What I Miss Most

This is a post from my blog from a few months back that I'm just getting around to posting here. :)

What I Miss Most

Note: This is a 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 anyway, because it shows the degree of loss that can come with this illness, as well as all the hopes/dreams that fervently remain. As I continue to try to dig out of a nearly 2 month long 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 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 glorious 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, and hearing in that first familiar "hello" a sweet mix of love and loyalty and joy... 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 clean 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 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 work out, 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 its 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 its 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 and honor and cherish him every day til death do us part, and hear him make those same vows to me in return. I want to know what it's like to share a lifetime with my best friend and husband. I want to be a wife.

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, and to watch them make simple milestones and boast to everyone with pride.

I want to be able to play and get to know my niece and nephew. I want to be a good godmother to my godson, to be his buddy and friend and someone who he admires and looks up to. 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 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 watch them grow and become the incredible people I already know they will be.

I want my would-be children to see the deep love and respect I have for their father, and that he has for me, so we can be an example to them of what love and marriage can be about. I want them, too, to see the strong love and passion we have for life, so that they may cultivate that in themselves as well.

I want a successful career doing what I love. I want to get my master's degree, and to 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.


Beautifully written as always. :) I've been meaning to ask you for quite awhile how has the Amygdala Retraining gone? Any help from that at all?
It's amazing how many things you're missing that some many people take for granted - reading, writing, talking on the phone....I hope you get it all back. Congratulations on testing positive for XMRV by the way; as bad as a retrovirus is it finally gives researchers a solid lead - hopefully a spear to the heart of CFS. I'm confident that if XMRV works out they can and will go after it vigorously - and once they do that who knows what might happen.
Oh LaurelB that wrenched very fibre in my being. Only those that are going through what we're going through could truly relate to your post.

'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.'

Hope is not lost.

love, Mark
I try not to dwell on all of that because I've lost it all for so very long now. But when I see it on paper, this isn't living at all. I wish people understood how horrific this really is. It takes away your entire life. I think the only way I've coped for so long is because I don't dwell on it. I only let it get me down around the holidays, when I know I'll never have a child or a family of my own. And it hurts. All those missed things, small things, helping your own child with homework or getting them ready for a holiday party. I'll never get to have that. It hurts. So, other than that, I just take each day, one day at a time, sometimes even one hour at a time.
Carrigon... I very rarely dwell on things either, and try to stay focused on what I have vs. what I don't. I often take things hour by hour as well. But some days that's harder than others, and I think it's important sometimes to acknowledge the loss and also to express the hope. This illness really does rob so many of so much.

Mark -- that one line you picked out... that's actually one of the things that gets to me the most, especially as I will be turning 38 this year. Thanks for your kind words.

Cort -- Appreciate the compliments! It is really the small things that I miss most... the things that most people take for granted, as you said. Its all the basic things of life, and things that never occurred to me I'd ever lose.

I'm hopeful about the XMRV stuff too. My fingers are crossed.

As for the AR/Gupta Program, I made a comment on it in the R U Amygdalized thread. It didn't work for me. I have more thoughts on it and may post about it later when I am doing better. Hope you continue to see improvement with it!
I really wonder if you have to have a certain degree of health to benefit from stuff like that. I know someone who's improved quite a bit altho still very sick - who now finds that sleep meditation tapes work for her - so she's off Ambien. Before they didn't touch her illness.
Although for me its been soooo sloooooow - even though I'm much healthier than most. Some people who are in worse shape than me responded much more quickly. Its a mystery! Check out HVS's thread on the Hammer - Vistide. She's improved greatly.
For me, I'd already been doing much of what Gupta recommended, less the mind map. Virtually every single thing he mentioned (even the exact same meditations) were in a stress reduction workbook I got 10 years ago. It almost seemed like it he used that exact book as a guide and just put to a DVD. :) But I went ahead and applied it in his way anyway, and gave it a 6 month go. I do have some problems with his theory, which I hope to write about at some point. But meditation, stress reduction and positive thinking is definitely helpful with any illness! I will check out the Vistide thread -- thanks!
Dear Laurel, I am 39 and wish for all of those same things. This touched me because it is exactly how I feel. I am like you. I know exactly what you mean, so much so that I am crying. Thank you for writing this. It makes me feel less alone.
Thanks, Spitfire. Funny, I just now got this message -- on the same day I heard from you on FB! Hope you are feeling a bit better. I really enjoyed your recent blog post as well.

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