liver transplant | Xper Dunn Is Here

Tuesday, August 26, 2014 2:52 PM

Stardate 09 point ho-ho-dee-ho-dee-ho

Status renewal:

Pill count: 12 (morning) 2 (evening)

Sleep Cycle: way off of ‘daytime’ norm

Lungs in terrible pain: taking the cigarettes easy today—no weed!

Fatigue: still hovering at max.

Loneliness: very high

Frustration: barely under control

Drinking: None

Projects: None

Value: None

Now that I’ve got that out of my system, let’s try something more coherent. Last week of August—my melancholy usually waits till the leaves start to turn, but this has been a very un-hot summer and it seems to be leaving without ever really arriving (Not one heat wave this year—where’s global warming when you need it?).

I’ve been promised a full cure of my HCV—it won’t happen—I’ve been so sick for so long, I’d have to marinate my entire anatomy in ‘cure juice’ to get it all out. HepC will even leave outposts in my bone marrow to repopulate the blood stream and liver after they’ve been ‘completely cleared’. In my bone marrow! Jeez.

I am on my own. That is to say, I’m not alone—there’s Spence here all the time, in his own building, but there—and Claire takes care of me in the morning and at night with meals and pills and hundreds of other things—and my friend, Sherryl, stops by nearly every day and we have a chat or a cuppa. But that gives me only the barest minimum of contact to humans—no hanging around or long talks or collaborations on interesting ideas, no physical contact to speak of, no intense interest in me or my doings—just maintenance of my continued breathing, really.

I try to fill the emptiness I feel by playing the piano or Facebooking or writing (like this)—none of it works completely; it just provides a framework for me to thrash about within. Until my illness, I was unaware of the very real, physical stamina that thought requires. Now it is plain as the nose, as they say, and it has become my nemesis—I can still think, but not very deeply or very long—and that’s where intelligence lies. My former intelligence lies afar. My superpower is gone and I’m helpless in the grip of the Red Sun.

See the good? Find that silver lining? Yeah, sorry—I can’t seem to oblige. Truth is, I’m barely alive. I’m a burden on my family. I’m a lousy role-model for my son. I don’t leave the house. I’m sitting on a pile of atrophied muscles and forgotten skills. I’m not involved—I’m missing the party. I want so much—I’m still wanting a few things I’ve become too old to ever achieve. I’ve been dying, literally, for nearly two decades—it’s been a parade of horror and pain and isolation and heartbreak and helplessness.

Have I become wiser? Has the refining fire burnt away impurities and left me with the pure gold of reason and mercy? There’s some truth to that—I am wiser than I was—but to what purpose? My lack of people skills is not at all helped by being wiser—wise is no party-trick, it’s more like x-ray vision. It takes the false front away, but it takes all the fun with it. X-rays of beautiful bodies are just x-rays. X-rays of a celebration show the noise but fail to capture the mirth. I was much happier being intelligent, but foolish.

Music is all I have now—I listen to it constantly. I pay more attention to soundtracks than to special effects. But I’ve built my own tragedy into music, as well—by trying the impossible, trying to make my own music. I should have stuck with just listening. I have no natural talent, and all my hard work is towards fighting fatigue, not finding beauty in what I do. It’s Sisyphean, and what’s worse, self-imposed. What was I thinking?

My greatest fear is to find myself perfectly healthy and alive again. I’m fast approaching sixty years old—how the hell do I start over at sixty? How do I recreate a social life at sixty? How do I re-enter the workforce at sixty? It will be hard enough to reconcile myself to the erasure of my forties and fifties, how am I supposed to just pick up where I left off? If this medicine really works, I will find out just where I ‘pick up’.

Truly, I can’t simply start off where I left off. One of the hardest things about my illness was how long it took to be diagnosed. I spent many years being unfairly accused of alcoholism and drug abuse—just at the point where I had stopped my wild ways for some time—and both things, the accusing and the reining in of my lifestyle, were (unbeknownst to anyone, including me) the effects of my increasing liver failure and the blood toxicity it causes.

Everyone, including my wife, my kids, and myself, resented my ‘laziness’ and my ‘lack of willpower’. I thought being forced out of management and getting fired was what I deserved. I assumed that I had no one to blame but myself—I laid such a heavy guilt trip on myself that, when I finally found out the truth, I was glad to learn I had a fatal disease—it was a far better reality than the self-hatred I was immersed in.

Thus, I must pick up where I left off my health, not my life. I remember a nervous, overly serious guy in his thirties who had a head full of plans and dreams and more. I remember working hard, sometimes through the night—it didn’t faze me, I was always obsessive about projects. This was before the internet and I spent a great deal of time answering questions—I was a walking Wiki, calculator, copyeditor, proofreader, and history timeline. I loved being over-educated. One of my long-term goals was a PhD—I had planned to take school courses forever. Now I can hardly remember my name.

No, I fear that health may prove a harder life than my mostly bed-ridden, everyday usual. We all fear change, even beneficial change. Plus, my memories betray me—the agony of getting out of bed and getting to work (during those years when I didn’t realize I belonged in a hospital) was a daily hell. The frustration of staring at the computer screen and not knowing what to do, when I was used to programing without flow-charts, the entire structure always firm in my mind, was unbearably humiliating. The heartbreak at not having the strength to spend time with my kids, to take them places, or do school projects together—I hated myself worst of all for that.

