AIDS Walk New York.

It's AIDS Walk time again. This weekend about 40,000 New Yorkers will lace up their shoes and make the walk through Central Park in support of people living with HIV and AIDS. To support research and prevention efforts, and efforts to provide services to those living in the five boroughs who are infected with or affected by HIV. Click here to join our team, or to donate to the cause. Step Up. Stop AIDS.

Act Up.

I daily get a million or so e-mails from political organizations and organizers. So a few important ones for you today...

First, from my friend, Aydrea in L.A....I had a conversation with a client of mine last week about things he did in his life as an activist working with the Black Panthers and the Weatherman (those words just ruined my hopes of ever being president). We discussed the fact that he had never thought he would be sitting there, sharing so much information, in such a vulnerable spot, with a young, White woman. I, after a while, tried to reassure him by letting him know that I have read about his fight in the 60s and am dismayed that any of it ever had to occur and that it continues to occur, and that he underwent such trauma because of the color of his skin. And it made me think of this letter.

Second, from my friend Paul in San Francisco...Vote No on 8! Despite the fact that the California Supreme Court declared a ban on same-sex marriage unconstitutional last Spring, there is now a referendum up for vote in November to change the California constitution to make marriage exclusive to heterosexual couples. I have a difficult time really explaining why this is so important to me. But after my dear friend's wedding this summer, it became known to me how important it is that he and is partner being allowed to be and stay married. State by state things are changing...just last week, Connecticut changed their policies. New York, due to the conservative pockets outside of New York City, will not change anytime soon, but our governor enacted a policy that recognizes marriages made legal in any state...a step in the right direction. So, it's important that California not go back. Most of you don't live in California, so you can't vote on it, but you can read about it and donate money to the fight.

And then a last one, received in a e-mail today. There is a campaign to develop a National AIDS Strategy. This is necessary for the U.S. government to appropriately address the problem of AIDS as it effects people in the U.S. Read about it here, and take the opportunity to lend your support.

I, too, sing America.

This year, I decided that I was not going to celebrate the 4th of July. Someone had to work at my office today, so I decided it should be me, the anti-patriot. And my across-the-hall neighbor and I agreed it was the best way to express discontent. So I worked today. And I had no intention of doing anything particularly American (eating apple pie, singing Yankee Doodle Dandy, preempting something imaginary with a war). So I worked, went to visit my homeless friend, and went home. But as the day wore on, it became for me a more serious matter.

You see...the United States of America and I have lately not been getting along so well. My job often requires me to be the bearer of bad news, or to at least be in the room when said bad news is delivered. And that bad news generally comes from, or is due in part to the actions of, the US government. In the past two weeks I have told someone that though they do not make enough money to eat, the US government believes that they get too much money to be given any additional help; I have listened to people speak of losing dozens of friends to AIDS in the 1990s, simply because it wasn't thought important enough for the president to focus on; and have had to let a man know that the US Immigration service believes that despite the fact that he's been sleeping in a park next to the BQE for the last year, he really should have $400 to pay for the replacement Green Card that is required for him to have any hope of getting off the streets.

I do understand the irony of me writing all of my anti-American spiel on the Internet, when if it weren't for the that whole freedom of speech business I would be arrested for such things. But, for the love of all that is good and holy, I am tired. I am so tired of hearing of the supposed good that we're doing for people, when the people who need the most help are allowed to languish. I am tired of listening to the freedoms that we are fighting to give people in the Middle East when I know and see the blatant racism exercised by our government when an immigrant from an Arab country seeks assistance. I am over seeing the supposed freedoms of the market economy destroy scientific integrity in keeping life-saving medication from eradicating diseases that should have never been allowed to flourish so. I am simply tired.

I have spent the last few weeks writing pleading letters in my head to Barack Obama asking what he will do to help with each new issue I run into. I have written, again in my head, countless blog posts calling these things into question. And I have written one very angry and certainly awful poem. I don't know if I am right about these things, or if I am (as one of my co-workers called one of our co-workers) just some white yuppie kid with an education who wants to help for a moment before moving on to something else. But my heart is somewhat broken. And I don't know how to fix it, because I see no triumphant moment in sight. I try to keep hope, because I have to as it is tattooed as a command on my left wrist. But I'm not sure how much more my metaphorical heart can handle.

