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.
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.
A Dancer's Weep
Handwoven lace, spun from a magical spider’s web fashioned her posture; veiled were her dreams, old lover’s deceptions and all unbridled emotions. Before, as if in another life she had been the lead dancer, the one spinning to pretty notes, unwinding with the delicacy of her spirit. Poised, she leapt through memories both shiny like sapphire and fragile as opals. Around her was a still, mirroring pond of light. She was a lost feather, floating solo from high above, performing an impromptu pirouette and free falling in the breath of cool northern winds. Her eyes were stained with glassy ice blue tears which solidified as soon as they breeched from their ducts. Snowflakes flew around her and she became cold, landing hard upon the marbled stone beneath her. She lay there and closed her eyes. She wanted someone to stop the tinkling of a rhetorical melody from her own music box which continued to play beyond her control. She had broken her strongest leg, the one she used to lean on when avoiding painful lyrics that reminded her of flurrying youth. Her shadow was growing old and her desire to dance more began to fade. No hand came to help her up and no one knew that she lay in pain; truth be told she did not long for help. The ballerina knew she was doing all she could to mend her wounds and protect her future from being shattered. From the heavens the moonlight crystalized her beauty, shielding her from surrendering herself all together. Her strength although enervated, would call upon her to rise again. As all folkloric sagas have us to believe “amore-propre” is restored and the beast within is slain or out-witted, the beautiful one’s faith is redeemed, and the Prima donna always experiences a reawakening with butterflies swimming around her head and that which was her nemesis is obliterated. The ballerina in this story is glued carefully back together and placed en-pointe, center stage in a polished oak jewelry box; the golden key is wound and she spins ever so slowly as Lara’s Song resumes. Somewhere my love, within this broken Ballerina her own needs were forsaken without mirth; to see those she loved resuscitate their own dreams was a gift for she once again had an honorable purpose.
Batter, batter, SWING! LittleMe is Fine. Just Fine. she has landed in the far left field and sees her emotions and truth fly onto paper and form words that not a whole hell of a lot of humans care to see. She redirects her energy repeatedly to NOW. Mindfulness is becoming easier yet we all have days when we must sit on the bench and rethink our game. Lm loved listening to baseball with a very special elderly woman she once cared for. It was soothing and lightened the stagnancy of the moss green velvet drapes which broke the afternoon sunlight into tiny seedlings, highlighting the dust on the woman’s cluttered dressing table. Glass bottles with hints of perfume, a small basket of lipsticks and a silver hairbrush and comb for her silver long hair. Lm took the brush and tried to push it through her own thick light-brown and reddish locks then opened all the lipsticks to see and smell their colours. She went to the old, tired woman who was being held up by several pillows and touched her hand, checked her pulse and then took a moist sponge on a stick and carefully wiped around her mouth and lips. The woman smiled a bit. Lm then took lotion and rubbed her hands gently as her hands were covered in a thin layer of bruised, rice paper thin skin. The woman smiled a bit more. Next, Lm brushed her long and thin white hair and pinned it up nicely and picked out a soft sea berry red for her lips. She held the mirror that matched the soft hair brush up to the woman’s face and asked her to look. The woman opened her eyes and said, “you are so beautiful”. Lm said her name which was always prefaced with Mrs. and the woman opened her eyes again. Lm held up a small plastic syringe and pressed an electrolyte mixture under the woman’s tongue and held her neck from behind and asked her to swallow. The woman said again “you are so beautiful”. Lm reminded the fragile woman that in the mirror was her face, not Lm’s, then the woman said, “I know what I look like, I have seen my face in mirrors for over ninety years.” Lm smiled and tuned in the baseball game; it was the Baltimore Orioles against who cares. Mrs. “I know what I look like” began to drift into slumber and had a soothing baby like snore. Lm watched as the sunset, how the shadows changed and her mind was restless; she turned on lamps adorned with knotted tassels and costume gems and the soft light comforted her. The Orioles were tied and she was drawn to study her own face in the mirror, it was still young, perhaps twenty-seven and her white uniform fit perfectly. She saw her eyes in a way that no one else could, the pain and fear, the worry and silenced emotions and turned away. What good is beauty without truth? She was running constantly in her mind away from her experiences with her now and then father, her self focused mother and clung to the shining bedrails which ensured Mrs. would be safe for the night. It would become an obsession of self examination, rewinding her memories and it would take thirty plus more decades to find her self. She knew nothing then. She only knew there was something hidden within her that had to be expelled so she could look at herself when she turned ninety and say, “you look beautiful”.
