This week two of my favorite internet people - journalists, writers, bloggers, bad-ass women, Susannah Breslin and Xeni Jardin - revealed they have breast cancer.
I don't know them personally but something...clicked in my brain and my heart when I heard this. They're not personal friends to me, but they know each other (sometimes their twitter conversations with photographer Clayton Cubitt are hilarious!), and within three days of Breslin's diagnosis, Jardin's comes and I want to hug them!
Susannah Breslin writes about her experience on Forbes.com. Xeni Jardin tweeted her first mammogram, culminating in the diagnosis.
As I read Ms Breslin's post I'm reminded of how these things change you and your perception of the world. Something becomes askew and no matter how hard you try to express it, frankly, if you don't have cancer, you can't ever know. Your perception of yourself is two-fold: you begin to look at yourself, probably as damaged and fragile, and you begin to look at yourself physically, trying to find this thing inside you, as if you can see it crawling just beneath your skin, partly out of fascination and partly out of being scared.
I've never had cancer, but when I first discovered I was HIV-positive, it was the single thing that changed my life the most, not in an outward way, not even physically nor emotionally, but it fundamentally changed the way I see myself in the world. I mentioned to Ms Breslin how it reminded me of this, her post.
I have this idea that a few months, maybe a year or so down the line, once both Susannah and Xeni beat this, they'll be having a good ol' chat over coffee somewhere in New York (I'm not really sure why NYC), and laugh and talk about it. Maybe they'll commiserate. Maybe there'll be tears...
...I don't know, I'm sort of a little weird this way: sure, it's fucking cancer, but at least you're not alone. Is that terrible to think? I remember last year (man, time flies!) when Corey and I had that conversation about strangers reaching out to us about being HIV-positive.
No, I don't know Susannah Breslin and Xeni Jardin. But in a rather odd and a bit sad way, Ithink I do. And if you know them, give them a hug for me.
Showing posts with label HIV. Show all posts
Showing posts with label HIV. Show all posts
Friday, December 2, 2011
Wednesday, October 12, 2011
Free Life
Went to the movies today. I shouldn't have because payday's next week and there's insurance to still pay. But I went and had a big ol' cry there due to the movie not necessarily because I was/am terribly sad or anything like that. Still, right? Anyway, afterward, I spent another $5 on a coffee and a shortbread raspberry cookie thing because I left a voicemail for my best friend and was still a little shaken. So strange how things affect me. Or not. I think I'm made of metal and then I'm melted.
Honest: for a long time - almost two years now - I've had a terrible idea not everyone I know and don't know would like to hear and that is going of the meds for the extra cash.
Just right now I was thinking, suppose I'd never had to go to the doctor four years ago and I never discovered I'd HIV, where would I be now? I don't know and neither does anyone else because that never happened. But, what if, you know?
I wonder how we got to this point where this is even worth considering. Years ago, if someone mentioned this to me, I'd tell them they were insane, and here I am thinking this. But is it that bad? No, not really. I could use five grand right now and I know lots of us could as well but that isn't going to happen. or, if I did indeed stop the the meds for the money, I think it would be easier to just spend it on something wholly necessary.
The family is in really bad form right now. Not only financially. Not a lot of us are happy. I'd go even a little further into it: I don't think a lot of us are content or satisfied with what's happening, any of it. Who is, really?
So, I'm at the movies and guy in the movie says he just wants it to stop, the disease he has. And that's where I am and I think using the family trials as the reason for it to stop is kind of a cop-out. Isn't it? Is it?
What if I decided to stop treatment, would you hate me, shun me, support me, or say nothing? Is this one of those cry for help things? Do I mean a slow-speed suicide? What is it?
As I've written many times over the last few years, I want it to stop, all these pills every week; the way in which everything my family says around me is tinged with sadness and fear; the way in which whenever I mention being sick all I get is silence; thinking the pretty girl I want to ask out from work will just walk away when I tell her; the way my mother looks at me sometimes. And the way I see myself daily. I just want it all to stop so I can be normal again.
Haven't had a fit like this in a while. I don't really know what normal means.
But, as I said, there's lots of things to take care of for the family. I hate my living situation but without me they can't keep the house nor put food on the table nor even enjoy a smoke every now and then. Silly to even type all that. But it's true. And me, without them, I don't know really where I'd be. So the family must come first. And I'd be no use to them dying in a hospital or dead in the ground.
Way the world works is my life is the only thing I've a say over. That's it.
Way to return to the blog. I should not be allowed to go to the movies unescorted.
Honest: for a long time - almost two years now - I've had a terrible idea not everyone I know and don't know would like to hear and that is going of the meds for the extra cash.
Just right now I was thinking, suppose I'd never had to go to the doctor four years ago and I never discovered I'd HIV, where would I be now? I don't know and neither does anyone else because that never happened. But, what if, you know?
I wonder how we got to this point where this is even worth considering. Years ago, if someone mentioned this to me, I'd tell them they were insane, and here I am thinking this. But is it that bad? No, not really. I could use five grand right now and I know lots of us could as well but that isn't going to happen. or, if I did indeed stop the the meds for the money, I think it would be easier to just spend it on something wholly necessary.
The family is in really bad form right now. Not only financially. Not a lot of us are happy. I'd go even a little further into it: I don't think a lot of us are content or satisfied with what's happening, any of it. Who is, really?
So, I'm at the movies and guy in the movie says he just wants it to stop, the disease he has. And that's where I am and I think using the family trials as the reason for it to stop is kind of a cop-out. Isn't it? Is it?
What if I decided to stop treatment, would you hate me, shun me, support me, or say nothing? Is this one of those cry for help things? Do I mean a slow-speed suicide? What is it?
As I've written many times over the last few years, I want it to stop, all these pills every week; the way in which everything my family says around me is tinged with sadness and fear; the way in which whenever I mention being sick all I get is silence; thinking the pretty girl I want to ask out from work will just walk away when I tell her; the way my mother looks at me sometimes. And the way I see myself daily. I just want it all to stop so I can be normal again.
Haven't had a fit like this in a while. I don't really know what normal means.
But, as I said, there's lots of things to take care of for the family. I hate my living situation but without me they can't keep the house nor put food on the table nor even enjoy a smoke every now and then. Silly to even type all that. But it's true. And me, without them, I don't know really where I'd be. So the family must come first. And I'd be no use to them dying in a hospital or dead in the ground.
Way the world works is my life is the only thing I've a say over. That's it.
Way to return to the blog. I should not be allowed to go to the movies unescorted.
Thursday, June 23, 2011
The Milk
Since I lost my job over a year ago, every week seems to feel longer than it really is. Of course, when things are bad, I'm sure this changed perception of time is prevalent. How could it not be - we say, "Time flies when you're having fun," and all that. And what came along with that, and continues until just a few moments ago, sometimes just makes me so angry and sad and bitter and defeated.
Okay, so at my new job, I've medical insurance. It's one of those things that with losing the previous gig was a huge worry for me (nevermind, the rest of the family - they were a mess). Paying hundreds of dollars a month, even with not enough money coming in, for COBRA just so that I could continue to pay a couple hundred dollars on top of that for medication and more doctor's visits seemed so ridiculous. It's one of the reasons last year the president let me down by not pushing for Single-payer Healthcare. But anyway, so am covered now...
Late last week I called in to have my two prescriptions filled because it was time. And it was the first paycheck where the new gig was paying me decently, finally. Not great, but every dollar counts, after all. I went a couple of days ago to pick them up and was told that my COBRA insurance had lapsed. I figured, so what, I've a shiny new insurance card (the cost attached to my meds then I've talked about before). So, pharmacy guy does whatever it is they do and comes back and tells me it'll be $500 for both. Turns out I need to pay my deductible before the insurance covers what it used to. This was a rather unexpected thing to have happen.
Just got back from paying this and I am still a bit embittered and sad by the whole thing. I drove to the pharmacy crying.
Honest: one of the things that bothers me the most about this is the contrasting example of the ex and my situations beyond us both being HIV-positive: I've worked for years, paying my taxes and insurance costs and all that; he's claimed disability for a lot longer than I've been taking these fucking pills: I pay what I pay for doctor visits, emergency room visits, and medicine (the most total was in 2008 which came to roughly $4000); he pays nothing. The juxtaposition is glaring to me and shows me such an unfair disparity that it simply infuriates me, and has ever since I first discovered this. And it isn't so much because it's the ex, no. It's more due to the fact that it seems that when you play by the rules in this fucking country, well, who the fuck cares, even when it comes to staying alive. To be fair, I don't know and don't recall the details of the ex's then-situation when all this came to pass for him, nor much do I care now. What stays in my mind, and did as I drove to and back from the pharmacy just now, is that while we were together, the ex said he could get any medication he wanted and he'd get it for free (I was present first hand when he had some pills for some friend of his (hair-growth pills or some such) and I know first-hand he has easy access to boner pills (he took some when we were in San Diego last year). This is the disparity: all I want is what I need and am willing to pay for it; he's one of those people others complain about abusing the system while not paying into it.
(Okay, since am on a tear about the ex, this: I am not certain of what constitutes being disabled due to HIV-infection or AIDS - if I remember correctly, he'd said to me once that he was so sick before he couldn't work. And I'm sure this is how one does this which is fair and right, especially without access to healthcare any other way. However, in the intervening years, although I'd only known him personally for about three years, from my very biased and outsider point of view, he is not disabled any longer. This is a man who gets steroids from the public clinic he goes to because he doesn't want to loose muscle because...I think he said more muscle mass is necessary to fight off HIV cells? Something like that. I'm sure there is truth to this to a degree. But I believe it is primarily so that he doesn't become physically unattractive.)
