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
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