Editorial

For the past couple of years, I have been a member of the Community Advisory Board at the LGBT Community Health Center in Chelsea. It's where I go for all my health care, including periodic counseling and all of my dental work. My work on the CAB, aside from being rewarding on it's own, is my way of paying back all of the wonderful care I have received over the years, before and after I was diagnosed as HIV+.

Last year during the annual elections that are held for the meeting chairman position ... I didn't win. I did however become first runner up (Miss Congeniality was not something I aspire to) and was elected to be the Vice-Chair. Coming in 2nd in a group of 8, third if you take in to account the previous chair was out of the running, only diminishes an already dubious honor slightly.

One of the projects I ended up spearheading last year was a patient newsletter. Previously, it was published in a very basic, two-page, black & white copy machine version. It had a very grassroots, low-budget look to it, and I thought we could do better. I originally started the project with another CAB member who had a lot of experience in graphic design, as my abilities are limited and self-taught. Halfway in to the first issue, my co-editor quit, leaving me to finish the first issue and take charge of the project.

Right after Gay Pride Weekend (end of June) I submitted the final draft for our 2nd (summer) issue. It was published late in August, distributed throughout the Health Center and published to their web site. In addition to supplying all the photos for this issue, I also wrote an editorial of sorts, to coincide with Gay Pride Weekend.

Lately I've been doing a lot of reading about the stigma that is still attached to HIV. Many gay men, after being diagnosed, are further traumatized when they experience being ostracized from their own community. As I say in the article, being HIV+, even in the gay "community", is the dirty little secret everyone would prefer just go away. Many HIV+ gay men feel damaged and alone.

I am attempting, through my work at the LGBT Community Health Center, and my contact with various HIV+ support groups, to address and hopefully eradicate that stigma. Here's the article reprinted:

This issue of Patient 2 Patient is

being assembled during what has

become known as Gay Pride

Month, June of 2010. Amid all the

parties and benefits, parades and

celebrations that take place in all 5

boroughs throughout this time of

year, there are many issues that

are relevant to the LGBT

community that have taken center

stage. High profile issues like gay

marriage, Don’t Ask Don’t Tell and

the passage of a transgender

inclusive Employment Non-

Discrimination Act have all

received the lion’s share of the

media coverage of late.

It seems to some within the HIV+

LGBT community that amidst this

cacophony of protests, marches and

demonstrations, the voices of HIV+

Americans are no longer being heard. To

some, it seems as if we are being actively

shut out.

Consider these sobering statistics:

According to the latest findings by the

CDC 4,762 New York City residents

contracted HIV in 2006. That’s three

times the national rate and an estimated

72 new infections for every 100,000

people.

Nearly two-thirds of the city’s new

infections occurred in people 30 to 50

years old. Minority groups were

hardest hit among young people. For

example, of new HIV infections

among men under age 30 who have

sex with men, 77 percent were in

Black or Hispanic men.

In another study conducted by the

CDC, over 50% of young Black gay or

bi Southern men that were diagnosed

HIV+ had engaged in high risk

sexual behavior, but still had not

thought they would ever become

infected with the virus.

HIV+ men feel that we have become

the dirty little secret in the LGBT

community. The equivalent of the

crazy relative with a room in the attic

that only gets trotted out during big

celebrations. If we don’t sit quietly in

the corner and enjoy the plate of

sponge cake already provided, eyes

get rolled then its back in the attic we

go.

Gay men who seemingly lack

education or compassion think

nothing of unleashing bigotry, stigma

and shame upon newly infected HIV+

men who have sex with men. After

all, HIV is “preventable” and those

engaging in risky behavior should

simply “know better.” Nowhere is this

more glaringly evident than in the

halls of our own LGBT Community

Center. Where you won’t find a single

sign, poster or notification welcoming

HIV+ gay men and women nor will

you see any large scale permanent

signage advocating or directing

anyone to HIV testing and treatment.

Worldwide there are approximately 33

million people living with HIV and over

25 million people have died.

Why then has HIV become a seemingly

back-burner issue? That’s if it’s talked

about at all. Certainly this country’s

legendary short attention span and a

certain amount of “grief fatigue”

explain some of it. As does the

supposition that HIV is thought of as

more of a chronic disease, survivable

and treatable, and not the frightening

and alarming death sentence it once

was. Happily that’s true, assuming you

get a diagnosis and treatment in time.