God damn but am I angry today.
I paid my $500.
Hopefully, as it was explained to me earlier by the insurance rep, I won't be paying as much next month and so on.
Sure, I'm all "woe is me" right now, but that'll pass. This is initial shock. And it's due to having to, first, spend money that I need for other things, and, two, the fact that someone like me even has to spend money on HIV medication. This is a case, for me, where I see me as part of the working class in America and I am not catching a break: from one end of the spectrum (the ex and those like him) to another (those for whom medical care is an afterthought-expense), there is a gap wherein most of lie where we have to choose between everything that is necessary (meds, food, shelter, etc) or losing most of it. It isn't fair and it isn't right. This blog post is completely biased and written in anger and may be completely offensive and all that bullshit, but who cares? It's all of it spilled milk.
Okay, so at my new job, I've medical insurance. It's one of those things that with losing the previous gig was a huge worry for me (nevermind, the rest of the family - they were a mess). Paying hundreds of dollars a month, even with not enough money coming in, for COBRA just so that I could continue to pay a couple hundred dollars on top of that for medication and more doctor's visits seemed so ridiculous. It's one of the reasons last year the president let me down by not pushing for Single-payer Healthcare. But anyway, so am covered now...
Late last week I called in to have my two prescriptions filled because it was time. And it was the first paycheck where the new gig was paying me decently, finally. Not great, but every dollar counts, after all. I went a couple of days ago to pick them up and was told that my COBRA insurance had lapsed. I figured, so what, I've a shiny new insurance card (the cost attached to my meds then I've talked about before). So, pharmacy guy does whatever it is they do and comes back and tells me it'll be $500 for both. Turns out I need to pay my deductible before the insurance covers what it used to. This was a rather unexpected thing to have happen.
Just got back from paying this and I am still a bit embittered and sad by the whole thing. I drove to the pharmacy crying.
Honest: one of the things that bothers me the most about this is the contrasting example of the ex and my situations beyond us both being HIV-positive: I've worked for years, paying my taxes and insurance costs and all that; he's claimed disability for a lot longer than I've been taking these fucking pills: I pay what I pay for doctor visits, emergency room visits, and medicine (the most total was in 2008 which came to roughly $4000); he pays nothing. The juxtaposition is glaring to me and shows me such an unfair disparity that it simply infuriates me, and has ever since I first discovered this. And it isn't so much because it's the ex, no. It's more due to the fact that it seems that when you play by the rules in this fucking country, well, who the fuck cares, even when it comes to staying alive. To be fair, I don't know and don't recall the details of the ex's then-situation when all this came to pass for him, nor much do I care now. What stays in my mind, and did as I drove to and back from the pharmacy just now, is that while we were together, the ex said he could get any medication he wanted and he'd get it for free (I was present first hand when he had some pills for some friend of his (hair-growth pills or some such) and I know first-hand he has easy access to boner pills (he took some when we were in San Diego last year). This is the disparity: all I want is what I need and am willing to pay for it; he's one of those people others complain about abusing the system while not paying into it.
(Okay, since am on a tear about the ex, this: I am not certain of what constitutes being disabled due to HIV-infection or AIDS - if I remember correctly, he'd said to me once that he was so sick before he couldn't work. And I'm sure this is how one does this which is fair and right, especially without access to healthcare any other way. However, in the intervening years, although I'd only known him personally for about three years, from my very biased and outsider point of view, he is not disabled any longer. This is a man who gets steroids from the public clinic he goes to because he doesn't want to loose muscle because...I think he said more muscle mass is necessary to fight off HIV cells? Something like that. I'm sure there is truth to this to a degree. But I believe it is primarily so that he doesn't become physically unattractive.)
God damn but am I angry today.
I paid my $500.
Hopefully, as it was explained to me earlier by the insurance rep, I won't be paying as much next month and so on.
Sure, I'm all "woe is me" right now, but that'll pass. This is initial shock. And it's due to having to, first, spend money that I need for other things, and, two, the fact that someone like me even has to spend money on HIV medication. This is a case, for me, where I see me as part of the working class in America and I am not catching a break: from one end of the spectrum (the ex and those like him) to another (those for whom medical care is an afterthought-expense), there is a gap wherein most of lie where we have to choose between everything that is necessary (meds, food, shelter, etc) or losing most of it. It isn't fair and it isn't right. This blog post is completely biased and written in anger and may be completely offensive and all that bullshit, but who cares? It's all of it spilled milk.
Saturday, February 19, 2011
The Maiden
My mother asked me the other day why I still have all my med bottles. She asked me why I don't just throw them out and I told her that I just wanted to hang on to them. Kind of like a timeline, I said, but I don't think she cared for that very much because she looked at me like I wasn't speaking Spanish. My father then said that I need to look at it from their point of view, and I asked what that was, and neither one of them said anything, but my mother, finally, said she didn't like it.
A few days ago, I was telling Jodi this little bit and she interrupted my telling to ask why was I keeping them. I said they were just like little mementos of the years since my diagnosis. And as I thought about it a bit more, I came up with something a little more sinister: once I was gone, these little plastic bottles would remain. All the chemical fighting, and I'd be dead and I'd leave behind lots of plastic. I said to Jodi that once I was gone, they're what would stay behind. I'm not certain what she said in response but it wasn't anything fully enthusiastic. That I do recall.
I'd also divined my parents' point of view: I'm going to die. These little bits are yet another grand reminder to them, I suppose, and to my friend, that I'm sick. Good thing too because I'd forgotten.
I don't want to turn it into a big thing but my question will always be (until it isn't fact, I suppose) is why is it that the ones who care about me the most seem to be the ones who remind me that I'm unwell? I'm not stupid, I know why, but at the same time, I wish they'd stop it. Because I don't really dwell on it as much as I think they do. I think about it from time to time sure, but what I thought would be a little eccentric way of looking at my being sick has suddenly turned into my building my proverbial coffin. The even more curious thing in regard to my family is how ever-present a specter looms over me. I know why they might think about this, but I wonder why it isn't enough for me to say I'm just doing this for the sake of doing it, it has no further meaning. It is they who add some sort of gray cloud over it. And at this point, I know there isn't anything that I can do to stop them from feeling so.
And it keeps happening.
It's rather frustrating.
It's so strange that from the very beginning everyone I know has said that my being sick isn't 'the end' and that I will still live a 'normal' life. If this is true (it isn't so let's cut THAT bullshit out right now, yes?), then stop being the reminders that I won't. How selfish am I?
Alright, I know these folk's reasons for talking to me in this manner are entirely legit and valid, because all feelings are valid. Even I know this. If this is what they think, I wonder why they won't talk to me about it when I actually ask. Why aren't we allowed to discuss these gloom-doom scenarios that everyone seems to already have, including me? Frankly, perhaps before, the boy was right and I ought to outright ask what everyone what they think about my being sick whenever these things happen. I mean, it sounds a little heavy-handed in way, but at the same time, I wish at all times my folks, my best friend, my friends saw me as me first and never ever this fucking disease.
A few days ago, I was telling Jodi this little bit and she interrupted my telling to ask why was I keeping them. I said they were just like little mementos of the years since my diagnosis. And as I thought about it a bit more, I came up with something a little more sinister: once I was gone, these little plastic bottles would remain. All the chemical fighting, and I'd be dead and I'd leave behind lots of plastic. I said to Jodi that once I was gone, they're what would stay behind. I'm not certain what she said in response but it wasn't anything fully enthusiastic. That I do recall.
I'd also divined my parents' point of view: I'm going to die. These little bits are yet another grand reminder to them, I suppose, and to my friend, that I'm sick. Good thing too because I'd forgotten.
I don't want to turn it into a big thing but my question will always be (until it isn't fact, I suppose) is why is it that the ones who care about me the most seem to be the ones who remind me that I'm unwell? I'm not stupid, I know why, but at the same time, I wish they'd stop it. Because I don't really dwell on it as much as I think they do. I think about it from time to time sure, but what I thought would be a little eccentric way of looking at my being sick has suddenly turned into my building my proverbial coffin. The even more curious thing in regard to my family is how ever-present a specter looms over me. I know why they might think about this, but I wonder why it isn't enough for me to say I'm just doing this for the sake of doing it, it has no further meaning. It is they who add some sort of gray cloud over it. And at this point, I know there isn't anything that I can do to stop them from feeling so.
And it keeps happening.
It's rather frustrating.
It's so strange that from the very beginning everyone I know has said that my being sick isn't 'the end' and that I will still live a 'normal' life. If this is true (it isn't so let's cut THAT bullshit out right now, yes?), then stop being the reminders that I won't. How selfish am I?
Alright, I know these folk's reasons for talking to me in this manner are entirely legit and valid, because all feelings are valid. Even I know this. If this is what they think, I wonder why they won't talk to me about it when I actually ask. Why aren't we allowed to discuss these gloom-doom scenarios that everyone seems to already have, including me? Frankly, perhaps before, the boy was right and I ought to outright ask what everyone what they think about my being sick whenever these things happen. I mean, it sounds a little heavy-handed in way, but at the same time, I wish at all times my folks, my best friend, my friends saw me as me first and never ever this fucking disease.
