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.