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The Value of Asking for What You Want

by | Dec 6, 2011 | Living with HIV/AIDS, My Fabulous Disease, Prevention and Policy | 6 comments

Remember when we were little, and if we wanted something we simply asked for it? It felt easy. It seemed natural. And if there was really something special we had to have, there was a golden opportunity every year to ask the person who made all things possible. Santa Claus.

Santa ListBut then we got older, and life became more complex, and we were told it was better to give than to receive. Asking for what we wanted felt selfish, and many even a sign of weakness.

I wish we could look at this differently. Admitting we want something can be liberating. It acknowledges we are human, and there is grace, beauty even, in revealing our need and being vulnerable and allowing someone to help us.

Just because we don’t ask for toys anymore doesn’t mean we don’t want anything. We want friendship. We want to be accepted. We want our health. Maybe it’s asking a friend to listen, or wanting a medication with fewer side effects.

Just saying, I need this. I want to feel better. Or, I need you.

Wanting is not limited to children, my friends. But we might take a lesson from their transparency. Sometimes the answer, the help we need, the gift waiting for us, will only appear when we take a chance, when we finally have the courage to ask for what we want.

Happy holidays, and please be well.


(I don’t think I’ve ever been more excited about a video blog than the one premiering here next week: The “My Fabulous Disease” Holiday Spectacular! A dozen of my relatives have come together to bring you comedy, Christmas cookies, a little drag, a visit from Santa — and some very candid feelings about loving a family member with HIV/AIDS. I hope you’ll come back next week and meet the family! — Mark)


rest area sign 1A word, if I may, about my recent posting “The Long Road Home from Relapse,” which managed to break traffic records on my blog, generate amazingly supportive comments, and also became its own source of concern among some of my fellows in recovery. As a few of the comments suggested, my drug relapse was a serious event that even I may not fully appreciate just yet, much less be able to distill its lessons to my readers. Some felt that writing about it so soon after the fact seemed cavalier. I’d like to say that my actual recovery process — the work I do on a daily basis to rebuild and maintain a clean and sober life — involves many things that are completely unrelated to my writing. It is ongoing and intimate and I take it very seriously. I considered withholding the relapse from my blog, but it just felt dishonest not to talk about it. My point is, there is work ahead for me that I hold dear and will keep to myself, my sponsor and my God. As Tony Kushner writes in the last line of Angels in America, “the great work continues.”

Nick RhoadesThe madness continues of criminalizing those with HIV who do not (allegedly) reveal their HIV status to their partners, and new cases are piling up around the country. These include many prosecutions in which protection was used and no transmission occurred. But only now have we been able to hear the voices of those who have experienced this Kafkaesque nightmare. In his upcoming documentary “HIV is Not a Crime,” AIDS activist and writer Sean Strub gives voice to the “criminals.” Their stories are riveting and heartbreaking, like that of Nick Rhoades, right. You can view a terrific trailer on YouTube, and I dare you not to let it make your blood boil, positive or not. I urge you to take a look and get educated on what is becoming a defining HIV issue for our time.

CNN ReporterDid you catch all the media attention last week stating that people with HIV aren’t taking very good care of themselves? Oh yes indeedy, the news reports, with headlines like Few in US with HIV have virus under control, and HIV Out Of Control In US Patients, seemed to suggest that it was people living with HIV who somehow haven’t been doing the right thing to maintain their health. And that’s a load of hooey, as my dad used to say. It turns out that the reports were misrepresenting a new CDC study showing that less than half of HIV patients have access to proper treatment. As in, not their fault. This distinction was made in an eye-opening blog posting by Housing Works, in which the actual study vs. the media reporting is clearly explained. “We are facing major budget cuts in homeless services, housing, testing and prevention,” blogger Kenyon Farrow states. “These all prevent people with HIV from staying healthy and make many more people vulnerable to infection… By focusing media scrutiny on government officials, the public would be better informed about who’s really ‘out of control.'”

7The Windy City Times continued a remarkable year-long commitment to covering AIDS this week, which is really a story in itself — a gay paper intent on maintaining visibility of the crisis in commemoration of the 30-year milestone. So I am especially excited that the paper chose to run a profile about My Fabulous Disease as part of their World AIDS Day coverage. Writer Joe Franco, intrepid journalist that he is, took the time to both interview me and actually watch most of my videos, if you can imagine. In his piece he manages to discuss AIDS, community, comedy, drug addiction and drag. In other words, it’s a fair representation of what you get around here on a regular basis. My mom loved it.


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