Some of you have asked what I am doing towards maintaining my health.
After graduation I moved to Seattle and attended Northwest College for Medical Assistants. I worked at several hospitals and an alcohol rehabilitation center. I was accepted the first Emergency Medical Technicians that was open to women, and actively pursued becoming a firefighter. I also was active with the Feminist Karate Union. There I built my strength and endurance to be strong enough to become a firefighter. After a long legal battle we had won the right to simply take the test. That first year none of us could pass the physical test, possibly because the men taking the test had been practicing together at one of the firehouses for weeks before the test, but the following year women did pass. I am really proud to have played a role in this process.
I began exploring different way of thinking. How to Win Friends and Influence People by Dale Carnegie influenced me during this time. My Dad had the whole Dale Carnegie record set, a prize I listened to many
times. I was totally into the idea of influencing people. I practiced a “good strong handshake” with a smile and eye contact. Somehow I did not connect Carnegie’s ideas with New Thought, but did lead me into a
period of religious study. This exploration led me into a short period as a born-again Christian.
Possibly it was the fact if I attended the early morning campus life group they would pick us up, take us to a meeting with donuts and the take us all to school. I became a born-again sugary Christian for a very short time. But long enough to lead me to a New Year’s Eve retreat for all the different high school’s donut munchers.
It was during this time that I met my partner Chuck. Before boarding the bus to the retreat I heard a women’s voice say, this is the man you will marry and turned around to see who was talking and saw Chuck for the first time. We shared our first kiss on New Year’s Eve 1971.
The women in my family have a long history of knowing. When someone was ill or in trouble, and
in an age before “Caller ID”, they would know who was calling on the phone before answering, or they would call a friend or relative to find out what was wrong. This ability was simply explained to me as “the women’s thing”. This way of being has always been part of my life.
My mother and her sisters had this uncanny sense for knowing what was up. Because of this connection I was found out many times when in the middle of mischief. One time when skipping school to hang at the shopping center (this was pre-mall days) I was crammed into a phone booth with a boy making out. Although the boys name escapes me, I have a clear memory of my aunt walking right up to the booth and opening the door. Busted. Or the time I was "entertaining" while my parents were out of town when my other aunt pulled into the driveway and stormed in, up the stairs and directly into my parents bedroom where my friend and her boyfriend where clutching sheets around them. Major busted.
My own daughters have great stories of me leaping out of a drugged stupor (I had just returned home that day from a surgery), yelling for Chuck to check on our daughter, who was at that moment dressed and sneaking out her bedroom window. Our youngest daughter seemed to be able to get away with things in a way our oldest could not. She later told me that she had discovered a way to keep clairvoyant mothers and aunties from tuning in. She would repeat "mashed potatoes, mashed potatoes" in her mind and I was oblivious.
I was born in Olympia, Washington. My father worked at Mills& Mills Funeral Home in downtown Olympia and
my family lived in an apartment upstairs. My grandparents also lived above Mountain View Funeral Home in
Lakewood. I spent many hours playing in the around the funeral home in Lakewood and my grandparent’s home above the funeral home. There was a long list of off limits areas in the funeral home; the casket sales room (did you know that caskets are only lined with the pretty material in the top half of the coffin? Apparently no one has complained), the slumber rooms where dead people were laid out for private viewings (of course I snuck into empty and occupied rooms) and a greenhouse that had one particular plant that was my favorite, Devils Club. I loved the idea that these “Devil’s Clubs” growing so close to the dead, possibly increasing the chance that someone would be mistakenly dragged to hell, something I did not want to miss.
Our family was Catholic and I spent first and second grade in Catholic school. My father would
drop me off early so I could attend mass before school. Looking back I am sure it was an opportunity for before-school care, but I enjoyed mass very much. Very few people attend the early mass, just a few students and the nuns. Some children collected baseball cards; I collected holy cards given to me by the nuns at those early masses. I have a deep love of ritual and art as spiritual inspiration that are influenced by my experiences during this time. Although none of my cards survived my early agnostic years I have begun a new holy card collection, I love really old holy cards, and I am always on the search for cards of women saints, St. Lucy,
patron saint of eyes, is shown with St. Lucy with her glaring empty eye sockets offering her eyes on a silver tray. Now we are talking a holy card worth collecting.
Welcome to my blog. Here I will write about all things Cathy. Through thick and, okay thicker, I will lead you through all kinds of metaphysical adventures, bizarre experiences and the on going journey of staying in body as long as possible with a neurodegenerative disease folding brain proteins into misfit origami.
As I write this a protein in my brain has begun to fold itself into shapes that don’t belong there, a kind of degenerative origami that was slow at first, then gaining speed as this creative folding blocks pathways that
send vital information to my autonomic nervous system. This system automatically has controlled all those things that you hope your body will remember on its own to do. As that communication is lost my blood pressure has begun to fluctuate. At risk next are breathing, swallowing, digestion, a few things that are pretty
So of course I get a disease that is pretty invisible. No chemo, no ribbon proclaiming my fight against the disease. Nope, I get an orphan disease, so rare that the organization that raises money and puts
on a yearly conference is called CUREPSP and also a couple of other illnesses. Mine is one of the
“other” diseases. I am told that getting an actual diagnosis of Multiple Systems Atrophy happens late in the
progression of the disease. Two or three years into it the symptoms began to get bad enough that I had run through a list of specialists. When my symptoms actually started and where I am on the d march of symptoms we can only guess. For how long the origami has been at work in my brain is just a guess.
The first clue I had was about four years ago when I began fainting when I stood up. We called it the
“Fainting Goat Syndrome”, funny then.
The kind doctor assured me on my first visit that I did not have Parkinson’s. Well, thank God for that. That would be terrible, I say, thinking that a disease would be the worst thing, all that shaking. Parkinson’s actually has drugs that help and a longer life expectancy than MSA. Maybe shaking is not the worse after all.
So I tell my family and friends I have a neurological degenerative disease that only gets worse from here, in fact quickly worse, with a very short life expectancy. The normal course of this disease is an increase in symptoms, wheelchair bound, diapers, not being able to swallow, ending in tracheotomies and feeding tubes. Like I will actually agree to die on schedule. That is not my style at all.
My plan is to take advantage of Washington State’s death with dignity law, have my family with me and sip the cocktail that will end the course of the disease. I can say that today. Today I played with my grandchildren, read them stories, kissed them goodnight. I spent time with my daughters and cuddled with my husband of 40
years. I can say that making the choice to end my life from where I sit sounds brave and clear, but I have no
idea what I will feel as the time is closer. One year, two maybe, no one can say, each case is so individual.
I have made a list of the course my origami brain could take, figuring out strategies for each one before it get too bad for me to say what I want. Sing, to go to Hawaii, to Colorado, to California, to write another book, to draw every day, paint every week, to write until every word has been put down on paper.
Life has become very focused and more than anything I feel fragile. I know everyone wants to suggest that one thing that will cure me, one doctor that is the right one, whatever bits of hope they can offer. I know what my body wants right now, what my mind wants, and that is to rest, be with my family and allow my own best healing to unfold the origami and straighten out those proteins.
My private goal, my inside connected spirit place, knows deep healing has always been mine. This is no exception.
Give me a year and we will see.
Welcome to my blog. Here I will write about all things Cathy.