Post #2 ~ A Bit of the Back Story

Me, Kathy, a cousin, Bobby and Billy

Here is some interesting trivia:

There are over 7 billion people on the planet. Of the 10 to 20 million people in the world thought to have HTLV-1, only 1-4% will go on to develop HAM/TSP (Tropical Spastic Paraparesis). As we know, I am one of them.

So, I calculated this:

·      800,000 is 4% of 20 million out of 7 billion people

·      400,000 is 4% of 10 million

In other words, you can be a carrier of the virus and never experience any symptoms. I saw a leading virologist at Johns Hopkins in 1997. I had already known that both my parents carried a particularRh factor. Their doctor told them not to have children.

The Rhythm system failed my parents. Mom gave birth to four of us.

My body exhibited hints of each symptom from the onset. My virologist said bad luck and an inherited gene contributed to the rapid exacerbation. 

However, it’s a blessing. I’m lucky that’s all that happened to me. My captors could have easily killed and disposed of me, or I might have overdosed from drugs, died from cutting my wrists, or contracted AIDS as well.

Instead, I lived and since this disease is so rare, people remember me, especially those in the medical field. It helps me maintain and develop relationships. It sets me apart from a limited pack. (Of course, there are many other rare diseases in the world). 

 Still, my goodness, what are the odds?

Beyond that, I’m the eldest child, born in 1951 – my brother, Bobby, 1952 – my brother, Billy, 1959 – and my baby sister, Kathy, born in 1960 – all are dead.

Bobby died at the age of 41 in 1993 from complication of AIDS and cancer. Billy died in his sleep, at the age of 46, in May 2005 from heart failure. My precious sister, Kathy, died peacefully in her sleep at the age of 52, November 2014, after a long and painful battle with Stage 4 lung cancer. They all suffered immensely from various conditions prior to their deaths.

Poor Dad and Mom, both long gone, suffered losing child after child. But, my world would not have been complete without my siblings. I'm thankful for the time we had together.

“Mystery creates wonder and wonder is 

the basis of man's desire to understand.” Neil Armstrong

“God asks no man whether he will accept life. That is not the choice.

You must accept it. The only choice is how.” Henry Ward 

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.

***********

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.

To the Left of Inspiration: Adventures in Living with Disabilities 

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