My Whole Expanse I Cannot See…

Many, many years ago, way back when I was just about to jump into the crazy world of high-school, I was into photography. I wasn’t shooting digital, digital wasn’t really a thing yet. I had a Nikon N90 loaded with Kodak film, and two simple switches spliced into a standard remote, which served to focus and shoot. The camera was mounted on my chair next to my eye. I’d direct whoever to move me just so, and I’d shoot. I liked shooting portraits, and though I was only a fifteen-year-old nobody, I got the opportunity to photograph someone I admired right next to Steve Jobs, someone I admire to this day, David Letterman. So many amazing experiences stem from that one opportunity, meeting David Letterman would ultimately help to shape my adult life.

Dave had a reputation for being not particularly easy on photographers, it was generally, he’d sit for two minutess, and if the chosen photographer happened to get anything good, yay! If not, that was that. I was astonishingly nervous, not because I thought he’d be a bastard, but because I just wanted him to know I was smart, he didn’t have to talk s-l-o-w-e-r and LOUDER, as people often feel the need to do when meeting me. Normally, I don’t care, but I was meeting a hero, and I didn’t know how long I’d be there. Also, I hadn’t yet figured out that other smart people don’t automatically treat someone with disabilities akin to a golden retriever. Dave was totally gracious, in absolutely no rush to get me out the door. He sat on stage, in front of his desk, to be level with my camera. Unlike people warned me, after the usual “smile!” pictures, he let me keep shooting. I asked him to light up a cigar, he did. I asked him to look like he wanted to deck me, he did. I asked him to look loopy, he looked at me over the top of his glasses, cigar between his fingers, and said, “You know, you’re gettin’ to be a real pain in the ass, kid.” Then, cigar clenched in his teeth, he looked totally loopy. He let me shoot an entire roll of film. Afterward, he asked if I was ready for high-school, and I was like, “Um, kind of…” My mom explained that our district was trying to send me to a “special education” high-school, and I didn’t want to go, so we’re working on it. Dave said to stay in touch, and if he could do anything to help, just let him know. Then he said to me, “Try and stay out of trouble, will ya?” He was so… normal, absolutely not a “celebrity.” After Dave went up to his office, his assistant said, dinner was on Dave, gave us a bunch of Late Show hats, shirts, everything. We went to dinner and figured, that was the end of one Hell of a story. It was a spectacular experience… What more could one ask?

A week later, I had my photographs. Three of them turned out to be truly good portraits. To me, they’re the only photographs I ever shot that are genuine art. We also got a phone call that week, Dave’s assistant. She said Dave really wanted to help with the school situation, just say what and it’d be done. My mom thought about it and noted that the district was refusing to provide the technology I needed. If I had a computer, I could do my work independently, and that’d make it easier to fight to be placed in “regular education” with my peers. A few days later, a $5000 check was sent to CompUSA under the name of an obscure production company, and I got a fully loaded Power Mac 7200, a giant CRT-display, and enough software to run a small country… under one condition; we don’t go to the media with the story. That’s David Letterman, very kind, very generous, but very private. He’s sort of the Anti-Oprah, he does so much good, changes lives, but he does so with complete discretion. There’s no ego involved, he doesn’t help people for the show of it. After almost twenty years, I don’t think he’ll mind me telling this story, but otherwise, I think he’ll take most of the tales of his good works to his grave.

David Letterman really did help to shape who I am now. That first desktop Mac and the assistive technology to use it opened the path to independence, an eventual relationship with Apple, knowing Steve Jobs, and a thousand other experiences. Without Dave, so many doors never would have even appeared to me, let alone been opened wide. Graduating toward the top of my high-school class was just part of a much larger picture.

Like Dave asked in a nice bit of gallows humor on his final night as host of the Late Show, I’ll save a few stories for the funeral… I definitely have more. For now, I’ll just say to him, thank you, for the laughs, and everything else.

So, I ordered my Apple Watch. I got the Sport version, a 38mm face, Aluminum Space Gray body, black sport band (I’ll upgrade to leather in due time). Now, before people start with the…

“You can only move your face! What do you want with a fancy, high-tech, decadent, WRIST-watch??? Go die in a car fire.”

Well… aside from lots of potential practical future assistive technology applications that are bound to start popping up… I like watches! I’ve carried a pocket-watch everywhere I go for the last fifteen years. I ask to look at the time on occasion, I always see its silver chain sticking out of my bag, it’s aesthetically beautiful. Watches are beautiful, I’ve always loved them. I can’t wait to wear my Apple Watch, to have a precision timepiece AND an iPod right on my wrist. Then, as technology moves the way I think it will, I’ll have quite the Jedi weapon on my side…

Anyway, Jedi use or no, it’s a gorgeous watch. Having things of beauty in your life is a good thing, they give off a little light when darkness comes to call.

So, a reader recently left this… awe-inspiring comment, then she e-mailed me just to make sure I got it.

Here we go…

I’ve been following your blog for a while and I am sorry to see how depressed you’ve been feeling. One certainly cannot blame you and I think I’d be having a change of mind about the trach as well. As someone who works in the medical field, I say without reservation that modern medicine is at times a blessing and also a curse – no question about that. Could you (would you want to?) communicate to your doctors that you want the trach removed and want to be DNR/DNI? If people can proactively decide not to be intubated, can you retroactively decide against a trach?

