My Whole Expanse I Cannot See…

I’ve been having a rough week. As I’ve said, not being able to leave my room wears on me. سباق الخيل مباشر I can, but only when my brother can take me, and only the dates/times he can go, and sometimes he’s only available a certain length of time. He has a job, a wife, it’s not his fault.

All the isolation, loneliness, anxiety, it’s all come back. ماكينة القمار It’s been two years without the independence Tivoli first gave me, I’m just really frustrated. تكساس هولدم بوكر Sad. Bored. Nervous. Lonely. I’m not complaining, I’m just trying to explain why I get so down, why I can’t write. Someone wanted me to write my day, but there’s nothing to write. I watch fucking Dr. Phil. I can’t stop thinking about how everything WAS, how I miss people who are gone.

I’ll be on my local 11 PM news…

A preview of my little story…

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.

I just want to feel something good, but I won’t. It’s my stupid fault.

I’ve never written about politics here before, but something’s really bothering me, there’s something going on in America that’s really upsetting me. That thing is, “The Obama Paradox,” I didn’t coin that term, I heard it on the Rachel Maddow Show. It’s a term that illustrates the fact that the reality of the Obama Administration doesn’t match public perception. His approval rating kind of sucks, people are unhappy with him. The perception is that President Obama isn’t really doing anything. He was supposed to do things, big important things, but apparently he isn’t, I guess. I guess Republicans and Democrats were supposed to come together in some orgy of cooperation, every American was supposed to ride to their kick-ass awesome new job on a unicorn, we were all supposed to be awash in a sea of bliss, but since those things haven’t exactly happened, President Obama, well, sucks. Unfortunately, people don’t seem to follow the facts.

The facts are these, President Obama took office in the middle of a disaster caused by eight years of BAD decisions by the previous administration. Our economy was on the brink of  collapse, on the brink of a second Great Depression. It’s been his job to dig us out of that mess, and in a really ugly political climate. Republicans do not like him, they’re not pleased that they lost the election. With all this against him, his administration has managed to pass record amounts of landmark legislation. The Obama Administration passed sweeping Wall Street reform, Student Loan reform, Health Care reform, a new Hate Crimes law (something that so many others have tried and failed), a very important Stimulus Package that’s actually working, that included the largest middle-class tax-cut in U.S. history, he’s done all these things and more in under half a term.

President Obama is doing things, really important historical things. If he has a fault, it’s that he’s too subtle about his accomplishments. He doesn’t have a giant PR machine touting his achievements. While the right-wing media slams him with lies, he quietly continues his work rather than get mixed up in some PR smack-down. So, give President Obama some credit, he’s definitely earned it.

So, after thirty-five hours in the Cedars-Sinai emergency room, I’m officially in a real room. See, yesterday morning the little balloon inside my trache tube decided to burst, meaning that the air usually directed toward my lungs began coming out of my mouth. A few minutes later and I’m on a stretcher heading for an ambulance parked behind the Beverly Hilton. It was clearly the perfect way to start my day, and end my vacation, the perfect way to say good-bye to Sara. 

I get to the e.r. and the trache really needs to come out, but the ENT (trache doctor) is about two hours out, so e.r. doc decides to go for it old-school style. I get a little subcutaneous morphine, he yanks out the dead trache and jams in the new one, while I simply gurgle and gasp. At this point the doctor’s really crankin’ on my neck, he looks nervous. It’s exactly what you want to see dance across your doctor’s face as he fucks with your air-way. He’s nervous because he can’t secure the new trache, I’m bleeding and not looking particularly good. He decides to pull out trache number two and toss in a third. Fortunately, blood-loss and pain aside, the third time’s a charm.

However, I’m still here in the hospital because, as it turns out, I’ve been traveling with a faulty ventilator all week and after the trache trauma I couldn’t stand the shallow breathing. Apparently, the vent has a leak, which is why I’ve felt kind of funny since I left Tampa. I’m nervous a lot lately, so the tightness in my chest seemed like my usual dumb fucking idiocy. At least I’m an accurate dumb fucking idiot.

I’m sitting in the hospital, waiting for a replacement vent, trying to get new flights back to Tampa. My neck hurts, I’m exhausted. Everything good seems far away. Ira, the red-carpet, the parties, Sara, it all seems like it’s behind L.A. SMOG. I wish I could find my way out.