my father and ran to the airport. This effort set the scene for a relationship with her granddaughter that brought deep redemption to her life. She was able to do for Casey, what she could never have done for me. I am tremendously grateful for this relationship, of which I was a mere bystander.

At a certain point in my emotional and spiritual development, I realized that on a soul level I must have chosen my mother. The thought was particularly difficult to grapple with, but being a believer in the process, I reflected on. Over the next few years, it started to occur to me that one of my mother’s greatest strengths was that she was incredibly strong in a forceful and effective sense. Recognizing that power is a central issue in my development, it made perfect sense that I chose her to model this. She was not a nurturing mother and I also recognize the curriculum of opposites. When a soul is wanting to learn self-love, they often choose parents who are incapable of providing this quality externally, so the person needs to find it internally.

After years of resenting my mother for not being who I wanted her to be, I can finally love her for who she is/was. In that way, she can be much more of who she truly is, for which I am tremendously grateful.

I find that as I become more me, she is becoming more her; after sixty years I can finally in my heart let her become Beatrice.

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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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