Not everyone does. And not everyone

responds well to the available

medications.

The fact remains that unlike other

chronic and treatable diseases, like

diabetes or depression, HIV still carries

a stigma that sets its patients apart.

Often resulting in HIV+ men feeling

shunned or ignored by their uninfected

(or undiagnosed) gay brothers. Many

So as Gay Pride week is about to begin

and Gay Pride Month draws to a close,

as the celebrations wind down and the

streets are swept clean, the next time

you write a check or turnout en masse

for the latest cause celebre, consider

this:

HIV doesn’t know or care who you are.

It doesn’t worry about how much money

you have in the bank or how much

education you enjoyed. HIV doesn’t

know who you’re sleeping with, and

doesn’t care if it’s one person or a

hundred. HIV doesn’t know if you’re gay

or straight. HIV can’t tell if you are a

homeless teen or a dancer in the New

York City Ballet. HIV doesn’t think of

itself as a punishment. HIV doesn’t

worry about causing you

embarrassment or shame. In short, HIV

doesn’t judge or discriminate.

So why should you?

You can check out the entire (PDF) newsletter by following this link.

I Can See Clearly Now

I'm thinking I should probably update you as to the recovery from my eye surgery. As you undoubtedly don't recall, when last we spoke of it, I had been about 2 or 3 weeks into my recovery from PRK laser surgery. My vision was obviously so much improved from where it started. I don't know what my exact prescription was in corrective terms, but "blind as a bat" works fairly well. I rarely even ventured to the bathroom from bed without putting a pair of glasses on.

At 3 weeks, I wasn't using glasses for anything at all. Day to day, I could see people, buildings, cars, billboards. I was missing all of the smaller detail. The smaller type on street signs was still a blur. Ditto for newspapers except in bright light. Even then, my vision would be in and out, blurring unexpectedly halfway through an article. Also, my distance vision was definitely lagging behind in the recovery. I saw little or no improvement after 3 weeks, and a subsequent visit to the surgeon confirmed this. In layman's terms, I couldn't see shit far away.

I tried not to get discouraged. I read and re-read all the on-line articles and blogs that said PRK recovery takes time. I gave myself an imaginary line in the sand of 6 weeks. If I didn't see some noticeable improvement by then, this would start to well and truly suck, and I began rehearsing how forceful I would be in complaining to the surgeon.

Sometime between week 5 and 6, my reading vision seemed to stabilize and improve. I was reading my computer screen without leaning forward in my chair, and I could snatch up a newspaper right on the street and start reading just like ... well ... I could see. I couldn't tell if my distance vision had improved as well. It seemed so, but I was wondering if I had just grown accustomed to not seeing very well far away.

My last visit to the surgeon was at 9 weeks. The vision in my reading eye was clocked at 20/25. The vision in my other (distance) eye was 20/40. NY State considers 20/40 in both eyes to be sufficient for driving without corrective lenses. So technically (and practically) I can see.

At this point, my vision seems at least comparable to what it was, with contacts, before the procedure. I could make a case that in some ways, it's better. My reading vision seems to be better than when I started. Most importantly, I can take photos. I never realized how much I tend to study a shot before I actually take a picture. Not having good distance vision prevented me from getting a feel for what I was shooting. It was like running on one gimpy leg. Do-able, but not fun.

My eyes are still very dry in the morning. But I've pretty much eliminated using the lubricating drops during the day. I'm still on the eye drop steroids they put me on after the surgery, and I will continue as scheduled through the end of November. My vision will blur unexpectedly, usually when I'm focusing on something detailed, but it often comes back in a few seconds. Over all, as it stands now (and I told the surgeon this on my last visit), I am completely satisfied with the surgery, the expense and the outcome. If I continue to get more improvement (and that's entirely possible according to my reading) it will just be gravy on the meatloaf.

If the weather holds this week for one more day, tomorrow I will go to the beach for the second time this year. I'll be taking only a pair of sunglasses, purely to leer at the hot boys in private.