The best of me, you, them, us, and all is Hope. One steps in and out of light, some of us even crawl as we are so broken and dark within that we need others to pull, push and not give up on leading us into streaming rays of what many see as simple “Better-ness”. The closer we come to our own Truth, our ability to grow stronger begins. The realisation that most of the modular examples of humans do not want to go into the depths of who they are is a reality that the evolution of western societies have placed us in. We are “what we do”. We are subjected to a deceptive construct of expectations and judgements. What is really inside your heart, your soul, your mind? Can you say how you truly think, feel and free your voice for other’s to hear or is it too risky? In my five decades plus I have learned a little bit, but Oh! there is so much more to take in. I discover so much more in each moment that I am hypnotised into being a servant of “More”. More than I knew this morning, more than I knew yesterday and I laugh at the rays of sunlight dancing across my heart’s steady beat. I am a painting, a structure framed in bone and my emotions blend into my visual perception of what colour truly is. I am orange, like a clementine imported from Spain. I am as yellow as the lemons which fall along the streets of Amalfi, green as the the stem of a daffodil. I can be black as the coffee grounds I push through the petite glass press each morning, or as rich of a brown as the newly turned soil where the potatoes and garlic are growing now. I, too can be a shade of blue that only can be seen near dusk over the forest’s treeline where night and day blend into a pale magical phase. My palette is as varied as my experiences, some days I feel wonderfully whimsical as a lilac and others I am like the brooding, burnt, melancholy ochre dug from the dry sun baked earth in Morocco; this is my portrait and it changes as my life flows from one hour to the next. When in physical pain I find the most healing hues are tossed like a salad, spread across me like an old quilt and as they dance my suffering returns to gratitude. How did living with severe pain lead me to being thankful? What began as a diagnosis, a prognosis and then a turbulent period of misery led me to my inner oasis.
My ego was a rhinoceros ready to kill all that made me feel good. I sank in deep mud and stayed there as if cooling down on the banks of the Nile yet my spirit’s nakedness unleashed a depression that no drug could take away. I had to rip my own canvas apart, rebuild who I could or would be and it took years. My fifth decade will always be one of my life’s most valuable periods of renewal. I have discovered that my pain led to the closing of many doors that should have been locked years ago. During this new abstract version of myself I would dwell on my losses, the life I led being stolen from underneath me and envy able bodied friends who slowly were shed from my company. No more deep forest dives, no more hiking for miles and climbing up mountains or cross country skiing; the smallest of movements need to be considered before engaging in every single step of every single day. “Guess-timating” what sort of pain level I will endure from any decision made each day has led me to sculpt a very fine mental map that is virtually traveling within me every second. I did not know in those early days there would be a shift in my endurance and mental health. In the NOW, most days I can not sit at all to eat with my family much less indulge in my love of cooking and painting. I can rarely sit for a dinner party, nor manage restoring a sense of order in my home, lift a potted plant, follow a conversation, make my bed, sleep soundly, wake fresh and be ready for a productive day, meaning how I once described the essence of productivity. I had found my new sketch repugnant, my emotions were entangled balls of wool and I quit. I just quit. Whilst laying in the quiet of each day, I began to face my deepest Truth, a kind of pain so blinding that it was as if I were staring directly into the sun with my eyelids pinned back as intentional torcher. All I had run from, all I had never wanted to face lay with me in my muddy rhinoceros hole. I remembered. And I remembered more and more each day. There was no where to hide and I had to lie next to my past glaring at me night after night, dream after dream. I will never be able to give this process enough credit for saving my NOW. I had to be heard, seen, held and pulled up and it would take re-breaking my heart one memory at a time and a team of guides to rescue my future. The cork popped and like an unexpected flash of rain I would be soaked in seconds with what I assigned a name, terminal despair, or TD. I knew I had to break through my mind’s window, walk on shattered glass, and return to my truest self. In doing so I would fall into the arms of my grandmother’s spirit, call on wise women and old souls to push me into the tiniest bit of light and learn to trust enough to honestly love another human being without resurrecting fear. Fear of betrayal, of being left, of not being good enough. The one who managed to pull me into the light a little more each day was ROCK, my alter ego, and the whispering spirit of Nature’s call to revisit her beauty each day; her majestic sunrises, her wild North Sea storms that are never to be reckoned with and her profound ability to try and recover from humankind’s blatant abuse. I meshed my being with the fight Mother Nature is up against each day as her water’s become spoiled by selfish beings, as her protective layer in our atmosphere dissipates and she keeps reminding me to engage in “Bettering” myself in any way I can. I am part of a rainbow, I am a healer and she is mine. I also have learned that no matter what I have been through, I am in charge of the rest of my life. I still doubt if I am loved as much as I want to be, I still have weak streaks but the colours of me and my new portrait are fierce. And on the horizon I can see that my final sunset will be peaceful. Blessed Be.
ROCK continues to narrate before, NOW and onward.
When the door opened Love ushered us in; outside we left the weights of REALSTUFFbyREALMe. An immediate resurrection of man and wife. We greet with our eyes and embrace and feel the Gatekeeper’s steadfast grace of steel.
Were we once a humble pair splitting wood in the frosty air? Could I have worn the apron with many pockets, dorned our love around my neck in a tiny locket? Could you have lit the lamps around these grounds, secured the doors and made dutiful rounds? Was I boiling coffee on the woodstove and mending your clothes, warming your supper with my lips painted rose? Did we sit at this table and you take my hand, give me a kiss and an engagment band? Were we lovers who lied in this feathered bed, content with simplicity of the life we led? Did we transcend through time to resow our love, have we risen again or come from above? Endlessly you’ve taken my love, my heart and fears, you’ve kept me safe and dried my tears. The fire will burn for eternity, for you are my Gatekeeper and hold our key. Each time we visit this calm, safe place the door to our love is reopened with grace.
