It ain’t me.

A while back, I decided, erroneously, that I wasn’t going to broach this topic. A recent visit with a cardiologist has really been bothering me, though. It wasn’t that the specifics of the consultation prompted a seemingly sympathetic response on their part, it was that I couldn’t do anything to head it off, so to speak.

They were simply absorbed in their own feelings; it didn’t have anything to do with me. I’m used to that, too, but not in anyone I expect to be acclimatized to the reaction the same as myself. I’ve fumed for a couple of days, but then it finally dawned on me, I deal with this now or I deal with it later, but I’m really not going to feel like it if I avoid it like I wanted to.

So you may want to quit reading here.

The short and blunt version: my life expectancy at this stage is somewhere between 2 1/2-5 years. Given the speed at which the disease has progressed and the fact that there is nothing that can be done to treat it beyond what’s already been done, the reality is probably going to trend toward a more conservative figure.

The only part of this that bothers me is the idea of it upsetting anyone. I won’t blame anyone for how they react or if they don’t react or whatever — posting this here, where almost no one will see it, is actually kind of chickenshit, but this is more something I just need to vent. Again, if I’m not exactly tickled about this, I’m certainly comfortable with the idea.

And it’s a hell of a lot better than it was a short time ago, when I figured it was down to months.

When I first found out for certain I had COPD, I just figured it was something you lived with. Then I started reading that it drastically reduced your life expectancy; some estimates put it at ten years from the time of diagnosis. But back before summer kicked in, when I was still coming down with pneumonia every other week, I got very keen on finding out what the specifics were; I did not want to find myself knocked on my ass and suddenly unable to do anything but be sick and helpless for months.

Without a starting point of reference, though, all I could learn about the subject was remarkably vague, and no one was actually telling me anything. “Stop smoking drugs” was both fundamentally unhelpful and demonstrated no comprehension of the subject whatsoever (I can’t even handle UNscented SOAP, although to be specific, a vaporizer delivers THC through heated water vapor, which has no impact on tissue). I eventually got hold of my medical records, though, and found the magic number:

FEV1:25%/1.09L.

This was, to me, the most salient product of the lung function tests I had done. To oversimplify, my lungs only filter about a quarter of the CO2 out of my blood that they would if I didn’t have COPD. It should have taken roughly ten years to get to this point; it’s been two, maybe slightly more.

There are some good studies to show a correlation between COPD and smoking marijuana and tobacco; there is none for marijuana alone (although this will produce the inflammation that causes the problem, hence the vaporizer). Yet in the same breath (hee!), the physical damage has all been in the last two years; I’ve been speculating on this forever, but I was good to validate the suspicion. To give one some indication of the progression, when I went in for my ECG last week, the specialist basically had to shove my left lung out of the way to get an ultrasound of my heart; the bulae (scar tissue) obscured it, otherwise and there was some question as to whether the result would even be usable.

So it’s down to “how do I hold up this winter”?

There’s a depiction in a Harlan Ellison short story whose title eludes me of an end-of-the-world scenario, in which a man in a grocery store becomes aware of what’s happening and informs the cashier that he had prepared in advance for the possibility. “I’d like to finish paying for my purchases, please.” This summarizes my reaction quite nicely. I want to outlive Tobias, as I fear that no one else would quite appreciate him as I do; I probably won’t.

But that’s how it is; you get settled into the action reel and the power goes out before the conclusion. Knowing this beforehand is seemingly maddening unless examined, since after the fact, there is no conclusion, no story, no observer to be aware that it was left un-concluded.

And frankly, it’s equally maddening to have devoted so much time to experiencing this reality from the other side of the equation and, having at last found myself on the opposite side, compelled to avoid talking about it for fear of upsetting anyone.

In someone else, this might also come across as attention seeking behavior; however this couldn’t be further from the truth, here. In my own self-estimate, to sit on this sort of thing is antithetical to the character I’ve established for myself. I don’t hide anything, I wear my heart on my sleeve, and I’ve had my fair share of people who have thanked me for how I approach the whole issue who were actually going through the same experience themselves. I’ve certainly never forced it on anyone, but in this instance, well? This is actually about me.