And We're Back

A month without blogging. It wasn't my intent. I admit, I had been getting tired of keeping up on the blog. Plus, I discovered the magic that is Facebook and that seemed to satisfy one of the main reasons that I kept up blogging, long after I felt as if my original reasons for creating and maintaining From The Ashes had run it's course. I said that I wanted to give people a glimpse in to the life of a middle aged HIV+ person, and I did that. And while I still have things to say and work that I'm doing related not only to my own life as an HIV+ individual, the nuts and bolts, as it were, of my illness have pretty much been worked out. I'm in a maintenance mode that finds me pretty damn healthy, and no reason to think that will change anytime soon.

I also obviously (in retrospect) had a lot of other "issues" that needed working out too. Many of them, as it turns out, were linked in some way to alcoholism and all of the emotional and psychological damage that causes. But I've been sober for 3 1/2 years now and a lot of those issues have been resolved as well. No more panic attacks. No more General Anxiety Disorder. No more roommate troubles. No more surrounding myself with addicts and enablers. I finally feel balanced, relatively sane and at peace. In other words, I feel kind of boring.

And a boring sober middle-aged gay man doesn't necessarily have all that much to write about. At least, that's how I've been feeling. I didn't write 'cause I was happy. Which I guess means that the last 7 years could in fact be viewed as one long primal scream. In a way, I guess it was. I was lost. I was alone. I was confused. I was scared. And I poured all of it out on the page. Eventually I also poured it out to a couple of competent therapists and several hundred AA members in the last several years of meetings. Slowly, I got better. Things settled down. And I felt like I had less and less to say.

The last year maybe, certainly the last few months, I felt like I was struggling for posts, and struggling to find content. And I certainly thought about shutting From The Ashes down. I suppose I still might. But I'm not ready to walk away from it yet. And I think that this blog still has a purpose. For me, it's a creative outlet. and one that I need. I do love to write. It's only the struggle I couldn't identify that had turned it in to a chore instead of a pleasure.

So I took some time off (that lasted longer than I intended) and let things percolate for a while. I thought about what I wanted, what I had to say, and where I wanted this blog to go. I have no idea if that's what will actually happen. That's the thing about creating something from nothing - it frequently becomes something else. To me, the end of the journey is not what's important, it's the road you take along the way.

I definitely plan on writing some longer postings. Stories from my life, my childhood, as well as a chronicle of the 20+ years I've spent finding my way in a city that allows you to constantly, repeatedly reinvent yourself. Ultimately, that's what From The Ashes has always been about. I have loved the story of the phoenix from the moment I first heard it.

Rebirth. A new life rising from the ashes of the old. Renewal. Redemption. A fresh start. It's where we are today.

In the future, we'll see where it takes us. "A journey of a thousand miles begins with a single step."

Let's go.

I Swear I Still Love You

My Verizon DSL line is down and whatever is wrong is beyond my ability to figure out. It's also beyond the dubious skills of the Verizon tech support by phone. So I await a repairman for tomorrow morning. I hold out no expectations that they will be able to fix the problem I've been having for over two years.

Annie Lennox Explains It All

Annie has been spotted and photographed many times sporting her "HIV POSITIVE" T-Shirt. At the opening day of the 2010 AIDS conference in Vienna, Ms. Lennox gives the straight poop on why and what the shirt actually means. I was cleaning out my closet the other day, and watching this video made me run out to the hallway and rifle through the bag of clothes I was preparing to throw away. In it was a baseball jersey I had purchased a few years ago. It had a parody of the old Intel logo on the front, only my shirt was "HIV Inside". I was thinking that since I frequently sport my own "POSITIVE" T-Shirt, that perhaps the baseball jersey was overkill. And a bit dated. But I decided that until the stigma attached to being HIV+ in this country is talked about openly and dealt with, I should probably get a few more miles out of that jersey. It's what Annie would do.

Be Right With You ...

On The Road Again

Actually, I just returned. Was visiting family and friends back in Buffalo and the surrounding Indian-inspired named towns. I have plenty of stories to blog about and will get to it ASAP, but for now the fridge is empty and I need to hug and kiss my dog.

Yes Please ...

HIV+ Canadian Charged With Attempted Murder

"OTTAWA — A 29-year-old man accused of failing to disclose his HIV-positive status to sexual partners has had his charges upgraded to include attempted murder.