Between the Lines.

In Social Work school, we talk alot about boundaries. It's a very difficult thing to figure out. Social work (for me anyway) is like 1 part psychology, 1 part systems knowledge, 4 parts activism, and like 57 parts empathic heart. And each work setting comes with a different set of standards, and thus a different set of rules. I'm very strident about my boundaries, because I feel that it is the only way to do the work that I do. But every now and then, there is someone who steps through.

I've decided that work boundaries are kind of like a dotted line. Chunks of solid space with gaps in between (kind of like a border fence, or the ozone layer). It goes along for quite some time, impervious and stoic. But then all of a sudden there is a huge unfortified space. For me this comes in the form of very young people newly diagnosed with HIV; in patients who remind me of people I love; in people who I feel have been left behind too many times; in people who are essentially being told that in the eyes of people who matter, they do not exist. I find myself worrying all the time about where they might be, or how it is that we are going to overcome these obstacles, or how it is that I am going to keep them from slipping away again. I battle in my head with how far I am willing to go before I put up a wall and say "I'm sorry. This is as far as my vocation allows me to go. Bless you on your journey." And then I battle in my head to not feel guilty for stopping short. These are the times when I am thankful that I have a roommate. Otherwise, I might have bunkbeds full of homeless people sleeping in my living room. And Marcus just would not like that.

So it's that time again. It's AIDS Walk time. And again this year, I'm walking with my amazing friends at Christ's Church for Brooklyn.

When I set out to be a social worker, it was because I wanted to work with people living with AIDS. It took me a long time to pin down the reason why I was moved to do this. But now, some 7 years later (if you count the pre-New York volunteering days), it's clear to me that it is the scale and scope of this thing. AIDS never should've happened. If the first people affected by AIDS had been upper or middle class, heterosexual, white Americans, it never would've been allowed to get so far before a movement was made to stop it. If ground zero hadn't been a place already so abused by colonialism and greed. If in the United States, it had decimated populations other than those already marginalized and voiceless.

So now what? Now, it is time to move. Now, it is time for justice, and for everyone to be taken care of as they should've been long ago. It is time for us to stand up. To speak out. And on May 18th, to come together and walk. Please join us.

Act Up.

A few months ago, there was an article in the Times about rising HIV infection rates among young men in NYC. It is a very disturbing statistical marvel.

"Over a five-year period, the number of new H.I.V. diagnoses in men under the age of 30 who have sex with other men increased by 33 percent, to 499 in 2006 from 374 in 2001. During the same period, the infection rate for men over 30 decreased by 22 percent."

There was an article in Forbes today citing the same statistics, but on a national level. This is just inexplicable and so, so disturbing. I am occupationally, and by my very nature, not a finger pointer, but in most cases there is no reason for these increases to be the case. When you read the literature, the increases in infection rates among young men who have sex with men are explained by the fact that HIV is now seen by many as a treatable chronic disease, and that many people believe there is a cure, or at least one on the horizon. Therefore, it is believed that there is no need for vigilance.

For some reason, as of late, I find myself swathed in plays related to the early days of the AIDS epidemic. First it was the watching, and rewatching, of Angels in America, which is beautiful and amazing, and I believe one of the great masterpieces of modern theatre (despite the fact that it is like days long). And then in an effort to buy this play at a discounted rate, I came upon The Normal Heart, another brilliant play written at the beginnings of the epidemic about the activism and utter desperation of this time.

Tomorrow is World AIDS Day. It is a time when communities take pause to remember those they have lost to the epidemic, and renew our dedication to stopping this. Nothing frightens me more than thinking about what this disease can do to someone, about the prospect of this happening to someone I love. But really when this happens to one of us, it happens to all of us.

Site for Rent.

