My Fabulous Disease
My AIDS Crisis Is Over
A Video Blog
By Mark S. King
April 7, 2010
The recent South Florida AIDS Walk was the first I've attended in a while. In this episode of my video blog, I take you with me while I mull over some of my own outdated thinking about the "AIDS crisis." I also chat with Rep. Barney Frank (arguably the most powerful gay man in America) about gay men living in a post-crisis world.
White, gay men such as myself aren't living in a state of crisis anymore. We're healthy (those of us with health care most especially), we've dialed the AIDS drama way down, and we're more likely to support a gay marriage amendment than someone in the AIDS Walk. Yes, I'm generalizing, but if we don't accept this reality we can't effectively relate to a large portion of the HIV prevention audience.
This past year saw the announcement of a man cured of HIV and a promising new HIV vaccine. At an AIDS Walk in the 80's or 90's, crowds would have broken into tears and danced in the streets. Yet the news produced little more than a raised eyebrow and a shrug. How bored must we be...?
Episode 16: My AIDS Crisis Is Over
I'm thrilled that the world of HIV/AIDS looks different now than it did when I was infected 30 years ago. And I still respect this disease and know the misery it continues to inflict around the world. But on some level, this gay David has lost his Goliath.
The question is, how do I maintain my vigilance and my commitment when Goliath has left the building?
As always, thanks for watching and please be well.
p.s. You'll always see my video series here first at TheBody.com, but I'm excited to announce the launch of my live blog, www.MyFabulousDisease.com, with exclusive content and daily postings. I hope you'll come check it out!
Send Mark an e-mail.
Comment by: jeff
Wed., Apr. 21, 2010 at 12:21 am EDT
Comment by: Jeffrey
Wed., Apr. 14, 2010 at 2:15 pm EDT
I have read many of your articles in the past. They are informative and entertaining.
I am very disappointed that you would write an article that detracts from the seriousness of the disease. What are you thinking?
Comment by: Eddie
Fri., Apr. 9, 2010 at 10:03 pm EDT
I think the Goliath has not left the house, It has transformed. It has changed colors- like the chameleon- It raped my cells as he entered my body awhile ago and now Goliath, the rapist, don't want to get out and be arrested or killed. It continues to abuse me as it lays dormant just to see if I can distract myself by not pinning down with a cocktail of -let's see- drugs. I know It is there, in fact, I talk to it and remind both that we have to share a place everyday, anytime and everywhere we go. If I go, then that would be the end of its survival. We are both surviving and struggling , I am surviving from it, and it from the drugs. It is a constant fight. In today's medicine and technology we have the silver bullets to combat HIV; however,what we don't have is the golden rifle to shoot it with. As we learn more about the disease, there is light at the end of the tunnel, even if we have see it through a magnifying glass.There is hope, and it will come through education, prevention and clinical trails. I can relate to all of these people who have suffered -still do- from the rampant consequences of carrying a heavy Goliath both physically and mentally and maybe emotionally throughout the years. Mark, I think you are doing great because you hide from reality, which may work to your advantage.You did before. Perhaps You may have a bigger of a Goliath within your cells, besides the drugs that don't let the little Goliath come in and infect more cells or even slow the process at an astonishing rate that let you be or act "normal". I enjoy your blogs.
Comment by: The Subversive Librarian
Fri., Apr. 9, 2010 at 5:23 pm EDT
Hmmm. Well, I watched this video twice, and I read the written post, and I didn’t hear what some commenters heard.
Here’s what Mark wrote:
“I'm thrilled that the world of HIV/AIDS looks different now than it did when I was infected 30 years ago. And I still respect this disease and know the misery it continues to inflict around the world. But on some level, this gay David has lost his Goliath. The question is, how do I maintain my vigilance and my commitment when Goliath has left the building?”
So, he clearly understands that HIV/AIDS is still dangerous. He’s grateful that the crisis has lost its immediacy for many, including him. But he also acknowledges that he holds a relatively privileged place in the whole scheme of things, and that complacency is, in itself, a high-risk behavior.
I will say this: I’m not convinced Goliath has left the building; I suspect he’s hanging out in the smoking lounge looking for an “in.” For many people, that “in” is drug addiction, which in turn enables a lot of high-risk behavior. And that, it seems to me, is where the most immediate crisis now looms, at least in this country. In order to manage one disease effectively, I think we need to manage both. I think that’s true both individually and as a society.
I also think perhaps there are three simultaneous truths, not just two: (1) HIV/AIDS is not the crisis it once was; (2) It's a lovely day for a walk; and (3) There's still a lot of work left to do.
Anyway... Mark, I love your blog, and I loved your book!
Comment by: Robert
(New York, NY)
Fri., Apr. 9, 2010 at 3:06 pm EDT
What planet do you and Barney Frank live on?
If I'm not mistaken, most states are currently in crisis with respect to their Ryan White/ADAP funding, prompting waiting lists for people in need of medication, and in at least one case the death of an individual on a waiting list.
HIV infection rates are rising again in major urban areas, and we're just beginning to look at the long term effects of HIV medications. And, Crystal Meth use remains a problem around the country, affecting safer sex practices and conversion rates of HIV, and Hep C.
Good thing the crisis is over.......
