The purple sage, visible from my window, wait for me to prune their plumes, two minutes in the morning I cut as many as I can until my arms and legs fall limp. In the evening when it is cool enough for me to walk outside, when I have a wave of energy and mobility, I prune them another two minutes. In between, they stand like children given a bad haircut, by a parent who can’t cut hair, but wants to save money. They wait for me, part tall tired plumes, part short green grey leaves beginning to sprout anew.
A Chinese Chicken Pasta Salad cools on the kitchen counter. If it had feelings it might be relieved that its waiting is over…that it has become a salad. Four hours it took me, to cut red peppers, and broccoli into tiny spears, to saute chicken, to mix soy sauce, sesame oil, rice vinegar, sugar and ginger into dressing and to boil linguine. I cut, I cooked a few minutes at a time, too many minutes at a time, until my body stopped, until I dragged it to bed or the sofa for a rest…and waited for a bit of energy to surface again. The salad, sweet and sour, is two nights of dinner, tomorrow I shall not need to use my trickle of energy, of movement to create a meal.
It is me that struggles with patience most, that struggles to wait for myself, that judges, that twists and turns inside my immobile body wondering “why?” and “how?” an always active me could end up with no energy, that an always thinking me could end up waiting for my brain to process… waiting for my brain to find words…waiting for my brain to regain energy.
Death waits. I do not want to be laying here, wasting precious time as if I don’t see him. I long to be LIVING, yes in all caps, doing what I long to do, if illness hadn’t moved in. I long to dance, sing, strum, run, plant, rake leaves and jump in the piles, run in run-a-thons, attending classes, sitting in circles of people exchanging thougths. I long to give cook, throw parties for my family, for my best of friends, for new friends, and to work to make the means to do it all…making every moment before my end– lived in.
Instead living chronically ill, is a process of letting go. I have lived with chronic illness and chronic pain for over twenty years. I was young and now I am middle aged. I am able do as much and at the pace of what i imagined I’d do at the age of 100…perhaps I could do more at 100 than I can now. What do I do with this little tiny bit of life that runs through my veins…with the loss of ever being young as an adult, with reaching a stage of life, just before death, long before death?
Some days I am patient and in that patience I am at peace. But, more days, I work at having patience and peace. It is not what human beings are wired for, this being young, and laying in bed every day. It messes with the mind to not be able to do what you know is good for you, exercise (exertion exacerbates this illness) and healthy food (most which my stomach cannot tolerate). I know without these, death steps closer. I grow angry not to have the tools to keep him where he would have been, if my body still worked. I grow angry, but can’t run off the anger, paint out the anger, prune the sages beautifully with my anger.
I want to write inspiring today…but I am not inspiring. I am sad, exhausted and body stilled. I am working at patience, at accepting that I have to have it, to know the moments that like just blown bubbles, float over ahead, make us look, and than fly elsewhere and pop. I don’t want to miss the bubbles, so I contemplate, a tear falls now and then. I will feel a fleeting sense of patience, think I’m getting there and then feel it no more.
I don’t want death to shake his head when it is my turn…and say “you could have learned from the loyal willow who you saw everyday outside your window, learned the act of being still and alive. You could have listened to the soft sounds, the whispers, the wind, and grown to know and embrace the good of the still life, the patient life, the peaceful life.” I want death to say that to me without the “could have”. I want him to smile and say “you did good at making the the best of was was.”
Today, I am a flawed, energy deficient, needing to learn and grow woman, in a bed, in a house that holds an imperfect, but loving family, in a town becoming a small city, in a little populated but mountain abundant state, in a country that makes mistakes but keeps on believing it can fix them, on an earth where some people live with more than they need, and more people live with less, in a universe that holds mysteries beyond our expanding minds. I am a little bitty someone in it all, hoping to be at peace with and patient with my damaged body and in so being, live fully in, this little place in the universe that for a short while, holds me.
Hi Kerry- Yes, you are riding that roller coaster and it sounds like you have hit a deep decline. There is always the fear that the car holding you may veer off the track of that the track will never rise up again. We all survive by having hope whether we are young or old. We have our hopes and our dreams and our plans. When illness snatches away so much and limits our choices we feel cheated. I often ask, “Why did this happen to me?”. The one consolation for me has been that I was poisoned and it was not one of my daughters. I would gladly take that hit if it protected them but still they are not protected. The chemcials that harmed me are still sold and people still treat their lawns and spray themselves and I cannot stop them and I cannot protect them. Like you, I feel like a small voice and I want to be heard. We all need to be loved and wanted but soemtimes it is hard for me to like this new person I have become. The old me died when I was poisoned and this person is not nearly as smart or as fun to be with and I still grieve for that other me. This grieving is a lifeloing process and I hear it in your words. Take care, my cyber friend and I hope the tracks rise upward soon.
