My story begins…
… in Levittown, PA, a suburb of Philadelphia, where I was raised with my older brother and sister. By my early teens, people noticed that I walked with a slight limp and my shoulder blades protruded. By the age of 14, I was diagnosed with a type of muscular dystrophy called FSH, or facioscapulohumeral dystrophy. I was told it was a degenerative, muscle-wasting disease with no treatment and no cure.
Determined to be a “normy,” I didn’t talk about my diagnosis and I lived my life as those around me did: going to high school, hanging out with friends, and then going to college and pursuing a career in fundraising. For many years I was active, playing tennis and racquetball, and I kept up with my peers personally and professionally.
But I always held this secret that I was “different,” and I was haunted by the knowledge that my muscles would become weaker and my limitations greater. I nervously anticipated the moment when a new acquaintance would comment on my awkward gait or ask what was wrong with my leg. I tried to act nonchalant, but I carried the burden of fear and shame, just waiting for my body to “out” me and let me down.
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My life took a fortuitous turn through a series of synchronicities. In 1995, my sister was visiting London and she turned on the telly. The man who would become my first teacher and massage therapist was on the evening news talking about his therapy for people with FSH. Not only was it rare to hear anyone speak or write about muscular dystrophy in general, it was unheard of to see someone offering a treatment for FSH.
I bought Meir Shneider’s books and started doing his exercises. I joined his mailing list and within a few months he announced he was looking for a volunteer with FSH to participate in a six-month study documenting the effects of his protocol. I lived in Philadelphia; he was located in San Francisco. I couldn’t just up and leave my job and life and fly across the country. My mother nudged me to call and get some more info. Before I knew it, I had landed in the City by the Bay.
I’d love to say Meir cured me and I’m now running marathons across the Golden Gate Bridge, but that hasn’t happened. I did gain strength and mobility during those six months of intensive exercise and massage treatment, but just as importantly I began to befriend my body. I learned about the mind/body connection, I opened myself to new ways of seeing, and I discovered snippets of hope. I also found the place I now call home.
San Francisco has embraced me with its healing ways. I came here eating Rice-a-Roni and cheese steaks. I am now a devotee of nutrition, bodywork, integrative medicine, meditation, and energy techniques. I’ve been magically guided to the perfect teachers, practitioners, and friends.
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I was fortunate enough to meet my friend Felicia in the therapeutic pool. We were the only two people without gray hair or senior discounts. We were doing our best, floating along with our broken bodies and shifting lives, but we felt isolated and rudderless. It was hard finding others we could relate to. We searched for books and stories that reflected our experiences, but they were mostly about folks with disabilities - which portrayed them as either sad and doomed or unrealistically brave, heroic, and inspirational. Where were the regular peeps like us? How were we to make sense of it all from the inside? Felicia suggested we publish a book. So, we gathered writing from people with an assortment of illnesses and disabilities and My Body of Knowledge was born.
Another turning point came when I enrolled in the Academy of Intuition Medicine®, a school for energy techniques. A wise-woman physician recommended I take an intro class to help me get grounded and to connect with my body. Two years later, in 2013, I graduated with a Master Certification in Intuition Medicine®. It isn’t easy to put into words the process that unfolded. But I now know there is a realm beyond the physical, where loving forces guide us and encourage us to grow. There are pulsating energy centers within and around our bodies that contribute to health or dis-ease. And I know that if we make the space for silence and reflection, we can access our inner knowing and experience a richer, more beautiful life.
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Am I cured? No. I still have FSH and the progression continues, although at a much slower pace than if I had continued the trajectory of my east coast ways.
Am I healed? I would say I’m getting there. This disease has opened me up in ways I didn’t even know I needed. It has slowed me down so I can reflect, create, and learn. I rest when I need to, I move as I can, I nourish my body, and I listen to the stirrings of my spirit. I’m at peace more often than not.
I still hold the dream of being strong and walking joyously and effortlessly along the shoreline of Ocean Beach, with the mist and the pounding waves as my companions. But meanwhile, I want to share what I have learned so far, offer you my thoughts and words, and perhaps bring a bit of beauty and comfort into your world.