The four counts of attempted murder were laid against Steven Paul Boone in relation to four of his alleged victims. Boone has also been charged with four counts of administering a noxious substance — HIV — to the four men.

It now brings the total number of charges against Boone, who is still facing 14 charges of aggravated sexual assault as well as multiple counts of sexual assault and breach of probation, to 31. Boone also faces seven charges in Waterloo on similar accusations.

Boone was arrested in early May after an 18-year-old Ottawa man contracted HIV after the two had unprotected sex several times in January. A bail hearing for Boone, which began Tuesday, is expected to continue next week. The evidence presented during that hearing is subject to a publication ban."

ADAP Funding In Jeopardy, Waiting List Soars

"The weak economy is crippling the government program that provides life-sustaining antiretroviral drugs to people with H.I.V. or AIDS who cannot afford them. Nearly 1,800 have been relegated to rapidly expanding waiting lists that less than three years ago had dwindled to zero.

Eleven states have closed enrollment in the federal program, most recently Florida>, which has the nation’s third-largest population of people with H.I.V. Three other states have narrowed eligibility, and two of them — Arkansas and Utah — have dropped scores of people from the program.

Last week, because of swelling numbers here in South Florida, the nationwide waiting list surged past record levels set in 2004, to 1,781 people, according to the National Alliance of State and Territorial AIDS Directors. The growth is expected to continue when Georgia starts deferring enrollment in its drug assistance program on July 1. Illinois may soon follow, and New Jersey plans to cut eligibility on Aug. 1, removing 600 of the 7,700 people on its rolls.

Louisiana capped enrollment on June 1 but decided against keeping a waiting list. “It implies you’re actually waiting on something,” said DeAnn Gruber, the interim director of the state’s H.I.V./AIDS program. “We don’t want to give anyone false hope.”

Ten states’ programs have stopped covering drugs that do not directly combat H.I.V. or opportunistic infections. Unless money is found by Aug. 1, Florida plans to pare 53 of 101 medications from its formulary, including those for conditions that are often related to H.I.V., like diabetes, high blood pressure and anxiety." via The New York Times

Here's a sampling of 138 comments posted about this article:

Point blank, I don't care what a person did: no one deserves a death sentence because they had unsafe sex, too much sex, gay sex, anal sex, adulterous sex, sex on the down low, etc. etc. etc. And refusing to give AIDS medications is a death sentence, make no mistake about it.

and

As a gay man that came out of the closet at 18 years old in 1993, I was terrified of HIV and vowed to protect myself from contracting it. Back then, gay men in particular were dropping like flies! For guys my age (straight ones too), there was never a time where sex was tantamount to freedom and liberation with zero consequences like in the 1970s. Sex could KILL you. We had that message drummed into our heads ad infinitum. However, in the last decade or so, the safe sex massages have dissipated, and people have resumed their old ways. Society can't protect people from catching an illness that no longer scares them. Why should society promise to fund the health care of people who took risks, knowing the consequences, but preferred living dangerously? And the one thing you almost never hear HIV+ people own up to is that possibility that he/she might have passed it on to someone else. HIV is entirely preventable, with very few exceptions. The only thing that can stop its death march is each individual protecting himself or herself. All the funding in the world is, for the most part, misspent.

and

Even if HIV is transmitted because of behavioral choices... so what? "Behavioral choices" are bad decisions, moments of weakness, made in ignorance, made drunkenly (and it's not exactly illegal to drink), made when people are lied to about a partner's status, made irrationally because of addiction, made from places of desperation.

It doesn't matter to me why or when a bad decision was made. We all make them at one time or another. Why do people's whose decisions lead to HIV deserve to die, when the rest of us get to scrape by thinking "God, I'll never do *that* again..."? Providing health care is the empathetic, kind thing go do.

Additionally, people on medication are less likely to transmit the virus (fewer cases in the future!) and are less likely to be hospitalized and require *even more* expensive treatment.

We're talking about something where the kind response is also the cheaper response and a way to prevent future problems. I'm not seeing a downside on my tax money going to help here.

Full disclosure: ADAP is the program that has been keeping yours truly alive and well these past 7 years. Just so you know.