Wednesday, January 19, 2011
READ: Blue Pills by Frederik Peeters
At one point in 2008, my friend Jodi and I were in Book Soup in West Hollywood. She remembered many years later I nearly got a parking ticket when we were about to leave. We were in Book Soup, just looking about, and we split up briefly at one point (it's such a rather small space, frankly), and I was at their then-new graphic novel section. there really wasn't much that grabbed my attention aside from two books, Adrian Tomine's SHORTCOMINGS (a gift for the best friend) and Frederik Peeters's BLUE PILLS.
When I was finally home, I read BLUE PILLS and I cried and cried as I read it. It's a memoir, telling Peeters's story about meeting his girlfriend Cati and her son, and how they came to be together. Cati and her son are HIV-positive, and Peeters tells us how it was that their relationship came to function, how wonderful it was, how mired in uncertainty it initially was, and how, ultimately, there wasn't necessarily anything spectacular about it. And I cried because for a very long time at that point, I was still having a lot of difficulty with my own then-recent diagnoses.
Christ.
I remember so many nights of not sleeping and thinking about it. Feeling as if I was off-limits, thinking that no one would want me, that I was broken and damaged, and that I was sentenced to an isolated life. I remember as I'm reading BLUE PILLS, when Cati tells Fred of hers and her son's infection, how he reacts, because it wasn't how nearly everyone I knew did. And it made me love him. The romantic in me made me think that even though this was a memoir, guys like Fred were only fiction. I cried because he seemed, rightly or not, hesitant but honest, and still very much willing to take the chance, you know? Ah! It all seems a little muted now, but I remember how great I felt for Cati! I wanted him to want her and he did!
And I remember when talking about Cati's son, when Fred begins to think about this child's future being forever tied to the medical system, and whose live will potentially end in sickness, I was broken apart again. Because that is how I felt, how I foresaw my life. And it didn't matter that everyone seemed terribly upbeat, including my doctor. All I saw, much like Fred, was a life forever linked to a hospital and pills. Blue pills for Cati and her son.
I think this comic did more for me at the time when I needed it the most than anyone or any other thing did. Because it wasn't talking in bullshit: it's direct and a little difficult to read through, but it gave me a glimpse at something other than what my brain had cooked up for months prior. It showed me in rather obvious way that it didn't need to be the end of anything for me, just adding a few more steps to life. And it illustrated very much how a lot of us who're HIV-positive so feel such guilt for seemingly inflicting ourselves upon others, how many mistakes lead us to where we are, and how scary it is to face the world sometimes.
This is the most important book in my life since 2008. Peeters got me. And I'm not even sure if that was his intent. But it accomplished so much for me than I think I can ever be grateful for. Perhaps you think this is all hyperbole. Whatever. I'd read other things (around this time I also read Shawn Decker's MY PET VIRUS, which in trying to talk to people about, they'd rather talk about their asshole boyfriends) and talked to several people about being HIV-positive, but everyone seemed to be either too blase, or too gloomy for me to ever get something useful out of it (I remember telling my doctor then that if "living with HIV" isn't such a big deal, why did everyone around me burst into a little chaos of tears around me). It's one of the instances in my life wherein comic books seem to have more value and truth and love and anguish and even hope than the rest of the universe has.
What I find curious now, even after just re-reading it is that one of the medications I take are blue pills.
[cross-posted everywhere.]
When I was finally home, I read BLUE PILLS and I cried and cried as I read it. It's a memoir, telling Peeters's story about meeting his girlfriend Cati and her son, and how they came to be together. Cati and her son are HIV-positive, and Peeters tells us how it was that their relationship came to function, how wonderful it was, how mired in uncertainty it initially was, and how, ultimately, there wasn't necessarily anything spectacular about it. And I cried because for a very long time at that point, I was still having a lot of difficulty with my own then-recent diagnoses.
Christ.
I remember so many nights of not sleeping and thinking about it. Feeling as if I was off-limits, thinking that no one would want me, that I was broken and damaged, and that I was sentenced to an isolated life. I remember as I'm reading BLUE PILLS, when Cati tells Fred of hers and her son's infection, how he reacts, because it wasn't how nearly everyone I knew did. And it made me love him. The romantic in me made me think that even though this was a memoir, guys like Fred were only fiction. I cried because he seemed, rightly or not, hesitant but honest, and still very much willing to take the chance, you know? Ah! It all seems a little muted now, but I remember how great I felt for Cati! I wanted him to want her and he did!
And I remember when talking about Cati's son, when Fred begins to think about this child's future being forever tied to the medical system, and whose live will potentially end in sickness, I was broken apart again. Because that is how I felt, how I foresaw my life. And it didn't matter that everyone seemed terribly upbeat, including my doctor. All I saw, much like Fred, was a life forever linked to a hospital and pills. Blue pills for Cati and her son.
I think this comic did more for me at the time when I needed it the most than anyone or any other thing did. Because it wasn't talking in bullshit: it's direct and a little difficult to read through, but it gave me a glimpse at something other than what my brain had cooked up for months prior. It showed me in rather obvious way that it didn't need to be the end of anything for me, just adding a few more steps to life. And it illustrated very much how a lot of us who're HIV-positive so feel such guilt for seemingly inflicting ourselves upon others, how many mistakes lead us to where we are, and how scary it is to face the world sometimes.
This is the most important book in my life since 2008. Peeters got me. And I'm not even sure if that was his intent. But it accomplished so much for me than I think I can ever be grateful for. Perhaps you think this is all hyperbole. Whatever. I'd read other things (around this time I also read Shawn Decker's MY PET VIRUS, which in trying to talk to people about, they'd rather talk about their asshole boyfriends) and talked to several people about being HIV-positive, but everyone seemed to be either too blase, or too gloomy for me to ever get something useful out of it (I remember telling my doctor then that if "living with HIV" isn't such a big deal, why did everyone around me burst into a little chaos of tears around me). It's one of the instances in my life wherein comic books seem to have more value and truth and love and anguish and even hope than the rest of the universe has.
What I find curious now, even after just re-reading it is that one of the medications I take are blue pills.
[cross-posted everywhere.]
Friday, September 24, 2010
Year Four
I feel that dry itchy bit in the back of my throat that signals a bit of a cold. Have a headache that hasn't gone away. Physically, I'm not feeling my best (nevermind the sore muscles, the cut up hands, and the blistered and callused feet).
Three years ago, so I got a phone call.
I remember back in fall (I think) of 2008, I realized that all my bellyaching and crying and bullshitting about being sick wasn't getting me anywhere except ridiculous nights of non-sleep and lots of stress. I think I remember feeling, at various points, indestructible. But when I got sick last month while at Corey's, it wasn't so much that I felt it was one of those little emergencies, and right now, me sitting here typing this (can you get tennis elbow even when you don't play that awful tennis?), fearing that sickness again, I realize, of course, that I am not indestructible.
(Did that last sentence even make sense?)
Anyway, even though my fingers have little red cuts all over, I'm looking at tomorrow, the start of my fourth year with my little virus, and as before, it's something that I'm not necessarily not looking forward to, but rather, wondering what it'll bring me physically. I mean, I've been fortunate to be honest: after first talking with Corey and my doctor so long ago, a lot of the things that they said 'could' happen haven't happened. I've not been on the cusp of death nor hospitalized, nothing like that. I think my mind is different, sure, but better than then. All of which is good. But, yes, year four. Which seems weird to think about. It is. I'm not sure if I can describe why; my head is a little full of emotional bugs.
Even through this pre-illness right now, I had a flash that, yes, I will make it to my sixties. Is that weird? Me being overconfident? Who knows, but after a good portion of time now, it seems rather weird to think of my life in terms of a video game character's hit points. I don't know anything about the next thirty odd years, but that smile earlier today at work, my hands being all cut up, my throat being itchy, and my writing this now, I'll take it. Why not?
Three years ago, so I got a phone call.
I remember back in fall (I think) of 2008, I realized that all my bellyaching and crying and bullshitting about being sick wasn't getting me anywhere except ridiculous nights of non-sleep and lots of stress. I think I remember feeling, at various points, indestructible. But when I got sick last month while at Corey's, it wasn't so much that I felt it was one of those little emergencies, and right now, me sitting here typing this (can you get tennis elbow even when you don't play that awful tennis?), fearing that sickness again, I realize, of course, that I am not indestructible.
(Did that last sentence even make sense?)
Anyway, even though my fingers have little red cuts all over, I'm looking at tomorrow, the start of my fourth year with my little virus, and as before, it's something that I'm not necessarily not looking forward to, but rather, wondering what it'll bring me physically. I mean, I've been fortunate to be honest: after first talking with Corey and my doctor so long ago, a lot of the things that they said 'could' happen haven't happened. I've not been on the cusp of death nor hospitalized, nothing like that. I think my mind is different, sure, but better than then. All of which is good. But, yes, year four. Which seems weird to think about. It is. I'm not sure if I can describe why; my head is a little full of emotional bugs.
Even through this pre-illness right now, I had a flash that, yes, I will make it to my sixties. Is that weird? Me being overconfident? Who knows, but after a good portion of time now, it seems rather weird to think of my life in terms of a video game character's hit points. I don't know anything about the next thirty odd years, but that smile earlier today at work, my hands being all cut up, my throat being itchy, and my writing this now, I'll take it. Why not?