Sending you lots of love my friend~
Lynne
Lynne Morrell´s last blog ..Groovy goddess…where did you get that dress
This is beautifully written, Kerry. It really touched me deeply and expresses so many of my own thoughts. Thank you for sharing it.
Laurel´s last blog ..XMRV- A Week In Review
My heart is nodding yes, yes, as I read this. You captured these feelings beautifully. I try so hard to be patient, and optimistic, and hopeful, and moving forward. Sometimes it’s just beyond me.
Hugs and prayers, and I hope a special kind of beauty finds its way to you to cheer you up today.
Shelli´s last blog ..The Loneliest Summer
Kerry
As Laurel said, this is so beautifully written and as Shelli said, we understand what you are saying, experiencing, hoping for, and attempting to accept….There is a title of a book by Donna Partow that comes to mind…”This Isn’t The Life I Signed Up For” And yet, you show such courage. Not only when you have a positive attitude…but when you are honest and share the deepest of feelings with us. Thank you for that, as it gives the rest of us courage to do the same.
Sending gentle hugs and heartfelt prayers your way today, friend.
Renee´s last blog ..Touching Base
I completely agree with Renee. You are inspirational in your honesty and courage, putting your most private thoughts out here for us to share.
As I read and re-read your post I too dropped a few tears for you and how you are feeling.
I wish for you all the acceptance, patience, calm and peaceful living that you wish for yourself.
Continue to prune the sage, make the salad, feel the feelings, good and bad, positive and negative.
Your own words come back to you, “these are real these are OK.”
I am sorry I cannot write more today Kerry, I will try again tomorrow…..
All my love for you, my caring, inspirational, honest, beautiful, courageous, funny and fantastic friend.
Take care chuck,
Zar xxxxxx
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Zarla´s last blog ..Concrete in the mist-
Kerry -
Thank you so much for taking the time to read my blog and comment.
I know these days already and I’m still learning the ropes of CFS/ME land. I’m so sorry that you are feeling down today and yearning your previous life. I don’t think that any can ever understand (unless you are one of us) what CFS truly takes from you and sometimes it’s ok to acknowledge that instead of trying to be inspirational.
I’m so happy that you have the support of a wonderful husband and your children. I’m hoping tomorrow feels a tiny better for you.
dawn´s last blog ..What a Week
You are a great writer for a start.
You know, i think you really are doing very well at “making the best of what you have” and being the willow, but even willows are allowed to weep (sorry!). What we do not have /what we are missing and the patience and pain we have to endure does need to be acknowledged, which is what you are doing. i think we can never fully accept it and we all have periods where the acceptance is harder than others. We are living with loss, but you are doing good work on this blog which is inspirational and interesting to read and providing support and sometimes much needed humour to others in a similar situation. We are in this together and i hope you feel the support that you give so freely coming back to you now.
Ashy´s last blog ..The Dreaded Itch
That is a beautiful and inspiring piece of writing. You said it wasn’t inspiring but if you read the comments that people have left, you’ll know that isn’t the case.
You have this ability to describe the illness — both its physical and mental effects — in the most moving and articulate way, Kerry.
The last paragraph brought me to tears as you moved from your bed to the universe with your thoughts.
Keep writing and keep inspiring us, but take care of yourself always.
Much love,
Toni
Thank you all for visiting, for reading, for sharing, for caring. I love to write and wrote this many days ago. Through writing I not only can express my feelings, but understand and process them and in so doing move through them.
Today my feelings are different. If I wrote an essay today it would carry me somewhere else…perhaps a place I find funny, happy, ticked off…or at peace. I share this for those who worry that I am “down” when I write of the sad feelings that emerge in my writing, that I experience living with illness. I am okay, even more so because I am able to write and post my writing here.I have wonderful people, many who travel this same journey, to share the “all” along the way.
Thank you to those who give me writing kudos…which turn into inspiration…thank you to those who affirm the need to visit and express the myriad of emotions of this journey… thank you to those of you who made me laugh… thank you to those who care and told me so…
AND, Thank you for taking the time to read my long essay (and for many of you that meant spending limited energy doing so!) Warm wishes back to each of you that you may feel as well as can today physically and feel at peace with whatever emotions pass through.
— This morning I have awoken feeling a lovely 
— going camping tomorrow!
Hi Kerry, Glad to see that the car has started to rise up the track again. I think for most of us reading and posting on your blog it is a way of life to ride the tracks up and down. It makes me feel human and connected to know that others experience this same ride. If nothing else, it does make you find delight in the smallest of events. Enjoy that camping trip. There is so much therapeutic about being out in the open spaces and breathing the clean air and feeling the sun on your skin (even if you must limit your exposure) and the pure joy of watching nature’s show. Hope you have a wonderful trip and thanks for sharing and making us all feel real.
Thank you Pat; Pat who knows this journey oh so well. I’ll send you some fresh, clean mountain air (minus the campfire smoke) through cyberspace. I appreciate your constant support my friend and hope that you are feeling the best that is possible now and in the week ahead.;)