Unless I’m hit by the proverbial bus, at some point, I’ll simply stop posting. I finally hammered out the worst of it with everyone save a couple relatives, and got them to back off making “everything will be fine” type noises. Hopefully no one will mistakenly come looking for me.

Honestly, I’d prefer not to be mentioned at all, but tasteless jokes are preferred. I certainly won’t hear any of them, but honestly, I don’t like the idea of being missed and don’t expect to be in a broad sense. There are nine billion people in the world and I wouldn’t even hazard a guess how many I am identical to in my entirety, let alone any single aspect.

My single, greatest priority is to pull this off with as much dignity as I’m capable of. So far? So good. Enough said.

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  • Comments (12)
    • Max Bell
    • September 3rd, 2010

    Oh, shit. Way long-winded. Whatever.

    Again; I don’t expect anyone to actually read any of this shit. I suppose I could just dump it in a Word file, but that wouldn’t quite be the same thing. I really don’t want the ranty-killy sloshing around in my gut right now, and I really don’t want to catch the bus just as the teabaggers are taking over the world.

    • Chester Emerson
    • September 4th, 2010

    Ah, shit. We all die of something. Myself, I’d rather it be a surprise, doing something I like. But, unless I commit suicide, I won’t be able to choose the time, place, or way. But for it to happen in slo-mo just blows. Just my opinion.

    I won’t tell anybody unless you tell me to, but damn buddy, it’ll be hard to keep my mouth shut.

      • Max Bell
      • September 4th, 2010

      They’ll find out on their own. I’m not worried about it.

      Thing of it is, COPD rarely kills anyone outright; most die from pneumonia. Those that do pass from COPD do so because their lungs finally fail. There’s not much surprise in that, unfortunately. In the same breath, that’s really what I wanted to emphasize, here. I came to terms with this a long time ago; my morale is great. Where I was having problems was when people were talking about the long term, or things I really can’t do anymore simply because it’s too uncomfortable.

      When that happens, I want to grab them and go “Stop, this isn’t going to happen”, but then they wind up trying to “cheer” me up. In short, it doesn’t register at all, and I keep revisiting the same problem over and over.

      Regardless, the important thing is that I’m having a good time. Have spent quite a bit of it with the hoglette; really getting into the communication thing. Last night I figured out that I could get him to stop huffing and popping every time I moved around in bed by clicking at him, which encourages him to click back.

      Literally, I’m telling him the noise is me and he’s acknowledging it.

      Pretty good for a mammal of small brain.

    • Dawn
    • September 4th, 2010

    I don’t know what to say except you are handling it the best way you can and if you die before Tobias does, if you haven’t already found him a home, I would be happy to try and take care of him and be his home. I don’t know what causes COPD but I sure know I never want to go through what you’ve gone through and whether you want to know it or not, when your time comes I will miss you.

    • Max Bell
    • September 4th, 2010

    Thanks, Dawn, although Toronto is a long way to travel for a hedgehog. He’ll most likely wind up with my brother, though, since he’ll have had the most exposure to him.

    ((((Dawn))))

      • Dawn
      • September 5th, 2010

      You’re welcome. That makes more sense. I didn’t know how many relatives you had and/or if they’d be willing to look after your pet. I’ve already asked my mom to take in my cats if anything ever happens to me before her and she said she would. And you’re welcome.

    • Laroquod
    • September 6th, 2010

    I read it, I read every single word. And you will be missed. It may be a cliché and it may make no sense with nine billion people in the world, but dammit it’s the truth, and like you, I prefer to tell it. (BTW that’s one of the things that will be missed about you.)

    My only fear is that this signifies a sort of giving up that may result in health habits not conducive to ‘making it’ because — it *is* possible. Perhaps not likely, because I don’t know the exact situation, but to go anecdotal, my grandfather had COPD for *decades*, smoked filterless cigarettes which he refused to quit until the *final* decide, and still lived to a fairly ripe old age to die a pretty uncomfortable death with only 10% of lung capacity remaining. So yes, it killed him in the end. But he coughed and hacked his way through most of my lifetime, in the meantime.

    So I’m not saying ‘be all hopeful and shit’, I’m just saying that I hope you will not discard any cautions or behaviours that are actually conducive to making as far as you can, because doctors don’t actually know shit; your body contains more evolutionary biological wisdom in three of its cells then there are contained in the minds of every doctor who has ever lived.