Monday, September 6, 2010
See: Sex Positive
For weeks now I've been trying to write out a proper review of the Richard Berkowitz documentary SEX POSITIVE by Daryl Wein and I've failed so many times. I think there are too many thoughts and ideas and (yes!) emotions all fighting to be heard. And even after emailing Berkowitz himself, and talking with Corey about the film, I'm sort of a little lost on the approach. So, here are the five reasons why I feel you ought to see this story:
1 - I didn't know who Richard Berkowitz was when Corey asked me last year (Corey's interview with Berkowitz at HIV Plus Magazine). And when I discovered who he was I naturally wanted to know more. Because his is a name that the greater gay (queer?) community should know and when I discovered it was wasn't, I was appalled. I couldn't imagine the same happening now. SEX POSITIVE does a great job of filling in the blank you don't know you have.
2 - SEX POSITIVE is a great examination of how one man's life was irrevocably altered by going against the standards of thee mainstream gay community. Berkowitz wasn't simply demonized and made out to be an alarmist, he was ignored and dismissed. He was basically called an enemy of the burgeoning gay community of the late 1970's/early 1980's. He wasn't supported by those he wanted to save because...he was trying to save them. It's so heartbreaking to see his story unfold for me as an HIV positive person living in the 21st century. How can any community turn its back on glaring examples of doing right?
3 - Historically, SEX POSITIVE put me in a frame of mind that I was literally too young to understand what was happening in the world. It places you in the context of Berkowitz's life and his world and via Wein's use of archival footage, it reveals the true enemies of mainstream gay culture (itself). It makes me ask myself which side of the fight I'd be on, if at all. It makes me ask myself what I would do if circumstances where so similar in my life. It begs the obvious questions of us all about personal responsibility, ignorance, and even persecution all within the subculture we belong to. It makes me counter attack those who claim are only out for what's good for me and mine.
4 - Berkowitz's story strikes me very personally because Corey and I are HIV positive, and a lot of the bargaining Berkowitz shares on screen years after the fact remind me so much of the bargaining I've done over the years in terms of having unprotected sex. SEX POSITIVE makes me reflect on how, in the 1980's, gay men like Berkowitz, even knowing they'll keep getting STDs, still engaged in bareback sex, all of which is so personally prophetic when I think over my life and how I'd realized various times that I too was exposing myself to all sorts of nasty STDs including HIV/AIDS...and I still chose to engange in unsafe sex. So smart, all of us, just not smart enough.
5 - SEX POSITIVE is a human story. One that any person can relate to I think, particularly in this present day: HIV/AIDS not being the gay disease it used to be known as. That's the trite thing to say but still, I believe it to be true. And Richard Berkowitz, like so many other people before him, stood up against those who would shut him out of his community and still screamed. Me, so far removed from that place and time, and still not, I see a man who did not lose more than he gained: he never acquiesced and didn't waver. He was his own man.
1 - I didn't know who Richard Berkowitz was when Corey asked me last year (Corey's interview with Berkowitz at HIV Plus Magazine). And when I discovered who he was I naturally wanted to know more. Because his is a name that the greater gay (queer?) community should know and when I discovered it was wasn't, I was appalled. I couldn't imagine the same happening now. SEX POSITIVE does a great job of filling in the blank you don't know you have.
2 - SEX POSITIVE is a great examination of how one man's life was irrevocably altered by going against the standards of thee mainstream gay community. Berkowitz wasn't simply demonized and made out to be an alarmist, he was ignored and dismissed. He was basically called an enemy of the burgeoning gay community of the late 1970's/early 1980's. He wasn't supported by those he wanted to save because...he was trying to save them. It's so heartbreaking to see his story unfold for me as an HIV positive person living in the 21st century. How can any community turn its back on glaring examples of doing right?
3 - Historically, SEX POSITIVE put me in a frame of mind that I was literally too young to understand what was happening in the world. It places you in the context of Berkowitz's life and his world and via Wein's use of archival footage, it reveals the true enemies of mainstream gay culture (itself). It makes me ask myself which side of the fight I'd be on, if at all. It makes me ask myself what I would do if circumstances where so similar in my life. It begs the obvious questions of us all about personal responsibility, ignorance, and even persecution all within the subculture we belong to. It makes me counter attack those who claim are only out for what's good for me and mine.
4 - Berkowitz's story strikes me very personally because Corey and I are HIV positive, and a lot of the bargaining Berkowitz shares on screen years after the fact remind me so much of the bargaining I've done over the years in terms of having unprotected sex. SEX POSITIVE makes me reflect on how, in the 1980's, gay men like Berkowitz, even knowing they'll keep getting STDs, still engaged in bareback sex, all of which is so personally prophetic when I think over my life and how I'd realized various times that I too was exposing myself to all sorts of nasty STDs including HIV/AIDS...and I still chose to engange in unsafe sex. So smart, all of us, just not smart enough.
5 - SEX POSITIVE is a human story. One that any person can relate to I think, particularly in this present day: HIV/AIDS not being the gay disease it used to be known as. That's the trite thing to say but still, I believe it to be true. And Richard Berkowitz, like so many other people before him, stood up against those who would shut him out of his community and still screamed. Me, so far removed from that place and time, and still not, I see a man who did not lose more than he gained: he never acquiesced and didn't waver. He was his own man.
Thursday, August 26, 2010
Status Symbol +
Last month, Corey and I were at Highways Performance Space early in the morning, waiting for the tech/sound guy to get ready to help Corey rehearse for his show later that day. In the meanwhile, Corey and I took a brief walk through the small gallery there and saw the polaroids being featured there that month, THE FAIROAKS PROJECT: PHOTOS BY FRANK MELLENO. There were several photographs showing candid scenes at this bath house and aside from the obvious nudity and good heartedness of them, a few showed clear unprotected anal sex. Corey and I looked, he made a mention about how that culture was so integral to gay culture as a whole, but how it was how many men basically met their death that way, through unprotected sex which eventually lead to STDs including AIDS/HIV. Then, Corey and I briefly discussed whether or not the owners of such an establishment felt any sort of guilt for any of the deaths that came from that. We asked whether or not we should hold these business owners partly responsible for what happened to a lot of their patrons. Corey and I have talked about this a lot more since then. We talked about personal responsibility, and culpability, and our own experiences -- his in bath houses and mine in anonymous sex -- and how very much it seems that there will always be more of us getting infected with HIV or other STDs.
Over the years and my sketchy sexual past, I've had only one pregnancy scare, and I've had one HIV-positive blood test. Frankly, both coming rather late in my life (the former when I was 27, the latter three years ago), it could be argued I'm fortunate that way. Marginally. But until 2007, nearly all the sex I'd had since I was in my early twenties was without condoms and rather unsafe for me and whoever I was having sex with. There were several times when either men or women I slept with wanted to use condoms and I never reneged, I never argued. My own irresponsibility is that it wasn't ever me who made the choice to use condoms. I couldn't even tell you when it was that I used a condom last, how terrible is that? Probably back after that pregnancy scare, I think. This is all my own lack of personal responsibility: I'm very fortunate to have not developed something insidious through this part of my life and spread it about. And sometimes, since being aware of my own HIV infection, I wonder when I became infected for certain (I have a vague idea but only just a vague idea of it happening probably as early as late 2005/early 2006) and whether or not I had sex with anyone after that and unbeknownst to me, infecting someone else. What if I did? The possibility exists, but I don't know for sure. Anyway...
Earlier today I came across this article, discovering that a German singer had willfully engaged in unprotected sex with man several times, resulting in his own HIV infection, and was found guilty of a crime. In California (according to page thirteen of this PDF guide), it is a felony for an HIV-positive person to engage in unprotected sex with a HIV-negative person without disclosing the former's status.
All of this bringing me back to Corey's and my conversation about the owners of bath houses: do they share a certain amount of responsibility for a lot of us becoming infected, obviously gay men and men who have sex with men in particular? I don't think so. Corey and I agreed in that these people who run these places, they know what happens within the walls of their establishments, and sure, they can put out condoms for their customers, but they certainly aren't either required to enforce safe sex as a rule in their bath houses.
Personally, even though learning I was HIV-positive wasn't really an easy thing to move through, I don't believe I can blame anyone other than me. Really. I chose to have sex with lots of people without even asking about using a condom. Was it their fault? Not really. I mean, first time a man wanted to have sex bareback, I could've said no but didn't. I never made it a point to be protected because all I wanted was sex. It didn't matter. It didn't register. It was a non-issue. And to my recollection, it wasn't ever a debate. So, while not easy, my current status is pretty much my fault. Regardless of any of my sex partners's statuses, it was my choice not to engage in safe sex. Because, you see, I'm a relatively bright individual, I've always been informed, I know the whys and whats that comprise safe sex...and I still chose NOT to do it.
I've never been to a bath house, but, as I posited to Corey then, if I did, I don't believe I would believe that anyone who I fucked with there would really care about whether I was infecting them, or they me. I think it's as base as that. We simply do not care. And if the people who're engaging in the actual sex don't care, I'd imagine those taking our money to come in and use their building to fuck definitely don't care either. I can't fault them for it. I can only fault those who still do it, but even then, my own authority and responsibility stops at myself and, to a degree, my partner. I can't chastise anyone who still engages in bath house bareback sex sessions, I can offer my opinion in the discussion, but none of us can interfere in anyone else's life.
