Dear Reader:
If you have been following the progression of AZELO’s Seven Touches campaign, you know that it is based on the simple premise that the public, the news media, and many of our representatives in the Arizona Legislature don’t yet have a clear understanding of what medical aid in dying (MAID) is all about.
          So we are doing our best to enlighten and engage people in a discussion about the ever-expanding “Death with Dignity” movement launched in Oregon 23 years ago. Our strategy is simple: provide honest, straightforward information that helps de-mystify medical aid in dying and allows Arizonans to make up their own minds on the subject. But progress doesn’t come quickly or easily. Actually, it’s kind of David-and-Goliath thing; on one side is our all-volunteer, grassroots group -- on the other are professionally staffed, well-funded opponents who have raised to an art form the sowing of false narratives and misinformation.
            This is where you come in. Perhaps award-winning author Frank Sonnenberg says it best -- "Opinions held in secret never make a difference."
            Specifically, we need share your personal thoughts about MAID to make a positive difference in public awareness in our state. You are urged to join what we hope will become a small army of AZELO volunteers who understand the facts about medical aid in dying and are willing to publicly express their support for passage of a MAID law in Arizona.
           We are looking for individuals who are willing to write a brief letter to the editor (LTE) of their nearest Arizona newspaper. You don’t even need to be a subscriber. All you need is a few extra minutes and a sincere point of view. That’s it -- a short letter describing why you think terminally ill Arizonans deserve to have the right to end their life in a peaceful, humane, and dignified manner. And if you have a personal story to share, so much the better.
            Need a little help getting started? No problem. We have a small team of professional writers in place ready to provide as little or as much assistance as you need.
            Unsure about what facts to use? Again, no problem. We have loads of resource materials on hand to help you craft exactly the right message. And we look forward to working with you to draft an original, distinctive, and effective letter.
            Feeling ambitious? Maybe you’d like to take on the challenge of an in-depth op-ed piece. We can help with that as well. No matter how you choose to be involved, you can be sure you are helping create a new vision of self-directed end-of-life care.  For full details about this important initiative and how you can help, please refer to our comprehensive GUIDE to op-eds and letters to the editor. Then, as soon as you are ready to “raise your hand” and get started, please contact Sandy Wester (209-419-1893), or Stu Burge (623-882-6767). The first step is simply to let one of us us know that you have an interest in taking part and we will add your name to the master schedule for the campaign, which continues through next March.
            We hope you will choose to become part of this potentially history-making effort today,
Nancy Rhodes Johnson: I Want to Have the Choice
Me with my husband, Mark (at right) and stepchildren Hannah and Tom.  
                                                                                                               October, 2020
Dear Friends: 
          Cancer does not define me, but it dominates my life, nonetheless. 
          Before my body was overtaken by the pain that accompanies a debilitating terminal illness, I was a teacher, an athlete, and an artist. I painted 20-foot murals commissioned by the city of Syracuse, where I lived for 25 years. I was the first woman commissioned to paint a permanent mural dedicated to women in the military that is installed in a Federal building.
           (see Nancy's floor-to-ceiling mural below)
          I was an adjunct professor of art at a local college. My life was full and fulfilling. But then the pain began.
          It took years for me to receive an official diagnosis. I went from doctor to doctor, explaining my symptoms. I was brushed off as a hypochondriac by multiple doctors after I presented them with a comprehensive list of symptoms. More sympathetic doctors referred me to pain clinics, whose treatments failed to bring me sufficient relief. Nothing seemed to help.
          Finally, I decided to stand up for myself. In 2012, I asked my doctor to write me a referral for an MRI. The results showed I had cancer in both kidneys. I was devastated. The doctors decided to use cryoablation to remove the tumors. However, because the tumor was located just above an artery, they could not get all the cancer out.
          Over the next year, the pain became concentrated in my lower back. When I was hospitalized again, I was in so much pain I could barely get out of my hospital bed. My oncologist was concerned enough about the back pain that he ordered another MRI and a PET scan, which showed innumerable tumors in my bones, from my head to my toes. There were so many tumors clustered together it was nearly impossible to see my bones on the scan.
          I was diagnosed with metastatic terminal breast cancer that had spread to every bone in my body. My prognosis: anywhere from 15 months to 10 years.
          It’s been three years since I received my terminal diagnosis. Since then, I have lost most of my mobility. I use a motorized wheelchair to get around. I sleep in a hospital bed that rotates in multiple directions, which helps me turn around more easily but also reminds me of how I used to be able to move with ease. I manage my pain with medication prescribed to me by my doctor.
          I’m stable for now, but I have no idea when my condition could worsen. It feels like living in limbo.
          When I learned about death with dignity as an end-of-life option, the first thing I thought was, I want to have that choice. Should I find myself in even more unbearable pain than I’m experiencing currently, with a prognosis of a few months to live, I don’t see any reason to prolong my life a bit longer if it means I’ll be living in despair – and if it would bring my loved ones further distress.
          Unfortunately, my home state of Michigan does not have a death with dignity law. I want this to change. I will do everything that I can to advocate for passage of a law in my state. That includes sharing my story: with you, with newspapers, and with lawmakers, who have the power to make policy change. I invite you to share your story, too.
          I dream of spending my final days with peace of mind, with the people I love around me, who know I’m making what I feel is the best choice about my care. Medical aid in dying would make that possible.
          Join me in advocating for the right of all terminally ill people to decide how they die. 
Nancy Rhodes Johnson
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Arizona End-of-Life Options
October 27, 2020

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