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.
My husband went into the kitchen to get me two Naproxen Sodium tablets this morning. (My neck and its problems have flared.) My daughter was in the kitchen emptying the dishwasher. They started talking. As my husband’s attention focused on their conversation, the tablets in his hand, that were suppose to end up in my stomach, ended up in his. Oops! Thank goodness he wasn’t holding two of my prescription tablets. He probably wouldn’t have made it to work and would have needed some care himself.
This has got me thinking of more “hazards” and sometimes amusing changes that my husband faces living with and caring for me:
-Putting his back out having to lift chunky me off the floor
-When in a work phone meeting (he works from home) and I’m suddenly shot by severe pain, having my unsavory expletives fly out to his coworkers ears
-Waking up in the middle of the night near suffocation due to one of my abundance of support pillows falling on his face
-Jumping every time his cell phone rings thinking its me needing him to pick me up off the floor
-Morphing his nature from “typical guy” without a clue about “woman attire” to a rather metro-sexual fashion expert– learning from having to pick out my outfits when I can’t…this includes the right shoes to go with them and the correct garments to wear underneath.
-Being approached by single woman who think he’s a single man, because outside of home and attending events, he’s solo most the time. (Wait that one’s a hazard for me!)
I know how fortunate I am to have this guy to help me along this chronic illness journey. It can get pretty serious taking care of someone who is sick and sometimes it can be darn funny! Feel free to share your own stories. (If you are one of those tough cookies who are a care-giver to yourself…maybe you have a story about a hazard you’ve encountered in doing so.)
*Hey its almost the fourth of July. I’ll be tucked away in a nest of blankets in the quietest room in the house when the fireworks go off–our bathroom. I miss our dog who passed two years ago, as he couldn’t tolerate the fourth of July noises either and would hide away with me. Here’s to all of our CNS’s staying as soothed as possible this weekend and to feeling well enough to have some fun.
Warning implosion Imminent. I am a barometer (no I am not delusional). I have an actual barometer up on my bookshelves to prove it. Everytime with absolute consistency, when the pressure shoots up really high or does a quick change on that barometer, I get an “Implosion Imminent” headache. This particular headache makes me want to scream for someone to drill a hole in my skull so that whatever is pressing on my brain will drain out and I can feel like me again.
If you are a subscribed to my blog, you probably noticed an email with a post link, that if you clicked to read it, the post wasn’t there. I have to blame this on the pressure as well. I decided to delete it, as my usual pretty darn happy mood becomes a “I hate what I wrote” mood…a “hate lots of things” mood.
I learned recently that the contents of my neck, including my spinal cord are a bit of a mess…extreme narrowing of the spinal canal, severe intremittent spinal cord compression and some degnerative disc disease mixed in. Most likely the cause of this headache is a build up of cerebral spinal fluid pushing on my brain, due to the swelling of my neck parts not letting much of the fluid flow downward.
Today my son and his family move in. I have been feeling not only peaceful about this the last couple days, but am finding myself looking forward to this new adventure we are all going to share. I do not want to have this headache today. I never want to have it, but today is a worse day than usual to have it. My granddaughter is going to need me to hang out with her while her mom and dad move in and I want to be able to smile back at her when she smiles at me…
A side effect that accompanies this headache is grumpiness if you haven’t figured that out by now. I’m not usually a “grumpy” sort, but oh I am when my head is imploding. I just asked my husband for a metaphor that describes me when I’m in the midst of one of these headaches. The first word out of his mouth I can not write because this is a PG blog. Hint, it starts with a B.
Okay, perhaps it is a good thing I deleted the previous post–it was all poetic and philosophical and not at all in line with my “status” today. (Funny how that word now belongs to Facebook). Watch out Facebook I’ll start grumbling about you too.
I’m keeping it real today. Real is this pain makes me feel that I am on the cuspid of going insane or at least driving everyone around me into insanity. Feel free to share, if you’re a barometer, if you have severe pressure headaches, if you have similar spinal cord compression or know someone who does, or are in off the scale pain in a place other than your head and just need to vent.
I want to apologize for my grumbly grouchy complaining…but I’m going to hold myself back and keep it real. Grumpy but sincere wishes that your weekend does not take you into levels of pain that provoke non-PG metaphors. This headache will pass and when it does comfort will feel awesome. That’s the flip-side (for real) of pain; comfort feels awesome!
Pillows
by, Kerry Ryan-Kuhn
Pillows behind my neck
Pillows beneath my arms and thighs
Pillows brought in with me
…when I go out to dine
Pillows strewn on the sofa
Pillows slewn across the bed
Pillows holding up my life
…my life with chronic illness
Can anyone else relate to this guy? I’m laying here supported by what seems a million, trillion, zillion, pillows. If I move from bed to sofa, or sofa to bed, they have to come too. We even keep a couple pillows in our truck cab. My husband hates it because he has to help me move the pillows from sofa to bed or from bed to sofa. (I think its also a known fact that a whole lot of men hate pillows (especially decorative ones)… even if they have nothing to do with holding their partner up.)
Today, I’m supposed to be resting and doing nothing else but resting on all these pillows. Its an extra weak muscle day, a neck needs support day and vision blurry day. I was trying hard not to get on the computer, crochet, do anything that requires my eyesight, flexion of my neck, or use of my respiratory muscles.
I got so bored that I did everything I’m not supposed to do. I wrote the silly poem, set up this silly picture, and wrote this silly post. Thank goodness I kept from singing a silly song (which uses respiratory muscles and gets me into breathing trouble. This would be followed by being in trouble with my husband because he would have to get me all set up on pillows in a whole different configuration).
Do you have “pillow mania” 
If so, mild, moderate or severe
