Sunday, October 25, 2009

What I Miss Most

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.


  1. this is beautiful and unfortunately I understand too much of it.

    I don't think it's too depressing or revealing, but I certainly know what it's like to feel vulnerable about sharing this sort of stuff. Especially with people who cannot begin to conceive of what it means to lose all of this.

    I got to live about 15 more years of my life able bodied than you did. But now I'm in almost the same condition, though I can still get up for very brief amounts of time (bathroom trips, mostly)

    Dear woman, you show me that it is possible to continue and still have purpose regardless of our condition.

    much love to you today.

  2. A heart rending post but so true.

    Although I was much older when I started with Lyme Disease and not as sick as you I can understand how you feel.

    Now I am well again although still need antibiotics to maintain my health I can enjoy so much again. Little things throughout the day remind me how lucky I am to have recovered.

    Especially so with all the controversy that makes it so difficult for people with Lyme to be diagnosed and adequately treated.

    I did not have all your other complex problems and never knew that endless fatigue that so many with ME/CFS suffer.

    I was lucky and will leave no stone unturned to get recognition for what is going wrong with our health care systems that leave so many undiagnosed and inadequately treated.

    I await with interest because I feel sure that for some the XMRV retrovirus may well be a co infection with Lyme especially as it comes from the mouse world.

    I hope you soon recover from your crash and thank you for visiting my blog.

  3. "I miss having a body that matches the energy and vitality of my soul."

    Thank you for having the courage to post this... We spend so much time dedicating our thoughts to the positive, to the things we can still do, to the people who are still there, that it can be viscious when we "slip up" and remember that underneath all the strength, there is still hurt, there is still loss. And yes, the next day, or maybe the day after, we'll be "ourselves" again, focusing on what we can do with each day... People don't realize that we are this way--appearing so strong and optimistic--because if we weren't, we'd completely fall apart. And every time we dare to remember what we've lost, whether it past or future, we're risking so much more than just a couple hours of nostalgia. It's remembering that life as we knew it, and the life everyone said we were supposed to have, was taken from us...and then having to bounce right back, because if we don't, it's like going through it all over again, and causes a crash that steals more of our vitality. Truly, truly not for the faint of heart.

  4. This post is so beautiful and there are only a very few things that I can't empathise with, unfortunately.

    And what nocturnespider said about not letting ourselves think about it resonates with me too. Most of the time I don't let myself think about this stuff because it's so soul destroying to do so - to think of what I'd do if I were well hurts so fiercely I think I might drown in the emotions, and it's hard and energy-sucking to get out. So most of the time I just don't go there.

    I let myself think of what I'd do if I were 1 step healthier, 2 steps healthier, perhaps 3 ... but not the thousand steps it'd take to be well again. That's too dangerous.

    Thanks for posting this - I shared it with Facebook friends because your writing tells them so much about me too.

    Love & hugs,

  5. Potential, missed opportunities, and so many wants: I understand it all to well, unfortunately.

    This is a wonderful, beautifully vulnerable post, and I just wanted you to know that I get it, and I wish for things I can't have too.

  6. Thank you, Laurel, for having the courage to share this wonderfully beautiful and vulnerable post. I relate to so much of it, and it brought tears to my eyes. It also reminded me that I am one of the lucky ones, and have a lot I need to remember to be grateful for. Bless you, Laurel.

  7. Thanks for all the kind and thoughtful comments, as always. Means so much!

  8. Hi Laurel. :)

    Well said. Every part of it was nicely done. I very much share your wishes for the future and I can feel the days passing in which they may have time to occur.


  9. This post is so honest and real. It speaks for so many...bless you Laurel.

  10. Laurel, Your words are eloquent, beautiful and encompass all that I miss as well. Thank you for your honesty.

  11. I can SO relate and am glad you shared. Do you have voice loss, too? I lost mine completely from 1992 until around 1998, then could speak for only a limited time until 2008. I can talk more now but always have to be careful and not overdo or I lose it again.

    I have links to some great me/cfs folk on my blog and plan to add yours!

  12. Thanks for your comments, Pris! I am aware of your name and your poetry, and am honored to have you visit my blog. :)

    Yes, I have been unable to speak more than a few words above a whisper since about 2001. You can see my full story at my original blog entry. Glad to know that has improved for you! Hope it continues to do so. Best of wishes to you!