This weekend my college roommate, Aydrea, was in town, and through an L.A. connection got tickets (very good tickets) to see Rent for herself and me and Nathan. I love this show. It is maybe my favorite thing in the whole wide world. It was the first musical I ever liked enough to purchase it, and sing it in my car over, and over, and over again. It is possibly the only movie I have ever had to see on opening night (and subsequently the only DVD I've ever bought the day it came out). I even considered auditioning for it (for about 5 seconds) when they had open auditions right after I moved to NYC. Needless to say, I was crazy excited to see it again. And it surpassed even my greatest expectations.

I had seen Rent three times before this, twice when it toured through Austin and once since having come to New York, and I was really overjoyed each time. But this time was something different. Aydrea knows the family of Jonathan Larson, who wrote Rent. Mr. Larson died from a heart ailment one day before the show was to open Off-Broadway, but his family has remained close to the show and to its cast each time, as it is obvious this show has so much of him in it. Since the beginning of August, two of the original leads, Anthony Rapp and Adam Pascal, have been reprising their roles, which is why it was such a tremendous deal for us to get tickets at this point. It was unlike anything I have ever seen. It is so clear from watching them that their love for this work runs deeper than the beauty of the music and words. They knew the man who created it, watched it unfold, mourned him through their work. It was amazing to see something I know backward and forward become something new, evolve before me with greater meaning to I had ever known. It was an unbelievable, unforgettable event.

And as if that was not enough, due to Aydrea's friendship with his family, we were able meet the stage manager of the show who proceeded to introduce us to the entire cast. They were all so kind and appeared to be so humbled by this show. Anthony Rapp and Adam Pascal stopped and said hello and spoke to us for a second but had to get away quickly to escape the throngs of screaming teenage girls who know them from the movie. But as the rest of the cast filed out each of them stopped and spoke to us, about the experience of doing the show, about the joys of their character, about how it's such an awesome experience to be doing this show at this time in its history. Tamyra Gray (who was robbed on Season 1 of American Idol) played Mimi and was truly astounding. A young man named Justin Johnston played Angel like I had never seen him played, and it turned out that I had seen him play Roger in the touring company when I lived in Austin. And then after everyone had left, the stage manager, John Vivian, took us on a tour of the stage. It will sound silly to anyone who has never been this in love with a play, or movie, or musical, but we got to stand on the marks the actors stand on when they sing Seasons of Love. We walked up Mimi's staircase, and sat on the platform where they sing Life Support. Truly unforgettable.

On Illness...

At the beginning of May, as a means to combat my vocational frustration, I began facilitating a support group for people living with HIV and AIDS at the GMHC. It has a been a somewhat daunting but worthwhile endeavor. Each week I meet with between 2 and 10 people, and we talk about really anything you can imagine. I am sometimes shocked (i.e. on the days we talk about sex and drugs), sometimes frustrated (i.e. on the days we talk about insurance and medications), sometimes saddened (i.e. on the days we actually talk about living with AIDS). The past few weeks we have talked alot about the effect being diagnosed with HIV has on your life. Most every person in my group can tell you the day and time of their diagnosis. They can tell you what they wore that day, what they ate before their doctor's appointment, what the weather was like, who they talked to after they received the news. About the moment when they changed from person to patient. They talk about how despite the fact they might have no symptoms, they live each day knowing that they are sick, that they have a terminal illness.

I recently had a man in my group who was very newly diagnosed with HIV. When asked how he was doing with it, he answered that he felt like he had overcome alot in his life, and that this was just one more thing that he would conquer. He had beat a brain tumor and cancer, watched a parent die of a terrible disease. This would not be his greatest challenge. The others in the group were encouraging, but anxious, let him know about many of the trials he will face. After the group, I sat and talked with him one on one. He amazed me. He is armed for battle. But he is also nervous, and anxious, and guilt-ridden. And this is sadly how it goes.

There is something to be said for being prepared for what may come. This is why we have insurance and savings accounts. But there also needs to be space to live in the moment. To appreciate time with friends when you do not have to worry about what to do next. To feel great without worrying about when this will go away, and what will come after it. To live in the now. It is a difficult task though. You have to learn to change the things you say in your head. I feel terrible must be followed by but only for a moment. You must strive to remember what how you felt before your diagnosis, because oftentimes people take better care of themselves, and are in better health in the long run, because of their illnesses. Mind over matter is an important tenet of survival.

