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