Wonder what it means when people of all ages, men and women both, continue to engage in unsafe promiscuous sex as a whole? Because, like me, we all know the risks associated with barebacking, so what does it mean that we will continue to spread diseases among ourselves so freely? I'm talking about us rational, seemingly normal, well educated, bright, informed adults, we're the ones I'm asking.
I know I'm HIV-positive, and everyone who knows me also knows. Now, what my personal responsibility is is letting those I will meet know. This HIV status is my ever-present pregnancy scare.
(most recent HIV statistics for California, Los Angeles County)
Over the years and my sketchy sexual past, I've had only one pregnancy scare, and I've had one HIV-positive blood test. Frankly, both coming rather late in my life (the former when I was 27, the latter three years ago), it could be argued I'm fortunate that way. Marginally. But until 2007, nearly all the sex I'd had since I was in my early twenties was without condoms and rather unsafe for me and whoever I was having sex with. There were several times when either men or women I slept with wanted to use condoms and I never reneged, I never argued. My own irresponsibility is that it wasn't ever me who made the choice to use condoms. I couldn't even tell you when it was that I used a condom last, how terrible is that? Probably back after that pregnancy scare, I think. This is all my own lack of personal responsibility: I'm very fortunate to have not developed something insidious through this part of my life and spread it about. And sometimes, since being aware of my own HIV infection, I wonder when I became infected for certain (I have a vague idea but only just a vague idea of it happening probably as early as late 2005/early 2006) and whether or not I had sex with anyone after that and unbeknownst to me, infecting someone else. What if I did? The possibility exists, but I don't know for sure. Anyway...
Earlier today I came across this article, discovering that a German singer had willfully engaged in unprotected sex with man several times, resulting in his own HIV infection, and was found guilty of a crime. In California (according to page thirteen of this PDF guide), it is a felony for an HIV-positive person to engage in unprotected sex with a HIV-negative person without disclosing the former's status.
All of this bringing me back to Corey's and my conversation about the owners of bath houses: do they share a certain amount of responsibility for a lot of us becoming infected, obviously gay men and men who have sex with men in particular? I don't think so. Corey and I agreed in that these people who run these places, they know what happens within the walls of their establishments, and sure, they can put out condoms for their customers, but they certainly aren't either required to enforce safe sex as a rule in their bath houses.
Personally, even though learning I was HIV-positive wasn't really an easy thing to move through, I don't believe I can blame anyone other than me. Really. I chose to have sex with lots of people without even asking about using a condom. Was it their fault? Not really. I mean, first time a man wanted to have sex bareback, I could've said no but didn't. I never made it a point to be protected because all I wanted was sex. It didn't matter. It didn't register. It was a non-issue. And to my recollection, it wasn't ever a debate. So, while not easy, my current status is pretty much my fault. Regardless of any of my sex partners's statuses, it was my choice not to engage in safe sex. Because, you see, I'm a relatively bright individual, I've always been informed, I know the whys and whats that comprise safe sex...and I still chose NOT to do it.
I've never been to a bath house, but, as I posited to Corey then, if I did, I don't believe I would believe that anyone who I fucked with there would really care about whether I was infecting them, or they me. I think it's as base as that. We simply do not care. And if the people who're engaging in the actual sex don't care, I'd imagine those taking our money to come in and use their building to fuck definitely don't care either. I can't fault them for it. I can only fault those who still do it, but even then, my own authority and responsibility stops at myself and, to a degree, my partner. I can't chastise anyone who still engages in bath house bareback sex sessions, I can offer my opinion in the discussion, but none of us can interfere in anyone else's life.
Wonder what it means when people of all ages, men and women both, continue to engage in unsafe promiscuous sex as a whole? Because, like me, we all know the risks associated with barebacking, so what does it mean that we will continue to spread diseases among ourselves so freely? I'm talking about us rational, seemingly normal, well educated, bright, informed adults, we're the ones I'm asking.
I know I'm HIV-positive, and everyone who knows me also knows. Now, what my personal responsibility is is letting those I will meet know. This HIV status is my ever-present pregnancy scare.
(most recent HIV statistics for California, Los Angeles County)
Saturday, August 21, 2010
Alive
We were sitting at the Beverly Center, just outside the H & M store, having coffee and talking. And as we were talking about HIV and AIDS and the lack of impactful presence and communication in the gay community, we also came up with the same lack in the minority communities, especially 'straight' communities. So, we're talking. And we reach a point, again, when we're talking about when we're old, in our sixties, and honestly I'm not remembering the details of that, but we both made the observation that us making it to our sixties (and beyond) isn't out of the realm of possibility, the likelihood of it had grown a bit slimmer. I think it was me, pointing this out.
For a lot of the first year since I first discovered my own HIV infection, my greatest fear was that I would automatically become sick, you know? I would be that sick best friend in a sitcom, in a hospital room, hooked up to machines, looking sallow and my skin would be as thin as rice paper. I spent months crying and not sleeping well because it felt as if when I would wake up the next day I'd open my eyes and I'd have a tube up my nose. My doctor, then, said this is what would happen, and I didn't want to believe him despite his experience. And now, in retrospect, as I've said to Corey before, I can sort of chuckle about it because, well, my doctor was dead on, and I, of course, am not in some hospice somewhere, immobile and dying.
But that's just it, isn't it? Corey and I have gotten into a bit of a habit of making jokes about us "having AIDS" and us "dying" and us being sick. And we laugh. I've said to him how funny it sounds to me when I say something and his response is he's dying. Maybe you have to be there. Anyway, so why do we make the jokes? I mean, we're not with one foot in the grave as they say. That's what my doctor, then, would say to me. And it's the cliche we hear that once HIV infection appears, it's not a "death sentence" but Corey and I make jokes and comments to the contrary.
So, we're talking, drinking our coffee, laughing and all, and I point out we may not reach to live our sixties. I say how the odds are against us reaching that age. I'm not dismissing the possibility that we could. It's the likelihood that I latched on to. Corey details for me some more of what he saw and heard at and HIV training workshop last Sunday, and something reminds me of something I've come to realize about me over the last three years or so. After so much fright and so much worrying in that initial year, I said to Corey, I think there's going to come a time when my illness will more than show, whether it is through the damage it'll do to my body, or if I do indeed end up in a hospital bed until the end. I've come to accept the possibility of that. I don't think I've reached any grand zenith of self-realization, but I'm trying to keep a sort of realistic perspective on it.
Corey, since the very beginning, has been the person I can talk to about being HIV positive (the phrase 'living with HIV' is so much more passive and inert and ridiculous), but it was the first time I articulated to him this thought. Yes, we can joke around about telling some social services person we need help because we have AIDS, but I'd not brought up before the idea that, yes, we could be in fact dying of AIDS. But I'm not all gloom. I mean, what I think I have allowed into my life is that the possibility for the opposite of living is present, and not in a fatalistic nor negative way. I think the realization of that is something that we shy away from. Even from when I was a kid, through the sex education classes, through college, and through the real world, I never once heard that, hey, you know, being HIV/AIDS positive raises the incidence for premature death, so, keep that in mind. Why don't we tackle that, why don't we hear that?
Look, I'm not saying we should linger on the more sinister aspects of being HIV positive, that's just unhealthy and morbid and really rather strange. But I don't think we should discount what it probably means for a lot of us. I know I'm not the only one. I think it's okay to accept, or recognize the presence of one last final emergency in our lives (hell, we all say a lot of time that we could get hit by a bus tomorrow!). I'm going to take my last pill of the day, watch a few more episodes of the same tv show on dvd I watch, and get up and clean house, and talk to my boyfriend and kiss him.
I'm alive, after all.
For a lot of the first year since I first discovered my own HIV infection, my greatest fear was that I would automatically become sick, you know? I would be that sick best friend in a sitcom, in a hospital room, hooked up to machines, looking sallow and my skin would be as thin as rice paper. I spent months crying and not sleeping well because it felt as if when I would wake up the next day I'd open my eyes and I'd have a tube up my nose. My doctor, then, said this is what would happen, and I didn't want to believe him despite his experience. And now, in retrospect, as I've said to Corey before, I can sort of chuckle about it because, well, my doctor was dead on, and I, of course, am not in some hospice somewhere, immobile and dying.
But that's just it, isn't it? Corey and I have gotten into a bit of a habit of making jokes about us "having AIDS" and us "dying" and us being sick. And we laugh. I've said to him how funny it sounds to me when I say something and his response is he's dying. Maybe you have to be there. Anyway, so why do we make the jokes? I mean, we're not with one foot in the grave as they say. That's what my doctor, then, would say to me. And it's the cliche we hear that once HIV infection appears, it's not a "death sentence" but Corey and I make jokes and comments to the contrary.
So, we're talking, drinking our coffee, laughing and all, and I point out we may not reach to live our sixties. I say how the odds are against us reaching that age. I'm not dismissing the possibility that we could. It's the likelihood that I latched on to. Corey details for me some more of what he saw and heard at and HIV training workshop last Sunday, and something reminds me of something I've come to realize about me over the last three years or so. After so much fright and so much worrying in that initial year, I said to Corey, I think there's going to come a time when my illness will more than show, whether it is through the damage it'll do to my body, or if I do indeed end up in a hospital bed until the end. I've come to accept the possibility of that. I don't think I've reached any grand zenith of self-realization, but I'm trying to keep a sort of realistic perspective on it.
