Scott A. Cook - 50 Years of Story

Slow Burn – The Angry Side of Social

I have waited a very long time to voice the content of this article. It all began when I started to notice consistent changes in friends and colleagues of decades, people I never knew but followed and corporations I had no control over. Please be clear before you read: this article is strictly my opinion, born out of concern and written with nothing but love for all who read it. Namaste. ✎ “When did you last feel angry? Where were you when it started?“

Human Condition, Lifestyle, Opinion, Transformation / Scott A. Cook

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I Didn’t Disappear – I Transformed

Please note: This is a companion piece to my original Facebook post from November 1, 2025, “I’m Coming Out. Today.” For decades, I lived a vibrant, creative life; dancing, directing, choreographing, laughing with friends, and building a world I truly loved. But in 2015, everything changed. I was diagnosed with CIDP, a rare and incurable neurological disease that slowly stripped away my ability to walk, move, and even speak the way I used to. I’ve kept my illness private for years. But now, it’s time to share my story – not for pity, but for purpose. If you’ve ever lost the life you thought you’d have and had to find your way forward through the darkness …this is for you. The Part I Never Shared For most of my life, I’ve lived publicly – as a performer, director, creator, and lover of all things theatrical. Many of you know me from the Orlando Fringe Festival, from stages across the country, or from the magical moments we shared behind the curtain at Walt Disney World. My life was art, movement, storytelling, and connection. But there’s a part of my story I’ve never told. Not to my audiences, not to my colleagues, and not to the world. For twelve years, I carried this in silence. Only five of my closest friends knew. It’s time for that to change. The Diagnosis That Changed Everything In 2013, something in my body began to shift. Subtle at first, then alarming. Tingling in my limbs. Muscle weakness. Speech changes. Pain I couldn’t describe. Two years later, in 2015, came the diagnosis: Stage 5 CIDP (Chronic Inflammatory Demyelinating Polyradiculoneuropathy). Try saying that ten times fast! CIDP is a rare, progressive, and incurable neurological disease. Somewhere along the way, a virus hijacked my immune system, rewiring it to attack my peripheral nerves instead of protect them. What follows is muscle atrophy, loss of motor control and immobility, sensory dysfunction, extreme fatigue, and unrelenting nerve pain. In plain terms: I lost the ability to walk. To dance. To drive. My speech has changed. I can’t stand up to pee. I have to avoid crowds, lest I contract a virus or illness I can’t fight off. The body I lived in for 58 years …slowly disappeared. What I Lost — and What I Found I spent years mourning the life I once knew. The one with curtain calls and standing ovations. The one filled with motion and spontaneity. The one where my legs were reliable and my words were clear. There were days when grief was the only language I could speak. But somewhere in that darkness, something unexpected began to form – not a return to who I was, but a discovery of who I was becoming. I didn’t disappear. I transformed. Becoming an Agent of Change Over the past few years, I’ve chosen to become something new: a CIDP patient advocate, a mentor, and a storyteller of a different kind. Not on a stage, but on the page. Not in a theatre, but in the real, raw moments of life with a chronic illness. Here’s what I’ve learned: • We are never prepared when the unthinkable manifests. • We are never taught how to rebuild when everything we’ve known is stripped away. • But we can rebuild, even if the materials look completely unfamiliar. Today, I use a wheelchair or an ECV scooter any time I leave the house. Every day brings uncertainty – with my body, my voice, my energy. But I am still here. And the road I’m on, while harder than I ever imagined, has made me fiercely aware of just how much strength we carry when we have no choice but to find it. Why I’m Telling You Now For years, I kept this private. Why? • Because I didn’t want pity. I didn’t want apologies. I didn’t want to be seen differently. • Because I didn’t have the words – not yet. • And maybe, in some ways, I wasn’t ready to fully see the big picture myself. But the silence has grown too loud. And frankly, I’ve learned that telling your story is not weakness – it’s power. There are people out there right now, spinning in their own version of chaos. People with new diagnoses. People hiding pain. People afraid their world is unraveling. This blog is for them. It’s for you. It’s for anyone who’s ever felt like they’re vanishing from their own life, no matter what the reason. What You’ll Find Here Hot Mess Express is more than just your typical monetized, vomit-fest of words. It’s a ticket to the Circus of Life, a journey into the unknown Waters of Confusion and a Shit Shot of Joy to scream about from the top of Mt. Fuji. It will certainly cover my bizarre, never-ending story but you may find that it’s YOUR story, too! Here you’ll find: • Stories from the past 12 years: the good, the ugly, and the weird in-between • Resources for those living with CIDP or chronic illness • Thoughts on identity, grief, resilience, reinvention and the human condition • News on my books, short stories and other authorship writings • The occasional gallows humor, because if we can’t laugh, we’ll drown • Encouragement – not the “toxic positivity” kind, but the kind that says: you’re not alone • Anything Halloween or horror related (shout out to Halloween Horror Nights, Orlando, FL) I’m not here to sugarcoat this journey. Chronic illness is brutal. It’s isolating. It can make you question everything. But I’m also here to say: there’s life after the storm. A great life. Not the life you planned – maybe not the life you ever wanted – but a real, meaningful, defiant kind of life. To the Ones Still in the

