Truth Archives – Scott A. Cook

I Didn’t Disappear – I Transformed

Please note: This is a companion piece to my original Facebook post from October 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 three 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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New Life Series (P1): Sitting with Jesus at the Edge of the World

This article is part 1 of 4 in the ‘New Life’ series. It is based in absolute true life events. Mine. # I knew exactly where I was going. I went there every night. A small forest path that wound slightly left and right, up and down. It was covered in just enough snow to crunch beneath my calf-high leather boots. Over head, the spruce and pines swayed soft in the wind, shuttering a fresh snowfall. As I followed this familiar path, each new tree lit up with white lights, not unlike the mini white Christmas lights we buy at the super stores but these lights had a glow like a thousand fire flies. I was deep, deep in the forest, so clearly their power was not electricity. But it never made a difference how they were made to glow. What was important was I knew they were glowing for me. That seemed so simple. So innocent. As I continued walking through this ancient tunnel of trees, I began to see the expected clearing up ahead. It grew closer and closer. The trees parted abrupt, the fading sun almost blinded me and if I took one more step forward, I would be plunging. I was all, and at once, on the edge of a magnificent cliff, over looking a mountain range so vast and so personal, I can’t find the right words to describe it. The snowfall became more brisk in the open air and an up draft wrapped itself around me, almost taking me forward. But I’ve been here so many nights, I know what happens next. One step forward, one look straight over the rocky overhang, a breathe, a wonderment, a step backward then another breathe. Taking that extra step forward would have to wait for another night. Behind me and slightly left was a manmade bench of solid pine. Not linear. The seat was overly oblong and curved in several places. It was polished only from generations of sitting. The back of the bench was also oblong with a strange high and low curvature. It had strength and wqs held to the seat with three thick, hand-carved poles. It sounds uncomfortable but I tell you it’s very existence was designed for such peaceful respite as I now sought. I know. I’ve been here so many times before. I turned slightly and made my way to the bench. Without even looking, my left hand shot forward and scooped up a large fur coat, complete with a hood that swallowed my head. Maybe elk, maybe wolf. I never asked so I can’t speculate. I only know when I put it on, something naturally calmed all the voices that were troubling me on my trek through the trees. The cloak began to swallow me in it’s breadth so I wrapped right then left. Satisfied I was bundled up warm, I finally sat on the edge and stared out at the majestic scene before my eyes. Mountains in every direction. Trees scattered up and down them. Below the cliff, a deep valley. Within the valley, a Bavarian village kissed by the falling sun. Snowfall. Every where snowfall. Then pure silence. Even the wind moved in a hushed tone, just out of earshot. I sat, as I always did, struck with amazement that such a place could exist and that I, small and insignificant, was allowed to witness its perfection. I waited and it came. The distinct aroma of honey crisp apples and pure balsam. Not overbearing. Just enough to shift my mind from the silence. My eyes remained forward as he slid up next to my rightt side in his own fur. He looked out, too, but spoke directly to me. “You’re not wrong,” he said. “I feel wrong,” I said. “I’d tell you if you were wrong.” “Would you? Maybe I’m making up the words in my head that you speak to me.” “That is possible. But I believe you know otherwise.” I took a breathe and exhaled, mist coming from my mouth. “I do,” I said. Silence. That was what was most important. The silence. “You hear me calling you every night. That’s why you come,” he said. “I come for many reasons,” I said. “Oh?” “Mostly to silence the confusion.” “We’ve covered that.” Silence. “Tell me the truth.” More silence. Then it fell from my mouth, unrestrained. “I’m here to stop the voices. The painful scenarios I’m bearing all by myself that are destroying me from the inside out. To seek real answers to the questions I’m making up the answers to.” “And?” “To hear you say how much you love me.” Both our fur cloaks swirled and almost became one as he wrapped me tight, laid us both back on the bench and pulled me close. “I love you without question, with reserve, without judgment,” he said. The snow paused but a moment. He continued. “I just love you. And it’s going to be alright.” I finally looked up into his most beautiful, excepting eyes. “Do you promise?” “I do.” It was really that simple. Believe. He kissed me on the forehead several times, murmurs of love escaping his lips. Then silence. Long silence. “Look. The lights are coming on,” he said. We both leaned far enough forward to watch the lights on the houses in the valley light up randomly just as the sun sank behind the gigantic hills. Up and down the majestic mountains, trees in the forest also lit up. It was beyond magic. It was purity. I waited. It would come because this was a space blessed with pure truth. “You’re not wrong,” he said again. And just like that, my tears cascaded in waterfalls down my

Chronic Illness, Human Condition, Series: New Life, Transformation, Truth / Scott A. Cook

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Festival of Words 2025 – “Pantera”