And this is where I come in. I am there to arm you for battle. I am there to fill your head with as much knowledge as you can handle. I am there to be your guide, and your advocate. To keep you active in the fight. I leave a meeting like the one with this gentleman somewhat overwhelmed. I left that meeting in dire need of either a hug or a cigarette. "What if I told him too much?" "What if that does not work out?" "What if he is already too far gone?" But meetings like these are why I do this work. I have been sick alot, with many things on the spectrum from life-threatening to annoying, so I feel I have a good amount of perspective on being ill. For alot of reasons, with my most serious illness, I felt like I had to go through much of it alone. When I was younger, I spent alot of time being angry about the cards I had been dealt with regard to my health, and it caused me alot sadness because I had no way to really understand what it was that could come of the trauma I had suffered. I still have days when I feel like that. But then there are days when I know very well. People need someone to help them understand paperwork, to know when to fight back, to walk them through what their days may look like, to be unafraid of the illness they are carrying, to listen indefinitely to their daily struggles, to be there for them when no one else can.

I don't talk about my job alot, because it is a party killer. I say "Oh, I'm a social worker," and the conversation can no longer be frivolous. It has to be about what we doing for a cause, and how difficult is it, and many times how the importance of the other person's job cannot compare to what I do. But know, that I could not do any of your jobs either. I am bad with numbers, overwhelmed by bureaucracy and philosophy. I cannot do chemistry to save my life. I've taken four physics classes and still cannot do vectors. I don't wear the proper footwear for corporate America. I am not armed for that kind of battle.

S.E.X.

I was raised in the South, as a member of the Church of Christ, and thus I grew up with a very particular, and very conservative, view point on sex. But then I went away to college, became somewhat involved in the gay community, and began working with HIV patients, which lends itself to a very particular, and somewhat liberal, view point on sex. I remember very well how terribly weird it was to sit down at my desk, at my first real job and find a huge basket of condoms sitting next to me; my disappointment the day I learned that abstinence education does not work; my overwhelming embarrassment the first time one of my patients told me in detail about the sex she was having with her neighbor. But like so many issues, I believe that having been raised on one side and having come to live on the other has greatly increased the depth of my understanding of this issue.

There was an article in the New York Times this week about how abstinence-only education may be on its way out. This is sad for the call of many religious groups, but I can tell you, in capital letters, that IT DOES NOT WORK. Teaching children nothing about sex, other than the fact that they shouldn't have it until some point far in the future when they may be married, leads them to (a) have sex despite the fact that they have no education on how to protect themselves from disease and unwanted pregnancy; and (b) to feel such a sense of shame about anything sexual that it scars even their church-sanctioned relationships. And this is really just the case for a very small portion of Americans. In other cultures, things like gender roles, the power structure of familes, and educational opportunities influence people's thinking about sex and relationships, and their effects of the future. In many countries, these elements are in part responsible for the AIDS pandemic.

For much of the last decade, most of the funding the United Stated provides for AIDS prevention has gone to abstinence-only programs. For a time, the current administration forced the CDC to removed information from its Web site that sited the effectiveness of condoms in preventing transmission of AIDS and other STIs. Many states have started cutting funding for such programs, but the federal government continues to spend money on something that has proven ineffective and impractical time and again. The issue has now become another part of political debate in the upcoming presidential elections. And many researchers have found abstinence education to be the wrong direction to move in the future, and have stated that this is dangerous and "morally problematic", but it has persisted for many years against the better judgment of experts. Maybe now is the time to put a stop to it.

A Beautiful Day.

Yesterday, CCfB participated in the 22nd Annual AIDS Walk New York. The weather was beautiful despite the ominous weather reports, and we had a wonderful time spending the day together (which is always the case). We were 15 of the over 45,000 people walking that day. And we (with the other 45,000 or so people) raised $6,857,527. This is one of my favorite days every year, as it helps me remember why it is that I do the work that I do. But it was even more special yesterday, to be able to do this with some of my favorite people by my side.

