I was asked to give the keynote address for the 2009 Fibromyalgia Awareness Day at Cal State Fullerton. I’ve given it many times since. Here’s an abbreviated version:
I became symptomatic in 1996 when Fibromyalgia was considered a Hysterical Middle Aged Woman’s SYNDROME. By the time I was diagnosed I met that criteria. Doctor after doctor with a wink and a knowing pat on my shoulder (at least that was what I perceived) let me know nothing was PHYSICALLY wrong with me.
I decided I was inhabited by Aliens who were using me as a Southern California time-share. It gave me comfort to find the cause.
Years passed, the Aliens stayed and the pain turned into depression, into exhaustion, into despair. My body betrayed me, my mind fogged, the medical community abandoned me, family & friends were powerless.
I was both sustained and drained by my psychotherapy practice.
Raised as a non-practicing Jew, whose father and mother were professed agnostics. I now had no faith – in my body, mind or a God. I had nothing to hold onto for comfort much less hope.
I didn’t matter. Now THAT’S a depressing thought which I suspected was part of the Alien’s plot to render me completely helpless & hopeless in order to take over my time-share real estate.
I didn’t matter. There was no purpose to my life. I started making pictures: Ugly pictures, scribbling pictures, angry pictures. I would paint and paste, scribble and scrawl without any conscious thought.
Weeks later, months later, in some cases years later I would put words and meanings to my unconscious expression. That body of work turned out to be a visual document of my journey with the aliens.
I realized I had been mourning. Grieving my loss of identity, a loss of purpose. I mourned for that energetic person: The one who worked a 60 hour week and went to school for two Master’s degrees; who jogged 10 miles in 100 degree heat; who saw 8 clients in a row and remembered the details of their lives a year later…
She was dead. I was angry. Now I had to check my appointment book to remind me of my clients’ names. I could work only for 3 hours before I had to take a nap. Walking around the grocery store was exhausting. I didn’t want to talk to anyone. Holding the phone to my ear hurt my arms. Walking burned my feet. I didn’t make commitments other than work because I never knew how I would feel.
Life as I knew it was gone. What was I? Who was I? Why was I here? If there was a purpose to my having fibromyalgia it could only be an alien plot.
Without any pre-determined intent I drew a picture of my fibromyalgia: Three eyes, three-tongues and spontaneously titled it “The Soul Slayer
Until that moment I had been focused on my body and mind, never my soul. Since I’d been searching for the cause and a cure for my fibro for over a decade it was natural to now start searching for my soul.
Where does one look for a soul? I went to synagogues and churches . Found wonderful people but no soul – at least not mine. I read about the world’s religions and searched SOUL on the internet. I was sure that everyone else had a soul and it was only time that they discovered mine was missing.
Accidentally (maybe not?) I was introduced to a spiritual mentor, no more no less. He was Baha’i, a faith I was familiar with but about which I knew only some basics. He asked me to examine my life, my choices, my beliefs. I had long known from a psychological perspective about my choices and beliefs but now that my mind and body had betrayed me it all rang hollow.
He told me to repeat out loud “Say, all are created by God” and “Thy Name is my healing.” each, 95 times every day. (95 is a sacred number to the Baha’is.) There was nothing to lose. Unlike everything else I had tried as a “cure” this Rx didn’t cost me a penny and had no side effects (or so I thought).
I needed a time and place where my fogged brain would remember to repeat each of these sentences 95 times out loud.
So I started walking and repeating “Say, all are created by God” and “Thy name is my healing.” 95 times. It took my mind off the pain in my legs & hips and burning feet as I walked. I started talking to God.
beginnings of Faith – My Servant of God explained to me that ALL souls recognize each other in passing. I smiled at everyone I passed wherever I went, secretly delighted their souls knew my soul, even if I didn’t.
Exercising, smiling, talking to God!
I’m not sure I’ve mastered listening to God but suddenly at the ripe old age of 66 I discovered faith.
Walking, talking and smiling may not be the cure for fibromyalgia but they are damn good medicine (God, forgive me for swearing – it’s the only way I can underscore my point) and faith that the Aliens can’t destroy me. I’m much more than just a convenient timeshare.
My soul knows. I can live with that.
“Know thou that the soul of man is exalted above, and is independent of all infirmities of body or mind. That a sick person showeth signs of weakness is due to the hindrances that interpose themselves between his soul and his body, for the soul itself remaineth unaffected by any bodily ailments.”
“Consider the light of the lamp. Though an external object may interfere with its radiance, the light itself continueth to shine with undiminished power. In like manner, every malady afflicting the body of man is an impediment that preventeth the soul from manifesting its inherent might and power. When it leaveth the body, however, it will evince such ascendancy, and reveal such influence as no force on earth can equal. Every pure, every refined and sanctified soul will be endowed with tremendous power, and shall rejoice with exceeding gladness.”