Sunday, February 20, 2011

Eve of Destruction

It's an odd sensation being in the state I'm in. Clearly, I'm not receiving enough oxygen to function as I normally would. I know this because thinking complete, coherent and rational thoughts is becoming more difficult, almost daily. I remember back to months preceding my first transplant and how I recognized my diminished cognition as indicating it was time that I dropped out of school to focus on my health. At that time, transplant evaluation hadn't been placed on the table, but we knew it was coming, and fast. Also, judging by the ebb and flow of my breaths, how deeply my chest is reaching to catch a breath, I know it's time.

Like before, I feel like my mind and soul (whatever that may be) is diminishing more each day. I'm living in a state of limbo in regards to reality and dreaming. My memories, when I recall them to myself, increasingly take on the hazy and uncertain feeling of a dream as it's fading from your memory in the moments after you first wake up. My sleep is punctuated by brief interruptions where I have to take a moment to figure out where I am. Sometimes when this occurs, I'm still partly in the dream, and wanting to continue performing whatever task I was in the dreamworld, despite my surroundings clearly being those of my bedroom as opposed to whatever odd or fantastical lair I was inhabiting just moments before.

I've found lately that I feel a fear in my heart that recalls memories and fears I had just after my transplant. Each morning while I was recovering, some sort of machine, a street-sweeper, I'm guessing, would sweep the street seven stories below. It was a horrible, nightmarish sound to me. Normally I guess that it would have been no big deal, but around 4 or 5 AM each morning the sound would invade my dreams and torment me until I finally woke and preoccupied myself with some sort of distraction. The sound of that machine isn't around anymore, but the fear it introduced to my heart has resurfaced as the elements and circumstances of my life begin lining up to the way they were just over 2 years ago.

It is these elements that let me know that the time is coming, this week or the next, when I'll be re-evaluated for my next transplant.

Yesterday and today were particularly difficult days to function; partly because I've been sleeping poorly, but also just because my lungs are self-destructing, and bringing the rest of my body down with them.

I'm trying to decide what the proper course of action should be in this condition in terms of addressing the future, and my loved-ones who are as uncertain about my doom as I am. thus far I've been both trying to look ahead to a future where I'm still around and am living a mildly successful life, slowly fulfilling my ambitions, and also preparing myself for the equally likely scenario where I die. I had to make peace with the second scenario some years ago, and now I'm here trying to make peace with it again. The first transplant was such a slap in the face (not intentionally on anyone's part) but I feel my hopes were left so high in the wake of it, that the confrontation with reality, this time, is much more painful. I was so hopeful and was able to, temporarily, stop thinking about being dead. But the reprieve was brief.

I spent all day today dragging my feet around the house, feeling like a ghoul. On top of that, the pain my body is in doesn't make the ordeal any easier. While the meds ease my physical pain, they leave me feeling more drained and ghoulish then I would otherwise be.

In light of all this, I've taken to studying screenwriting, with the slim hope I find I'm good at it. The bitch of it all, however, is that as my body is able to utilize the oxygen it receives less and less, I find that concentrating on the information I'm supposed to be learning, becomes harder and harder to do; therefore, applying it less to the actual writing. I imagine that if I write something, it'll be one of the most imaginative and mind-boggling pieces of screenwriting ever- and a complete fucking waste of everyone's time.


  1. Josh,

    You are so very talented and articulate. Please continue to update as often as you are able. You have so much insight and wisdom to share. We are incredibly proud of you. Love you!
    The Evil Stepmom! :)

  2. Josh. I'm a friend of Jo's and come via Smiling Heart. I extend my hand thru the veil so that we can meet outside of our skin for a moment. I don't know you, but trust Jo immeasurably. You won't have a similar desire to honor our relationship (yours and mine), I'm sure. But I'll acquire a little more insight to your soulful self as I read further in your blog, I'm sure. So whether you take any interest in this energy I offer you or not, I'm still pouring it on in great abundance.

    Without going into much detail, there is a theory called five elements which is very ancient and integral to Chinese Medicine. The lungs are said to be the place we hold on to grief. This current post is rich with your deepest fears and pain. Thank you for so eloquently sharing it with us.

    I'm always just flabbergasted at the mysteries of the universe. I told Jo this morning, in a private conversation that even though much of what she and I discuss is about spirituality which dwells outside of our bodies or I should say, exists freely either inside or outside our bodies, that much of my thinking of late has been about my body. She then invites me to read your blog and you write about being in limbo. My own blog is a fantasy and lately the hero is dealing in a limbo state, without a body.

    Sorry, I'm honestly not trying to promote anything other than my amazement to the great puzzle and this notion that if God exists, he's a funny guy.

    You have great clarity right now, at least to me. Even though you talk of uncertainty, each word of yours is pregnant with wisdom. I am weak with humility right now as I promise you that it is very nice to make your acquaintance!

  3. Brilliance shines through your writing, Joshua. Hope is have much to tell others about your journey, and great wisdom to offer all of us. I hope you will continue to write as often as you can.

    I'm so happy you've met my friend, Winston. I hope you'll get to know each other better in the days ahead.

    much love,

    The Evil Great Aunt! (hi, Hope!)

  4. Joshua, I too am a friend of Jo's and agree, you have so much to share...

    Peace and healing thoughts coming your way!

  5. Hello Joshua, I am a blogging friend of Jo's. I read her blog today and knew I wanted to come here to visit. I live in Canada and I am 60. My husband was diagnosed with esophageal cancer in April 2009. They gave him four years to live at the most and he died in July 2010. He blogged through out his treatments. The people who visited his blog everyday are friends of Jo's and that's how I came to blog with her. Around New Years, I saw a picture of Jo's daughter Andrea in a beautiful white dress on facebook. I left her a message and Jo contacted me.

    I don't know if my husband's blog would be depressing for you to read or if it would be inspirational in any way. If you go to my blog, Living In The Eastern Woodlands, you will find a list of blogs I follow. His is the bottom one, An Explorer's View of Life. You cannot leave comments there, but if you want to read any of it feel free.

    I admire your strength. Hang in there. We don't know how long we get to live here on earth, but life is so very precious. Stay strong, feel as peaceful as possible. I can leave you with healing prayers and prayers for a donation of compatible lungs.

  6. One more thing, my brother-in-law had a double lung transplant and lived 8 more years back in 1990 and medicine has come soooo far. Keep the faith. Be the SURVIVOR! Share your story<3

  7. What a beautiful blog and incredible post. Thank you so much for putting this gorgeous honesty out into the network, for sharing with us. Wow!

  8. Barry's blog is awesome, by the way. I loved him so much - now Linda is a good blog friend. All of us are lucky to be able to stay connected this way. x

  9. Thanks to everyone for commenting. Hopefully as I write more, I'll find my voice, given that it feels like I've lost it a bit lately.

    It makes me glad to know you all are able to take something away from my writing.