If you've missed the donation boat, don't worry. It's never too late. Click here to donate. Thank you to those who already have.

AIDS Walk New York 2007

On Sunday, May 20th CCfB will partcipate in the 22nd Annual AIDS Walk in New York City. This walk raises money to provide people living with HIV and AIDS in New York City with services such as medical care, counseling, housing, and legal aide. It also provides money for research on treatment, a vaccine, and ultimately, hopefully, a cure.

This is my 4th year to do the AIDS Walk, and I am so excited to do this with CCfB. One of the most difficult things facing the fight against AIDS is the stigma attached to it. This stigma has brought many churches to close their doors to this epidemic, and on those suffering from this disease who live in their midst. It is amazing to be a part of this community of faith and service, who wants so much to help those outside its walls.

I walk because as I have worked with people living with HIV and AIDS for the past 6 years, I have seen what this disease does to individuals, to families, to communities. I walk because I will not see anyone else left to deal with this illness alone. I walk because I hope to never know the loss of a friend this way. I walk because I hope to one day know the joy of not being needed here.

If you'd like to walk with us, you can still sign up with our team. If you'd like to donate to the cause, click here.

(Picture courtesy of the Desert AIDS Project)

Miraculous.

I have little faith in modern medicine, and the sum of my life experience and my career has brought me to a point where it is next to impossible for me to believe in anything miraculous. If ever anyone tells me that God has spoken to them, I am to immediately hospitalize them. Not much room for miracles or divine intervention there. I had a patient once who was dying of AIDS and struggling with a decades old heroin addiction, when one day he stopped using, and started gaining weight. The color came back into his face and the light came back into his eyes. I asked him what had happened and he told me this incredible story about how God spoke to him, and told him he had a greater purpose for him, and that he would live many more years. While I sat listening to this story, a million thoughts were running through my head. "How incredible!" and "How insane!" were the ones that reigned. I long for faith such as this.

This was what came to mind when I read this story today. It seems that the president of Gambia, a country where over 1% of the population is infected with HIV, has been endowed by God with the power to cure HIV every Thursday, and asthma on Friday and Saturdays. He plans to cure everyone, but can only help 10 people each Thursday, so they must be patient. And he has instructed anyone wanting to be healed in the future to stop taking their HIV medications, as they don't need anymore. This is absolutely horrifying.

But then again, what if it's true? Who am I to say that this is impossible, that this man is either very corrupt or suffering from some serious delusions? That God does not work that way? Is it possible that modern medicine is getting in the way of the will and work of God? It's pretty distressing, isn't it?

The Five Fs.

I sometimes get overwhelmed. I can only describe this feeling as being bitch-slapped by Life (that might be my first blog curse word). I get this way every once in a while, just simply overwhelmed by the weight of the world, both my own and that outside me. My health, my job, my friends, my family, war, politics, poverty, loneliness, confusion, separation, illness, frustration. I find it all too impossible to sort through. I hit one of these points this week. I do it to myself. Talking too much, listening too much, reading too much, thinking too much. I called my best friend, who I had seen less than an hour before, and sat with him for the next hour and a half, many moments of that time spent in silence, as he tried to help me come up with an answer. What to do to make it better. We talked about keeping busy, but not by enveloping yourself in the problems, as I am want to do. About finding a way to change the things we actually have control over. About letting go. About rest. About prayer, which I am skeptical of until I am desperate. About humor. About inspiration. About effortless joy. About What Not to Wear.