Cherry Tree with Swing
Adorn me with flowers of lace, ripe cherries and encircle me with scents of love. The sweat, the tears, the glory, the risks. Swing me high toward the heavens where beyond the morning sun lies hope. Protect my heart from the fierce winds that lash against the sea coast, from the melting ice of wronged lovers, the friend that walked away, the past that tries to rebirth into my now. Let the taste of love, desire and acceptance which has been buried shoot up from the womb of our ancient gardens; ones we continue to sow and harvest from and breech without returning blessing from our gifts. Let love be released into the hands of kindness, kept from the grip of cruel misers who want it all for themselves. All. For. Themselves. Swaddle my inner child and embrace my womanly strength. Amaze me with praise just once, for I fought so hard with unseen swords and I came to know this place in me that I alone am responsible for. My courage came from the roots of all women before me, the blood and laborous calloused hands of every color of flesh, every stealth victory that was not recognized by the lone observer. I am adorned with the wisdom of wise, weathered trees that are like the bones deep inside the earth that lie and listen to the new steps taken above. Steps to become stronger, better not best. With smooth velvet, sanguine and rich I pour back my beauty of life into the land that I borrow from our highness, our home, our clawed and traversed planet. Swing me high above the cherry tree so I can see the hope. Swing me higher than the swallows and let me see the love that is in waiting; grace my heart and heal my sorrow for I am unable to be truly conscious without soaring above the ugly minds of those who tried to break me and the venomous souls that are the works of greed. Adorn me with solace so I may give again and again and more. Again, again and more.
Words form and stop, quivering at my lips I say nothing. A rush of warmth rises inside my throat leaving me choking on my own emotions. A battle ensues between my psyche and my gutteral instincts. I divide my shivering heart into portions like raw meat and pack them away making sure they are placed so far away from resurfacing, breaking free and falling out of my mouth. I am the keeper’s key, the guardian of truth and I am aligned with no one, not even my own conscience. I see from behind, from above, below and further within Her, that is, Littleme. I see in my mirror ROCK and turn away in denial, never wanting my scarred outer skin to acknowledge it’s own shedding. I have heard among many other words of advice to let sleeping dogs lie, a rolling stone gathers no moss, somethings are to be put to rest; I lick my lips drenched in salty tears and feel sewn up with my secrets. I know that my only chance of survival is to let go of the words begging to be spoken, to follow in the steps walked before me and keep my head down. To be truly seen is not going to happen. No magical wand will be given to me so for now, for Lm I raise a white flag and surrender to the unresolved, the pointlessness of words that are chained within.
I really don’t like when I am lucid, full of clarity and on target and someone I love or care about is so far out in the left field that words are just as meaningless as a bad pitch in baseball; the batter walks to first base and it is glorified in an underdog way. To hit the ball and it land in the outfield without a doubt means a good run, sometimes third and the best of times a homerun. How do we manage our relationships with outfielder’s and there seemingly purposeless positions. Batter, batter Swing! The crowd cheers and everyone has a home team. What happens when the home team turns sour and distances themselves from the bigger picture? One snores, the other stays up writing and wondering how her major league Love and homerun hitter becomes so distant, callous and seems to just be playing the game for his/her self. I don’t need a homerun, just certainty that I am loved from base to base and cheered on even if I am the one who usually sits in the dug out waiting for a chance to make a grand slam. Baseball is so nostalgic especially on the radio. It makes me long for warm summer nights and a play by play commentator. It makes me feel safe even if I am a terrible player. My all star is asleep and I’m listening to him breathe; I guess tonight is 0-0. I am sad but know he will eventually be on the bench with me. I hate going to sleep with the score unsettled. Morning comes and the sun offers us a new day, one with new intentions, forgiveness and our love as always is anew.
I never saw me, much less Littleme, or myself even now as a valuable existence. My presence has been a seemingly huge burden to both of my parents for 58 years. I had the career woman breaking boundaries in a man’s world for my mother and a father who simply lied and recreated himself from one persona to another. Sad, a bit, yet he had a choice. He could have been honest and humbled but he responded to his poverty and his past with denial. My mother remains proud and honest and her success is all real, her own and no one can steal her accomplishments. Now I lay in some comfortable surroundings in a beautiful city and the war has brought us to our knees. In Sweden we see and welcome more blue and yellow, refugees who are without a choice. They are proud and strong and simultaneously fearful. Who the hell am I to care about my shitty father, my semi siblings who never call or inquire about my family’s reality? Here I am, a refugee of another kind. A foreign land with my true love, my only child and not one person back home calls to see how I am. Who am I? A woman, a girl, a mother, sister and wife and all I want is to help others feel love, hope and security. The Russians are not bad. Their dictator stole their souls and forced this invasion. Ukrainian women and children flock together and stream into our world but I feel only guilt. Why? Because I never can save enough people from life’s dangerous blows. I barely saved me. God give us a break please. Help. Lead me to solace and peace in my heart so I can stand tall for others.