When I Get Well, I’m . . .

When I get well, I’m going to sew again. Curtains, bags, big heavy fabrics, things cut on the bias, things with mismatched patterns and textures. I’m going to make jewelry. And write. My brain will work so well, that I’ll be able to harness the ideas that I have and make them sing out into the world.

I’m going to go out to hear bands. Like The Dentists and The New Standards. I’m going to go out for dinner at places where I don’t need to worry about how stinky the clientele might be with their party clothes and their perfume.

Oh. Parties. I think the last party I went to was when my baby was still a baby. I wore him on my back, or in a sling. And he slept from the overwhelm.

When I get well, I will take my kids to park classes and swimming lessons and tae kwon do. I will go on vacations and have kids over to play and he will be invited to playdates and birthday parties and people will expect us.

I will go to church at whatever time I want. Sit where I want. Talk to people when I want, even if they were a little heavy handed on the scent before they left the house.

I will go to the Holland Neighborhood Hotdish Event. Because I’ve missed it the last 3 years. Because I love it. Because I miss my community. Because I’ve gone invisible. And I’ll wear my handmade bags on my shoulder. My strong, working shoulder. I will even carry a hardcover book by Joyce Carol Oates in the bag. Because I’m strong. And I can.

I’ll go back to yoga and pay attention to how much my fascia is damaged, rather than trying to override it and make it do the poses the way they are supposed to be done. I will kick to handstand. And do a backbend. I will.

And I will teach. Oh, how I will teach. I’ll have salons for teenagers about sex. Yoga for boys with lose joints. Psychic Development classes. Energy Work classes. I will develop programs and build community and support chronically ill artists. And I will teach dark, dark, dark fiction. Because it is in the dark that we find the strength of the light.

I will volunteer at KFAI. I’ll even clean the bathrooms. I don’t care. I just want to be there, watching radio be made. Radio without Boundaries.

I want to be tagged in a photo on facebook because I’ve been spotted in the world. It’s been about 2 years now. Maybe longer.

I intend to ride a bike, or maybe a trike. And buy some new clothes. And live on the edge and wear sandals instead of my orthopedic inserts.

I will make theater. Not only about Lyme, but about other things. I will audition to be in the 10 minute play festival at Bedlam Theatre. I will apply for grants and make art and sing (metaphorically) in the world.

My friendships will thrive. Even the ones that have fallen away due to judgment or neglect or misunderstanding or bad feelings.

I will someday believe in a higher power of some sort. One that holds ME up, not just the other people in the world who are more deserving. That lie will vanish and I will feel supported.

I will one day be able to pay forward all of the emotional/physical/financial gifts our family has received in the past three years.

I will live to see my children graduation high school, and college and find partners and most importantly, GET WELL. Because I know that they can.

My trees will be cut down, and new ones replaced. My perennial garden, that is tended very little, will be flourishing, and I will remember the tears I shed when other people needed to do my weeding and splitting and planting. And I will grow brussel sprouts. And have chickens.

Some day, I will feel good. Well. And I will be in a place of contentment. I will have days where there is nothing to heal, nothing to fix, and nothing I need to figure out.

I want that day to be today. It isn’t. But maybe it will be tomorrow. I just hold the hope.


8 responses to “When I Get Well, I’m . . .

  1. tears Jeanne…. This is beautiful and something similar I have been doing but in my journal. Keep this near to your heart and never let it go. I have been dreaming of the stage, smelling, touching it, performing on it again (in my head of course!)… yesterday I get an email from a dear friend that I love and who is a fabulous director telling me he needed a “great comedic actress just like you” to please call him about the role. I cried so hard because I can barely sit in a theatre now to watch a show, never mind be performing. It is now just a dream, something that I used to easily do everyday like brushing my teeth.. now it is a dream in my head, a fantasy. Love you! ❤

  2. Jeanne…so good to have you blogging again, I’ve missed your voice very much.

    Big transitions here with my separation, move from NY to an ‘economic exile’ in SC, trying to start a life again at 58, now solo. Physically what is working for me is an herbal treatment and zapping, both now into the second year, heavy duty vitamin therapy and chiropractic care. I’m at about 60 – 70%, which is a level at which one can be strategically productive, though spent much of last year at about 70 – 80%, which was wonderful. It’s time to take on a stronger zap, almost more of a Rife, which should boost the numbers.

    So glad you’re visualizing the hope and the dreams of your full life returning. I think we need to keep it alive, both what we have done and what we can do again. Wish I were closer to help you tend the perennials and keep the chickens. Love, respect, and support in the meantime…

  3. YOU are LOVED…
    even when you don’t FEEL it
    even if you can’t remember what it means to FEEL it
    even if you don’t BELIEVE it
    or KNOW it in your heart of hearts
    you ARE loved
    even if you don’t hear it in the breezes
    feel it in the twinkle of your loved ones eyes
    You are LOVED

    beyond all comprehension..
    it IS what is sustaining you
    keeping you from more than you can have nightmares about…
    you ARE..
    so loved
    so blessed
    such a blessing
    and so lovely

    not left, not forsook, even though your senses no longer sense it..

    i KNOW it
    believe it
    see it
    feel it..

    and embrace it.. and YOU

  4. Holy crap you are inspiring!!! The sun is shining here today in my ghetto college town, but I LOVE it (and not just because it is my birthday!), because I can’t wait until I am healthy again and can just do whatever the F I want!


  5. You are all amazing friends. Thank you for feeding my strength.

  6. I found your blog when looking at other posts on ‘relationships and living with a chronic illness’!! Thank you for sharing your wonderful thoughts with us; honest, sensitive, open, loving and hopeful.
    I too am a writer and singer living with FMS but my life is less limited than your own, so I know how blessed I am. Even so, it brings about those limitations that others find hard to accept, even though we, have no choice but to. Which brings me to my latest disappointment. Having found someone I thought was going to be a person who was going to be loving and supportive and love me for me, ended our relationship after two years as he felt there was a “lack of shared experiences” and more. It brings into sharp focus how selfish, weak and egotistic some people can behave. Faced with the daily dilemma we face, I wonder how they would cope?
    Having grieved for this relationship, I now feel pity for him to have thrown away something so precious. But I’m hopeful that time will bring it’s own healing for him too.
    As far as my own physical healing goes, I take it one day at a time, leaving expectation like a door ajar. But I’m able to, with careful management and pacing, teach a 2hr class once a week and still perform once in a while and of course I can write! Living alone helps with this, but it does isolate me. Like everyone else I’m sure, I have to work quite hard at maintaining close friendships, and although these are limited, I’m grateful for the loving friends I have.
    I try and live in the moment, be in the here and now, make each moment count, make a memory each day no matter how small it is, and giving myself positive affirmations, all helps.

    Keep dreaming, smiling, writing and getting through each day … I send you a poem… one of the few about my illness..


    If I came right out with it
    If I blurted it out
    you might overlook its significance
    or even me

    So I hand out palatable nougat for you to chew on
    but only when the need arises
    Without my props and supporting cast
    it’s a one woman show and impro

    But I forget to mention the bone graft from hip to spine
    the exhaustion and the daily grind
    convincing you and me, that I’m just fine.

    Ain’t life chronic the way it gets stuck between tongue and lip?

    Chris Hoskins 2008

    Stay strong
    With love

  7. Love this, Jeanne! Thank you.. beautiful.

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