Comment by: Magnolia
Fri., Apr. 9, 2010 at 2:24 pm EDT
Maybe Goliath hasn't left the building, but he certainly has shrunk a lot. Let's rejoice for those who are leading healthier, extended lives, and offer hope to those who are still struggling with their Goliath.
Comment by: Richard
Fri., Apr. 9, 2010 at 12:49 pm EDT
Is it possible, after all these years, that I still suffer from "survivor's guilt"? Your blog made me look at myself and my past behaviors and wonder (again)how I came through it relatively unscathed. After more reflection, I realize I DIDN'T escape without some serious emotional damage. When i remember the suffering and death we dealt with in the 80's, the old guilt resurfaces. A useless emotion, for sure, unless it gives rise to positive action. Your blog is a healthy reminder that although I haven't known anyone who has died of AIDS in a very long time, and the "crisis" may not be what it was, many people DID die. And it consumed many of us who survived. There is still plenty of work to do, and thankfully, because of the efforts of people like you, some of the remaining work concerns issues other than AIDS.
Comment by: Kirk
Thu., Apr. 8, 2010 at 11:24 pm EDT
Thank you Mark for the thought provoking statements. Unfortunately, I was very young in the 80's and was basically ignorant of HIV and AIDS in the 90's. I recently aquired HIV in Sept. 2005. I have met several people who have told me how it was. I have recently lost three of my friends to this "Goliath" but it certainly is not what it was when you are referring to. I wish young people considered it a crisis, though. I think the irresponsibility is normal. I think the AOC, walks are still very important. I am doing one in Fort Worth this coming Sunday. I just know I missed something by not being around in the 80's and 90's. I think I am gaining a heart, courage, respect, wisdom, goal, fight, etc. by walking in these events now. I don't plan on living my life like I have been impacted by a "Goliath" but I do not want to grow "cold" to the urgency either.
Thanks for all you do.
Comment by: John
(Somewhere, in GA)
Thu., Apr. 8, 2010 at 8:01 pm EDT
So everything is back to normal for you Mark? huh? (It's) life goes on for you? I find you very self absorbed and your comments insensitive. Good for you Mark, glad you've made lemonade out of the HIV lemon as an AIDs activist. I was diagnosed about the same time as you and my life as been a rollercoaster of struggle and disappointments. Much like my CD4 count for the last 25 years. So at 55 years old, with no job, no savings I have had to move back into my 77 year old parents home. I am grateful, but Mark, come on man, you should know better than making comments like that. I would be cheering if their were a cure, but it's not going to undo the devastation and emotional scaring that this disease has left on me. I am happy you are able to get beyond seeing HIV as the monster it once was, but for many of us, it is very hard to rebuild a life when the monster of stigma is still alive and well. I still have hope that I will someday have some quality in my life such as you. You obiously live surrounded by a supportive gay, hiv community. Some of us don't.
Comment by: Emmett
Thu., Apr. 8, 2010 at 3:42 pm EDT
I'm happy to hear that your Goliath has left the room but I want to make sure that those who think this is a manageable disease and continue to have unsafe sex thinking it is a manageable disease hear the other side of the story. "My Goliath is alive and living next door to me, always waiting to crush me".
I live with horrible fatigue, have had 2 hip replacements, my skin is thinning way sooner than it would have had I not had this disease and I have lost too much fat under my skin. My lypodystropy is like caring around a huge weight always there making me look horrible. I exercise but still my belly is huge and my legs terribly thin with ugly veins showing because there is no fat under my skin, beautiful don't you know. I also have terribly painful neuropathy that to date has not been helped by standard treatments and the pain is with me around the clock. Some of us get neuropathy from HIV itself, not the drugs. I could go on and on but you get the picture. And by the way, I have had some of the best HIV doctor's helping me and yes the drugs have extended my life way beyond what I would have normally lived without them but I am aging quicker than I should have and live in pain and live with body disfigurement. Not all of us were able to afford the face filler and science hasn't learned to put that fat back into my butt and legs.
Don't believe for a minute that this is a cake walk, many of us stay at home and curse this disease, we are not all rid of Goliath by any means!
Comment by: Brian Barber
Thu., Apr. 8, 2010 at 2:28 pm EDT
Thanks Mark....Glad your doing well.
Keep up the good work.
Comment by: commited nurs
Thu., Apr. 8, 2010 at 2:13 pm EDT
I have committed myself to treating those infected since the early days of the epidemic and I miss the advocates who were on the front lines, fighting for the rights of all who were infected who needed care, who fought for the right to use themselves as guinea pigs to find any medication that would slow/halt the progression of this disease, who gave of themselves to the end of themselves. I miss all the women, men, teens and children who fought a brave battle but lost their lives to long, suffering diseases and infections. I have many survivors of the early years who continue to work hard to have a healthy future. But believe you me the epidemic is far from over in America. As a pediatric nurse who provides care to women, children, families, teens, young men of all sexual preferences I know that this fight is far from being over, we have NOT WON as long as persons continue to be infected by a basically preventable disease in the USA. We can treat HIV and we can prevent disease progression these days but...the horrible numbers of newly infected continue to mount, many of these are being infected by persons who know they are infected but don't share their status with their partners, have very young partners, have many partners, who choose to not use female/male condoms thus passing on a disease they them selves hate having. There is so much work that needs to be done, it may be different work than that of the early days but has Goliath really left the building???????
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