Friday, February 6, 2015

Post #1 ~ The Day I Stopped Dancing

Tropical Spastic Paraparesis is an extremely rare disease endemic to the Caribbean, Africa, and Japan; affecting approximately 20,000 people in the United States. I am one of them.

Me & my dear cousin, Frankie, who left us way too soon

I was four years old when Mom enrolled into dance classes. I studied ballet, jazz and tap. I had big dreams of dancing in the movies like Shirley Temple. Even though my life took some horrific twists, I still danced, anytime and anywhere I could. During the 70s and 80s, I taught dance at Arthur Murray Studios and a private dance studio in Miami Beach. It was glorious.

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Then it began -

It was a picture-perfect day in south Florida, and promised a balmy, breezy evening. My husband had invited me to go dancing, something he rarely did. Overjoyed at the prospect, I searched my closet for something stunning to wear. Nothing would exist that evening except me, the music, and floating away my safe place.

I found my little black sequined dress that had a slit discreet enough to show only a little thigh and slipped on a pair of strappy silver heels, perfect for dancing. I shimmied in front of the mirror. All eyes would be on me - I would sparkle tonight. I adored being the center of attention when I danced.

My husband and I drove to a Spanish bar in the Little Havana section of South Miami. It was a small dive, smoky and dark. The bar was full of old, drunken men who ogled me when we walked in. However, all I saw was the twinkling stamp-sized dance floor calling out to me.

We sat at a table and ordered drinks. I tapped my feet under the table to the beat, anxiously waiting for him to ask me to dance. Finally, after Armando drank a few beers, he took me to the dance floor. One of my favorite salsa songs was playing, and we began to dance. However, my feet refused move to the rhythm.

I tried to lift my feet. They didn’t respond. My legs felt heavy and I was uncoordinated, something foreign to me, an accomplished dancer. What was happening? I had sipped one cocktail – I wasn’t drunk.

Ashamed, I stammered, “I guess I am more tired than I thought, honey.” He sneered, clearly embarrassed by my clumsiness.

I couldn’t walk off the dance floor without falling. I had to ask Armando to help me. He begrudgingly pulled me across the floor and pushed me into my chair, then grabbed another woman to dance with.

Yanking my bangs, I shook my head rapidly, screaming inside, “No, no, no. Not my legs.” I knew something was terribly wrong with me - but what? Could it have been from the injuries I had sustained in a long-ago boating accident, in which I fractured my right hip? Perhaps I had not healed properly.

I spent a sleepless night. Crazy thoughts kept running through my mind. When I tried to close my eyes, I envisioned doctors sawing off my legs. Every moment became nerve-racking. I fled from my abusive husband May 5th 1990, moving to Baltimore with my kids.

Two years later in November 1992, and after spending three months lying in a hospital bed in Johns Hopkins, a neurologist diagnosed me with Tropical Spastic Paraparesis, a sexually transmitted disease, which paralyzed my legs. I would never dance again. I was forty-two. Twenty-four years have gone by. Now confined to my bed due to complications and sixteen surgeries, I had to find creative ways to live a full life.

I contracted this virus during the three years that four Jamaican sex traffickers held me captive. Nevertheless, beware, although this virus is extremely rare, it is silently spreading at a faster pace.