“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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