Corey, since the very beginning, has been the person I can talk to about being HIV positive (the phrase 'living with HIV' is so much more passive and inert and ridiculous), but it was the first time I articulated to him this thought. Yes, we can joke around about telling some social services person we need help because we have AIDS, but I'd not brought up before the idea that, yes, we could be in fact dying of AIDS. But I'm not all gloom. I mean, what I think I have allowed into my life is that the possibility for the opposite of living is present, and not in a fatalistic nor negative way. I think the realization of that is something that we shy away from. Even from when I was a kid, through the sex education classes, through college, and through the real world, I never once heard that, hey, you know, being HIV/AIDS positive raises the incidence for premature death, so, keep that in mind. Why don't we tackle that, why don't we hear that?
Look, I'm not saying we should linger on the more sinister aspects of being HIV positive, that's just unhealthy and morbid and really rather strange. But I don't think we should discount what it probably means for a lot of us. I know I'm not the only one. I think it's okay to accept, or recognize the presence of one last final emergency in our lives (hell, we all say a lot of time that we could get hit by a bus tomorrow!). I'm going to take my last pill of the day, watch a few more episodes of the same tv show on dvd I watch, and get up and clean house, and talk to my boyfriend and kiss him.
I'm alive, after all.
Wednesday, July 28, 2010
More Of Us
Yesterday, Corey texts me about a boy who got in contact with him after seeing this picture in THE ADVOCATE (Corey's blurb is number seven in the series). This boy recently found out he was HIV positive and when he saw Corey with his doctor, something clicked in him to reach out and say what he needed to say, I suppose. Last night, we're talking about it, and I say to Corey how this kid must feel, you know, seeing someone as healthy-looking as him and reach out because of what is currently going through this kid's mind. Corey says that it's happened to him before, several times. At one point last night, I naturally recall what it was like when I first found out what it was like when I first found out I was HIV positive. Then, about three years ago, I'd known Corey for about a year and only online (we'd started communicating via myspace because I really liked his writing there). Below is the email I sent him then:
From: Javier
Date: Oct 5, 2007 11:46 AM
hi corey...
i find it a little weird i'm writing you this email; we've not met and know of the other online. this is the twenty-first century, i guess.
i know you read some of the things i post on here and you've emailed me about a few as i have about yours, randomly, so i hope this doesn't come off rude or in appropriate but i need some advice, and really, i hope you can offer me some because i'm a little lost.
two weeks ago i went to the doctor about something i thought was serious but turned out not to be. a week ago today, my doctor calls me and tells me my blood tests show i'm hiv positive. went through a lot emotionally and mentally over the last seven days, and my initial visit with my infectious disease doctor this week's calmed me down a lot. but i still find myself constantly thinking about it, driving myself crazy when there is no need. just returned from another blood test, and i'm sitting here, trying to read the paper and i can't.
maybe it's not really advice i want or need. but, i guess, what i really want to ask is how did you get over this initial shock? how do you reconcile the news with your everyday life? my friends are a great and all (and i've yet to talk to my family about this), but lots of times i just feel like i'm bothering them (i don't know if this is the right word) with all of this.
any advice is welcomed. as i mentioned earlier, hope this isn't inappropriate in any way, but i'm kind of feeling a little lost right now. hope you're doing well, writing lots, and enjoying this nice friday. thank you for your time reading this.
j.
Last night, Corey says the kid who reached out to him, I'll call him W. And I'm re-reading these emails from long ago and wondering if right now, somewhere in Oklahoma, there is a kid who's feeling just like I felt in October 2007. Of course there is. After I found out my diagnosis, I began keeping a blog for that here and I began posting pictures on flickr as well.
Also, last night, while about to call Corey on the phone, I got a direct message on twitter that said (sic, to be sure): "so i know this is completley random but I was going thru ur tweets, and pics on flickr and was wondering howd you tell ya mom about ya status". It came from a flickr and twitter and facebook 'friend' who I don't know (I'll call him D). We've exchanged comments on pictures I think, and a couple of tweets, but that's it. So, I answered and got back on the phone with Corey. But later that night, as he answered me back and I got a better idea of why this boy was reaching out to me (a latter direct message says, "...ya pics kinda let me know im not the only 1 in a relationship so its reassuring. yall like a hallmark card"), I began to think more as Corey and I had said earlier of the impetus we get to reach out to strangers in regard to something so life-altering.
Corey and I were talking last night and came up with that in this circumstance all we can do is be ourselves and be honest with these kids, which is what Corey was for me years ago. Corey even went further and said that there really wasn't anything that we could say that was the wrong thing and I agree with him. All things considered, after finding out you're HIV positive, what could another positive person say to you that he shouldn't? And I thought a little more on it when Corey said that me, now being the one someone reached out to, could be seen as becoming part of something bigger. And I think that was the feeling I got after I exchanged messages with D. As we talked, I pointed out to Corey that W and D both had not revealed their statuses to more than a couple of people (parents, and boyfriend & best friend, respectively) and us individually, and this, in turn, made me dig out the email I posted above because, well, the case was the same for me then. I wonder if Corey's was as well.
One of the most striking things that we came up with in conversation last night was how it simply keeps on happening: Corey said how at a recent performance he attended, a performer said in his piece how exes revealing their new-found HIV positive statuses showed him how it felt as if it were still 1983 at the height od the AIDS/HIV epidemic, and Corey and I did not disagree with that sentiment. I made the observation to Corey how I think I'm a bright guy, you know, and pretty decent, but still I got infected. Likewise, I said, Corey did also. A little chuckle between us both, but it's pretty much true: never once in my life did I ever think I'd sit here, typing away about this, but I am because of the choices I made or didn't make along the way. For me, until 2007, having sex was something I did to pass the time while intoxicated or bored. It's never really been the most important thing in my life, but when I was in it, I never considered the risks of unprotected vaginal or anal or even oral sex. I was an adult making dubious choices and when I was thirty, well, I discovered this bug in my blood. And I remember being so shocked then, obviously, but objective hindsight tells me, "Fuck, Javier, what the hell did you think would happen?"
Honestly, I think had anyone I knew at the time said to me to protect myself and avoid multiple sex partners and all that I wouldn't have listened anyway. It's the arrogance of the human being. And, even now, I don't fault anyone for anything because I made the choice to have some man fuck me bareback when I knew all the consequences it entailed. And of course it's a little late for blame-gaming. Curiously, I still believe it's a matter of choice with us adults, who we have sex with and how, and the greater responsibility is for oneself and not count on others to look out for us. So paradoxical, this, since I want folk to be safe, but am not so forceful in that belief.
So: W and D are part of this whole of us HIV positive men of color. I'm not out to castigate and chastise but to listen and hopefully help. Because I remember exactly how each of these two boys are feeling right now. I remember how it felt to hit the send button in that email to a stranger of whom one of the things I knew was his HIV status. Because then, like W and D, all I wanted was someone to listen to me and tell me something. Anything. And like W and D and Corey and I, there will unfortunately always be more and more of us who need US.
Of course, we will always be here.
From: Javier
Date: Oct 5, 2007 11:46 AM
hi corey...
i find it a little weird i'm writing you this email; we've not met and know of the other online. this is the twenty-first century, i guess.
i know you read some of the things i post on here and you've emailed me about a few as i have about yours, randomly, so i hope this doesn't come off rude or in appropriate but i need some advice, and really, i hope you can offer me some because i'm a little lost.
two weeks ago i went to the doctor about something i thought was serious but turned out not to be. a week ago today, my doctor calls me and tells me my blood tests show i'm hiv positive. went through a lot emotionally and mentally over the last seven days, and my initial visit with my infectious disease doctor this week's calmed me down a lot. but i still find myself constantly thinking about it, driving myself crazy when there is no need. just returned from another blood test, and i'm sitting here, trying to read the paper and i can't.
maybe it's not really advice i want or need. but, i guess, what i really want to ask is how did you get over this initial shock? how do you reconcile the news with your everyday life? my friends are a great and all (and i've yet to talk to my family about this), but lots of times i just feel like i'm bothering them (i don't know if this is the right word) with all of this.
any advice is welcomed. as i mentioned earlier, hope this isn't inappropriate in any way, but i'm kind of feeling a little lost right now. hope you're doing well, writing lots, and enjoying this nice friday. thank you for your time reading this.
j.
Last night, Corey says the kid who reached out to him, I'll call him W. And I'm re-reading these emails from long ago and wondering if right now, somewhere in Oklahoma, there is a kid who's feeling just like I felt in October 2007. Of course there is. After I found out my diagnosis, I began keeping a blog for that here and I began posting pictures on flickr as well.
Also, last night, while about to call Corey on the phone, I got a direct message on twitter that said (sic, to be sure): "so i know this is completley random but I was going thru ur tweets, and pics on flickr and was wondering howd you tell ya mom about ya status". It came from a flickr and twitter and facebook 'friend' who I don't know (I'll call him D). We've exchanged comments on pictures I think, and a couple of tweets, but that's it. So, I answered and got back on the phone with Corey. But later that night, as he answered me back and I got a better idea of why this boy was reaching out to me (a latter direct message says, "...ya pics kinda let me know im not the only 1 in a relationship so its reassuring. yall like a hallmark card"), I began to think more as Corey and I had said earlier of the impetus we get to reach out to strangers in regard to something so life-altering.
