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
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.11 comments
I’m trying to decide if I want to write something rather than just post this video of Aimee Mann singing 4th of July.
I really hate today, and every year this song seems more true. Last year was good though, I was in the hospital, but it was really good. I just want to go back there, because I was with Monica, and she was there, really there. I had to get a sinus CT scan, she’s walking next to me, I couldn’t keep from looking at her. She’s like an angel, I get lost looking at her, it’s like the rest of the world just fades away. The world fades and being sick fades, and I love her so much it scares me. It’s like, how can I feel so much for one person? It’s overwhelming, it scares me because I know she could go away, there’s nothing worse than her going away. I mean, I was in the hospital, I was sick from antibiotics, my sinuses hurt, my eye was swollen shut, everything hurt, and yet I was so completely, breathlessly, unthinkably happy. I was in some shitty hospital room, but in my head, and in my heart, I was at home.
This is so hard to write. When I write I’m completely in the moment, I’m back in that place like I’m there right now. I could write that evening so vividly.
We’re alone in the room after the CT scan, the sun’s setting over the bay, beautiful shades of orange are shining into the room through one large window. Monica, more beautiful than that sunset. I want to kiss her so badly, our first kiss as an “us.” We’d been together, yet not, since the day we met, but that 4th of July we really are together. After years, we’re together. All I want to do is kiss her, the room filling with shadow as that fiery orange sun sinks into the bay. She’s so gorgeous and I know I look like shit after days in the hospital. I say, “Dear, I have a really odd question, I’m probably the only fellow who has ever, and will ever ask you this sort of question. I’m really oddly very nervous even writing this, because it is such a bizarre question, and…” She says, “Michael Phillips, you make me crazy. Just tell me!” I say, “I know my face is probably really icky, just, I really want to kiss you… Could you maybe get a hot cloth and make me less not pretty so I can kiss you? I just, I really want to kiss you. Can I kiss you?” She goes to the sink, runs some warm water over a cloth, runs the warm cloth over my face a little, gently brushes my cracked lips. She says softly, “You’re fine.” She leans in, around all my hoses and tubes and wires, leans in and kisses me, softly, slowly, our lips brushing, then embracing deeply before letting go. It felt like magic, I felt so alive. I knew even more that I honestly wanted to spend my forever with her.
Writing that hurts so fucking much, she’s so far away now.
I just want to go back, but I can’t. I want to go home, but I can’t. She doesn’t want me, doesn’t get lost in me the way I get lost in her.
I don’t know how to feel okay, She’s left before, I’ve been with someone else, but it’s not right, I just hurt that person. Part of me is always with Monica, even when I’ve tried to tell myself otherwise. It just doesn’t work.
So that’s today’s memory lane, with all the pathos and pain. Another chapter in a book where the chapters are endless and they’re always the same, a verse, and a verse, and refrain…3 comments
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
I started writing about tattoo #53 at like, 7 AM, after a really bad dream. As I got to the sentence about dying, the power went out. Certain alarms didn’t work right, it was scary. I was scared. I used to be just scared of dying, dying and going to Hell. I’m still scared of that, I’ll never not be, but I’ve just become more scared of something else. I’m really much more scared of dying and never seeing this one person ever again. That’s the part I talk to God about, everything else is unimportant. At least, not important enough for prayer.1 comment
So, this tattoo is from Aimee Mann’s highly acclaimed song, Wise Up, off the soundtrack for the film, Magnolia. I already wrote about Magnolia and Wise Up a few weeks ago, so I’m not going to do it in any great detail again here. Oh, don’t confuse the poppy as being part of this tattoo, it isn’t. Anyways, Wise Up is just a really beautiful song, the gist of which is life will continue to feel bad until you do something to make it feel good.
Right now, I just want to be next to someone, to hold her close, tell her how I love her so completely, ceaselessly. I’d sleep. It’s easy to sleep when I don’t feel like part of me is somewhere else. It’s easy to sleep knowing that when I wake up, I’ll see her exquisitely beautiful face. Her eyes would be all drowsy, but silently say that she loves me. She’d ask me if I slept any, she’d tell me about her crazy dreams. I haven’t been there in so long, but that’s how it was. I could wake up next to her every morning until I quit breathing, the permanent quit, every morning I’d feel blessed. She’s the only person who lights this empty place in my heart, it’s like a million little twinkly white Christmas lights strung all over a huge ferris-wheel. That’s how she makes me feel inside, bright and happy, like there’s adventure all around.
I want life to feel good, like I absolutely know it can, entirely. I mean, as dark as I get, it’s not because I believe life is just one concatenation of misery until you’re dead. I don’t think that at all. Life is something gorgeous, there’s been so much beauty and adventure in mine, so I know for a fact that life can be all puppies and flowers. There’s just this hole in me, this giant abandoned fairground that’s shrouded in sadness, loneliness. I’ve done some stupid, awful things trying to fill that place with light again, which only served to make that place darker, and lonelier. I need to wise up, that’s the point. Stop doing things that make me more empty, stop digging myself nice, deep holes. Don’t die this way.
I miss my light, more than I can explain.No comments
So, this is from a Nirvana song, Blandest (Demo), which is off their With the Lights Out collection. I wonder how many songs from With the Lights Out would have been polished and put on studio records and become part of the broad lexicon of pop-culture rather than be these really obscure treasures that pretty much only Nirvana fans ever find. What if what if what if.
Anyway, you all puzzle out what if means and why it’s etched into my chest forever, my forever, at least. Leave comments, try to guess, whatever.1 comment