Hot Mess, The Human Condition, Transformation, Truth / Scott A. Cook

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The Autumn Book of Dark Shadows

Opening Invocation 𐕣 Incantation XIII 𐕣 “Every season whispers. Some scream.” ⟬☾⟡⛤⟡☽⟭ Every year, as the August sun begins its slow surrender, I feel it again: the crack in the air, the rustle in the leaves, the scent of something older than memory. While others chase pumpkin spice and sweaters, I chase something far stranger: the portal between the ordinary and the uncanny. From August 29th to November 1st, my days blur into ritual. Films become sacraments. Candles and soaps become spell components. Decorations transform my world into a stage set for the macabre. I call this season not just autumn, but The Autumn Book of Dark Shadows – a living grimoire of the memories, obsessions, and enchantments that have shaped me since childhood. Each page is not written in ink, but in the marrow of memory, and every year, I turn to the pages again. Page I: Autumn on the Farm 𐕣 Incantation XIII 𐕣 “In cornfields deep, where shadows creep, The harvest hides what the children seek.” ⟬☾♄✶♄☽⟭ ✎ “The shadows on the corn stalks were taller than me.” I was a child among barns, fields, and the hiss of wind sweeping through cornstalks. It was there that I first believed in dark shadows – not metaphorical ones, but entities that seemed to linger just beyond my sight. The farm at dusk was not peaceful. It was alive with something unseen: footsteps in the leaf piles, whispers between the hay bales, strange lights shimmering at the tree line. At six years old, I knew autumn was magical, but I also knew it could be dangerous. Page II: Michael Myers 𐕣 Incantation XLVII 𐕣 “The Shape walks slow, yet never sleeps.He waits, he waits, he waits.” ⟬☾⛧†⛧☽⟭ ✎ “1978. Halloween. My initiation into terror. My first horror movie.” Halloween devastated me the first time I saw it. Free HBO. Eight years old. Alone. True story. Michael Myers did not just frighten me. He rewired me. That pale mask, that steady walk – it was as if the shadows outside my window had finally taken shape. To this day, I sometimes half-expect to look out into my yard on a cool October night and see him, standing there, silent, inevitable. It was not fear alone that bound me to him. It was obsession. That film transformed me from a scared little kid into a lifelong adult horror devotee. ✎ “It was the Boogeyman.” Page III: Hocus Pocus 𐕣 Incantation VIII 𐕣 “By candle’s flame, the black fire burns,The sisters rise, the wheel returns.” ⟬☾☿✶☿☽⟭ ✎ “The first bell toll of Samhain.” 