Jonathan's POZ Blog

Baby Book

I stumbled across mine when I was home visiting Mom. Old, cracked, dusty. But there were milestones listed, pages of firsts. First steps. First lock of hair. First words.

I could not help but notice that the baby book had not been updated for at least thirty-seven years. I was aghast at Mom’s lack of attention, and pointed it out to her. Well, called to her from the attic.

“Mom, why didn’t you keep up with the baby book?” I asked.

“Are you in the attic?” She responded from the kitchen. “Don’t leave that door open, it will make the upstairs too hot.”

“The upstairs is ALWAYS too hot,” I replied. “Now back to the book.”

“Your baby book?”

“yup. I notice a gap in your updates.” Mom walked to the stairs leading upwards into the attic, drying her hands with a dish towel.

“What sort of gap?” She asked, actually taking me seriously.

“From…. I dunno … maybe eighteen months until, well, now.”

“Jonathan, you don’t keep up a baby book longer than that.”

“We, obviously YOU don’t.”

Mom laughed, and turned back to the kitchen, “Silly, you weren’t a baby anymore.”

“But what about my first speeding ticket? My first brush with a cruel and unjust educational system? My first standardized IQ test? Those were important words too. Bigger than a lock of hair, I think.”

“Close the door to the attic if you are going to be up there. You are letting the cool air out,” was the only answer I got. Mom had more important things to do. Literally, bigger fish to fry in the kitchen.

I sat in the attic and thought. And made the connection, suddenly, to the week before, in the doctor’s office, being told my viral load, thanks to a new (quasi) commitment to meds was paying off. I had once again reached, in less than a month’s time, an undetectable viral load. This after having had a viral load so high I envisioned a thermometer-type device busting, like in the old cartoons.

Seems my virus is prolific, and aggressive, just not very hearty or smart. Wild Strain, again. But with, I am certain, a latent and underlying resistance which will eventually crop up in a few months. But mainly something that, while it can do great damage, is also rather quickly suppressed.

A milestone? Well, in recent memory, yeah.

I notice a disturbing trend among recently (and sometimes not so recently) infected people. Numbers become some sort of panacea against harm. Fluctuations in CD4 count make some rejoice as though they were cured – and others rage as though they were near death. Blips in viral load become major drama. Numbers, not overall health, seems to rule the day. People rush to medical treatment with little or no understanding of the commitment or the consequences. Because their baby book is still being cultured.

It sounds positively exhausting. And probably not that great for a person’s health.

Thing is, numbers matter. To a degree. And in context. And as averaged over a period of time measured best in months or years, not days. Some people NEVER achieve an undetectable viral load. Yet are healthy and happy as they want to be. Some people are simply born with a weak immune system. It’s not standard procedure to chart a person’s CD4 count all their lives. If someone is diagnosed, and turn up with 300 T Cells, who can say that they didn’t have, say, 350 all their lives?

Time. And repeated tests. And averaging trends. Which is of academic interest, and might even point towards the potential necessity for starting meds. But a cause for alarm or celebration? Wow. Talk about a slow news day. I remember worrying the first time I was diagnosed with PCP (pneumonia), and the time I was told that I had to wear an IV antibiotic for ten days thanks to an infection in my brain. And there was, of course, the relief I felt when the treatments for both of these things proved successful. With the pneumonia, breathing a sigh of relief was celebration enough. To be fair, breathing at ALL was the celebration.

Thing is, I wonder sometimes if we don’t perpetuate – even make manifest – an artificially sustained state of emergency by making each “milestone” an event. Viral load blips, CD4 fluctuations, the flows and ebbs of a body’s immune system as it adjusts to this nasty virus, and the often nasty meds used to keep it at bay. It’s like the media breathlessly reporting that Paris Hilton has, it seems, gotten out of a big black car in front of some sort of dance club. ORLY?

But I can imagine that the stress – the panic over a viral load, or a T Cell count that does not skyrocket in an arbitrarily assigned time frame – over numbers which have absolutely NO impact on how a person FEELS – that stress has to be dangerous. Riding the rollercoaster of elation and despair is taxing on an INTACT immune system. I cannot imagine it helping with long-term survival of HIV.

An online pal of mine is a breast cancer survivor. She takes her remaining breast to get a mammogram once every four to six months. I asked her once, if she is nervous about those times, elated each time she remains cancer free. She wrote back, saying that for the first year or so, sure. But that you simply can’t keep something like that on the front burner all the time. Otherwise she was not a person with cancer, but rather a cancer with a person attached. Really profound stuff, actually. And relevant.

I was recently chastised by a good friend for being so matter-of-fact about medical stuff. Procedures, treatments, problems. Had an MRI last week, and was fine with going by myself, except that my friend insisted on driving me. I did not have the heart to remind him that I’ve been to FOUR of the things by myself already this year. And the magnetic rays did not render me incapable of driving. I was overruled, and thirty white-knuckled minutes late to my appointment (I love Adam to bits, but he has no concept of time) we arrived at the lab.

“I’d be a wreck if I was you,” he said. I reminded him that I am pretty much a wreck almost every day, “Don’t you get nervous? Don’t you get anxious? What if they find a tumor?”