The word “pantera” primarily translates to “panther” in English. Who knew? It’s the Spanish and Italian word for the ‘large cat’; often used to refer to a black leopard. I choose to use pantera during my very own Festival of Words, coming up from Sept 24-30, 2025. This seven-day celebration is an authorship reflection of myself and my part in the state of the human condition. During this time, pantera will be treated as an ‘acrostic’; each letter of the word stands for a value, mindset, or action that can elevate someone’s life. Pantera also ties into my health diagnosis of the rare, incurable disease, CIDP, and my survival journey of the last twelve years. Power and strength, courage and fearlessness, mystery and spirituality. When I look back, I was a panther in every sense of the word. I still am. Allow me to share the entire acrostic meaning of pantera from my Festival of Words, in case you don’t catch it on social media. As you read and reflect, please realize, with this knowledge, comes the responsibility of sharing it. My Acrostic Meaning of ‘Pantera’ P = Perspective A = Authenticity N = Nurture T = Truth E = Empathy R = Resilience A = Attitude Day 1: Perspective Every single thing we touch, taste, smell, experience and SAY is guided by Perspective. Look around you. Words. Too many words, pictures, desires, falsehoods. Sensory overload. Plastic existences. A world suffocating under its own human inventions. Perspective can change all that. Silence the overload. Remember why it all is. * Temporary is inevitable for everyone. * Perspective is ingenious. * It’s not too late. Day 2: Authenticity Authenticity isn’t about being perfect. It’s about being real. That’s where the magic happens in our daily lives – if you’re brave enough. When we stop trying to be who we think others want us to be, even who we want ourselves to be, and start embracing our genuine selves, something beautiful shifts. Our relationships deepen because people connect with our truth, not our ‘performance’. Our stress levels drop because we’re not constantly managing a facade. We make decisions that actually align with what matters to us, leading to a life that feels genuinely fulfilling rather than exhaustingly curated. To cultivate authenticity is to embark on the most rewarding journey possible: the journey home to ourselves, where we discover that our greatest gift to the world isn’t our perfection, but our willingness to show up as we truly are, inspiring others to do the same. * Embrace the imperfect you. * No apologies. * You know who you are. Day 3: Nurture Your soul needs a big, warm hug and you didn’t even know it! Nurturing is the gentle art of tending to what matters. A friendship, a dream, your own well-being, or even that little plant on your windowsill. It’s the sacred alchemy of conscious cultivation, transforming the raw materials of human potential into extraordinary realities through deliberate acts of care and attention. When we actively nurture the good stuff in our lives, everything starts to bloom in ways we never expected. That friend you check in on regularly becomes your biggest cheerleader. The skills you patiently develop become your superpowers. The kindness you show yourself on rough days becomes your unshakeable resilience. * It’s so simple. * Don’t water the plant, the plant dies. * We can be dead on so many levels. Day 4: Truth I grew up in a household that would not tolerate even the tiniest mistruth. If you did make the mistake of telling a lie, it was time for Dad’s belt. There is something to say about a bit of parental fear but that’s a whole other article. Truth is fucking messy, uncomfortable, and absolutely liberating all at the same time. We spend so much energy dancing around it, sugarcoating it, or hiding from it, but here’s what I’ve learned: living in truth is like finally exhaling after holding your breath for years. To live in truth is to choose radical freedom over comfortable delusion, knowing that while honesty may initially challenge us, it ultimately becomes the foundation upon which we build a life of profound meaning, connection, and purpose. When you commit to truth, you attract people and opportunities that align with who you actually are, not who you might be pretending to be. * The truth will set you free. * You don’t have to like it. * Don’t wait for your death bed. Day 5: Empathy How often do you say, “I see you. I hear you. I understand you.” Do you really mean it? That’s Empathy. It emerges all around us as the essential thread that weaves humanity together, yet we are witnessing first hand its gradual erosion in an age of digital disconnect and polarized discourse. In our rush to be right, to defend our corner of the internet, or just to get through our packed schedules, we’re losing the beautiful art of truly seeing each other. When we pause to really listen, when we try to understand someone else’s story before jumping to conclusions, something shifts. Our relationships get deeper, our communities get stronger, and we feel less alone. * Nobody’s that busy. * Be an architect of Empathy. * “Hey, what’s that like for you?” Day 6: Resilience Resilience isn’t just about bouncing back from rough times. It’s about learning to bend over backward without breaking. Some people are masters at this without even realizing it. Think about those living with chronic illness who wake up each day not knowing what their bodies will throw at them, yet still find ways to laugh, love, and contribute to the world. They show us that strength isn’t about never falling down; it’s about getting creative with how you keep moving forward.