1993 brought Hocus Pocus, and with it, a ritual. Every August 29th, it is the first film I play. It is my autumn incantation, a spell to unlock the doorway into Halloween. It is campy, yes, but it is also pure enchantment. The cobblestone streets, the black flame candle, the witches who never die. It all is Halloween, bottled into a perfect brew. And sometimes, I let myself slip into the fantasy that I am one of the characters, living in Salem, where magic is always waiting. Page IV: Trick ’r Treat 𐕣 Incantation XXIX 𐕣 “Keep the rules, or blood will flow,Sam is watching, this you know.” ⟬☾⛓◯⛓☽⟭ ✎ “Sam is the keeper of the rules.” Immediately after Hocus Pocus comes Trick ’r Treat. The ritual is precise. One film summons the whimsy; the other locks in the dread. Trick ’r Treat is not just a movie—it is folklore. It feels older than it is, stitched together from campfire tales and the bloodied pages of graphic novels. It reminds me that Halloween has rules, and that those rules are sacred. Break them, and you pay the price. Page V: Decorations on Cypress Street 𐕣 Incantation XCIV 𐕣 “Gravestones rise, the fog rolls in,A haunted house, where fears begin.” ⟬☾⌂✶⌂☽⟭ ✎ “Spooky House, loud whispers, candle glow.” As a young adult, I claimed a house on Cypress Street and turned it into a legend. Every October, our ¾-acre yard became a theater of shadows. Gravestones rose from the ground, fog machines breathed like dragons, skeletons rattled in the trees. The neighborhood christened us The Spooky House. There is a certain magic in creating not just decorations, but an atmosphere—a place where children screamed in delight, and adults lingered, remembering what it felt like to believe. Page VI: Candles & Soaps 𐕣 Incantation LXII 𐕣 “Apple’s bite and pumpkin flame,Scented smoke, the spirits claim.” ⟬☾╎✶╎☽⟭ ✎ “Aromas are portals to another dimension.” If visuals conjure the world, scents are what bind it. Autumn arrives in my home through wicks and wax. Bath & Body Works becomes my co-conspirator. Pumpkin Clove. Ghoul Friend. Wicked Vanilla Woods. These are not just fragrances. They are spells that seep into the walls, lingering long after October ends. I burn them as though they are offerings to the season itself. Page VII: Music of the Shadows 𐕣 Incantation III 𐕣 “Strike the keys, the violins cry,Ghosts awaken when echoes fly.” ⟬☾♩†♭☽⟭ ✎ “Every October has a soundtrack.” The days and nights are scored with soundtracks: Carpenter’s synthesizers, Goblin’s prog-horror riffs. But when I want to descend deeper, I turn to Midnight Syndicate and Nox Arcana. Their gothic instrumentals are not background. They are invocations. They transform ordinary rooms into haunted cathedrals, backyards into graveyards, kitchens into candlelit chapels of shadow. Their music is the heartbeat of my October rituals. The Final Page: Samhain’s Threshold 𐕣 Incantation LXXVII 𐕣 “On All Hallows, the veil grows thin,The shadows close, but call me in.” †☾⚰†⚰☽† ✎ “Nov 1: the book closes, but the shadows remain.” And then, as fast as it came, the season ends. November 1st arrives, and the veil closes. But not without residue. Every year, as I walk

