My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

Jul 22

If you’re thinking about a DNR…

Category: Life,Opinions

So, right now people all over the world are in Intensive Care Units (ICUs) with some sort of respiratory infection. These people usually have some sort of underlying medical condition, Spinal Muscular Atrophy (SMA), like me, or maybe Amyotrophic Lateral Sclerosis (ALS). The doctors haven’t figured out exactly what’s wrong yet, or maybe they have and it’s just really bad, these people are teetering toward respiratory failure. They’re being treated with antibiotics, but maybe the treatments aren’t working yet, or they’re just working really slowly, so of course, these people are scared. They’re exhausted, and scared, and when things start going from bad to very bad, many sign a Do Not Resuscitate (DNR) order, a piece of paper that tells doctors, “If I quit breathing, don’t put a tube down my throat so a machine can help me breathe, just let me die.” These people have girlfriends, boyfriends, husbands, wives, kids, cats, dogs, some even have beloved pet turtles. These people have good lives, but they’d rather die than be hooked to a ventilator. That’s how scared they are of needing a machine to breathe, maybe forever.

I used to be terrified of a vent, but right before I went into respiratory failure a few years ago, when a doctor asked me if I wanted to live, no matter what… I said an emphatic, YES. Since I had that experience, I might tell someone in a similar situation…

I know you’re in the trenches right now, I know you’re exhausted, and depressed, and really scared. Not being able to breathe is honestly probably the worst thing anyone can endure. I’m sure you’re so scared and tired you can’t think straight, and if that’s not enough, you’re in pain too. It fucking sucks, and I know that it fucking sucks because I’ve been where you are right now. I’ve been in the ICU, my lungs all wet and heavy, with pain to make the situation feel like an even more spectacular Circle of Hell. I was terrified of dying, but I was also terrified of living and being miserable. I was afraid I’d never go to another movie, or hop another plane to someplace beautiful, or make love to a woman ever again. I’m sure you’re thinking similarly yourself just now. I know you’re scared that that’s what having to be on a vent will do to you. I was terrified in the same way. I was afraid they’d cut a hole in my throat, connect me to a vent and that’d be the end of everything I ever wanted, still, I let it happen. I stumbled head first into my worst nightmare. You know what though? When I actually got there, it wasn’t that bad.

If you have to be on a vent, let it happen. Go with it. Once you’re breathing right, and you’re not nervous ALL THE TIME, you’ll be amazed how much clearer your head will feel. Once you’re breathing right, you can rest and get your strength back. You’ll start to feel like you again. You can take your pain meds, get lots of sleep, you’ll get proper nourishment, and before you know it you’re back to your old self again. All that bad stuff I was scared of, none of it actually happened, and it won’t happen to you either.

You’re allowed to be tired, and scared, and even pissed off at God if you feel like it, but the one thing you absolutely cannot do is give up. You have a family who loves you and needs you. You have too much to live for to be signing some stupid DNR. Fuck DNRs, you have way too many good things ahead of you, don’t give up on them.

Part of me doesn’t understand why I’d have to write that at all, why a person wouldn’t fight for absolutely every second with the people they love. I have, and I know I will again, and I know that one time I’m going to lose no matter how hard I fight, but I’m going to fight it out anyways. In my heart, I don’t understand why people give in.

Intellectually, I know that society as a whole isn’t particularly encouraging on the subject of living with hoses and tubes. People don’t even like to talk about it, they just know it is awful. In pop culture, films like Million Dollar Baby tell people suicide is definitely the way to go. The Diving Bell and the Butterfly shows people this fellow whose life is tragic and beautiful in a sad sort of way, this fellow who ultimately dies in this horrific, yet noble fashion. Because, you know, we disabled people with hoses and tubes are all tragic, and sadly beautiful, and noble. It’s based on a true story, but it’s unfortunate to me that it’s the only kind of story that seems to sell. Oh, and that doctor who saved me, a few minutes before he told my mom to let me go. He said, “He wouldn’t want to live like that,” and in a moment of exhaustion, she thought maybe he was right. Fortunately, I was awake, and my mom told this doctor that it wasn’t up to her.

