This Is The Digital Soul of Nick Dupree

Posted by – March 14, 2007


Fear, Esophagastroduodenoscopy and The Ultimate Quarterlife Crisis

What’s my world like lately? I hesitate to even go there, because it inevitably veers into the dark side, where I (and most people) don’t want to go. But I think occasionally I should throw back the curtain and disinfect the area with some sunlight, let people know what I’m up to, and also try to forge some semblance of an internal narrative that would give me some illusion of control, and maybe it’ll be something I can build on. Recent events (turning 25, a hospital trip) also make now a good place to stop and take stock.

Few people really understand themselves, much less other people. Even fewer people understand people on ventilators; most people largely avoid what they’ve never dealt with first-hand, gravitating toward the familiar at the expense of the unfamiliar. A ventilator shouldn’t be as mystified as it is; as I pointed out earlier, it is just a glorified electric bellows. But perhaps there is also a natural aversion to being around someone who lacks what is essential to being alive: breathing. In a sense, as poet Mark O’Brien pointed out, we are the undead. I am much like William Wordsworth wrote when he witnessed the first form of mechanical ventilation, the iron lung; I’m “a traveler betwixt life and death.”

And now I see with eye serene
The very pulse of the machine;
A being breathing thoughtful breath;
A traveler betwixt life and death.
-William Wordsworth

This status can open up whole new layers of vision, a new way of life, unique experiences, but such a thin foothold in life is also very challenging. I rely on a ventilator for each breath 24/7. With each breath, the tubes move up and down, up and down. That means an inherent danger of a tube popping off, you have no air whatsoever, and you helplessly watch yourself suffocate to death. Tubes pop off every week, but I’m always saved by someone being in the house. I can hear people typing now “omg you take on such risk, you’re a hero.” No. Please. This doesn’t mean I’m some hero engaged in some grand, daily struggle just because I’m incredibly vulnerable. Given the options, 1) death or 2) rely on a vent, I naturally chose to survive, and I’m very grateful I have the vent and survive. But relying on a ventilator also means that even on a good day, life is tenuous, like this:



A lot of the time I forget the tubes are there, just like someone who wears glasses or big earrings can forget they are there, but the knowledge that I can pop off and asphyxiate, that my friend died that way, that I need someone who can help within earshot at all times, this is with me all the time, just as a diabetic person always has the knowledge they’ll need insulin in the back of their mind.

There’s a certain fear inherent.in my life. I have the visceral, animal desire of a weaker animal who wants to be protected from predators, and there are real dangers lurking: from accidents and incompetence to the cold indifference of a system run by spreadsheets and bean-counters. On the night of the 6th, I got some chicken lodged in my esophagus. This is simply a hazard of having a neck bent by scoliosis, but it had never been this bad before. No matter what we tried we couldn’t get it un-stuck. Friday we had to break down and take me to the ER; by ambulance, because our van hasn’t worked lately.

So we get there, and the attending physician is your stereotypical, arrogant, uncaring bastard (to put it mildly) and he doesn’t believe us that there’s chicken lodged in my esophagus. Not big news here, I’ve dealt with situations far worse; this crap is almost boring and mundane at this point. He says I’m breathing fine, so there’s no problem. This guy barely wanted to listen to Mom, much less ever stop long enough to strain to hear my increasingly weak speech…. He X-Rays me, but chicken doesn’t show up on an X-Ray, there’s no contrast, Einstein. He says it could just be an abrasion. Yeah, I’ve had that before, and this ain’t that. We say, “hey, we’ve got the disgusting stench of decaying chicken over here.” “That doesn’t mean anything to me,” he says. I guess he was just going to send us home. I wonder how many people this doofus has killed? I protested. Mom insisted. Finally we got a GI consult and the GI doctor was great. He put me to sleep, did what they said is called an Esophagastroduodenoscopy (he put a scope down my throat)

What a video endoscope looks like


and he pulled the chicken out. It was so wedged, pulling it made it stick worse. But victory was finally achieved. I spent the weekend recovering. Now I’m back to the status quo—-YAY….

This incident is one of countless times that having Mom there has ensured my survival. It would indeed be hard to stay alive as a severely disabled person without someone there who is inextricably bonded to you, ready to stick up for you when the inevitable challenges occur.

Yet since I was 19, the visceral, inarguable longing to be protected, has clashed with the visceral, inarguable, evolutionary desire to break away from the family and establish an independent, vibrant life, where maybe I can begin my own. This urge can never be extinguished in me, no matter how severely humbled and crushed physically I am. But going off on one’s own is, by definition, fraught with danger and inevitable errors, when I have no margin for error–if I’m not protected, I die, and die fast.