Entertainment, Halloween, Horror, Lifestyle / Scott A. Cook

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The Oz Dossier – Declassified Files from a Tornado

Opening Brief The briefcase arrived unmarked. Corners split, tape frayed, its cardboard skin bruised as though it had tumbled through more than a postal route. Inside: onion-skin pages, mimeographed reports, memos stamped with red ink, and a case number I’d never seen before – OZ-01. Someone had filed Dorothy Gale and her companions not as fictions, but as witnesses in a contested investigation. Not as bedtime characters, but as participants in a world we were never meant to see. I was eight-years old when I first held The Wonderful Wizard of Oz in my hands for the first time. The pages smelled of dust and ancient magic. When I was twelve-years old, after a multitude of reads, I realized the book felt like contraband – like instructions disguised as story. Now, decades later, here was a file suggesting that what I felt as a child might not have been imagination at all. I’ve chosen to share excerpts from this dossier. Whether they are satire, forgery, fantasy, or proof, I cannot say. All I can do is place them in order and annotate them where my own memories overlap. Exhibit A: Kansas – The Point of Departure Recovered: Document K-17: A weathered farm ledger, water-stained and singed, cataloging livestock losses during “The Great Cyclone Incident.” Marginal notes in another hand describe an untraceable roar “like something alive in the sky.” Locale: Kansas is flat, endless, and quiet. A land where horizon swallows sky, and storms build without warning. Dorothy’s home sits isolated, a small farmhouse whose shadow never touches a neighbor. Life here is plain and bound by routine: the dust, the chores, the small family circle. But it is also fragile, perched on the edge of calamity. The sudden cyclone that uproots Dorothy marks not just a natural disaster, but a rupture in her ordinary world. ✎ “Our farm is so boring. Nothing ever happens …then the whole world got ripped up. I was scared, but part of me thought …maybe this is what I was waiting for?” Analysis: Kansas is less a place than a threshold. Its emptiness magnifies both the loneliness of childhood and the sense that something larger, unseen, waits beyond the fields. The cyclone is not merely weather – it is the instrument of transition, sweeping Dorothy from the ordinary into the uncanny. Kansas thus serves as both anchor and contrast: a reminder that the “real” world is vulnerable, and that journeys into wonder often begin in silence, dust, and dread. Exhibit B: Dorothy Gale – Missing Person Kansas County Sheriff’s Notice, 1898“Subject: Gale, Dorothy. Age: 12. Missing since cyclone event, whereabouts unknown. Presumed deceased or displaced.” Amended Report, 48 hours later:“Subject returned unharmed. Claims extensive travel. No physical evidence provided. Recommend closure.” ✎ “I underlined “missing.” I knew what it felt like to be somewhere adults couldn’t follow.” Analysis: Dorothy is not the innocent farm girl we imagine. She is the perpetual wanderer, the child who vanishes into absence. Her “home” exists only because she has left it behind. The official reports treat her return as a bureaucratic footnote, ignoring the truth of her journey and the magic she encountered along the way. Her journey reminds us that identity is formed in motion, not in place. Every step along the yellow brick road challenges assumptions about safety, belonging, and choice. Dorothy’s resilience is both learned and innate, teaching that home is not a location, but a state of self-awareness and agency. Exhibit C: The Scarecrow – Field Notes Botanist’s Log, Report No. 22“Specimen found upright in cornfield. Cranial cavity appears empty of seed, yet subject speaks in riddles and philosophy. Local farmers suggest fire hazard, not miracle.” ✎ “I thought he was dumb until I realized most adults just ‘sounded’ smart.” Analysis: The Scarecrow is not brainless. He is un-programmed. A blank slate who speaks truths others cannot hear because they are bound by education and ego. His “lack” is not deficit – it is liberation. He exemplifies the idea that intelligence is relational, not solitary. By observing and adapting to the world around him, the Scarecrow reveals that true understanding often arises from collaboration and attentiveness, rather than abstract knowledge alone. Exhibit D: The Tin Man – Maintenance Log Factory Recall Notice, 1931“Model T-1N Series: Subject to corrosion at chest cavity. Recommend removal of sentimental functions. Substitute metronomic regulator to prevent emotional interference.” ✎ “I remember the first time I felt hollow, and how that emptiness thudded louder than my heartbeat.” Analysis: His tragedy is not absence, but regulation. He shows that true emotion sometimes requires rebellion against what limits it, and that even the hollowest vessel can overflow with empathy. The Tin Man’s yearning illustrates how desire shapes purpose. Even in a mechanical body, longing animates choice and action. His quest for a heart is symbolic of the universal drive to connect, feel deeply, and transcend limitations imposed by circumstance or design. Exhibit E: The Cowardly Lion – Theatre Program Playbill for “Trial by Roar”“One-night only performance. A lion stands accused of cowardice. Will courage reveal itself under the lights?” ✎ “I trembled during my first school play, but the applause made me braver than I was.” Analysis: Courage is performative and internal at once. The Lion embodies the universal struggle to act despite fear, and reminds us that authenticity is its own kind of bravery. His fear also teaches that vulnerability can be instructive. By confronting his insecurities, the Lion becomes a model for embracing imperfection as a necessary step toward growth, showing that courage is inseparable from self-awareness and reflection. Exhibit F: Glinda the Good – Internal Memo Memo, marked CONFIDENTIAL“Subject Dorothy must complete journey unaided. Only at conclusion may power of return be revealed. Failure to comply risks compromise of Emerald Directive.” ✎ “Why didn’t she just tell Dorothy the truth?” Analysis: Glinda teaches that

Books, Classics, Entertainment, Reading / Scott A. Cook

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So – I Wrote a Book. What the Actual Fuck?