I know DNRs can be valid, terminal illness is going to end badly one way or another, but I think far too many people sign them under the false perception that breathing through hoses and eating through tubes is a fate worse than death. The medical system isn’t exactly nurturing on the subject. No doctor ever sat down with me and talked about how life would be very different, but I could still be me again. Doctors tend to have very low expectations in this situation. I just happen to be ridiculously stubborn, which kept me going.

The thing is, it’s really not the end of everything, technology and supports can provide a good life. Computers offer communication, ventilators are totally portable and reliable, restaurants will absolutely blend food that can be sucked into a syringe and pushed into a feeding tube. I eat out all the time, I have a glass syringe that feels swanky and eccentric. It’s not eating like it used to be, but the conversation with whoever I’m with is always good, and I’m still satisfied at the end. I travel. Last Summer, a friend and I, and an assistant, took a train to New York City. We spent a week in Manhattan. I get to fall asleep at night with the woman I love, with this woman who loves me and would never want me to quit fighting to come back to her. Nobody told me any of this was possible, I just knew the things I still wanted and I didn’t stop until I had them. The things that I want now, I’m going to chase them down too. Who knows if I’ll have them or not? I don’t know, but I believe they’re possible. That’s the story I’m pushing, a story of ultimately believing blindly in possibilities, a story of trying everything, no matter the degree of stupid or crazy.

This life isn’t always easy, sometimes it’s absolutely fucking difficult, but I don’t regret telling that doctor to do whatever he had to do. I don’t think a person should throw away their life because they’re afraid to experience something they’ve never tried, afraid because nobody ever tried to tell them that living could turn out awesome too.


9 Comments so far

  1. Jodi July 23rd, 2010 7:09 am

    This is very powerful, Mike.

  2. Libby Jackson July 23rd, 2010 10:51 am

    Very, very powerful and thought-provoking, Mike.

  3. arsenalgear July 23rd, 2010 7:42 pm


  4. Pati July 25th, 2010 3:04 pm

    Hey Mike.

    This is an awesome post. I love your fighting spirit. I’m not afraif of being put on machines. I was thinking about it for a different reason but this post made me feel like a real asshole for it.

    I love you.

  5. guy July 25th, 2010 9:38 pm

    As long as someone else is paying the bill sounds pretty selfish. When the rest of the world is working everyday to pay for vegetables.

  6. michael July 25th, 2010 9:47 pm

    guy: Yeah, I’m definitely selfish about wanting to live and what-not.

  7. Bill Gx July 27th, 2010 8:35 am

    It’s shameful how we make arbitrary decisions about the lives of others based upon convenience. I’m glad you were able to speak up for yourself as well as those who might not be able to speak for themselves. Thank you for shedding light on the issue.

  8. Steph August 2nd, 2010 11:09 pm

    This is some of the best writing you’ve cranked out. Maybe ever. Go.

  9. Amy Schmitz August 3rd, 2010 7:15 pm

    You were fortunate to not have pervasive underlying disease and a full functioning immune system when you had to make that decision. There are those that are not so lucky, Mike. Tell me, If you felt you would develop one lung infection after another only to slowly suffocate in the air around you, would you make that same decision? And if you were a physician who not only understood his own disease, and his body’s response to it, more than anyone around him…including other doctors…BUT also the molecular complexities of it, would you make that decision? You see, there is a different point of view that has nothing to do with fear at all….but merely with acceptance. Acceptance after a long and hard-fought battle. We have heard your point of view several times during the last few weeks as we faced this harrowing situation, and yet have you stopped to think of ours? I know we have stopped to think of yours…and we have respected it. But the timing of this post, and then a repost of it, during the time of our family tragedy is beyond disrespectful and has felt like downright cruelty to us. I would have expected more from someone who has been “in the trenches.”

    And I would expect you to NOT make judgements, especially when you clearly DON”T understand a damn thing about this situation. Just because you are a veteran of the ICU does not mean you know anything about someone else’s illness or their experience there, any more than we could deign to know now what YOURS has been. This is MY opinion for a change……