Chronic Illness

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

Yep, it’s true. I wrote a book.   What? Like it’s hard? Lol! 😂   Seriously though, most of you know musical theatre has been my decades long career so why am I talking about being an author? Well, gather round gentle readers and I’ll share the story. It all began in the little town of Davenport…   Stomping Ground   It was an inevitable and accepted fact that one day my rare, incurable disease, CIDP, would take me down without remorse and make it impossible to walk, drive, dress or dance ever again.   However, from 2013 when it first presented itself through full diagnosis in 2015 until right before the COVID-19 pandemic in 2020, I fought against the rage that was slowly but consistently taking over my muscles, consuming my nerves, altering my speech, and dissolving my mental state of mind.   Even after I lost all the nerves and feeling in both my feet, resulting in drop feet, I learned how to ‘stomp’ the ground just to know where I was spatially. This stomping method allowed me to continue to teach dance and choreograph musicals for five more years after diagnosis. And sometimes look like a drunken orangutan!   Wake Up Call – Can You Hear Me Now?   The pandemic and the two years that followed put a crushing blow on my career and my entire life. When our country went into pandemic lock down and I paused all my work, I finally realized just how sick I really was. To add insult to injury, not one but two spinal reconstructions happened out of nowhere in 2021 and 2022, due to long-term use of Prednisone dissolving my actual spine. These immense and dangerous surgeries would finally shut the door and twist the key in the lock to end everything I loved about my life.   When you loose your life and everything you ever worked for in the way I did, the real tragedy is: you’re still alive. Now what?     Standing on the Corner of Fucked and Fucked   Good question. Now what? I won’t recount every last detail from 2021 to 2025 but suffice it to say, as the pandemic proceeded, I was sucked into a black storm of confusion and depression that bore down on me every day. If I wasn’t distracted by a long phone call from a loved one or spilling my beer on an ECV scooter at Universal Studios Orlando, the storm was there. It would surround everything I was trying to do to get rid of it, bashing my thoughts against the rocks, swallowing every effort down below its black waters.   Yes. I entered a period where suicide became a thought more than several times. I’m not proud of that. I was such a strong, resourceful man. Until I wasn’t. My neurologist finally intervened. Don’t ever be afraid to reach out.   988 – Suicide and Crisis Lifeline. Call or text.   Unseen Wisdom   So many levels of recovery must happen on the road to surviving a lifetime chronic disease. But the one that would not let go of me was purpose.   We all need a purpose in life to feel we are contributing to society, to our family, to ourselves. Having no purpose is like plunging down a pitch black, bottomless hole in the ground. You swear there must be rocky earth you’re about to slam into any minute. That actually would have been great, but fuck, no. Endless falling. And falling. And falling.   Supernova   Then in June 2022, through the physical destruction and mental exhaustion of the last three years, a beam of light exploded, rocking my entire being. A powerful epiphany I needed more than anything materialized out of nowhere:   “You are a born storyteller. You’ve told stories for decades on the stage. Why not the page?”   At first, I was frightened. The kind of in-the-pit-of your stomach-I’m-gonna-puke frightened as if I were at my first theatre audition. I couldn’t do this. What was I thinking? Then Abel, my partner, nailed it in for me with his simplistic words:   “If anyone can do this, you can.”   A man of few words but always powerful when he does pipe up. I suddenly was filled with a determination that got me happily out of bed every morning!     Commitment   Thus, on July 7, 2022, I proclaimed to myself, Abel and the Universe that I was going to be an author. Just like that, my feet hit the ground, the rain halted and the clouds began to part. I haven’t stopped writing since.   The road to becoming a writer, I learned, truly has no clear road map but I made one promise that I believe made all the difference: I would not put pen to my stories until I studied how to be a writer for six months.   I created a daily curriculum, 8am-4pm, five days a week and stuck to it. I mostly learned how to write from the many books on the subject by the incredible author, James Scott Bell. I credit him to this day for the skills and courage he taught me that would allow me to lay pen to paper with confidence.   I started by writing horror; one of my many obsessions. And I made a promise that I would do everything to not write the cookie cutter horror that has sadly permeated our entertainment industry today (Sorry. Truth.) I began with two separate novels but soon backed down to short stories. It was not so daunting and finishing a short story in a condensed time frame brought a sense of completion (until Abel started editing, lol!).   As I wrote the first three short stories, I realized each story was taking place on a holiday. Unintentional but so cool! I decided to outline an anthology of dark, twisted, seasonal holiday horror tales. Eight of twelve stories are

Books, Chronic Illness, Rare Diseases, Reading, Transformation /

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Mountains

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 /

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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 /

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