Release pain, sadness
brittle bones, fluid in lungs
let my body fly.
Bobbing laughter, rolls
aching cheeks, mouths wide as O’s
Release pain, sadness
brittle bones, fluid in lungs
let my body fly.
Bobbing laughter, rolls
aching cheeks, mouths wide as O’s
Circle of Life: Death & Rebirth
This is the time for introspection, to put things in order not just for my house, but for me. My life lesson: I have clung to old friendships far too long, they are dead, like the crumpled crisp brown leaves on the yard. Friendships where I am the only one who is trying. You can’t force a friendship and your real friends, your true friends are always there. “The past” is a nice memory not a basis for friendship.
It is the second week of November, I look out my window and see gray skies and naked trees. There is no more sun peeking from behind blue skies, I mourn the sunshine, the flowers, the bright, orange, red, yellow leaves of the Fall that used to embrace the trees. What was once my favorite season is now seen as the precursor to the worst season, Winter.
Winter is on its way, people are dismissive and say “add layers of clothing” as they stuff themselves into scarves and hats, mittens and feel warmer but not me and not anyone who shares the chronic illness of Fibromyalgia and Hashimoto’s Disease. Those words taunt us, they are a joke, a cruel comedy, a farce. Nothing helps, the winter chill goes through our bones and latches on like a one huge tick, sucking blood. We are always exhausted, we have no energy, we have what seems like the flu without the fever, every day of our lives. In the winter our bones and muscles are stiff, unyielding and painful.
Many times I don’t get dressed. My nightgown becomes my party dress and my pajamas serve as my jeans and sneakers. I know when I am in a ” Fibro Flare” when I cannot wear anything, that strains against my body. My body is bloated and the jeans make angry red imprints on my stomach even though they are the right size for me. If I have to be outside, as soon as I come home I literally rip the tight, restricting clothing off, my bra, my pants and change into loose, soft pajama bottoms and a well-worn tee-shirt. It is only then I can breathe. To people with chronic pain, Winter is a slow death, a Tragedy.
After a long, bleak winter, when the temperatures get higher and we have weeks of rain, my body and mind change. My body hurts because of the dampness and the changing weather but my heart knows that soon I will see buds springing from the ground to show off the first fashions of Spring. One day out of the corner of my eye, I see several bright, green buds pushing their way from the deep, dark earth. It is the promise of Spring fulfilled, crocuses have pushed their way above ground: Hope. Once the crocuses have sprung forth, soon we will see the burst of color dancing before our eyes. It is a ballet I love to watch. I never get bored. In a matter of days the forsythia bush in my back yard has sprouted brilliant, bright yellow lights, buds and I know that we are safe and loved.
One day, the sun pulls out its lazy arms and stretches, beams its beautiful smile and soars to the top of a deep blue sky. It is officially Summer, It is time to Rejoice, to take advantage of every single day that we have been given, a reprieve, from pain, from gloominess, a treat. I enjoy the summer as much as I can. Even though extreme heat is not good for chronic pain patients, it is good for my soul to look outside and see the painting of flowers and sun and hear the laughter of children riding their bicycles in the neighborhood. The sun, makes me happy, it does affect my mood. It softens the world around us, like a soft, romantic filter on an otherwise hard life. I am grateful for the sun, every single day, it is time to Celebrate with friends: joyous laughter, food, children selling lemonade, dogs running around outside, people holding hands. This would be my final act.
We tiptoe in, mostly we avoid eye contact but if we make it we acknowledge it quickly with a nod of our heads; dressed in white towels, the room is absolutely silent. Nobody breaks these unwritten rules either, you just know them. No talking in the sauna. Not one word. Someone leaves, they don’t say “good-bye and have a nice weekend,” that would be against the rules. ” She exits silently, closes the door quickly behind her and disappears into the locker room.
We know the procedure, even if it is our first time, we know what to do and what not to do. Is it in our genes? How else would we know? Perhaps it’s passed down from our mothers? I have seen the occasional aberration from the norm, but mostly one evil look, or two, will silence the uneducated. Oh, they will get the message. Don’t do this again, if you want to chat, go to Starbucks.
I go after a swim, where I feel that I am getting some of the chemicals out of my body, making my body glow naturally with heat. I can only stay inside for about five minutes, there are no watches or clocks, you need to know your own body and your body tells you when it’s time to leave. Don’t fool around with that. Drink a bottle of water right away to hydrate your body. It’s your own, private club, or at least that’s what you pretend. Other women work painstakingly with their hair and hair dryers for a long time trying to straighten their hair, but once I’ve showered I’m relieved to go out into the sunshine where my hair will curl naturally by the sun. I should pay more attention to make-up and clothing and accessories, I know, but to me, a little lipstick is all I do. It’s all I care to do.
Maybe the sauna takes us back to a place where there are no phones, no meetings, nothing to do in today’s ever so quick, changing lives. I admit, I have a cell phone but only use it for my children, it is usually turned off. Perhaps the sauna brings me back to the quiet, to the way things used to be, before the latest technology. I like it there.
Arthritic, gnarled witch fingers
crawl into my bloated stomach
weaving in and out, with fire lit thunder bolts
pounding their way through my blood engorged arteries.
I want to scream for it to stop and I do
but no words come out.
I hear the words perfectly pegged with accuracy but no one else can,
as they lean into me, their black eyes engorged, their breath hot on my face.
I am living in the deep, dark labyrinth where there is
no beginning and no end just twisted corners turned around.
The veins on my hands pop up aqua blue
against milky white skin that is painfully translucent.