I had a professor in grad school named Alan Levine. He was basically an expert on support groups and on grief, loss and bereavement. He was by far my favorite professor and one of the only ones who I didn't find pretentious and full of crap. From what I remember, he was the only professor I had who acknowledged the weight and importance of our work, and how this may affect our perspective and our lives. I had him for classes my last two semesters of grad school, and on the last day of the second class I took with him, he gave us some good advice about living and working and maintaining a certain level of sanity. In life you need the 5 Fs--Good Food, Good Friends, Good Family, Good Fun and Good...well, I've already sworn once here today, so I can't say it, but it's there. I think this is true, and I have this...well most of it. Generally, the good food, fun and friends are combined, and this is the greatest blessing in my life. I have an amazing set of friends, with whom I can laugh and cry, eat things with gluten, lament the stupidity of my days, extol the wonder that is Justin Timberlake, confess and be accepted for my secret love of show tunes, be given the family that I've always longed for. And that just about covers it all.

Innovation and Inaction.

I was reading an article in the Times yesterday about a new program being put into place in Africa by the Clinton Foundation. This program will provide millions of children with medications to treat HIV. It was said in the article that there are over 2.3 million children in the world with HIV, and 2 million of those are in Africa. Most of these children, having contracted the virus at birth, will not see the age of 5.

In order to provide this life saving medication, the Clinton Foundation had to broker a deal with pharmaceutical companies in India, because their patent laws are lax and thus they can make generic a drug that was before only available in the much more expensive brand name form. This has become the norm in programs to provide HIV medications to people in developing countries, and while it is an amazing gift to these people, it is one of the many things in the world I cannot wrap my mind around. Why is it that millions of lives are not worth the millions of dollars pharmaceutical companies stand make off these medications? Why is it that we in the United States have had these medications for years before it even becomes a topic of discussion to send them to people abroad? In NYC, the mother-to-child transmission rate of HIV is less than 1% because there was a study of medication to prevent such infections about 10 years ago, and they found the medication so effective that they stopped the study and started giving it to every pregnant woman who was HIV positive. And yet 700,000 children will be infected with this terrible disease this year alone, in countries with fewer resouces, when it is well known what could stop this.

In the article, they speak of the fact that Thailand has chosen to break the patents of several drug companies, despite its own strict patent laws. "David Wilson, an official with Doctors Without Borders in Thailand, lauded the move. 'Thailand is demonstrating,' he said in an e-mailed statement, 'that the lives of patients have to come before the patents of drug companies.'" This, the last sentence of the article, made it very clear to me how much trouble the world is in, that something so seemingly simple has become a revolutionary act.

Today...

Today, 25 years ago, the United States government first recognized the disease that would be known as AIDS. It would be 5 more years and hundreds of lives before anyone in the United States government would take any action to slow this epidemic. The president stated that there was no need to panic because this disease was only affecting gay men and IV drug users, and there was no need for the rest of us to worry. GMHC had begun taking care of people living with AIDS, which now included people both heterosexual and homosexual, people with hemophilia and many children. And until the mid-1990s, most of these people died. Precious, precious time was lost because this disease at first affected only people who didn't matter.

I sat in my office this morning and read an article in the New York Times (and this editorial, and this one too) marking this anniversary. And I spent the entire time trying so hard not to cry. When I graduated from college, I was bored. I am someone who needs to be busy all the time. Being still does not come easy for me. So I started reading. I read a book called Sometimes My Heart Grows Numb about people who were caregivers for people with HIV in the early parts of the epidemic and it spoke to me. I felt that I had to do something. So I started volunteering with AIDS Services of Austin, as the intake person for their dental clinic. And it wholy changed my life. The first day I worked there I did intake for a young man who I had gone to school with. It was terrifying. To know the tole the AIDS epidemic took on the generation before, and imagine such a thing happening to my generation is...well, unimaginable. I look at my friends and cannot even conceive such a thing. Losing so many in such a horrible way. Being afraid of who will be next. Living in a state of constant terror and sorrow. Just unthinkable.

AIDS Walk New York

This weekend is the AIDS Walk in NYC. This is my third year to do it. It's a great experience. Thousands of people walking through Central Park on a Sunday afternoon, having a great time, enjoying each others company, and of course supporting services for people living with HIV/AIDS and research to find a cure.

If you're interested in donating money, here's my donation page. And if you're interested in walking, it's not too late. Just click here and sign up with my team.


UPDATE: The AIDS Walk was a big success. They raised $6.5million. Thanks for your support.