My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

Jul 8

Wrong, wrong, wrong

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

12 Comments so far

  1. tasha July 8th, 2011 7:29 pm

    fuck yes

  2. Laura July 8th, 2011 8:53 pm

    WTF.

    Wrong, wrong, wrong is right.

    The darkness fucking sucks no matter the source. Hope you find your way out of the abyss soon.

  3. Alisa July 8th, 2011 9:28 pm

    YES. Thank you for writing with such passion. That’s exactly why I keep reading your blog day after day! Keep it up.

  4. Matt July 8th, 2011 10:27 pm

    Good job, mike.

  5. Leslie modena July 9th, 2011 1:25 am

    Right on, Michael! And the same goes for anyone with tech support, who wants to keep living, to see what’s next, to make their way through joy and trouble, down “the stumbling generations of man.” Your eloquent, honest, real description of life means so much to me and everyone you touch with your words and feelings. Thank you.

  6. kt moxie July 9th, 2011 9:19 am

    Holy crap. I’ve been a lurker for a while, and have seen your moods go up and down on the blog. I NEVER assumed that your mood was a direct consequence of your disability. The fact that this woman does means she may not be the best for helping disabled people in the medical profession. Feel free to complain about your trach — because that can be scary and, well, SUCK. We know that doesn’t me you want to die! Sheesh, lady!

  7. Veronica July 10th, 2011 8:30 am

    I’ve read this blog entry several times now and I can’t even know where to begin to comment. “Prejudice is ignorance”, has that ever fitted better than now?

    I am one of those this lady would probably call no lifers. I have a trach as well, have had it since I was 8 (I’ll be 26 in August). I got it after an emergency and I was heartbroken when I got it. I was told I’d perhaps not be able to talk again. I had just learned how to write at school before all this happened and I cried and felt my life was over and I wrote all this with pen at the hospital. As a pretty well functional 8 year old girl, getting my life turned up-side-down like this was horrible. Yes, I admit that. But the alternative could be so, oh so much worse. I was one of the lucky ones who are able to talk, and I am very gratefuk for that, but even if I wasn’t, I know it’d be ok. Dying is no alternative, it is no option, it is no easy way out. This is the life of which we are granted, why are we supposed to feel less about ourselves than others just because we have a plastic tube in our throats? (In my case, also a tube in my tummy since I can’t eat)

    I have SMA as well. I have met many with or without a track, there is no need for legacy pieces for anyone. Not a single person would like to go ahead and die because of something as silly as having a bit of help in surviving the days. The trach/vent/tubes are not a portrayal of a life that is less worth any others or that it is the ultimate depression one can reach. The ultimate bottom of all oceans. Like Michael said, modern medicine is a damn blessing and I am grateful for every little thing I have that maybe not “normal” people have or would think is “natural”. Without them, there’d be no Veronica in this world, there’d be no Michael, there’d be no other people in similar situations. It might fuck up the world as this lady so nicely put it, we mught be a hindrance to many in the society (go figure), but don’t tell me there are people out there who doesn’t appreciate our existense on this planet.

    People like you need a wake up call and since you’re apparently working in the medical field, I find it very disturbing that you haven’t got one yet. Why are you even working there if you can’t see people for who they truly are and not for what they are? Instead of saving lives, you’re taking lives by encourage to choose differently than life saving medical help. Who are you to say modern medicine is a curse anyway? If there is no sign of life AT ALL, keeping a person alive is a different story all together, but people like Michael and me (michael who is in many ways the male version of me), actually do have a life. Maybe not the kind of life “normal” people have, but we are alive and we live our lives.

    We are not put on this planet to give up and die the moment things get rough. Life is not about giving up once the hurdle gets a little too high. We’re here to rise above. You see, even people with fucked up non existing muscles, tubes and what not, can do that.

    Surprising, huh?

  8. gina July 10th, 2011 10:43 am

    good, good, GOOD response and perspective.

    why not just wake up one jazzy day and ‘write your own obituary’… >:/ wtf?

  9. Mindy July 21st, 2011 10:48 pm

    Hi Michael. Your response is brilliant. That lady sounds jaded – perhaps it’s time for a career change.

  10. Rachel July 28th, 2011 10:44 pm

    I have a disablity also not the same as yours. I can talk/breath on my own. I just can’t walk. I told my family & friends to let me go if I could never talk again because I was taught from a young age to never stop using my voice. It is the only thing besides my brain to stop me from being abused. I can’t run but I can scream.

    I still don’t know if i’d want to be alive without my voice. I am speaking for myself not you Mike. I don’t think I’d have what it takes to make in your shoes Mike I pray I will never have to find out.

    – Rachel from CA

  11. Angel August 15th, 2011 3:25 am

    Thank you for writing this.

  12. tj November 27th, 2016 1:27 pm

    “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 loved this part, esp about your unique position…I was curious about your writing it…I see people threaten suicide more often than I’d like–on Facebook, Reddit, etc. I have these feelings too, I suspect most everyone does. I may write about them, even talk about them but I’d never share them online publicly…which is weird. Maybe I’m a hypocrite..Do you self-censor when you write or do you strive for an immediate emotional honesty?

    Thanks for writing this.

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