Musical Chairs

hand-painted upholstery fabric, wool flannel, 1984

hand-painted upholstery fabric, wool flannel, 1984

During my recent trip to Colorado, I was diagnosed with late stage LYMES DISEASE.

I’ll write more about this later but it was a bit of a thing to wrap my arms around.

After some musing about this new development, I have a few thoughts:

Multiple Sclerosis seems really to be a ‘catch-all’ diagnosis for a bunch of chronic neurological expressions that fall into similar groups; lesions discovered on the brain and spinal cord, either progressive or episodic spasms, weakness, fatigue, eye symptoms, bowl and bladder changes etc, etc…

When I visited the MAYO Clinic a few months back after many thousands of dollars of diagnostics, what they left me with was one sentence: “You have PRIMARY PROGRESSIVE MS and we have nothing to help you.”

In this post today, I wanted to open the floodgates a bit; my own and ours collectively.

What does one do? Who do we trust? Where do we go to collect information regarding our well-being when there clearly is some sort of epidemic presenting itself looking like MS and Parkinson’s and Lyme’s and Lupus and all the other autoimmune illnesses popping their heads up faster than we can name them?

I don’t have all the answers to be sure.

I have questions.

All this confusion surrounding diagnosis and treatment possibilities is soulfully stressful and financially taxing.

It all keeps pointing me back inside myself.

I want so much to BELIEVE those who have spent their lives in the quest for KNOWING.

But I am unwilling to lay my life down in unquestioning acquiescence when there is so very much uncertainty on the wind.

We are all so good at posing with all our cool cowboy gear; guns and chaps and big hats at mysterious tilts and arms crossed as we defiantly say: I KNOW!

I, myself, DONT know.

And that right there, ladies and gentlemen, is what I’ve got for today.


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