Breathing in labored breaths,
I swing my torso around and tuck it into my body cave, fatty, yellow globules mixed together.
Tonight, there are no answers, just questions and mind numbing
sadness with extraordinary swells of sweating fear.
my head is aching, laser like thunder striking inside my brain and down the right side of my face in a fast repetitive motion. don’t move, there, up, left, stay still. darts are being thrown directly into my eye by this rapid fire machine gun. a special hateful drop is given to me at the end for my shattered eye, throwing me, head first, down the crooked, chipped stairs straight to a migraine in progress. doctor had to cut iris, no anasthesia and it was right near the nerves of my eye. lucky us fibromyalagia patients come prepared, had one old pain pill in my crusty, gray bag that has too many confusing pockets. the medicine did nothing. i have been suffering for too long, in twenty years, my dr. boasts he has never had a patient like me before. i feel like i should at least win a prize or break down and cry uncontrollably. maybe both.
i am finally home in bed now but my right eye is glued shut and i am not allowed to open this eye tonight. i am cold and have winter blankets trying to protect me from pain and chills but they don’t do a great job, yet they are trying so hard. blame me, i cry, blame me. i am the arbiter of all diseases chronic and unknown and erratic, unusual, the “rarely happens to……” it is not surprising that i don’t i feel special; tonight i have plenty of pity. problems with my eyes, ears, tmj, chronic pain, joint pain, foot pain, all the time. struggling not to become one with the symptoms but i feel like i’m wrestling with myself in thick, mixture of quicksand and mud. once in a while i want to just sink deep and let my breath come out slowly and simply float on top. i am tired of fighting, i’m tired of the pain. i just want the pain concerto to cease playing. tonight i feel pain on my pain. if my head wasn’t above the blankets i would hide beneath them, though crying is difficult with just one eye.
who is this young stranger i ask from three feet and thirty years back. the one that used to shimmy in tight jeans and black leotards and confidence amid conversations of the psyche and e.e.cummings and the book review section of the ny times. i was a traveling girl until they clipped our wings; but most of all i was a dreamer.
my dog is sleeping peacefully on my feet. i woke up at 4 am today, perhaps with nerves but also with an incredibly optimistic attitude. optimism kicked me again in the face like a feisty pony named speed. i didn’t see the pain coming, speed kicked me from behind and sent me flying to the ground bruising every bone. every already aching bone and muscle.
i have all these strange, out of the ordinary afflictions but special is not something i feel. now i feel sad and sulky and in miserable pain. music which usually calms me grates on my raw nerves. stop complaining, i admonish, this is not life-threatening but it is painful and lonely as all hell. i miss my husband’s reassuring voice and soft, gentle hugs. i know i can survive on my own, always knew that, but it is nicer when he is there beside me, and not on a business trip, gently reaching for my hand. i miss normalcy if i even remember what that feels like.
i look forward to slow down the grumbling monster that is the pain in my head and shooting down half my face. why am i not normal. why are there bizarre afflictions attracted to me like bees to golden honey. i am too tired to shoo them away because i have been robbed of energy. so they stay, circling me, viscious black buzzards landing only for their meal and my life.
In the small, contained river, ringlets of water come to me, float away from me. I feel relaxed, my body is not betraying me now. There is silence in the house, just my breathing, in and out, with an occasional sigh from my contented old dog. I have spent three days and nights in bed, aching, pale, listless; every muscle and joint screaming in pain, tight as twisted steel. Now, there is a little comfort of mind and body intertwined. My music plays in the background, I’m listening to “My Immortal“; by Evanescence. It was my grief song and at the same time my healing song. I can listen to this song now without sobbing yet nine years ago when my father died, I crawled into a ball and wept every time I heard it. Sometimes time brings just a tiny bit of healing in increments as small as cells.
Many other days I am filled with questions and complaints but today they have been momentarily swept away. I try to keep my shoulders balanced so the tightness and stiffness will stay away. I do not want to be known as Fibromyalgia Girl. I want to be known as a woman with Fibromyalgia and not have the illness define me. Same too, I do not want to be Auto-immune Girl, Hashimoto Thyrioditis’ woman, The Woman with Chronic Pain. I am still the same person inside yet with physical limitations. Please, please, remember me.
When there is a day like today when I can release the labels and just be myself it is like winning a prize; a prize of peace. It is rare but on the days it does happen I am so relaxed I yawn automatically. Treasure this, I tell myself, this moment, this second, as long as it lasts; I know that they are merely moments of reprieve but I am grateful for them.
I am clean and polished, I want to organize, slowly this time, not like the crazy rush I did five days ago, punishing myself with aching limbs and so much stiffness I could barely walk down the stairs. I clutched the hand rail for support, for guidance, my jaws clenched, my hair pulled into an unforgiving, tight ponytail ; my body was stone and cement and there was no softness, no pull, no elasticity.
I swing my right leg, back and forth, keeping time to silent orchestration. The world outside is bright and bitter-blue cold. I have no interest in bracing myself and stiffening my body just to go out. I rather walk slowly through the rooms of my tiny, doll-size house and get reacquainted. ‘Hello, pen, hello, Bridget, the stuffed pink poodle, nice to see you again’. I am trying to breathe in even breaths but the more I try, the more I lose my relaxed rhythm. I decide that that’s okay; I refuse to worry.
Nothing has changed in the outside world so I know today is a gift for the internal me. I can’t make it happen anymore than I can make it stop. I am grateful for the breather, a vacation for an hour or two from body and mind. The jack hammers are on a break, questions are still unanswered, situations will ultimately resolve themselves. I am grateful for this one moment of peace.