Those are some of the reasons I don’t look back on my active past with longing—I fear the return of an active life because my last one ended in torture and near-madness. But I will try. I’m hoping to find myself capable enough to build a happy lifeand find some worthwhile work (I’m damned if I’ve gone through all this so I can work at Burger King in my sixties!). If my hands stop shaking, at least somewhat, I may just go back to drawing full-time—the internet provides a variety of ways to sell original artwork. If I get some concentration back, I’ll try writing fiction. I will definitely get in shape, no matter how much it hurts—I’m most tired of all of ‘being tired’.

Well, that’s my wailing and weeping for today.

When I was younger, I heard about some of the details of organ transplants—that the recipient had to take pills for the rest of his or her life to keep the body from rejecting the organ. As a healthy young man I thought, how awful—I’d just as soon pass on the whole thing. Imagine having to remember to take pills every day. And what if there was an apocalypse, huh? No more pills factories—bye-bye, little post-apocalyptic transplant patient! It would hardly be living at all, I thought.

I don’t know if I took my morning pills. A handful of pills in the morning, a different handful at night, continue ad naseum until you reach a fog of backward spiraling memories of having taken pills, pills, pills. Result: I have no idea if I took my morning pills—and they’re the important ones, though oddly enough I’m not referring to the prescription morning pills, but the OTC remedies for 24-hr acid suppression pills and anti-squirts pills (alas, I blush to admit!) The lack of them often prompts me to the realization that morning pills remain untaken, one way or another.

But you know how it is—fourteen hours of sleep, ten hours of relative consciousness—the metabolism of a coma victim, most days. So that morning problem lags behind, lurking ever nearby. And if I err on the side of caution, I get sick from doubling up on all those meds—it’s either be sure, or endure.

I amazed myself earlier with a passable read-through of a piano transcription of the second movement of Tchaikovsky’s Fifth Symphony—made it all the way to the end (which, if not a first, is certainly a second-time achievement). I’m always surprised by the amount of playing I can do when I stay relaxed.

Strangely, staying relaxed while playing the piano takes focus—not a tense focus, but a floatation type of focus, noticing ‘rigidity-creep’ and willing the muscles to be slack, or at least slacker, and maintaining a posture that is most supportive for my exertions, reducing the amount of muscle required to keep me upright and redirecting that power towards the arms.

And while that may sound very alert, it is only possible if one is quiet and not agitated. I do best upon waking in the morning, or from a nap. I pretend that I don’t care what goes on around me—I am in the living room, after all—but the simple truth is that silence is the best canvas to paint music on. So, half asleep, in a silent room, without the camcorder watching, I can do wonders. Too bad their nature makes them impossible to reproduce in front of other people, or even a camera lens—if people could only hear some of the stuff I get up to when I’m really on my game—oh, well. It’s good to have a private life—one has got to hold something back—and for a chatter-box like myself, being physically unable to display my best is the best (and only) way I can hold anything back—so that works out, if I look at it that way.

‘Twas ever thus’, as my dad used to say—I could draw a crowd while sketching in my pad in the old days—and an audience was an exciting addition to my sketches al fresco, especially at school, where cool points were counted. But my best drawing only ever happened in complete solitude—without interruption. Nor can I sparkle in conversation with the sort of easy erudition I can voice at the keyboard—like now, fr’instance—I could never sling this verbiage orally. It is only possible because I am alone and comfortable—and when I am not, nothing is possible. I have poor social skills, to put it mildly.

But peace of mind is vital. Whenever I’m worried, it gets in the way of my piano playing—being open enough to play and feel the music means being open to stray thoughts and when I’m worried, a whole flock will rush in. Sometimes it’s so bad I forget I’m playing the piano—weird, huh? You’d think a person would forget their troubles at the piano—but it’s just the opposite. But there’s a silver lining to the ‘peace of mind’ conundrum—when I read a good book I lose all awareness of my surroundings; I grow deaf to even loud noises; I am enthralled.

I couldn’t be more inside the story—I am a very good reader. To be a ‘good’ reader is a vague term—I’m specifically very good at vicarious experience. And as I look back at a lifetime’s book-worming, I’d say that my vicarious experience very likely exceeds both my conscious experience and my subconscious experience, i.e. I’ve spent more time lost in a book than I’ve spent not reading a book, or sleeping. Other people may talk about vicarious experience, but none who haven’t travelled in the world of books can ever truly understand its meaning.

I’ve often had occasion, upon being asked how my day went, for stopping myself from describing the adventures of the character in my book, and remembering to answer, “Just read a book, is all.” Here’s a good one—have you ever been reading about someone speeding through a dark woods and felt your eyes squint up at the danger of being poked by ‘twigs’? Have you ever eventually noticed a cramp in your arm from swinging a long-sword for so long in a ‘battle’? Then I hail you brother, or sister, in the Fellowship of the reaDing.

Xper Dunn Is Here

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‘Twice Daily’ ? — Sure, Let’s See You Do It…

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