My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

I’m just so…

May 29th, 2015 | Category: Life

I’m just so fucking tired, uneasy.

Loneliness and bad dreams.

1 comment

Not. A. Thing. Nothing.

May 01st, 2015 | Category: Life

So, I have nothing to post today. Not a thing. Nothing.

I’m just… down. My trach’s really bothering me, I’m feeling really uneasy melancholy.

Lonely. I feel very alone just now.

3 comments

I want to go home

July 12th, 2011 | Category: Life

Nothing feels good, I’m all kinds of scared. I hear rain outside, tapping at my window, making it so I can’t not think about someone, making me feel so alone. I can’t fall asleep, I’m too scared of my bad dreams. I want puppies and flowers, I want to go home. I want someone to hold me close and tell me everything’s okay now, I don’t have to be scared and alone anymore. It’s okay to sleep, “I’m right here, don’t be scared. I love you, I’m here.” I want to go home, I don’t want to keep feeling all this sad and scared  and dark.

I know it’s my fault, I know…

No comments

Started writing

July 10th, 2011 | Category: Life

So, I tried writing, started writing, some flash fiction today, but it didn’t go anywhere. I just couldn’t, the words didn’t come bleeding out of me. I’m just not here, I’m so not here.

No comments

Wrong, wrong, wrong

July 08th, 2011 | Category: Life,Opinions

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.

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. 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. I’m still here, I’ll keep writing about right now.

12 comments

Not okay, so okay

July 05th, 2011 | Category: Life

I’m really not okay just now, I don’t know how to not feel this. I screw everything up. I don’t try, I just always seem to, and I deserve alone.

No comments

Too screwed up

June 28th, 2011 | Category: Life

I’m too screwed up, and nervous, and lost, and alone right now. I’m so lost, so alone. I can’t think straight or write straight, or DO ANYTHING. I knew it’s all my fault, I accept that, no other way to see it. I’m a worthless waste. I ruin everything.

I won’t be writing.

No comments

Bad yesterday

June 25th, 2011 | Category: Life

So, yesterday was bad. I had to have two trach changes, which is never good, yesterday was just particularly bad.  I’m trying to decide if I feel like writing all of it, it, I’m tired. I could do a full writing tomorrow, but then I probably wouldn’t. I’m just tired, I feel worn, small. I feel small. It was scary, I’m scared. I don’t know what I’m doing anymore.

1 comment

Won’t say

June 24th, 2011 | Category: Life

I’m scared because I, this could be some really pretty, sweeping narrative. I have the skill, I know my craft well enough to paint this picture of  scared and lonely, but fuck it. I don’t feel pretty inside, I don’t have any pretty words to bleed, even if I cut both wrists wide open. She won’t say, “I love you! Come back to me,” so I’m scared. The drugs will hit me, and I’ll get sleepy, and nothing will feel beautiful, and maybe I won’t find my way back.

No comments

Today’s trach

June 24th, 2011 | Category: Life

I’m scared about today, I shouldn’t be scared of a trach change, but I am. I hate feeling like this, I hate that I’m so scared. I just want to go home. I want to feel good and safe and okay and not scared. I… It doesn’t matter. Saying anything doesn’t matter.

1 comment

Next Page »

%d bloggers like this: