The End of The Road

I was recently hospitalized for what was later diagnosed as gastritis. Though another doctor said it could be gastroparesis. Or both. Who knows. But the point is, I haven’t been able to fully recover from it yet and maybe I won’t. I can barely eat anything due to not having much of an appetite and will sometimes throw up what I do get down. I’m in constant discomfort from it. And it’s affecting my breathing because of the pain when inhaling, too. I feel like shit.

But I’m burying the lede, here. Because another thing they told me was that my heart failure has become very advanced. My weight has been steadily going up since January and it’s to the point now that the BMI is too high — amongst other silly reasons — to get the heart transplant.

Let me repeat: The heart transplant is no longer on the table.

In fact, in Penn Medicine’s opinion, there are no longer any options on the table for me.

Could I look into other health systems to get a second opinion? Yes. Will I? Not sure. But probably not.

That bag of medicine that is constantly being pumped into me that I must carry around usually means I have a 6-12 month life expectancy once one goes on it. I think I’m in month 8.

Long story short, I’m not sure I’ll see my next birthday (January 8th). I have to basically start getting my affairs in order, which I will be doing as soon as I process this. Though I may not ever fully process it so I’m forcing myself to do things like write this blog out. Perhaps my last blog ever.


So what does one say when they’re facing their own mortality; when they’re essentially a dead man walking? Because for now, I just wanted to get this out there and be done with it. So now you know. And now that I’ve gotten it out, I honestly don’t know what else to write. So… let’s see what comes out:

“Don’t worry, this’ll all be interesting when I’m dead.” is a tagline I put on this blog many years ago. I guess it’s time to prove that theory.

And I guess you can stop donating to my gofundme now. Though if you choose to continue, it will just go into a bank account my mom has access to. So maybe she’ll need a little bit, I don’t know.

Maybe I’ll be able to write another blog after I digest it all and be able to say all that is within me. But for now, a message to all the girls I’ve loved before: You all continue to have a special place in my heart. I’m sorry things didn’t work out. If I haven’t heard from you in awhile, it would be nice to hear from you now. But I’m not about to go chasing people who may or may not want to even hear from me.

Love is all that ever mattered to me. So this is what I wanted to say. This is all that’s on my mind; the ones I loved and lost.


Thank you to each and every single person who’s donated to me, shared my fundraiser link, sent cards, flowers, letters, gifts, thoughts, and yes, even prayers. I kind of feel like I’m letting you all down by not being able to get the transplant after all this. But the monetary donations literally helped save me from going homeless while I waited to get on Disability. So again, thank you. I don’t know if I deserve it, but, you gave anyway.

I’d also like to thank those who stuck around this last year and helped me out around the house. I could not have gotten through it without you.

Welp. That’s really all I can think of for now. Like I said, maybe there will be a part 2 to this blog with more thoughts and reflections. But for now… this is the end of the road for me.

Coz

Create until nothing is left to create.

17 thoughts on “The End of The Road

  • August 23, 2021 at 1:21 am
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    im hoping for a part 2, thank you for everything you’ve done

  • August 23, 2021 at 1:51 am
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    thank you for everything, Coz. i sincerely hope that this won’t be the end, but, from the bottom of my heart, thank you. you have truly impacted everyone so much with everything you have given to so many communities. you’re truly a remarkable and amazing person and it’s horrible to hear that you’re living like this. i’m sure there will be more options though, i really believe that you can make it through this chapter of your life. like i said though, even though i only know you through your creations and not personally, thank you for everything you’ve done and thank you for being yourself. sending so much love <3

  • August 23, 2021 at 2:09 am
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    We love you, Coz.

  • August 23, 2021 at 8:29 am
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    love ya, coz. wishin the best for you.

  • August 23, 2021 at 8:51 am
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    Go for another opinion. I know it’s frustrating but it may prove fruitful❤️ My prayers are with you. We are here for you. Keep blogging…it may help you.
    ai wish I had a magic wand or fairy dust to take it all away!
    Try not to give up…you can’t control your days here but you do get to decide how you fill each day…one day at a time. Feel the love, my friend! XOXO

  • August 23, 2021 at 10:32 am
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    Hey, Coz…I’m so sorry you are in pain and at this point. Life is so fucking weird and scary and wonderfully horrifying. I always thought you were a great guy. Very talented and interesting. Everything is going to be Ok in the end. This is your path…God knows why we have our paths but we do and I feel like everything is meant to be. You have such a beautiful heart, Coz. Maybe it’s just too full of light to keep ticking.❤️
    -Beth

  • August 23, 2021 at 12:02 pm
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    Praying for you and your family

  • August 23, 2021 at 12:07 pm
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    Oh Coz, that’s so sad and final. I never met you, but I was privileged to write to you and also see the good things that you did. God bless you and your mom, Sally.
    You will be missed.

  • August 23, 2021 at 7:19 pm
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    Coz, words cannot express the sadness that Theresa and I feel at this terrible news. You have been so incredibly helpful to both of us by sharing your immense amount of knowledge, your humor and your friendship. The world is a much better place with you in it, so I hope your prognosis is not as bleak as it seems. Please take care. There are still things to create and fun to be had, so don’t leave the party yet. We are just getting started. Thanks, Coz, for all you have done.

  • August 24, 2021 at 8:08 pm
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    I am sorry for your troubles and only wish I could do something for you or even trade places. You are a great guy and all of the love, generosity and beauty given is definitely deserved. You have given so much of yourself to so many. I will continue with prayers and thoughts for you, hope for a miracle. I will carry your spirit in my heart always. Continue to hang tough. Remember everyone’s love is with you and will carry you onward in your journey and know you will never be forgotten. Until we meet again here or there. Much love brother.

  • August 28, 2021 at 5:31 am
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    We love you Coz, thank you for everything!

  • August 28, 2021 at 7:13 am
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    This is really all so heartbreaking. The inevitable might be near but we’ll all go there anyway. Can’t imagine how it is to have been caught between the two worlds. Dream sweet in sea major, dude.

  • August 30, 2021 at 10:47 pm
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    Coz:
    Just wanted to to thank you for all the love and support you’ve given to Tally Hall, and especially to our son Joe. It will NEVER ever be forgotten, no matter what the future may hold for you. You’re a good man with a kind soul; and we’ve sincerely appreciated you from afar. May God bless and reward you for your goodness and selflessness. Thank you for EVERYTHING Coz. You are a very, very special person… Peace.

  • September 3, 2021 at 1:59 am
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    🙁

  • September 11, 2021 at 12:22 am
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    Thank you SO, so, so much Bob and Darline. I have enjoyed every minute of it all. It’s been my pleasure.

  • September 29, 2021 at 4:59 pm
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    Dearest Coz,

    It is the beautiful painful paradox of duality; Of Light and dark, Life and death—The Cycle.

    Beautiful One, what a brave BEAUTIFUL SOUL you have. What LIGHT!

    You SHINE, Coz! You always have and always will! We all see it. We are all so grateful for it. Thank you for all the love and support you have shared and shown to me and so many more!!!!

    Your light can never be dimmed Dear One, it is only the body that will change forms.

    Our souls will always know one another.

    You are SO VERY LOVED.

    You have made an impact on my life, Coz. I am so grateful to know you, Brother. Thank you. I love you.

  • September 29, 2021 at 5:10 pm
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    Wow, Lauran. Wow. Such kind words from such a kind and beautiful person that is you, as well. Thank you. This message really made my day (if not longer). My absolute best wishes for you in your endeavors — with or without me around. I love you, too.

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