Just a friendly suggestion, but what if you started writing some sort of legacy pieces that are more congruous with where you are mentally right now? Maybe try writing your own obituary, advice to future generations, survival guide for families new to a SMA diagnosis, how to deal with a global environment that is fucked, how not to fuck up the colonization of a new planet, etc. It could be depressing, honest, depressingly honest, satirical..

After I stopped feeling like a turtle who got smacked in the head with a liquor bottle, after I stopped gaping at my e-mail client, I read it again. I did just wake up, maybe it was the tail-end of some fucked up dream, but no. It’s real. I’m writing about it, so it must be real.

First, let me acknowledge that I’m sure the commenter is totally well-meaning, totally “just trying to help.” Nevertheless, it’s also hands down one of, if not the most, disturbing things I’ve ever read. I’m not even sure where to begin discounting its wrongness, there’s just so much.

Modem medicine is a blessing, my trach is a blessing, I’m so beyond blessed to have this little plastic tube in my throat and doctors who take such good care to make sure I get to keep going. I would never in a million years sign a DNR/DNI, I can’t even imagine “retroactively deciding against” my trach. I like my tubes and hoses right where they are, and if I ever need more, I’ll get more. I’ll do whatever it takes to keep breathing, and I want all my doctors to share in that idea. I don’t think anyone with SMA has any business signing a “let me die” piece of paper, and it honestly scares me to think that anyone in the medical field would encourage such. We have assistants and assistive technology and traches and portable vents so that we can get out into the world and have the chance to live a decent life, just like anybody else. Nobody’s guaranteed a decent life, but so long as we’re still breathing, we have that chance. That chance to be someone’t best friend, someone’s lover, even someone’s mom or someone’s dad, if that’s the road you want to try. Signing some “let me die, don’t bother saving me” paper ends all of those spectacular chances.

Yes, I’m pretty down, way down, but that has absolutely nothing to do with my disability or general medical condition. I really hate how that’s such a quick, popular assumption, especially given the fact that nothing I write even implies such. It particularly disturbs me that someone in the medical field could make that assumption. It just shows that society’s expectations for people with disabilities are far too low. الروليت الامريكي

I wrote about how it would have been better had that trach not gone in, I felt completely alone, and sad, missing someone who didn’t miss me, so I wrote how I felt, honestly, in that moment. I didn’t say, “I wish the doctors had quit trying to make that trach fit. If only I could walk, then everything would be so okay,” nor would I ever. That’s just stupid. I wrote about feeling like a fuck up, the weight of my mistakes. I didn’t want to feel that loneliness, that emptiness, so I wrote what I wrote.

People who commit suicide, or try to commit suicide, it’s not always because they genuinely want to die, they just don’t want to feel sad or lonely or empty, or whatever, anymore, and they don’t see a way past those feelings. العب بلاك جاك If you feel bad enough for long enough, you just want it to stop. I’m in the unique position of having that bad thought, that genuine, “I’m going to go open my wrists” thought, then having no choice but to feel it until it stops. It does stop, it always stops, that’s why suicide is such a shame. People run out of time before that feeling stops. For me, before that feeling stops, while I’m feeling it, I tend to write it. I need to get it out of my head and put it somewhere else. I am down, really down, and I don’t know when that’ll end, but absolutely none of it has anything to do with changing my mind about the little plastic tube in my throat. I lost my best friend, I lost someone I love more than I could possibly explain. I’ve made mistakes, screwed things up. I feel like I’m drowning, I’m scared I’ve made too many wrong choices and I don’t have enough time to do things right. My trach, my disability, my general medical state, they are no source of regret.

I’m fucked up like lots of people are fucked up. Elliott Smith, Kurt Cobain, they wrote song after song that tell stories like mine, stories I know from experience. They didn’t write those songs because some doctor stuck a little plastic tube in their throats.

I will never, ever regret telling that e.r. doctor to do whatever he had to do to keep me going. I’d make the same choice a thousand times over. I’ll die when God figures it’s time, when there’s completely nothing left to save me. One day, a hose will break, or a trach won’t fit, or some infection will fill my lungs until I quit breathing, nothing anybody does will save me, but people will try, and I’ll want them to try.

Oh, and no, I won’t be writing any “legacy pieces,” like I’m already dead. كيفية لعب بوكر I’m still here, I’ll keep writing about right now.

Okay, so, I enjoy guns, guns as thing. I like the sound a rifle makes when it’s cocked, I like the sound a revolver makes when one pulls the hammer back, I like muzzle-flash, I love the cracking sound machine-guns make… Aesthetically, I love everything about guns. I don’t like how guns are a thing people use to end other people’s lives, in a perfect world we’d only use guns to put down zombies.

Anyway, I have this Things to Do list that really isn’t getting done. I’m thirty, I’m old, the list needs to get moving again. To that end, one of my things is to fire a gun with an assistive technology switch. I have no idea how this would work. Would the switch connect directly to the gun? Would the gun be fired by way of software running on my MacBook Air that I’d access by way of my NeuroSwitch? I don’t know.

Do any of you know how I might fire a gun with a switch? I really don’t care what kind of gun I’m firing, I just want to fire at some target until said gun is empty. Can anybody help? I live in Tampa, I especially totally welcome local help.