I speak with a raspy whisper a voice unknown to me when I was younger. Starting in high school I became the adolescent lioness that practiced roaring with my brown braided hair that ran down my back in lanky curls. I learned to lick my ferocious lips with pleasure getting into funny escapades with my best friend Paula. I spoke with great assurance to teachers and professors whose titles meant nothing to me. My body language stated that I was their equal because I too was involved and able to keep up a conversation; I read the book review from the New York Times. Of the many poems I penned one was selected as the winner to recite in person to the poet, Rod McKuen. I mattered back then and I turned heads as I wore my black leotard that clung to my body like a kiss, my worn denim jeans that hugged my body with a warm embrace and my brown clogs that clicked and clacked happily down the hallways. I had a voice back then, a sweet, cajoling, flirtatious, strong voice that I no longer have. I had a lot of dreams when I was younger but in the past four years, saddled like a working mule, with Fibromyalgia, Hashimoto’s Thyroiditis and Chronic Pain I seem to have lost them.
I used to dream that I would publish a book and it would be a best-seller. I saw myself on Oprah, chatting it up, I could practically hear her whisper into my ear: “you go, girl!” Oprah and I would be friends, and I too would get all the presents that the audience gets, including: the trip to Austrailia, a brand new car wrapped in a giant red bow and one present each of ALL her favorite things, retroactively, of course.
I used to sing out loud, off-key and high-pitched, but that didn’t stop me from believing that Simon and Garfunkel or John Denver would welcome me up on stage to sing with them. I could see the white stretch limo parked outside my apartment building to pick me up. All our neighbors and friends would be hanging out of their apartment windows to see me. After that, I was so sure that I would be the first mega millions lottery winner that I worried about security and who would handle my new financial windfall. Could I deal with all this money? Four years ago with my diagnosis of Fibromyalgia and Hashimoto’s Thyroiditis, things changed. With the focus on my pain I lost all of my dreams and tried to learn how to cope. The dreams died like fragile moths hitting a glass door, violently and forever.
I always dreamed I would get married and when I was 30 I did. I married my best friend and we’ve been married for 22 years. A year after our wedding we started trying to have children with no luck. My dream back then was to get pregnant and have a child, more than any of the previous dreams wrapped up together. Finally, after two and a half years of painful injections and grueling testing at an infertility hospital I got pregnant and that was one dream that did come true. I loved being pregnant and I glowed with delight, all the more because I had experienced such pain and anguish with the infertility process. When my son was one I got pregnant with my daughter and having a boy and a girl made all my dreams come true.
While I daydream about traveling to Holland to see the cheery tulips bloom or a trip to Spain’s countryside I know those dreams come with a huge price tag now: pain, special accommodations, and sacrifice. I am not the young traveler I used to be, I worry about traveling and all my limitations. I’ve accepted the aches and pains and sore muscles and swollen joints of Fibromyalgia and Hashimoto’s Thyroiditis. I live with the chronic pain and the cloudy haze that encompasses my brain. I can’t entertain the thought of a possible cure because I couldn’t stand to live in my body, hoping. I would not be able to cope with life as I know it today; my skin crawls stealthily out of my body just imagining it. I need to protect myself and my friends from that faraway fantasy. If I could protect those I love from heartbreaking devastation and pain I would. My new reality is giving up on a lot of dreams that I used to have; like my size 10 pants, that no longer fit me. My new dream is trying to appreciate the good things I do have now: my family, my dog, my dear friends. If I could I would spin a protective web, thick like golden honey that would protect my family from pain and heartbreak. Living in the here and now, appreciating every moment that we do have is my everlasting, unwavering and constant dream. I had to redefine my dreams as I had to redefine my life, my life as a chronic pain patient.