My Whole Expanse I Cannot See…

A few days ago I saw a fantastic and hilarious movie called, Things to Do. It’s about a guy who, for reasons we learn later, leaves his spirit breaking office job in the big city to return to his parents’ small-town home, which is depressing in its own way. One day he’s watching some “teens gone wrong” day-time talk show and the host says that to be happy in life a person has to be organized and have goals, advice our protag closely follows. He creates a Things to Do list, a list of anything he wants to do, but has never done. Then he tackles the list with the idea that it will help him find his place. I’ve been seriously thinking about the same issues, so I’ve also begun a Things to Do list page, linked at the top right corner of the blog. My list is public and dynamic. I will add things as I think them up and cross them off as I do them. I’m making it public because of a post I read on Ecstatic Days by Catherynne M. Valente. She posted about writing a novel in 30 days, but the part that really struck me was about how it’s important to make goals public because it’s so much easier to quietly fail in private. People are welcome to join me in tackling the list.

Here’s the list so far:

Spend a day theater hopping at the movies

Go sailing

Have a home and a family of my own

Stay in a dive hotel in a city like New Orleans or New York

Go on a post-trache trip without my family

Ride a riverboat

Visit the Canadian side of Niagara Falls

Visit a New Orleans cemetery

Ride a Greyhound bus

Write a novella

Go to a shooting range

Fire a gun with a switch

Camp at the Grand Canyon

Spend an entire night on a beach with a woman I love

Sleep at a New England bed and breakfast

 

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.

I’m Aimee Mann’s Goddamn fucking moth. I’m fueled by need and anger desperation. I need the life I want. I’m angry it’s so difficult. I’m desperate not to fail. I’m sick as shit of people telling me what’s “best” for me. I’m sick as shit of people pretending to know what’s in my heart and in my head. My biggest fucking mistake is trying to please everybody while not pleasing myself. I’m done. I’m out. Fuck it. Fuck doing what I’m told. Fuck juggling everybody’s happiness. That doesn’t get me anywhere but miserable. Fuck wasting time. Barring something incredibly stupid, everybody I know is going to outlive me, so fuck not pleasing myself. Fuck feeling guilty about the things that I want. Fuck it all. I’m a good Goddamn person, flawed like anyone, but good. I’ve endured a whole Goddamn fucking lot in my 27 years and I have held up pretty fucking well. The same people who tell me what to do would have broken by now were they in my place. 

I stumble, but I don’t quit. I beat my wings till I burn them black, but I don’t give up.

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.

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.

Here’s a better view my poppy tattoo…

Yesterday I got my ninth and most ambitious tattoo. It’s the most ambitious because unlike the other eight, I cannot really hide it. The others are on my arms and legs, two on my torso, all easily hidden by clothes. This new one, this one I cannot easily hide. It’s on the top of my right hand, a big red poppy.

I got it for a few reasons, I’ve definitely wanted it for awhile. The main idea being, I really like opiates, I used to like them far too much. I completely understand why people pick them up and never put them down. In many ways they’re beautiful, they help you feel absolutely fucking perfect no matter how astonishingly bad reality gets. I don’t care what anybody says, sometimes you need that feeling of safety, that peace. When the entire world goes dark, a little light helps. Back when I was really sick and really terrified, really alone, when everything I ever feared happened all at once, opiates were like a nice warm blanket, a kiss from Sara, a hug from God. I don’t at all regret or apologize for taking that comfort. Try living that nightmare and tell me I did the wrong thing. However, after some time, you have to stop hiding and face the darkness. Eventually, that thing that is so beautiful will hurt you.

This tattoo, a tattoo I cannot easily hide, is beautiful, but after not too long it definitely hurt me.

Sara’s second article is in the Boston Globe, but this time… it’s on the front page! She’s so ridiculously badassed… شرح البوكر

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So, under stress, I tend to make really stupid mistakes, mind blowingly stupid. Over the past few months, on several occasions, that mistake has been drinking way too much and lying about it. It’s such a stupid thing to do, but I kept doing it. Unfortunately, I did it again Friday night. I promised, I swore that I wouldn’t do that again, but I totally got smashed. I broke my promise again, I hurt someone I love more than my Goddamn fucking BiPap. I really hate that there’s something in me that could do something so awful. I keep thinking about the whys…

I’m nervous and uneasy just about all the time lately, it just doesn’t stop, it’s almost always something. When you find something to make that feeling go away, you really like it. Anything for some peace…

Alcohol has certain sensual qualities. It puts a nice warm feeling in my chest, it puts an amazing taste in my mouth. I really do love my peg tube, but sometimes I really do miss strong tastes while eating. I get certain flavors in my mouth with the peg tube, garlic, various spices, mint, but alcohol is by far the most noticeable…

Okay, this reason seems pretty stupid, but I saw drinking as a way to exert personal independence. Everybody kept telling me that I couldn’t do it, which, stupidly, only made me want to do it more. I wanted that choice. I wanted to prove that I could handle it. However, I definitely can’t seem to handle it, so it’s time to close the bar and call it a day…

So, I made mistakes that I can’t go back and undo. I can only go forward and not make those mistakes again. I’m going to see a doctor about some anti-anxiety meds, I’m going work on things that bother me, but I’m definitely through with the drinking. I wish I’d been smart enough to figure this out sooner, before I lost anything important.

This week I had an idea. I decided to hit Starbucks with Sarah, my assistant. The idea was to let her use my travel computer to tag the sixty some blog posts I neglected to tag while I sat with only a cup of tea and my iPod, and my thoughts. I figured with an assistant there to check in on me, I’d be able to just sit and think without having to worry about not having my switch. If I have my switch, I’m not exactly “relaxing,” I’m always doing something, reading, playing a game, writing, something. Also, I feel like I should be able to just sit and kind of meditate awhile. Driving’s another place where I attempt quiet contemplation, but trips are usually short and during longer trips I tend to simply nod off. So, Starbucks, one hour, the iPod and my thoughts. Stupid. Idea.

Quiet time is just time for uninterrupted fretting. I’m not good at just turning off the zillion thoughts in my head. Still, I feel like I should be able to do so…