The Story

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The cold cut into my bones as my body shut down, no longer able to create its own warmth, the acrid air of decomposing flesh filled the room as  I smelled the flesh of my own legs rotting away, turning to liquid & seeping through the layers of bandages. My hair was falling out in clumps, the skin on my face stretched tight around my cheekbones & skull.

I looked like I was straight out of some surreal horror flick.

The doctors, nurses & specialists had already tried all they knew & kept trying, but when I looked at them I could see behind their smile a hopelessness in their eyes. I was dying, and quickly. There wasn’t anything they could do but keep the dressings & bedding as clean as possible. And morphine. Lots of morphine.

LegDressing1

This wasn’t part of the plan at all. I was only 42 years old and as commonplace it sounds to say “my life had just begun” – it really had, in a HUGE way. Not only was my life full of a beautiful insanity, it was a life that mattered – a life that could perhaps even change others.

Lying in the hospice I had just watched two young, wonderful people die with the exact same cause & symptoms I had. In the pain & hopelessness, they had given up – but I had far too much I still wanted to do, so I decided to fight like hell, & the Hepatitis C could kiss my ass. I had no idea how I was going to pull it off, but I already had one foot in the grave, and the other was slipping.
I had nothing to lose.

Less than six years before this, on the day I was laid off from work, something clicked inside of me. As I shut the door to the office & walked to my beat-up car, I realized that this was an opportunity; that things could be different. That morning, looking back on all the time I wasted waiting for some sort of magic to happen, I finally realized that I could try to manifest my dreams until I was blue in the face, but not a damn thing was going to happen unless I put some action behind my intentions.

I could live a life that I chose, instead of being chained to a paycheck.
I could do something of value. I could help.

I knew it wouldn’t be easy, but I also knew that, without question, it would be worth it. IF I lived.

I didn’t have anything even close to a “plan”, but had a distinct feeling that things would work out – so closing my eyes, terrified but thrilled, I leapt off the proverbial cliff and hoped I learned how to fly before my dog & I starved.

A couple months & a stroke of good fortune later, I working with Amanda Palmer & her band The Dresden Dolls. What followed was a journey that I couldn’t have even imagined, filled with hilarity, amazing people, and challenges that tested everything I thought I knew as I bounced around the country. An adventure that would show me more about myself than I ever dared dream, & change my view on life forever – and it just kept getting better…

Photo by Pixie until I very inconveniently started to die.

The Hepatitis-C was ripping the life I had worked so hard for away, and as I lay in the hospital bed, I could smell my own death coming. My body had given up the fight…

But my heart hadn’t.

Eighteen months after I first entered the hospice, I did what I swore to myself I would do if I lived, and as the nurses & doctors who had looked at me with such helplesssness in their eyes before smiled, fought back tears & called me a miracle…  I danced out the door. (With my cane, and yeah, it hurt like hell – but it was something I needed to do. For me.)

This story is meant to inspire, to amuse, enlighten and occasionally, perhaps, amaze. Written from the heart, it is authentic, unapologetic, and very honest, it won’t be like anything you’ve ever read – and it’s all true.

We all have amazing stories inside of us. This is one of mine. It has been hard fought for, and the greatest gift I can think to give you.
This is a small though important part of my life, and I write it in hopes that it will inspire you to live – and maybe even write – yours.
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