Jonathan's POZ Blog

When I last posted, I was on the absolute cusp. Could have gone either way, and was so beaten down by over six month’s worth of exhaustion and pain that I simply failed to care much, one way or the other. I was, to the terror of my friends, cool with the notion of dying. And PCP, a particularly nasty pneumonia that impacts people with AIDS, can easily do just that. I was literally bedridden for four months, sleeping fitfully for seventeen or eighteen hours a day.

When I was finally diagnosed (and it’s a tricky diagnosis, especially for those of us enjoying the rather limited public health opportunities afforded by Medicare) it was moderately advanced. I was having trouble breathing. I was having trouble putting words together. I was honestly getting ready to make my peace, if such a thing is ever possible, and surrender. As someone who never thinks like that, I was even a little concerned. But mostly sleepy, mostly just hurting.

The Mepron helped, and continues to help eradicate the pneumonia. Of course, it does so at a cost of some side effects like pounding headache and relentless intestinal trouble. But I take the vile stuff, along with the Bactrim. One thing I can’t stand to take anymore is the AZT. I’m just done with that stuff. Even the Kaletra, with its charming oily side effects, is preferable. So I have been more or less determining my own therapy of a sort, to the resigned horror of my doctor. It’s no longer an all or nothing situation, so far as I am concerned. I take what pills I can, when I can tolerate them. The exception of course being antibiotics, because developing resistant strains of bacterial stuff is not something I want on my conscience.

So I have taken the past few months off from writing. Mainly because the computer screen gives me an eyeball-based headache. Also because I have been sad, and scared, and sick. And much of the time, asleep or in the tub thinking that THIS time, THIS hot bath will unkink my aching body. Never works, but I am the cleanest sick person I know.

I was amused in that several friends who had fallen out of touch called me and asked to hang out. Apparently they read my blog and assumed I was going to die almost immediately. Guilt or worry, not sure which, prompted the sudden interest. When they saw that I was in actuality starting to recover, they seemed disappointed. Maybe they wanted me to put in a good word with the Intelligent Designers. Ha. When I reach the pearly gates, I will be far to preoccupied trying to save my own skanky butt.

And then, a few weeks ago, a friend flew in from out of town for a visit. I really was in no condition to welcome her, but we got along so famously online and on the phone that I could not very well turn her away. Plus, the ticket was nonrefundable. I was still sleeping fifteen hours a day, and was unable to walk for any appreciable distance without coughing or involuntarily sitting down. But she assured me that we could just lie on the floor and talk. And to a great extent, that is exactly what we did. And I fell in love with her a little, during our visit. I have written, and am writing more about that on another blog. Due to some real safety concerns, I opted not to go into the details here.

So here I am, trying to do a measure of walking or light exercise every day I am able. Still taking the Mepron and still weak as a kitten. But no longer struggling for breath. And experiencing multiple days between soaking night sweats. So little by little, moving away from the edge it seems. It takes a lot of time, and a shockingly large effort.

I still feel as though I have passed a membrane with this illness. And I wonder how much of my former self will be returning. But I am not dead yet. I'm even writing a little again, even though it still makes my eyes water. That counts for something.

We all decide what, and whom are worth our time and energy. And with relatively advanced illness, those expenditures of energy become more precious and more thoughtful.

Last weekend, I went to the Renaissance Faire with my friend Richard. It was amazing. As usual, I dressed as a hobbit. And as usual, I drank too much mead in my wooden bowl, attached to my leather belt by a clasp. And as usual, I spent way too much time in character, dancing with maidens and cheering the jousters. That evening, I was exhausted beyond the telling of it. I was so tired that Richard had to basically carry me into my apartment, and when I was situated, I fell asleep. It was a remarkable and deep sleep, full of great times and good memories and the full knowledge that I had been a part of the world again for a while.

After so many years of giving away my time and energy and strength, it felt good to selfishly use some of those precious gems on my own self. It felt great to spend time with a good friend, and to be goofy and crazy and cavort around and get a little drunk from honey wine and enjoy the feeling of fresh air on my face.. even on my latex elven ears. So much of what I write, I write when I am down, or depressed, or sick. And though I will be the first to say that it took me several days to recover from my excursion, it was worth every fever, every night sweat, every moment of discomfort.

I am ok with dying. I think I made that clear. However, I love being alive. I really do love it. And my goal for this spring, this summer, this year is to be alive more often. To be away from the computer and the writing and the documentation long enough to actually experience a bit more, a bit longer. I had a wonderful time with a good friend at a great place. Moments like that are worth whatever we pay for them. And in a time when energy is a precious resource, I suppose we must choose those moments carefully.

Or in my case, carelessly… but thoughtfully.

Look for more carelessness to follow, as soon as I am up for it.