One year ago today I was off all of my meds
One year ago today I was ready to start a family
One year ago today I had much longer hair
One year ago today I was working full-time
One year ago today I would not have guessed that I'd be where I'm at today
This past Saturday night I celebrated my birthday. I celebrated it with a great group of close friends and family. We ate delicious food, drank a few drinks and danced the night away. It was the perfect evening to round out a not so perfect year. And yet, as I sat in the restaurant before anyone else arrived I had a few minutes to reflect on my 27th year of life, and I realized that I actually didn't want it to end. I realized that I was going to miss being 27 and I wasn't sure if I was ready for 28.
You see, despite it's challenges, I feel that this past year I finally came into my "womanhood." I always felt like a girl before. Depending on others for my life choices. Trying to live up to my mother's and father's expectations of me. Trying to be the "perfect" wife for society to see. Wanting and needing the approval of those in "authority." But at some point this year, something within me clicked and the transition began. I started to leave that scared naive little girl behind and I began to embrace the strong, powerful, loving and unique woman that waited in the wings.
Perhaps it was the prospect of becoming a mother that made me feel "all grown up." Perhaps it was the loss of that prospect that made me realize I had to deal with my own problems and no one else was going to "fix" them for me. Perhaps it was the numerous ER visits or the feelings of helplessness that ensued after each visit. Perhaps it was the anger that I felt at losing all control over my own body. Perhaps it was simply just time. Whatever and whenever it was, this past year I finally said "yes" to the woman that I needed to become and on Saturday night I let her "dance to keep from crying/dance to keep from dying." -(Ntozake Shange) It was therapeutic, it was fun, it was what I needed.
Below is an excerpt from my memoir (a very long work in progress) about the importance of music and dance and how it's shaped me and helped me on this life journey. Enjoy.
And those who were seen dancing were thought to be insane by those who could not hear the music.
I like to dance Salsa, merengue, bachata, hip-hop, pop, anything really. I like it when my hips sway. My legs and feet often stumble to the beat, but I feel the rhythm, the soul and the passion of the music. I can twirl and shake for hours. Whether I’m cleaning the house, at a club, or drunk or sober, I like to dance. All I need is to feel the bass, the guitar, and the drums. The drums that beat like a schoolgirl in love.
Since I was a little girl, and Mami would play Juan Luis, Julio Iglesias or La India on our record player and clean I knew music meant something to my family, my culture and mi gente. The soulful rhythms, reminiscent of a simpler life back in the DR are what kept my mother sane most days. Without mournful voices and synchronized tambourines, I’m sure my mother would have packed a bag and left a note like so many other desperate housewives of her time did. But deep inside she knew she had to let Jerry Rivera and Los Hermanos Rosario keep her heart alive and her spirit free.
Unfortunately for me, however, her strong beating heart meant that I would be awakened every Saturday morning by a humming vacuum, a güira, a guitar and some Caribbean man’s achy voice complaining about a maldita mujer that left him for another man. All this racket would eventually be followed by Mami screaming, “¡Levántate de ahí ya!”
To which I would regretfully reply, “But why?!”
And carefully but deliberately she’d come to my bed, snatch off the covers, leaving me cold and afraid and say, “Porque yo dije, because I said so.” I would then oblige, get up, and commence the weekly rituals of dusting and scrubbing, as a scratchy merengue rocked the house and my mother back and forth.
The cleaning, singing and missed step dancing became a ritual in our house that lasted more than 10 years. It vibrated through our walls and under our feet. It made us laugh. It made us angry. It was a silent prayer, a requiem for diminished dreams and an uncertain future. Amidst my mother’s nagging and my rebellion, it was the only way we knew how to make peace.
I knew then, as I know now that music is essential to the well being of my family and my culture, that dancing is not only crucial but necessary for our survival and that both define who we are as a people and a race. Sometimes, it feels that Scleroderma has taken that away from me.
Sure, my hips still sway from side to side and yes, I still feel the drums pulsating through my veins, but I cannot dance like I used to with my husband anymore. And for me that is the greatest tragedy of all. Our first kiss happened while we danced. We made love on and to the dance floor before ever taking off our clothes, and when we finally did, there was a soft bachata playing in the background.
All these things I remember when I catch my breath and grab my aching thigh as the salsa has just barely begun and I’m already headed back to my seat. But my husband just smiles, places his hands on my stubborn hips, guides me back, takes a drink and asks: “Are you okay, baby?”
And I lie and say: “Yes.” Because physically I know I’ll be fine, but as a Dominicana I feel like I have lost something. I feel that I have had to abandon a part of me that doesn’t want to be left by the side of the road. The part that connects me to a place and a people I will never quite fully understand or be a part of.
I am now stuck floating between three worlds, three “cultures,” three distinct selves that require attention: my American self, my Dominican self and my chronically ill self. I play tug of war on a daily basis and I never know who is going to win. Will I have the strength to sweep the floor and salsa side to side today? Will I decide instead to write Haikus and listen to Jewel? Or will Scleroderma win and keep me in bed all day, tired, confused and heavily medicated? I can never accurately predict which self will be expressed and embraced on a day to day basis but I accept and believe that even if my illness or work or life get too crazy I, like my mother always did, still can and should find the time, the energy and the spirit to hear the music and dance.