Jonathan's POZ Blog

HIV is bullshit.
AIDS is bullshit.

Waking up seven times a night to find the smaller and smaller dry spot in the bed is bullshit.

Doing laundry when I feel like crap because I went through SIX sets of sheets in four days is bullshit.

I am tired. And Angry. And beyond that, I often just don't give a damn. I sleep 14 hours a day. I can't keep a clean house. I can barely keep a clean person. My ferrets are so freaking forgiving and understanding, when they see about as much time out of their cage as... well, as I do of mine.

I feel myself moving away from it all. The desire to write. The need to communicate. The urgency for good sex or good food. I have been sick for a long time, and no one seems to figure out whats up. Dry cough lately, with low grade fever and night sweats. Liver enzymes at 470, from a suggested 40. T Cells at 50, percentage at 6.

And I don't seem to care right now.

I was too sick to go pick up my groceries at the food pantry this week, again. And yet three ASO's had the thoughtfulness to send me beautiful holiday cards with convenient envelopes for my donation. One even sent me an invite for a holiday party, at 75 bucks a couple. Yay. I will pencil that in. Bullshit.

By the way, for the uninfected or the asymptomatic, why not stow away that red ribbon and put your time and efforts into the pandemic instead? Fifty bucks is great, if you can donate it to the ASO of your choice... but you know whats better? Finding a friend or a friend of a friend with AIDS (the real AIDS, not the "I take my atripla then go clubbing" AIDS) and doing his laundry or dishes, or vaccuming. Or bring over a movie and a pizza and hang the hell out. Don't call and ask someone with the tiniest shred of pride if s/he "needs anything." That's bullshit. Make a specific suggestion. I bet you dollars to Bactrim that s/he will take you up on almost anything, if you phrase it right.

I just want a clean apartment, and a haircut, and a few decent nights sleep. I just want the ability to enjoy a little of the life I painstakingly arranged around me for just this time. My Playstation hurts my eyes. So does this computer screen. So does reading. I just take baths and listen to soft music and wait until my next doctor's appointment, or to die. Whatever. I gave up on my creditors a long time ago. I actually go out of my way to ONLY answer the phone when I feel remarkably sick, so I can pop the "A" bomb on them and make them reconsider their choice of vocation.

Sorry, this was not my literate best. It would totally suck if my last entries were of this low quality. That would be bullshit.

As a sorry experiment, I swapped out the ferrets' bedding with clean stuff tonight, except for a single pair of old and stinky sweatpants that I have ingrown (not eating frees up your whole wardrobe). I wanted to see if they have forgiven me for being such a sick ass, for not letting them out to play so much, for becoming that guy who constantly reaches into the cage and grabs one or both for prolonged snout kissing.

Within ten minutes, both of them had tried all the bedding, and had settled deep inside the recesses of my sweatpants.

I don't care HOW you interpret it.... having small furry animals choosing to crawl inside your pants is always a compliment.

All the rest?

Bullshit.

I wake up, drenched from head to toe again, but still feeling unnaturally hot. My bed clothes and pillows are clammy and damp. Its like trying to sleep in a pile of laundry which has been washed in saltwater, but not dried. I try anyhow, as long as I can, because I am so tired. Tomorrow I fly home to North Carolina, to my elderly mother and to a Christmas which I suspect will be far different than most others. I love Mom a lot, and want to see her very badly, but at the same time, I just don’t want to go.

Normally I love to travel. Flying on a plane is exhilarating to me. Calling my friends during a layover and gleefully announcing that I am eating a five dollar croissant makes me chuckle. I like travel, and adventure, and going to different places – even home for the holidays. I used to love to drive home, filling the six hours with audio books on tape, or singing full volume to songs that would make anyone cringe. Tiffany, anyone?

This year I have PCP pneumonia, coupled with some bacterial infection that could also be pneunomia, or bronchitis, or something else. This year, I am fresh out of the hospital, less than two dozen CD4 cells to my name, with my doctor only reluctantly allowing me to travel at all (what’s he going to do, lock me up? Forget I mentioned that). This year I am fifteen pounds skinny, pale as a sheet, with dark rings under my eyes. This year, I am visibly, seriously ill. This year I will be taking the family photographs rather than appearing in them.

And I’m scared. Scared to leave the apartment, because the walk to the mailbox leaves me wheezing and coughing for breath. Scared to pack too much, because I don’t know if I will be able to struggle through the airport with even a carryon. Scared because I know I am going to get That Look from my brother, my Mom, and strangers. I am wearing my AIDS on the outside now, and I detest that more than anything.

It’s not just vanity. I wonder if this is my future. I wonder if I am finally entering the phase with which I flirted several times in the past, only for good this time. I wonder if it’s too late to plan another trip to New Orleans, or to see my friends in California. I am unsure of my future in the most fundamental way. And I’m really weak, and really sick.

I’ve been accused of whining lately, so I will stop here. Not that I give a rat’s ass if I come across as a whiner or not. Last week I managed to spend three days with a fever of almost a hundred and four degrees, and my biggest complaint was that my eyes hurt too badly to watch Doctor Who. I have a couple of friends who have elbowed their way into my apartment, and refused to let me simply languish alone on my futon, and for them I am grateful. I’m a lucky guy to have some seriously cool people in my life, who refuse to let me die alone. And I am loathe to leave here, even to go home to my birthplace, where my Mom can make horrible soup and worry over me.

And I in turn will worry over her, worrying over me. It's fun being raised Methodist.

For the first time, I have absolutely no idea whats going to become of me. Whether I will pull out of this, and if I do, what will be left to work with. Each serious illness takes just a sliver of who I am with it. Dignity, vanity, self-sufficiency. I fear I have reached critical mass here. And I am not sure whats going to be left.

I pack my huge bottle of Mepron, my Levaguin, my Bactrim, and all my other pills and potions in the duffel bag. My best friend is on his way to help me run errands in a few minutes, but I have time to soak away a little of the fever in the tub before he gets here. I am leaving my home, my pets, my safety nets such as they are, and going to a place where there will be laughter and tinsel and blinking lights and the smell of fresh pine.

Where my elderly Mom, still unrecovered from the loss of her lifelong partner five years ago, will put on a smile that is strained and sad. I will hug her frail body, with my own frail body. And together, we will navigate this seasonal passage as best as we can. Both wondering how many more times we will even accomplish this tissue-thin celebration. Both feeling time, and illness, and loss weighing heavily on us like snow on a fragile leaf.

Mom is seventy-nine years old, and I have AIDS. We are, in many respects, in the same situation, with more years behind us than ahead. I hope we manage to find some way to shut out the omnipresent ghosts of Christmas Future, and find joy in our moments together. If not joy, exactly, at least comfort. And maybe even, in the melee of giftwrapping and laughing children, something resembling hope.