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