My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

My laugh

August 04th, 2008 | Category: Life

Back in the day, when I breathed through a mask and talked, I had a very unique laugh. When something was really funny I’d laugh without a sound, save for a hissing rush of air blowing out of my mouth. That was it. Now, however, with the Passy-Muir valve, my laugh is something completely different. Apparently, my natural spontaneous laugh is an eerie self-perpetuating, maniacal chuckle that, to put it plainly, sounds very much like Heath Ledger’s Joker. I’m not trying to sound that way, it’s not an affectation. I genuinely sound like the Joker, his conversational chuckle that starts, builds and eerily trails off.

Just listen to the beginning of this video… that is how I laugh.


More talking

August 02nd, 2008 | Category: Life

So, I just rocked the Passy-Muir Valve for about forty-five minutes and it definitely went better than Wednesday’s attempt, and DEFINITELY better than my attempts with my mask. I spoke in complete sentences, though, I feel that I sound quite a bit like Donald Duck, which is unfortunate or spectacular, depending on how you look at it. Even as a duck, I have more to say than I said today.


To spin?

July 31st, 2008 | Category: Life

So, yesterday I tried the Passy-Muir Valve. I lasted 35 minutes and everybody was quite pleased with how I did, but I’ll be honest, I won’t try to spin things, it was really very difficult. I could only actually say a few words and they didn’t come easily. It’s disturbing not being able to do something that I used to do without thinking. I’m told that I just need practice, rehab, but I don’t know. I want to be hopeful, but I find it difficult.

The Passy-Muir people were definitely spectacular, I couldn’t have been in better hands.



July 29th, 2008 | Category: Life

So, last month I was contacted by the President of Passy-Muir, Inc, makers of the Passy-Muir Valve. It’s a plastic valve that attaches to traches, hopefully allowing users to talk. Experts from the company are flying in tomorrow morning, people who worked with Christopher Reeve and Pope John Paul II, 45 members of the hospital are coming to watch, I couldn’t be in more skilled hands. Will it work for me? I have no fucking idea. I want it to work, but I’m afraid to want it too much. I’m going in with low expectations, it’s all I can do right now. At least it’ll be over one way or another.