Books, Chronic Illness, Rare Diseases, Reading, Transformation / Scott A. Cook

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CIDP – In The Beginning

When I was first diagnosed with the rare, incurable disease called CIDP (Chronic Inflammatory Demyelinating Polyradiculoneuropathy), my doctor came into the office after all the standard tests and said, “Well, I think you have CIDP. You better go home and Google that.” Then he abruptly walked out the door. Truth. I was left sitting alone stunned, shaking and most of all terrified. When I finally made it out to my truck and used the Google to look up CIDP, I fell apart. FYI: don’t launch Google after any diagnosis! This is how a doctor is NOT to handle a patient who has just been given what seems like a death sentence except you don’t die. Not really. This post is full of twelve years of CIDP wisdom and meant for anyone, whether you were just diagnosed or you’ve been on your journey for years. Knowledge is power! Before I go any further, let me be clear: I am not a doctor. I am a CIDP patient. Twelve years. I have a severe, advanced case considered Stage 5 by The Mayo Clinic (Jacksonville, FL). I’ve gone from mere tingling in my feet to complete immobility. I use a wheelchair and an ECV scooter wherever I go. I am here to share my experiences in the hopes of enlightening you on your path to creating a better quality of life, even with CIDP. Things to Understand and Ponder If you were just diagnosed, let me say I am so sorry. Also, you are validated. You are seen. You are a Warrior. There is a lot to learn about this disease. Treatment alone can take a while to find the right applications that work for you. Consider what type of doctor diagnosed you. You really should be with a neurologist who specializes in rare diseases. The diagnosis of CIDP can be very tricky. It took an entire year for me to have a solid diagnosis. Standard tests include: nerve conduction, electromyogram (EMG), lumbar puncture, and lots of blood labs. There could also be a muscle & nerve biopsy, genetic tests, and sensory tests, as necessary. FYI: CIDP can be easily confused with many other autoimmune diseases. Be patient if you are still testing after a few weeks or even months. Once you are truly diagnosed with CIDP, please understand that this is a rare, incurable autoimmune disease. Rare means many doctors are not qualified to give long-term care in something they don’t understand; it’s not on their ‘radar’. Incurable means it cannot be cured, and you will live with this disease for the rest of your days, so proper treatment is crucial to maintain the patient’s quality of life. Autoimmune means the disease can flare or ‘attack’ at any given time, automatically. Additionally, it is very common that once you truly have an autoimmune disease that it will trigger other autoimmune diseases. The only way to know is to go down the rabbit hole of tests and labs to disqualify each possible second disease. You should step back a moment and make a list of all concerns you have, then move them around to prioritize what needs to be worked on first. I have kept a notebook on my phone full of every step of my journey since 2015. It has kept things organized and understandable along my rocky road, both to me and my healthcare team. Realize that not everything can be worked on all at once. If you make a list and understand what needs ‘priority help’, you can create a day-by-day schedule and feel in better control. Last, no matter what advice you receive in our gracious CIDP community, mine included, all your concerns need to be shared with your health care professionals first. Our patient community can only offer support. The doctors are the ones who will be taking care of you. Important: If you feel your doctor isn’t listening, you may need to find another medical professional. This is a serious disease that requires your voice as well as the doctor’s. You have begun a long-term relationship and it cannot become one-sided or it will fail as time wears on. Here is a great website for research to understand what CIDP is and what resources are available: GBS/CIDP Foundation International You’re Not Crazy – You’re Recreating I remember in the beginning of my diagnosis when everything in my head began spinning out of control. I couldn’t grasp the disease, how it was disabling me and the independent control I was about to lose. I never went to counseling but let me strongly suggest that if you can’t mentally handle this new life you never asked for, SEEK HELP. So many times, we are deep in the treatment and physical side of trying to move ahead that we forget the mental side of things. Our mental health is just as important, maybe even more. Embrace. Embracing I had an incurable disease was something I had to accept before I could really move ahead with healing mentally. Having an incurable disease is like grieving death. You go through the cycles of grievance except it never truly ends. To accept who you are now and what has happened, you have to embrace everything. The disease, the devastation, the support you need, the new life you have to create …all of it. This does not happen overnight but if you consciously work on embracing the truth, your mentality will prepare you to move ahead with clarity. Purpose. I had the great fortune of doing some patient advocacy work on a podcast and met my very first friend who had CIDP. We were both being interviewed and she brought up that she went through a dark period where she felt useless but couldn’t put her finger on it. In a flash of wisdom, one day she realized

Chronic Illness, Health, Rare Diseases, Transformation / Scott A. Cook

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