Post #7 - Finding Comfort in the Midst of Frustrating Times

There was a time when I could do the above

Up until a few weeks ago, although primarily confined to bed, I was allowed to get up for short periods to wash my hair and shop at Walmart, Publix, or Fresh Market (a real luxury for me).

However, my physical situation has worsened quite a bit. Now, getting out of bed can lead to a serious infection, possibly another digital amputation, or another hospitalization; none of which I am eager to experience again. Per my cardiologist, wound care doctor, and foot surgeon, I must stay in bed. Not happy about this at all.

I want to feel the sunshine on my face; not just see it through my bedroom window. I can’t cook, which drives me a bit crazy. I'm an avid gourmet cook-from-scratch home chef. I enjoy cleaning, putzing around the house, and I have mounds of paperwork that require my attention, all of which I cannot accomplish lying flat on my back.

I find medical setbacks terribly frustrating and quite exasperating.

 So, before I make myself insane just lying here, I need to find the positive in my latest imprisonment.

Hence this list:

1. I can still use my hands to write, blog, surf the net, and chat.

2. I love the colors of my walls and the way I decorated my room – in stylish eccentric/eclectic. It soothes me and stirs my creativity.

   

 

A better shot of my idea of an English garden on a budget :)

3. I am blessed to have the distraction a flat screen TV and a DVR

4. My media player is packed with over 100 of my favorite tunes

5. See this five-pound shake weight? I have the strength to lift it and exercise while in bed

6. My loved ones kindly serve me all my meals

7. It teaches me how to find contentment

The things I can’t do fade a bit when I focus my thinking and energies on what I can do. It’s not always easy, but it certainly is necessary.

“Find a place inside where there's joy,

and the joy will burn out the pain.”

Joseph Campbell

Post # 6 - I'm a Lucky Girl

If not for the constant reminder of those days that smacks me in the face as soon as I open my eyes each morning, I may have found the strength to put this all behind me.

Molested at the age of twelve, raped at fifteen, and sold to human traffickers at the age of eighteen, contracting Tropical Spastic Paraparesis – ultimately confining me to my bed. Humiliation, guilt, and shame kept me silent. 

My passion, dancing, stolen from me.

When I was fifty-eight (five years ago), I became suicidal due to years of trauma and nightmares. I had no desire to speak to anyone face to face so I reached out to the internet seeking help. No matter what time of the day it was, there was no one that I could talk with, so I sent out emails or filled out forms.

The only website that responded to me sent me an email asking me for a donation, hardly the way to open up a victim's heart to want to have any further communication.

Informative websites such as The Polaris Project only provide referrals. Unable to find a site that offered a live contact twenty-four hours a day only led me to more hopelessness.

People have mentioned that my faith should be enough. They lack understanding. Then, a friend suggested that I "vomit" all the horrors that lived inside of me onto paper. I did. It has put me on the road to healing.

I realize now that I am a lucky girl. Less than one percent of human trafficking victims are found. I have made it my mission to add my voice to the many other voices fighting to end human trafficking and sexual violence.

I pray that my soon-to-be-published book will not only enlighten many of the domino effect that trauma wreaks on a life, but also give hope. Now, by the grace of God –    

Nothing    will    silence    this    woman’s   voice   again.

"Your writing matters as much as the hard labor others do. You teach us all through your words the value of helping other human beings through tragedy." author unknown

Post #5 ~ Where Can I Run When the Only Place to Flee Is Inside My Head?

Seems like I’m trapped on a never-ending rollercoaster ride; never liked them as a kid; terrified me so much, I always threw-up. 

Yesterday, I received a devastating email that sent me spiraling into a well of depression.

How I’d love to escape – go for a dreamy, care-free drive through a verdant countryside or – take a leisurely stroll on a sun-kissed beach, listen to the seagulls song, hear gushing waves crash against jagged rocks – sink my feet into squishy, golden grains of sand, and let the salt from a rush of sea spray tickle my tongue.

But, I can’t.

