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
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
So, I watched Magnolia earlier, I really forgot its complete brilliance and beauty. It’s a long movie that doesn’t feel long, basically a series of interconnected stories, themes like, the past repeats itself, mistakes and regrets aren’t unique to the individual. It’s a fast movie in that the cuts between stories are quick, it doesn’t linger on one character’s life for too long. There’s also a lot of camera movement, not shaky Cloverfield camera, just lots of panning, zooming. The cuts and the camera give Magnolia a very fast-paced frenetic feeling, even though its thirty minutes shy of three hours long. It’s also a movie about really fucked up people, people dying physically, emotionally, people whose stories do and don’t work out. I was watching with a friend and she asked, “Are people really like that?” I didn’t feel like putting down the words, I just eyebrowed a “yes.” There’s a scene with Philip Seymour Hoffman, he’s a Hospice nurse trying to track down this dying fellow’s estranged son, trying to fulfill a final request. His son, played by Tom Cruise, turns out to be a pretty famous, pretty vile, motivational speaker, teaching loser guys how to have lots of sex with lots of women. So, Seymour Hoffman’s on the phone talking to one of Cruise’s underlings and says something to the affect, I know this is something like a scene from some movie, but I think movies have scenes like this because this actually happens. I mean, that’s so much of why we go to movies, because we identify with what we see, or we want to do or be what we see. I answered my friend with a “yes” because my experiences have been so much like the characters we were watching. Depression, loneliness, addiction, loss, regret, I know those experiences, felt them, feel them, been drowning in them. Yes, people really are “like that.”
Magnolia’s soundtrack is another reason I love it so much, Aimee Mann contributed most of the songs, specifically written for the movie. One particularly unusual, very moving scene, cuts to each character singing Wise Up. My favorite line, “You’re sure there’s a cure, and you have finally found it. You think one drink will shrink you ’till you’re underground and living down, but it’s not going to stop, it’s not going to stop, it’s not going to stop ’till you wise up.” It’s very surreal, but the scene totally works. It hit me really hard, I broke-down, sobbing. I breakdown quietly, nobody ever notices. Almost nobody. Listening to Aimee’s lyrics, crying, it reminded me of something.
It was four years ago, I was with Sara, my girlfriend then, kind of. We’d broken up, but started finding each other again toward the end of shooting our This American Life episode. So, she wanted us to go see a Chris Isaak concert, and I just wanted to go anywhere with her. The trach was still a little fresh back then, I’d still get nervous going out sometimes, so I’d have wine or brandy before getting into the car. Not the best way to cope, but it worked awhile. I didn’t want to not take her, I didn’t want to be weird and nervous, I just needed the crutch to get there. It wore off and I realized I was okay because I was with Sara, everything was always okay with Sara. So, we’re leaving the concert, which was great, we’re walking back to the car under a summer night-sky. I look up at the stars, bright beautiful stars. I didn’t want to be anyplace else, just right there, under those stars, with Sara. As we’re walking she takes my hand and out of nowhere starts singing Aimee’s You Do, off the Magnolia soundtrack. And you do, you do, you do, you really do… I never thought I could love her any more, but holding her hand, listening to her sing under those stars, I did, and I felt so completely loved. I quit the pre-outting drinks after that night. I didn’t need them, and we went so many more places together. We held each other and sang so many more times. Losing her hurt so much.
I never thought I could find again what I felt with Sara, but I did, so intensely, so beautiful, but that’s gone too. Losing Monica hurts so Goddamn fucking much. I don’t know how to be okay.2 comments
So, I’m flying to Cincinnati in a few hours, like, seven hours from right now. Their going to re-measure my trach because it’s still not right, but that’s not even the main reason I’m going. They asked me to come back because the doctors at Cincinnati Children’s Hospital had never seen anyone with SMA Type 1 at the age of thirty, they didn’t even believe the diagnosis. I couldn’t have SMA Type 1, it had to be Type 2, or 3, or maybe something else altogether. People with SMA Type 1, they don’t go twenty-seven years without being trached, if they see twenty-seven at all. Well, even though I don’t fit the diagnosis, at all, fancy genetic tests proved that I definitely have SMA Type 1. Maybe I’m some sort of SMA Missing Link, I don’t know. They’re going to run a bunch of tests and study me.
I just feel really weird, for lots of reasons I’m more uneasy than the last time I went to Cincinnati. I’m thirty, I shouldn’t be, but I am. I don’t know, I can’t articulate it just now, but I feel like such a failure.7 comments
So, I’m thirty today, and I don’t feel in good spirits.
I had this dream last night that I went for a fresh trach. They put me under for the procedure, I felt the drugs and I felt myself fall asleep, everything seemed so real. Then I started thinking something was wrong, I was someplace dark, and I kept thinking that I should be in the recovery area and I should have my computer and I should be talking to people, but I was just all alone in this unformed, incomprehensible, dark place. I kept telling myself it had to be a dream and I just had to wake up, but I couldn’t wake up. I kept trying, but I couldn’t make myself wake up. I was really frightened, if I couldn’t wake up, it had to be real. I started calling someone’s name, and calling, screaming. In all my dreams, even if I have my trach, I can still talk. That should have tipped me off that none it was real, but no. I kept calling for her in a voice she’s never heard before, but I was just alone in that dark place. I was terrified because I figured I really was dead, I’d never get to be with her again. That’s the part that scared me about being dead, I wouldn’t just wake up and go back to her. She always makes me promise to come back to her before trach changes, and I always promise.
I was so scared when I did wake up, my heart was pounding, I felt like I couldn’t breathe. She was next to me and I felt that warm, safe feeling, but not for long. I remembered she’d be gone soon, and I remembered some other things I don’t care to write, and anything that felt warm and safe went away. I just want today to be tomorrow.3 comments
So, lately my trach’s been bothering me, my ear’s acting up again, so I can’t hear so well. I’m just not feeling so great, I’m kind of nervous all the time. It’s hard to write like that, or just to focus on anything. Then there’s this other box of somethings I can’t write until, I don’t know, five minutes before I die, I guess. I’m trying, though. I’m trying to be better.1 comment
So, I thought I’d write lots about my trip to Cincinnati, I thought I’d write everything, but I just don’t have the desire. I feel more like writing the Reader’s Digest version.
I went to have my trach looked at by the foremost airway specialist in America, Doctor Robin Cotton. He personally looked down the hole in my throat, changed my trach out twice. He decided my trach tube should be 5 mm. shorter. So, we’ll see how that goes.
I did a lot of wandering around the city, and it’s actually a very cool place, I just wasn’t in good spirits, because of some things that I don’t plan to write, probably ever. I got a tattoo my first night in town, sort of a physical reflection of my intense melancholy. It felt necessary.
In the hospital, I mostly spent three days watching movies, as my left eye was swollen shut because of a weird sinus thing, so I couldn’t wear my glasses. I’m a little blind without my glasses. Mostly, I was lonely. I thought I was past lonely, but before I left I became not-soo-certain.
Anyways, I’m bored, this is boring, and I don’t have the will to make it interesting.No comments