All Aboard; It’s the Pain Train

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All aboard! It’s the Pain Train. My seat is permanent, my choices are few and I can’t go to the bar car, the toilet or be around others without making a huge fuss, therefore I choose to stay in my assigned seat. No one can help me; I own this pain. Looking out the window the world flies past and life is taking off at a speed I can’t cope with. The conductor is my nervous system colliding with my brain’s reactions to every tiny bit of stimulus. I see you and I care but I am off track and my brain signals are traveling at such a rate that I do not understand the smallest of conversations or even my own thoughts. This is not the train anyone with any healthy lifestyle wants to board; but it is packed. People are laying in the aisles and hoping for assistance, recognition and acceptance. Chronic Pain Syndrome or CPS is an official diagnosis now by WHO, (no not the band) , rather the World Health Organization. I was recently diagnosed with a severe form that has caused me to lose my vocabulary, shortened my fuses so to speak causing me to be easily startled, reacting with a scream or even sobbing as if the whole world is ending. In some ways, on some days, it actually does feel like a hopeless battle to live this life and ride this train. I have a collision of diagnosis. Degenerative Disc Disease, an inherited condition that I’ve known of since I was in my twenties turned from a back ache after gardening into the most severe form fast in my late forties. At that time I was given 20mg patches of morphine that I changed every few days. I believed this was as bad as it could get then. Yet, I was swimming, walking and riding my bicycle still. I also was cooking which I love to do. From there I slowly began to develop boney growths jutting inward toward my throat and spinal cord and I was told I had unfortunatly signs of early onset osteoporosis. I was put on a bone mineral supplement and more vitamin D and calcium was prescribed. Can’t get worse than this I thought, until it did. A spinal specialist said there was nothing that could be done. I not only have scoliosis, but also severe arthritis and various deformations head to toe. Earlier I had been sent to a university hospital rheumatologist who diagnosed me with fibromyagia, something I would not accept or grasp until I had the most severe flare I have ever had recenty. ( I am recooping now yet have a lot of work to be steadily on my feet again). The Dr.’s who upped the morphine years ago are unable to treat me now. I will say it barely takes the edge off on 30mgs daily slow release which includes fast acting oxynorm up to three times a day, muscle relaxants, anti-depressants, blah blah blah. The more boney growths, the worse my spine becomes. Earlier I was walking with a rolater and or crutches or a cane. Sitting was and remains one of my worst enemies but as I said, my seat is assigned for life. I then contracted covid in March of this year after three vaccinations; the very first time I went out into the city I caught it. I have not regained my strength, have developed chronic asthma and sleep as if in a coma or swing to the other extreme, experiencing severe insomnia and nothing will knock me out. My head hurts daily, I now have tinnitus and vision issues. The train chugs along and now I am in cue for a pain specialist rehabilitation hospital north of Stockholm. I never write about physical pain because I don’t know how to project the feeling with words so that others understand. I know that a really nice man, the husband of an American friend said the right thing one time years ago and it stuck with me. “Hello, it’s nice to see you are having what looks like a relatively good day”. It meant the world that someone knew my good days were fewer than my bad and that he also understood people like me don’t get better, we are chronically living in a state of pain that can ease up a bit but never leaves us completely blissful. For all the readers and writers out there who are living with CPS, I understand you now. I am sorry that I did not understand what my fellow passengers were experiencing until now. Mental health is important to address for everyone and somehow I let mine fall apart. Hopefully after my stay in the Pain Rehabilitation hospital (Uppsala University Hospital) I will be able to read with focus, write with more clarity, listen to others and converse, start walking for my overall health and socializing a bit more with those who have hung in there with me. I will still ride the train with you and I will try to reach out to all of you much more. Remember, you are not alone. We are on board together.

Fallen Angel; Accepting I can not Fly Alone

In this show, on this stage, a giant yet fragile marionette is lowered slowly; as the black velvet curtains part one can see what appears to be an angel flying, sustaining herself with her own elegant wings; no one would surmise that she was not magical at all, nor that she was so delicate that any moment she could break into bits destroying the opening act. She was held together like all puppets with strings attached to, well every part of her. Above her was a monster both good and bad, one who could help her move and also yank her off stage without notice, ending her performance so swiftly that she lost her breath. The monster was made of a slew of chemicals, medicinal ones that gave her just enough energy to be amongst others and move. Some days the monster although well meaning didn’t move her at all. The monster called in her true protector, her friend since childhood with hopes he could guide her with the grief she swam in. Rock said, “other’s are also struggling to perform, to get out and do their best, to live with no strings attached. Some strings are superficial and some are real. You must learn to accept the monster made from the God’s as your friend to live a better life; Morpheus is the monster’s name.” Although Morpheus was powerful, some days even he was not enough. Some days Morpheus lifted her with ease and she glided across the stage, in flight with next to no pain and yet other times she lay in a wooden, splintered heap in her lonely marionette box. Her wings were her freedom. When she was flying she smiled and saw the world as a beautiful place despite it’s absurdities, when her wings ached and she couldn’t even flutter she sank deeper into her box and Morpheus would close her eyes awhile and there she would stay, dreaming of the old days when she flew and saw green tree tops with baby bird’s nests, lover’s hand in hand sitting on picnic blankets and all the colours on the spectrum called Life.