Chained to my bed with deadened legs, I’m unable to move. So, when I’m hit with bad news or in stress-overload, I’ve nowhere to escape but into my mind. Often, like today, I simply shut down; listen to depressing music and hide my head under my covers for hours – one of my safe places.

Other times, I rebel against the sadness; blast tunes on media player from my laptop, close my eyes, and dance in my bed until the misery fades away.

I search for God during those dark moments and cannot find Him. I run through a spinning maze in my head, which has no road signs, and lose my way.

Then, suddenly, I’m enlivened. An intangible joy pushes it way through my gloom and a force outside of myself strengthens me once more. Even when I try to resist, that joy and strength overpower me in an inexplicably beautiful way.

I’m myself again. The little girl inside is comforted and I’m able to press on. Hence, this post – And so I do.

"Hope" is the thing with feathers

That perches in the soul,

And sings the tune without the words
And never stops — at all....”  ~ Emily Dickinson

Post #4 ~ Nightmares, Dreams, & Imagination

Where is that lovely place we go when we dream?

I don't know where it is or what I do, but I can walk, 

and it’s just lovely.

Not one night passes by that I don’t dream or have a recurring nightmare. I walk or dance in each one. Sometimes I wake up suddenly, believing that I really can walk, so I try to get out of bed. Initially, it always surprises me that my legs won’t move. For those brief moments, I forget that I’m paralyzed, until reality sets in again.

It’s surreal and always reminds of the things I miss most like driving, dipping my foot into the ocean, slipping into a shoe, and, of course, dancing. Oft times I feel like a spectator of my life, floating above my body while watching the traumatized little girl within me longing to be freed. 

It may sound odd, but it is that little girl who is writing my book. I’m at the end stages of a final rewrite with my editor – five long years of reading and rereading my life’s story. Each page I reread provokes a trigger. They unexpectedly pellet me, making it difficult to control them.

But, I’m learning. After a few therapy sessions, I began to understand the subtleness of triggers. Writing occupies most of my time and has become a healing balm for me. So, when I wake up from a dream or nightmare, I write it down and file it away in a lockbox.

Many times, I drift away into my imagination. Right now, I’m going to grab a picnic basket, brimming with bittersweet dark chocolate, creamy brie cheese, a bottle of a rich red Merlot, and a crunchy savory biscotti – settle on a cushy patch of soft grass, rest my back against that lovely verdant, shade tree, and drink in the stunning scenery surrounding me. Care to join me? 

Post #3 ~ Girls Just Wanna Have Fun

Maddie & Maggie

     One of my BBFs took me Sunday out to do anything I wanted to do.  We went to a brand new mall near my home. It is so classy! I haven’t been in a mall since the early 90s.  

     I’m not supposed to be out of bed for more than a couple of hours (per doctor’s orders due to circulatory issues), but this was a special occasion. Maggie, (who is also my amazing physical therapist), knew I never have a chance to do anything just for fun, so she invited me out on Sunday. I am in safe hands with her.

     She brought along her charming fifteen-year-old daughter, Maddie. Maddie is an adorable accomplished pianist and singer, volley ball player, and a all-round bubbly young lady. I cannot put into words how much spending time with Maggie and Maddie thrilled my heart. They are so kind and full of life.

         I also basked in the beautiful 74◦ Florida sunshine in front of the mall for a few minutes. It felt wonderful to taste fresh air and catch a ever-so-slight tan.

         We strolled through several stores shopping for hats and clothes for me. I love wearing hats, but gave all mine away after all those surgeries that left me bedridden. I figured I’d never have a chance to wear hats again. But, now I’m not so confined. I venture out to doctors’ offices and the grocery store. So, I bought these two hats:

     Then, Maggie bought me ice cream, a real treat for me (I’m on a perpetual diet). I luxuriated in a cupful of three decadent flavors: cake batter, coffee, and chocolate truffle. Heavenly!

     I thoroughly enjoyed our Girls’ Day Out on Sunday. What great therapy – soup for my soul! I’ll never forget that day. Thank you, Maggie and Maddie! You’re the best!

         

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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