Corey and I were talking last night and came up with that in this circumstance all we can do is be ourselves and be honest with these kids, which is what Corey was for me years ago. Corey even went further and said that there really wasn't anything that we could say that was the wrong thing and I agree with him. All things considered, after finding out you're HIV positive, what could another positive person say to you that he shouldn't? And I thought a little more on it when Corey said that me, now being the one someone reached out to, could be seen as becoming part of something bigger. And I think that was the feeling I got after I exchanged messages with D. As we talked, I pointed out to Corey that W and D both had not revealed their statuses to more than a couple of people (parents, and boyfriend & best friend, respectively) and us individually, and this, in turn, made me dig out the email I posted above because, well, the case was the same for me then. I wonder if Corey's was as well.
One of the most striking things that we came up with in conversation last night was how it simply keeps on happening: Corey said how at a recent performance he attended, a performer said in his piece how exes revealing their new-found HIV positive statuses showed him how it felt as if it were still 1983 at the height od the AIDS/HIV epidemic, and Corey and I did not disagree with that sentiment. I made the observation to Corey how I think I'm a bright guy, you know, and pretty decent, but still I got infected. Likewise, I said, Corey did also. A little chuckle between us both, but it's pretty much true: never once in my life did I ever think I'd sit here, typing away about this, but I am because of the choices I made or didn't make along the way. For me, until 2007, having sex was something I did to pass the time while intoxicated or bored. It's never really been the most important thing in my life, but when I was in it, I never considered the risks of unprotected vaginal or anal or even oral sex. I was an adult making dubious choices and when I was thirty, well, I discovered this bug in my blood. And I remember being so shocked then, obviously, but objective hindsight tells me, "Fuck, Javier, what the hell did you think would happen?"
Honestly, I think had anyone I knew at the time said to me to protect myself and avoid multiple sex partners and all that I wouldn't have listened anyway. It's the arrogance of the human being. And, even now, I don't fault anyone for anything because I made the choice to have some man fuck me bareback when I knew all the consequences it entailed. And of course it's a little late for blame-gaming. Curiously, I still believe it's a matter of choice with us adults, who we have sex with and how, and the greater responsibility is for oneself and not count on others to look out for us. So paradoxical, this, since I want folk to be safe, but am not so forceful in that belief.
So: W and D are part of this whole of us HIV positive men of color. I'm not out to castigate and chastise but to listen and hopefully help. Because I remember exactly how each of these two boys are feeling right now. I remember how it felt to hit the send button in that email to a stranger of whom one of the things I knew was his HIV status. Because then, like W and D, all I wanted was someone to listen to me and tell me something. Anything. And like W and D and Corey and I, there will unfortunately always be more and more of us who need US.
Of course, we will always be here.
Wednesday, July 7, 2010
Round Two
Yesterday I went for my second doctor's appointment for 2010. Honestly, it seems as if it was only a few weeks ago, not months, that I was there, imagining how far away July was. It was February then.
So, I talk to my doctor about the loss of my job, and the aches in my knees. He talks to me about a couple of things that I wasn't so much expecting...well, one I knew. I gained a substantial amount of weight since last I saw him. That's a given. Something that I see while trying to run, and daily in the mirror. The other thing isn't so easy to tell because I feel perfectly okay. My doctor says my cholesterol's climbed somewhat, not alarmingly, but enough that he suggests eating better. And he says my liver seems to be working a little more than normal. He says it could be my body's way of fighting the weight gain, and it's affecting the my liver. He asks me whether or not I've been taking pain medication regularly and he asks me whether or not I've been drinking regularly, even if not to excess. Everything answered, he says it's nothing to really be concerned with, but he'd still rather see what's going on with my liver so he says he'll schedule a liver sonogram just to see what's going on.
Of course, the way my brain works - and, honestly, the way it seems to go with doctors and me - I'm already waiting to hear about some liver damage. Perhaps something a bit more substantial? And even though I am not prone to weird delusions or hypochondria, I've this feeling that, well, something else is going to come up, whether serious or not. My joke and my older brother's is that, what if all those years of heavy boozing are now showing themselves, now that I'm sick and gained weight and have severely cut in my physical activities. It's a joke, did I say?
It wouldn't be surprising if it was *something*. I really hope there isn't anything further to be made of this that can't be resolved by better diet and more exercise. Nevermind physically, but the way things this second quarter of 2010 have been, I don't think I could take more emotionally.
Finished watching Spike Lee's 25th HOUR just now. Perfect film based off a perfect novel. Perfectly cast and acted, the script is particularly brilliant (David Benioff wrote both, the source novel and screenplay), and the direction and cinematography are also perfect. The thing I like the least about it is Terence Blanchard's score, not that it is bad, but perhaps a bit too melodramatic for the movie. Anyway, perfect...
So, I talk to my doctor about the loss of my job, and the aches in my knees. He talks to me about a couple of things that I wasn't so much expecting...well, one I knew. I gained a substantial amount of weight since last I saw him. That's a given. Something that I see while trying to run, and daily in the mirror. The other thing isn't so easy to tell because I feel perfectly okay. My doctor says my cholesterol's climbed somewhat, not alarmingly, but enough that he suggests eating better. And he says my liver seems to be working a little more than normal. He says it could be my body's way of fighting the weight gain, and it's affecting the my liver. He asks me whether or not I've been taking pain medication regularly and he asks me whether or not I've been drinking regularly, even if not to excess. Everything answered, he says it's nothing to really be concerned with, but he'd still rather see what's going on with my liver so he says he'll schedule a liver sonogram just to see what's going on.
Of course, the way my brain works - and, honestly, the way it seems to go with doctors and me - I'm already waiting to hear about some liver damage. Perhaps something a bit more substantial? And even though I am not prone to weird delusions or hypochondria, I've this feeling that, well, something else is going to come up, whether serious or not. My joke and my older brother's is that, what if all those years of heavy boozing are now showing themselves, now that I'm sick and gained weight and have severely cut in my physical activities. It's a joke, did I say?
It wouldn't be surprising if it was *something*. I really hope there isn't anything further to be made of this that can't be resolved by better diet and more exercise. Nevermind physically, but the way things this second quarter of 2010 have been, I don't think I could take more emotionally.
* * *
Finished watching Spike Lee's 25th HOUR just now. Perfect film based off a perfect novel. Perfectly cast and acted, the script is particularly brilliant (David Benioff wrote both, the source novel and screenplay), and the direction and cinematography are also perfect. The thing I like the least about it is Terence Blanchard's score, not that it is bad, but perhaps a bit too melodramatic for the movie. Anyway, perfect...
Tuesday, May 18, 2010
Blue Sky
Last night, while on the phone with Golden, I needed to take one my meds, and did. And tried very hard to articulate to my best friend how I'd just had a little dispiriting moment. She said I better continue taking my meds and I tried to tell her that it wasn't that I wouldn't continue taking them, but that the fact that I had just then done it made me think, 'Shit, here we are, for life,' and she said I better. So, I tried again that it wasn't as if the medication was an option but that I was yet again reminded that I had to take them because it'll keep me a little safer for alittle while longer (Corey and I joke that they keep us alive (which is true but then I guess for someone who's not HIV/AIDS positive, they might think that's a fucked thing for anyone to say, but, hey it makes us laugh)), and my best friend just castigated me a bit that I better not consider stopping.
Sigh, right?
I've often wondered what goes on through my family's individual minds about me whenever this topic comes up, intentionally or not. I was on the phone with Golden, so I just verybalized what I thought, and I wonder if she did the same. Who really knows. Sometimes I just want to ask them straight out if they think I feel different physically, do they think I feel as if I'm ebbing away, are they constantly thinking that I'm dying, what do they see when they see me? Two years ago I began shaving my head, and my mother had a fucking fit over that because she and my father both said it reminded them I was sick. Now, so far removed, I call bullshit on that. At the time I didn't, but I did ask if they honestly thought that's what I looked like, a sick person. Neither really said so.
Yes, every so often I have pangs of, 'Man, I am seriously fucked and sick and shit,' and I feel bad about it for a moment but it passes more quickly than you'd think. Maybe feel bad is the wrong phrase. But for a brief moment, I'm taken back to three years ago and I'm thinking that I've this weird dark cloud over me that no one I love except for Corey really understand. The people in my life, how do you tell them that randomly, briefly, for just a moment, I realize I've a disease that could be killing me rightnowthisverysecond?
Sure, even a dark rain cloud passes over time, but mostly after it's left its mark on the rain-soaked ground.
Sigh, right?
I've often wondered what goes on through my family's individual minds about me whenever this topic comes up, intentionally or not. I was on the phone with Golden, so I just verybalized what I thought, and I wonder if she did the same. Who really knows. Sometimes I just want to ask them straight out if they think I feel different physically, do they think I feel as if I'm ebbing away, are they constantly thinking that I'm dying, what do they see when they see me? Two years ago I began shaving my head, and my mother had a fucking fit over that because she and my father both said it reminded them I was sick. Now, so far removed, I call bullshit on that. At the time I didn't, but I did ask if they honestly thought that's what I looked like, a sick person. Neither really said so.
Yes, every so often I have pangs of, 'Man, I am seriously fucked and sick and shit,' and I feel bad about it for a moment but it passes more quickly than you'd think. Maybe feel bad is the wrong phrase. But for a brief moment, I'm taken back to three years ago and I'm thinking that I've this weird dark cloud over me that no one I love except for Corey really understand. The people in my life, how do you tell them that randomly, briefly, for just a moment, I realize I've a disease that could be killing me rightnowthisverysecond?
