Note: This is a personal journal entry from a couple years ago. I was a bit hesitant to post it here, as it was written in what was a moment of grief for me. I pretty much bare my soul. But I wanted to share it with all of you anyway because it shows the degree of loss that can come with this illness, as well as all the hopes and dreams that fervently remain. As I continue to try to dig out of a lengthy crash, many of these emotions have again been stirred, and I wanted to express them.
I want my life back. All of it. Every little morsel.
These are just some of the many, many things that I miss most.
I miss the feel of soft, freshly cut grass as you lie in a field on a warm summer's night, gazing up in wonder at all the stars shining like diamonds in the sky.
I miss salty ocean breezes caressing your bare skin as the sun warms every inch of your body, down to your core. I miss the refreshing, cool feeling of ocean water washing over you in a playful dance as it moves in rhythm to the pull of the moon. I miss looking at the vastness of the sea and sky, and sitting in wonderment at how beautiful it all is.
I miss picking up the phone to call and hear the sound of a life-long friend's voice. I used to love that first familiar "hello," detecting a sweet mix of love and loyalty and happiness at hearing from me, knowing we share a history together which includes our innermost secrets and flaws, and that we love each other just the same.
I miss the glorious feeling of a daily shower and the soft, massaging flow of water gliding over your skin. I miss the wonderful feeling of being clean and fresh from head to toe, of having bouncy hair every day, and smelling of scented soap.
I miss hearing my own voice and the liberty of being able to speak what is on my mind and in my heart. I miss being able to tell people in my own voice that I care about and love them. I miss the joy of lively conversation and sharing ideas out loud. I miss the exhilaration of a full, deep and jubilant belly laugh -- the kind that makes you catch your breath as tears of joy stream down your face.
I miss going for long scenic drives, with or without a planned destination. I miss the freedom, joy and sense of adventure that travel brings, the discovery of new territory or culture, and the sense of awe at seeing beautiful landscapes and scenic views. I miss meeting new people and the joy of new experiences.
I miss getting to see my fiance's sweet smile each day and the amazing sense of comfort I get in being wrapped in his arms.
I miss sleep -- beautiful, uninterrupted, deep and refreshing sleep. I miss waking up feeling rested and renewed, healthy and vital. I miss waking each morning knowing, without even having to think it, that my body is ready and capable to take on any adventure or challenge of the day with perfect ease and good health.
I miss the joy of learning to cook and the satisfaction of creating a well-prepared meal.
I miss cleaning! I actually miss dusting, vacuuming, scrubbing, doing the laundry and cleaning out clutter. I would LOVE to get down on my hands and knees and scrub a house from top to bottom until it sparkled. I love the feeling of a freshly cleaned home, especially in spring.
I miss having had the chance to create a long, successful and satisfying career doing something I love. I miss the feeling of achievement that comes with a job well done. I miss being able to put my ambition to work and experiencing the rewarding feeling of a difficult goal or task coming to fruition. I miss being able to wake up each morning happy to go to work, and coming home each night knowing I gave it my all and exceeded expectations in doing so.
I miss going to movies and the fun of getting absorbed into a great story on screen, whether it be one that makes you laugh, cry or think and reflect. I miss the smell and joy of eating popcorn at the theater or even in front of the TV.
I miss reading -- books, newspapers, magazines, and letters. I am ever grateful for audio-books, but there is nothing like reading a good book, cover to cover, on your own.
I miss exercising. I miss going to the gym, doing sit-ups, lifting weights and going for long (or even short), satisfying walks. I miss the joy of a good workout and the feeling that it helped to benefit my body instead of worsening it. I miss being toned and fit, and looking at my body in the mirror with some sense of satisfaction or pride. I miss having the chance to take the karate and dance lessons I've so wanted to take since I was a young girl. I miss a body that responds as it should to physical and cognitive exertion.
I miss the pure exuberance of good health, of being able to move and engage in life with ease and freedom, and without repercussion. I miss the feeling of wellness, of not being sick, of not being in constant physical distress. I miss being able to do whatever I please, even the simplest of things, without penalty. I miss having a body that matches the energy and vitality of my soul.
I miss having endless possibilities for each day. I want to wake up again one morning knowing that I can do ANYTHING I want that day and that the world awaits me.
I also yearn for what I have not yet had.
I want to know what it’s like to spend endless hours in conversation with my fiance, getting to know him even more deeply every day and falling more and more in love with each other. I want to have many candlelit dinners and romantic evenings together, and go on fun adventures doing the things we love to do. I want to experience the simple and mundane tasks that couples share together every single day.
I want to know what it’s like to walk down the aisle on my wedding day, knowing the man of my dreams awaits me at the alter. I want to know what it's like to vow to love, honor and cherish him every day until death do us part and hear him make those same vows to me in return.
I want to know what it's like to have life growing inside of me; to feel the rhythm of a tiny but steady heartbeat in my belly that is not my own. I want to know what it is like to see life flow through me, to hear my baby's first breath and to marvel at the miracle of his/her arrival.
I want to know what it's like to hear a child's repeated cries of "Mommy! Mommy!" knowing it's you for whom s/he yearns.
I want to be able to change dirty diaper after dirty diaper, to soothe a child's tears, to be filled with awe at the miracle of their existence. I want to watch them smile and giggle and grow as they make each milestone, and boast to everyone with pride.
I want to go to my future children's dance rehearsals, soccer games, school plays and piano recitals. I want to do crafts and bake cookies with them, play sports with them, help them with their homework and school projects, and teach them about values and morals. I want to go on vacations together as a family and watch their joy as they experience new adventures for the first time. I want to be there for them in all their good times and bad; to be fully involved and deeply interested in everything they have to do and say. I want them to know without a shadow of a doubt that I love them unconditionally.
I want to be able to play and get to know my niece and nephew. I want to
be able to hug and kiss and talk to them so much that they get sick of
me. I want to take them on adventures they will never forget and help
them make memories they will cherish for a lifetime. I want to be a good
godmother to my godchildren, to be their buddy and friend and someone
they admire and look up to.
I want a successful career doing what I love. I want to get my master's degree and make a difference in the world doing something that brings me joy. I want to do volunteer work, knowing I am helping those in need, and helping them make dreams come true.
I want the chance for a full, engaging, adventurous life as I express all the vitality, energy, joy and spirit of my soul.
I want the chance to fully be me.
Sunday, October 25, 2009
Tuesday, October 6, 2009
I wanted to post a quick update to say that I just got word my video testimony has been accepted, and will be viewed at the upcoming CFSAC meeting (along with other patient testimonies) on October 30th around 9:15 a.m. So I am very excited about that!! The two day meeting will be videocast live, if anyone wants to watch it online. For more info, visit: http://www.hhs.gov/advcomcfs/
Much thanks to all who left me such kind comments and words of support!!
Much thanks to all who left me such kind comments and words of support!!