    • Max Bell
    • September 6th, 2010

    Nothing of the sort; I am a ‘good’ patient. When confronted with this sort of situation, the ‘normal’ response for people is to think “nothing I do matters, now”, but the reality is the possibility of deteriorating further WITHOUT it actually proving fatal, and I’ve seen this pattern play out A LOT. Frustrating as hell, because you can never warn people about the tendency; just gets ignored.

    I’m hip. 🙂

    • Uriel
    • September 14th, 2010

    Max,

    to echo Paul, you will be missed.

    A couple of years back my ex committed suicide, in the same year I lost my best friend to cancer, and another friend also took his own life.

    Over the following year I lost almost all of my other friends. Some, because of their insistence on confronting me with their cloying, and over sentimental attempts at concern, telling me what I must be feeling. Other folk avoided me because they assumed, incorrectly, that I would be mopey, and miserable company. They phoned now and again to tell me of great nights out they had partaken of; Nights to which I was never invited in case it was “too much for me”.

    I find no mystery in you being so pragmatic. I wish more people were that way. I ended up dealing with my grief in isolation because nobody would listen to the way I wanted to deal with it. I either failed their expectations, or they burdened me with their own imagined fears. I just wanted to get on with life.

    So, yeah, you will be missed but I believe I see exactly what you are saying. Feeling bad doesn’t bring the dead back to life or provide a cure for cancer. So I’m with you in hoping that folk do start to listen and provide you with exactly the type of support you want.

    But, ye gods, if Ms Palin et al do rise to power, I’d personally have to say that that would be pretty much the ideal time to be checking out.

    • Max Bell
    • September 14th, 2010

    “Echo Paul”. *Laughs*

    That’s my problem; I’m morbid. It wouldn’t bother me to go into this in great detail and the reason I haven’t is because it brings people down, which has to do with how people respond to this sort of thing in general. I don’t think there’s anything particularly sad about it, it’s just interesting to me.

    Yesterday, while I was in the post office, I ran into a fellow who wanted to know what was going on; they had some kind of chemical in the air there that set off a reaction, almost anything at all will do it these days. Midway through explaining it, though, it became apparent that I was having a hard time answering because I didn’t have the wind for it and I guess the guy felt a little rude. This made me feel bad in turn because I didn’t really think about it, if I can’t talk, I’ll just cut whomever off and tell them I can’t.

    On the flip side, it beats telling someone at the hospital you have pneumonia and watching them back away from you like you’re going to infect them. *Laughs* It amuses me that I’ve run into so many people who supposedly know this sort of thing and it turns out they haven’t read as much about it as I have (the best of which is the .PDF that graphic up in the story comes out of).

    Absent the literal, physical sensation, this feels just like having a plastic bag over your head. You can inhale and exhale just fine, it just feels like there’s no oxygen left. In reality, I’m taking in oxygen just fine, my lungs just aren’t scrubbing any of the CO2 out of it. This is great, because I’m claustrophobic; no doubt if I was arachnophobic, I’d have been done in by spiders. But having been dealing with this for the last few months, I’m past the worst of the panic and anxiety. I know that if I relax, eventually I’ll regain the ability to breath, and know to breathe from the diaphragm because that knocks out the CO2 that builds up in the bottom lobes of my lungs.

    Anyhow, Poe once said “If you are ever drown or hung, be sure to make note of your sensations” and it pleases me to have the opportunity to act on this advice and at my leisure. There’s nothing sad or depressing about it at all; I’m having a good time with it. If I regret anything, it’s just that the incapacity makes me even crankier than I would be normally.

    Anyway, that’s kind of the beauty of leading a virtual existence; one day, I’ll just stop posting and the only thing anyone will really notice is that I don’t start again. While I can’t really object to the idea of being missed, I kind of wish I could shut off even that much reaction. I like the idea of ceasing to exist, but if I had my way, that would work forward AND backward along the timeline. There’s enough garbage for people to feel bad about without adding myself to the list.

    • Uriel
    • September 14th, 2010

    Hah, “Echo Paul”! I hadn’t realised.

      • Max Bell
      • September 14th, 2010

      Priorities.

      Spares me worrying about having someone introduce me to a nice cougar with leukemia because “we have so much in common”.

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