Sure, even a dark rain cloud passes over time, but mostly after it's left its mark on the rain-soaked ground.
Tuesday, May 4, 2010
Make It Chemical
Went to pick up my meds and the lady at the pharmacy tells me my insurance has expired. Sure, I can pick up my pills but at full price. What is the full price you ask? Roughly $1200 each. Without insurance, for me to be able to continue living, I'd have to pay these people about $2400 every month. Puts the whole renting vs. buying a house in a weird sort of perspective.
The two pills I take are Truvada and Intelence.
Problem becomes that I haven't been able to get in contact with anyone from my old job's benefits department. This whole COBRA mess was too damn good to be true. I'm sure tomorrow I'll be able to get all this straightened out. Perhaps I should be worried but I'm not. But all of this has brought back to me the idea of a National Health Service. This is the sort of situation where this would be a non-issue if all Americans had equal access to healthcare. Never mind me, imagine if it was you and you needed some sort of treatment just to live but couldn't afford it, what would you do? What could you do?
(I'd called the Long Beach CARE Program recently about other options in regards to options for HIV positive folk in my stead and the very helpful woman on the phone said the best possible option was for me to try to keep my insurance because otherwise, even The Ryan White Act provided little in terms of assistance, and I would then be left up to whatever public assistance can do, which, she said, isn't very much considering my particular situation (which was something that I'd discussed with my older brother and Corey a bit ago, that I'm not sick enough to qualify for government programs and I'm too well off to even apply for them), and that in itself was disappointing to hear, not because of me (well, partly) but because other folk who don't have the resources that I do would simply linger.)
As I'm talking about this cost that I really didn't know until now, I'm reminded of what Clayton Cubitt said last year:
"I can't conceive of inventing a pill that would save lives, then charging money for it. I'm a failed capitalist."
Problem with every industry is that there's always someone who's out to make money. No one wants to just do the right thing, do they?
Anyway, imagine up to what point I'd have to reach before anyone anywhere who isn't family would help me. Suppose it was someone you care about, what then? That's the thing about examples and fictions and for instances, it's all make believe and not real, is it? Tell you something: I'm pretty real.
The two pills I take are Truvada and Intelence.
Problem becomes that I haven't been able to get in contact with anyone from my old job's benefits department. This whole COBRA mess was too damn good to be true. I'm sure tomorrow I'll be able to get all this straightened out. Perhaps I should be worried but I'm not. But all of this has brought back to me the idea of a National Health Service. This is the sort of situation where this would be a non-issue if all Americans had equal access to healthcare. Never mind me, imagine if it was you and you needed some sort of treatment just to live but couldn't afford it, what would you do? What could you do?
(I'd called the Long Beach CARE Program recently about other options in regards to options for HIV positive folk in my stead and the very helpful woman on the phone said the best possible option was for me to try to keep my insurance because otherwise, even The Ryan White Act provided little in terms of assistance, and I would then be left up to whatever public assistance can do, which, she said, isn't very much considering my particular situation (which was something that I'd discussed with my older brother and Corey a bit ago, that I'm not sick enough to qualify for government programs and I'm too well off to even apply for them), and that in itself was disappointing to hear, not because of me (well, partly) but because other folk who don't have the resources that I do would simply linger.)
As I'm talking about this cost that I really didn't know until now, I'm reminded of what Clayton Cubitt said last year:
"I can't conceive of inventing a pill that would save lives, then charging money for it. I'm a failed capitalist."
Problem with every industry is that there's always someone who's out to make money. No one wants to just do the right thing, do they?
Anyway, imagine up to what point I'd have to reach before anyone anywhere who isn't family would help me. Suppose it was someone you care about, what then? That's the thing about examples and fictions and for instances, it's all make believe and not real, is it? Tell you something: I'm pretty real.
Wednesday, February 24, 2010
Double Up
Yesterday I went to the doctor for my winter appointment. While there, I got a chance to talk to him and to his wife, Susan, about how long it's been since I started seeing them. I made a comment how it really hasn't seemed like nearly three years. Susan asked me if I remembered how timid and scared I was the very first time I walked through their office doors and I smiled and said I did remember. Because I do. Of course I do. I'll probably remember it forever.
I first found out I am HIV positive on Friday, September 28, 2007. I'm not going to go into all that diatribe again. If you're so inclined, this is where all that can be found. Anyway: back then, I was a mess. Corey and I were talking recently about it, briefly, and he said how much of a turnaround I seem to have had since the original diagnosis and now. He's right.
Look, I can only say that the first year after finding out I was positive was very difficult for me. And, as I look back, I see someone who isn't who I am now. Which is the only possible outcome as far as I'm concerned. As Corey and I were talking then, I remember saying how very much I would kick myself in the ass if I could; if I could go back in time and talk to 2007 me, I would totally have to tell him to stop with the histrionics and foolishness. But that's for an imaginary life. Now, as things turned out, my numbers are the highest/lowest they've been since I first started seeing my doctor. Way back when, my T-Cell count was 333, and my viral load was over 49000. Yesterday, T-Cells were at 712 and viral load was less than 75. All of which is infinitely good for me. My doctor says the same thing every single time I see him: he says he doesn't see why I keep going to visit him, he says I'm always damn healthy, my blood tests always show that everything is working properly and nothing else indicates anything else. Since I started seeing him, I decided to keep track of my doctor's visits (which has morphed a little into my adventures with general and specialized medicine).
There are some days when I'm fully aware of the virus. And sometimes it gets me down a bit, I'll admit. Usually, it happens when I've forgotten to take my meds or when I need to refill them. It's happened recently, early this winter, as the entire family seemed to be struck with a vicious cold one at a time, and my niece was kept at home so as to not be around me. My older brother's said that there have been times when if Emma, my niece, is sick, he'd rather not expose me to all the little terrors she picks up from the monsters at her school. My father's said I should get the swine flu shot because I am already sick. You know, things like these. Which, as I've said before, makes me feel a little down because everything seems to be a little emergency now.
Still, it seems more like a nuisance than anything else. You know, like getting up and going to work in the damn early predawn hours: you do it because you must, there's no point in crying about it.
I don't know, after leaving the doctor's yesterday, of course everything was made of chocolate and whipped cream! And I think a lot about what could have been, probably more than it's healthy to. But at the same time, I think about myself and how, to Corey's point, there's been such a change, which has been totally unconscious. Used to be I was very good in the middle of a bad situation and it was long-term that I wasn't very good at. Who'd guess things might change? Certainly, not me.
(For your information: here, and here.)
Saturday, January 2, 2010
Squander
In the fall, I had this weird realization: with all the social networking (a phrase I hate, but HAVE TO embrace) everywhere, I know a lot more about strangers than most people I know personally. Which is a little sad I think. I mean, people with whom I share zip codes and cities, I should know them better, shouldn't I? I thought if it was my own aloofness that was making me think this way, but couldn't see that was the reason. Or the only reason. Over the last three weeks or so, as it turns out, I've come to discuss this strange realization with people I know pretty well, and, ignoring the sheer irony of that, I think I came to a pretty sad conclusion: not just anybody rates. In this case 'anybody' means me.
I'm not sure if disconnected is the right word. Probably more like abandoned.
Look, a couple years ago, Golden said to me how she's come to realize that people come and go in and out of your life for particular reasons, and it doesn't mean everyone's going to be close to you, no matter how much you'd like it. I kind of didn't want to accept this. Not until now. Which, in just typing it out right now, makes me feel so naive. But she is right.
I'm feeling a bit off. Probably sad and resentful and I'd really rather not be. But I can't help thinking about when I found out I was sick and thought I could go somewhere I could get that support and that attention I know I was entitled to. And not just that day, but for the remainder. It was the single most important day of my life and I hate feeling I squandered it. Is that wrong and unfair of me, heaping this huge responsibility onto someone who really didn't need it, couldn't handle it, or possibly never wanted it? What is it that I thought would come from it? I'm not sure, but I suppose as I think about it more and more, and little bits of anger grow, had I known how it's all worked out in two-plus years, I wouldn't have bothered.
It's just past three in the morning and I'm thinking about this now.
Have I said? I hate the twenty-first century.
I'm not sure if disconnected is the right word. Probably more like abandoned.
Look, a couple years ago, Golden said to me how she's come to realize that people come and go in and out of your life for particular reasons, and it doesn't mean everyone's going to be close to you, no matter how much you'd like it. I kind of didn't want to accept this. Not until now. Which, in just typing it out right now, makes me feel so naive. But she is right.
I'm feeling a bit off. Probably sad and resentful and I'd really rather not be. But I can't help thinking about when I found out I was sick and thought I could go somewhere I could get that support and that attention I know I was entitled to. And not just that day, but for the remainder. It was the single most important day of my life and I hate feeling I squandered it. Is that wrong and unfair of me, heaping this huge responsibility onto someone who really didn't need it, couldn't handle it, or possibly never wanted it? What is it that I thought would come from it? I'm not sure, but I suppose as I think about it more and more, and little bits of anger grow, had I known how it's all worked out in two-plus years, I wouldn't have bothered.
It's just past three in the morning and I'm thinking about this now.
Have I said? I hate the twenty-first century.
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