Books, Health, Human Condition, Transformation, Truth / Scott A. Cook

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Legacy – Now You See Me Now You Don’t

In 2021 and 2022, I faced death. Twice. I underwent two major spinal reconstructions. C1-T5; brainstem to middle of my back. Each surgery required serious metal hardware and came with a stern warning tag from my neurosurgeon: “Before we proceed with surgery, you must understand that you have a medium to strong chance of waking up paralyzed. And a fifty-percent chance of not waking up at all.” What the actual fuck? First I have full blown CIDP then after years of working to contain this rare, incurable shit-fest of a disease, I might die from a spinal whack-a-doo whatever. What the actual, actual fuck? The emergency surgeries were all due to my spine disintegrating from long-term use of the steroid, Prednisone. I have lots to say about the use of Prednisone. But that’s a whole other article. Now, I didn’t write this piece to have you organize a cheering squad screaming, “You’re amazing! You’re a rockstar! We’re here for you!” No, the reason is a much deeper quandary. I was being triggered into depression for three years after the surgeries. And it was the most empty feeling I’ve ever experienced. Day after day, after fifty years in theatre, I realized that so many of my super close friends or day-to-day colleagues had either ghosted my attempts to communicate or worse, just never checked in on me at all. Three years of nothing. Truth. It rocked my world to the core and brought to the surface a word I guess I had taken for granted all my life. Legacy. Theatre singer, dancer, actor turned teacher, director, and choreographer for so many years made me feel strangely empowered with the sense I would always leave behind an indelible mark on everyone I touched. They would remember me and honor me as an amazing source of theatre leadership, full of knowledge and passion. And a dear friend who always practiced unconditional love. In my life, I was that person who never stopped to rely on anyone, save for my best friend Barb or my partner, Abel. But I needed people now, more than ever. And just as I was reaching out, the most tragic, bizarre mass exodus of friendship occurred. “If they weren’t here for me now, would they bother to be here at the end of my life? More heartbreaking, would I even want them there?” And thus, the word legacy kept pounding on my brain every day, for three years. A cruel, rustic mallet that would not let up. To survive, sometimes we have to reinvent. Which brings me to how I finally transformed the meaning of that torturous word in my life. What Is Legacy, Really? Legacy. It’s a word we often associate with greatness. Fame, fortune, or something we leave behind to prove we were here. But what happens when your life doesn’t go as planned? When illness rewrites your narrative, or the spotlight fades too early? What if the only person who remembers your life is …you? “Legacy isn’t always what we leave behind. Sometimes it’s what we leave within.” Let’s explore the evolving meaning of legacy through the eyes of those navigating chronic illness, lost time, aging artistry, and personal reinvention. In Youth, Legacy Is a Performance In my 20s and 30s, legacy felt like a performance – choreographed by ambition and driven by the belief that visibility equals value. For many entertainers, artists, and dreamers, every gig, role, or opening night seems like the next step toward “being somebody.” I’ve seen it many times. Myself included. “For performers chasing legacy, every gig feels like a step toward immortality.” But time may have other plans. And the pursuit of legacy might begin to feel like building a sandcastle with a tide schedule no one ever warned you about. The Cruel Interruption: Chronic Illness and the Disappearing Trail For those living with chronic illness, your story can take a sharp turn. You don’t retire your dreams – you’re forced into a new life. Jobs disappear. Social circles shrink. Your old self becomes a memory wrapped in pain and medical appointments. Been there, done it. “You’re told to ‘pivot,’ as if reinvention were as simple as rebranding a business – not mourning a self.” The Aging Artist: Fame, Echoes, and Empty Hands Entertainers – actors, musicians, dancers – often live in pursuit of legacy. I know I did. But gigs are fleeting, and fame is fickle. One day you’re adored, the next, forgotten. “You spent decades giving people joy. Now, no one texts back.” As age creeps in, many performers find themselves with nothing but the echoes of their youth. The industry just keeps moving on without them. So who were you really doing it for? That’s a great question. Stop and think, like right now. Maybe We’ve Got Legacy All Wrong Here’s a radical reframe: Legacy is not what the world remembers about us. It’s what others carry because of us. The student who found courage after watching you endure. The stranger who smiled longer because you were kind on the worst day of their life. The daughter of a nurse who chose medicine after hearing your story of strength. “Legacy is not always about what we do. Sometimes it’s about what we survive.” The Art of Cracked Wholeness There’s a Japanese concept called kintsugi—the art of repairing broken pottery with gold. The cracks aren’t hidden; they’re honored. “Maybe our truest legacy lies not in being whole, but in being visibly broken—and still willing to shine. Whether you’ve surviving disease, anonymity, or the slow fading of your previous self, your story matters – even if no one applauds at the end. New Questions – Later Years As we age, hopefully our relationship to legacy shifts. We stop asking “How will they remember me?”

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

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