So, year after year, this hole in my soul has festered. What happens when the goal you had for 2003 is stifled over and over, and then you realize it is 2005? Now it is 2007. Layers of despair and cynicism settle in. I am so tired. I turned 25 last month. This is the ultimate “quarterlife crisis.”

I feel like a caged animal a lot of the time. I’m stuck, with nurses who are strictly medical, so there’s not much I can do. I spend 99% of my life silent. Sleep, get online, eat, sleep. Lather, rinse, repeat. How am I doing? Same old, same old.

In the ER, once my nurse stepped out, I told Mom, “please, put me in a place where I can share my soul with more people.”

I’m a person who has so much to share, so much insight on so many things on so many levels, and that all those thoughts and feelings are trapped within for lack of an outlet is excruciating. If death is the soul leaving the body, then maybe I’ve felt a form of it, my soul migrating to the online world where it (thank G-d) can find expression. This is the digital soul of Nick Dupree.

That I’m able to blog and express myself and my ideas is so immensely important to me. To all my readers, thank you so much. My supporters keep me going.

I hope for redemption, resurrection. It is still possible. I hope and pray 2007 is the year we finally relocate to a better city, better situation. I want so much. I am a hooked fish, and most misunderstand.


       When a trout rising to a fly gets hooked and finds himself unable to swim about freely, he begins a fight   which results in struggles and splashes and sometimes    an escape.... In the same way, the human struggles ...    with the hooks that catch him.  Sometime he masters his   difficulties; sometimes they are too much for him.  The   struggles are all that the world sees, and it usually    misunderstands them.  It is hard for a free fish to    understand what is happening to a hooked one.

         Karl A. Menninger (b.1893)                            "The Human Mind"

— quoted at the beginning of Chaim Potok’s The Chosen



Keep tuning in to see what is happening.

Nick

“A traveler betwixt life and death”

  • charmedamy

    Excellent blogging again Nick! {applause standing ovation}{facilitated by my power seat elevate, that is}.

    I don’t have a vent but I hear ya, and relate to the E.R. experience, life goals being obliterated by life circumstances, feeling trapped, unheard, ignored, dismissed,.

    You got a soul that gets it here.

  • Terri

    Gee Nick, I didn’t know you were such a gifted writer. Cute too. To bad you’re so young lol. Anyway, I liked your blog, I definately feel you when it comes to not getting them to listen. I have experienced this so much with both myself AND my sons. ty for mentioning your blog to the list.

  • Alana

    Nick…It’s time to blog about Team Nick. Explain the task, the challenges, and the different types of assistance you and your family need to make the move. Ask about where, resources, etc.

  • Melissa

    nick –
    i can’t thank you enough for sharing yourself as much as you did. i’m not on a vent but dependent on IVs pretty much 24/7 for hydration & nutrition and spend a lot of time in hospitals (that’s the short version). i’m about your age and you touched on so many issues that are SO close to home to me…the precariousness of life being maintained “articially”, the push/pull of yearning for independence while physically needing so much support, frustrating dealings with the medical world, and more. thank you so much. even though you don’t know me i feel like you “get” me more than most people in my life right now.
    ~melissa
    http://www.freewebs.com/sunfishoutofwater

  • Anthony/Kataris

    I usually don’t like to leave public comments. My own issues tend to surface in them. I’ve known you long enough and we’ve had many an interesting conversation such that I consider you a friend. As you know, with my own problems, I often feel trapped as you do. From my recent E.R. and hospital experience, I understand the lack of care given to people who have any sort of problem that has no simple solution. Fortunately, or perhaps unfortunately, my symptoms offer no physical manifestation. However, I know you understand what I go through, even though I can only guess about you. I feel this blog entry has brought me closer to you, my friend and I thank you for it.

    Ok, so I was right, it did turn into an about me.

  • Sharon Cobb

    You constantly inspire me.
    I am so lucky to have you in my life.
    Sharon Cobb

  • Anonymous

    Nick,
    A friend forwarded your blog to me. I have been a respiratory therapist for 30 years. I found your writing to be powerful and enlightening, even after years of working with vent dependent patients. A good reminder for those of us who can so easily become callous to the people we care for. Thanks, good luck, and I look forward to reading more of your writings.
    Scott

  • Nick

    So glad you’re reading!

  • Ryan

    Nick, I am a new reader to your blog (I found the link on the dancarlin.com discussion board). You shouldn’t be thanking your readers, we should be thanking you! You have so much to offer with your fresh and original ideas and insights…keep up the great activism and blogging! Some people only dream about changing the problems of the world, but you are actually doing something about it, and inspiring others like myself to do the same in the process! So, I say, thank you!

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