“Hell, I’ll be happy if they keep finding a brain, “ I joked back. He glowered at me in the car, clearly not mollified.

“You sort of slide stuff into conversation. You casually mention your pneumonia, your near-zero T Cell count, your Cryptococcal Meningitis, other stuff. It’s like it doesn’t affect you.”

“Um, it does. Ringing in my ears, headache. That crypto is one bad mutha-“

“Shut your mouth”

“I’m talkin’ about the Shaft.”

“Seriously.” Adam said, “Don’t you get scared? Sad? Pensive?”

“Yes. I do. And I usually tell you when that happens. What makes me sad and scared isn’t the big stuff, like a diagnosis, or the academic stuff, like the numbers. It’s when I feel bad. It’s when I realize I have felt bad for a long time. It’s when I wonder if my brain will rot out, leaving me incapable of taking care of myself. It’s when I feel suddenly isolated and lonely. When it hurts to breathe, and when I feel trapped like an animal facing medical treatment that hurts easily as much as the illness.”

“And when that happens, I usually pull back, pull away for a while, wait until I can figure it out, until I can get motivated to pursue a course of action. And sometimes, some nights when I have spent the whole day in the bathroom, or the whole weekend in bed, I DO call you. I do ask if you want to come over for dinner and a movie. I DO need you. Not to fuel my dramatics or my histrionics. Not to worry more than I worry, or fret or cry. But to be my link to normal. My bridge between dying of AIDS and living with it.”

We were already half an hour late (did I mention Adam has zero sense of time?) so I excused myself and went into the clinic get that MRI. Adam drove around Decatur, Georgia, looking for food.

Laying in that ceramic tube, with assorted techno and thrash and jungle beats ricocheting off my brain, I had time to think. Well, to be fair, I spent much of that time imagining I was in an escape pod from a starship, or that my brain was being scanned for later retrieval incase I died. I’m all Philip K. Dick like that.

But I also thought about priorities. I sometimes use my numbers, especially when they are alarming, to shock and awe my friends and family. But truth is, after having this virus for, what, fourteen years? – it no longer really impacts me so easily. What matters to me is how I feel. And that changes from day to day. Some days are terrific, and I feel like I am emerging from some fibrous AIDS cocoon. That the scant month (ish, heavy on the ish) I have been sorta taking the drugs, has made a significant impact on my health. Yes, I imagine the most recent tests will reflect that.

But it’s not about the numbers. I can FEEL my body responding. I can FEEL myself with more energy, less depression. What I needed was not more Welbutrin. It was more Well-being. More health. An immune system that could take a much needed break from the nonstop boxing match that is HIV.

My doctor, God/dess bless his weary heart, actually agreed with me. I told him about my haphazard application of HAART treatment, a treatment that demands 95 percent compliance in order to be optimally effective over the long term. I take my meds what, three or foud times a week? And never the full dose of AZT. That shit still makes me sick as a dog, but it does cross that blood-brain barrier like a mofo.

My doctor said that while he would NEVER suggest my strategy of prolonged treatment interruption and sketchy adherence, it seems to be working for me. I am, after all, still on this side of the urn. And by all rights, I should not be.

Take your drugs on time, all the time! People say. Do you want to develop resistance? It’s better to take NO drugs than to take just a few!

Bullshit.

Utter and absolute bullshit.

I learned the hardest possible way that this is not true, and it is a paradigm I embraced until a few months ago. When I finally understood the stakes. Taking drugs poorly was better than taking none at all. Might I develop resistance to meds and die within the next five years? Maybe. I’d give it a nudge towards probably. But taking NO meds meant I would be in sad, sick shape, if not dead within the year. The calendar year. Like, no Doctor Who, Series Three for Jonathan. I will take the prospect of a long term complication over the prospect of no long-term at all, thanks for asking.

This seems to drive some people nuts. And that’s cool. They are, however, not my nuts.

I get depressed sometimes, get scared sometimes, investigate the depth breadth of despair and isolation and loneliness sometimes. Because I refuse to ignore the human experience. And how motivated can I be to move towards the light unless I see for myself the deep dark? Seriously.

And on occasion, I tell my friends about it. I get a little throat-closey and I tremble. And I want nothing more than another warm body on the futon, while we argue about who needed to get kicked out of Hell’s Kitchen.

Mom knows I was joking with her. I do not need everything to be in my Baby Book. The milestones, I am beginning to realize, are not the towering, oppressive black granite monoliths of my nightmares or dreams. They are the simple, fleeting moments that must be enjoyed – or sometimes endured – in order to put this thing in perspective. They are the good friend who comes over and makes fun of you. They are the sad, drunken nights alone with pets who have nothing but affection to give. They are the dark clouds of anger, and the white sun of love that burns them away.

What counts is love. What sucks is fear. All else is academic.

I still have about 28 T Cells. I will know my viral load next week. If I bother to call and get the results. I have bigger fish to fry. I have a person to continue to become. And though I can’t tell you anything with absolute certainty, it seems that, once Jonathan exits the E-Z Bake oven of personal change, he might… might… resemble something pretty cool.