Memoirs in a Mirror; Ageless Love

 Memoirs in the Mirror
Photo by Magnus Polla

As I write about broken heart’s being mended with Al Green singing in the background I am ushered into my most vulnerable piece of self. Love is renewable and must be revisited day after day, year after year. Rock was and is still very protective of my shattered and deepest self yet LOVE is a journey I once ran through, jumped over waves for and got lost in so deeply that I could not find my way back to who I am. I still inhale the smell of you even when you aren’t near and I still get jealous after nearly two decades of “us”. Remember our passionate first meeting? An autumn blend of whimsical laughter, intellectual virility, a chemistry so robust with first love sensations and our everlasting amusements, surely you recall? What about the sunsets in Amalfi, sunrises by the sea and how I looked across the table over coffee in to your eyes on the veranda and felt like I could fall out of my chair? Now in the mirror a version of me I am still trying to get to know. I hold on to our kisses in the lush Swedish forests, our dancing in the living room at midnight on New Year’s eve and the smile in your eyes when I once did something so simple as to make a hearty, warm soup from my heart to feed us. I can feel as if I am losing this battle with my body; I am not afraid of my pain, but of yours. Must you keep picking me up off the floor or guiding me when my balance is askew? Will I hold you back from finding out more about yourself? I want to walk through our life of mirrors and see everyday we had together; the tipsy Bloody Mary Sunday brunch in Andersonville, the heartache when we could not be together, you holding me in your arms and saying, “you’re the girl I always wanted”. I say “Bravo” for the way we have blended our differences into a special cocktail that tastes a tad like southern moonshine with a bit of je ne sais quoi. You know most all of me, my fears of losing those I love, my need to hold on and never let go of anyone and how I wish my childhood could be redone. You know how much I adored my big family, my mother and my insistance that we are not at all alike (but we are). You know how I hate feeling left behind, the story of not getting matching pajamas like my sisters, my pathetic need to repeat stories of my emotional scars, my greatest mentors and my need to have a best friend always and how afraid I am to be alone. You know I love pigs and bunnies and how I want to save the world around me, and how easily I cry when I realise I can’t even save myself. You know how to fix my drugs, treat my physical pain, how to handle my anger at myself for ruining plans, burning food, forgetting I am running a bath, forgetting one language and speaking another and you are still here, loving me despite my body’s falter, my mind forgetting my intentions. I lose my self into old songs, red wine and wish I coud promise to be here a long, long time. You are the boy of my dreams, too. I love you. I love you. I love you. You know I am repetitive.

Unlock My Sanctuary

It’s key is hidden, I misplaced it among my own feelings again. I am alone inside a body that lets me down, hurts me and I can’t get out. I see me walking like Jesus across the sea and then sink without a fight, drowning in my mysterious mind. I am so grateful yet undeserving of salvation. Sanctuaries for Love should be everywhere, not just for those seeking redemption from our earthly delights that were indulgent or a sinful play that some grand Creator would frown upon. The gates are always open to love more, release ourselves from our own arrogant beliefs. I am burdened by carrying me through life; how then can I carry some one else? I see a white wooden columned southern USA colonial home with a long drive and weeping willows, a big porch and spinning ceiling fans. I am the youngest broken one there and I try to cheer my southern company with kind regards and smiles. I am in a sanctuary where I no longer feel like a worthless woman. I make a difference because I am not in the agony that I rise and face each morning. I can quit because I will no longer ruin other’s good times or my own. I can be quiet. I can be kept and have tea and maybe sometimes I will wonder about Jesus and God and bad and good but I will be my own judge as my heart is pure.

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Romancing Pain

Dancing with Eyes Closed; Accepting Pain as Part of Me.

In the morning there are yellow dandelions surrounding me, lifting me up with a wash of spring hope. I am rinsed in the sun’s warm rays and feel determined. I always think I will feel better than I actually do. Is that my own stupidity or perpetual stubbornness? I dress and make it to the rich Italian red wine sofa and prop my legs up on a stack of pillows. The pain starts just after I proclaim, “I am better!” and I succumb to my surroundings. The walls are a light gray panel of wood, the ceiling white, the old barn’s tin roof I can see from the sofa is a rusty burnt red with brown dried clumps of moss separating it into unsightly squares. My pain I feel is visualized as an electric zap of steel, sharp silver, shooting up my legs and my silent scream is a maze of terrestrial hues. Pain shares with me every drop of it’s colour, of it’s beauty and it’s sorrow; like the northern lights and milky way it is so breath taking and hard to believe that it is real. Living in a state of chronic pain is anxiety provoking. My mind is a puree of sounds and I am often perplexed. Why can’t I be fixed? Why must my colours be so rare and overworked? My self portrait is black and white as I spilt any hope of beauty out onto the porous surface beneath me. “My pain”, I said to the chronic pain psychologist, “I’ve accepted.” My mind lied that day. I hate it, I hate my body and my bruises both superficial and within. No amount of prayer or drugs give me peace and like the wild scribbling made by a toddler with crayons I lay in a chaos of colour; I am a bottle with layers of dripping wax from many different tints of candles. I am beneath the surface, beneath the beauty, buried in a colour of pain. My eyes close and I stare at the daylight as if my eyelids were window shades. I don’t see why I should open my eyes except to write this pathetic complaint that haunts me. I want to be a happy rainbow one more time. One more moment of brilliance is all I ask. Like any desperate lover, Pain beckons me back, takes hold of me and says, ” I will never leave you alone again.”

ROCK

The stone is silent, not mute. It was buried deep within my being, awaiting it´s truth to be heard and seen. I am ROCK solid. The one some cast away at sea or try to hide. I carry Truth. Truth that is gritty makes some turn away. Are you strong enough to stay?