Home Positively Social: Blogging & Tweeting with AIDS/HIV

Positively Social: Blogging & Tweeting with AIDS/HIV

Through the bravery and efforts of people such as our good friend Drew Olanoff and the LIVESTRONG campaign, many social media users are much more aware of cancer and what this disease does to the body, mind, soul and community.

Today, on World AIDS Day, we’d like to direct your attention to a few folks on the social web who are facing lives with HIV/AIDS and have made the same brave choice to share that experience with the rest of us. Read on for bits and pieces of their stories as well as feeds and lists that will keep their struggles and triumphs in your thoughts.

Shawn Decker’s ShawnandGwenn.com

Decker, who is a public speaker educator and advocate, blogs with girlfriend Gwenn Barringer about his own struggles with the virus and the challenges of being in an HIV-asymmetrical couple.

With the success I’ve had keeping my numbers stable, I broached the topic of trying one week on, two weeks off meds…

My reason for wanting a longer break has been absent-mindedness and lethargy… It’s especially frustrating on the days when things just aren’t clicking in the old nugget; like when I wake up feeling exhausted instead of rested or, in the middle of a shower, I wonder if I’ve already washed my hair or not. This tends to happen after a couple of days on meds.

Steve Schalchlin’s Bonus Round

Schalchlin is one of the first HIV/AIDS bloggers, beginning his blog in 1996. Also a songwriter, Schalchlin put his story into music that his partner, playwright Jim Brochu, turned into The Last Session, a musical about a man’s struggle with AIDS.

In Flash Forward, some of the characters are saying, “The future saved me.”

I remember when I could see my future. And like this character, there was a certain comfort in knowing I had only just so much time and no more. I’m reminded of the old Chinese saying about how a child who dies has the longest life and an old man, the shortest.

I know that that state of mind, of perfect freedom, is available. I know it is because it’s only a state of mind. Having gone there, I know what it feels and tastes and smells like. The question is whether I have to know when I’m gonna die to get there again.

Kenn Chaplin’s My Journey With AIDS

Chaplin is a blogger who faces AIDS and is a survivor of childhood and adult trauma and adult-diagnosed mental illness.

When diagnosed with HIV in 1989, and AIDS a few years later, it was suggested that I probably had a maximum of ten years to live. In fact I did nearly die of cryptospoidiosis which my doctor still talks about with a sense of marvel. It only seemed logical that I should accept the reality, with countless friends dying around me, and try to live into death with as much grace as I could muster. What I asserted was realism some friends took to be pessimism. One I think of in particular eventually drifted away as, it seems to me, she could neither tolerate what I believed to be reasonable thoughts of dying nor the fact that my health was, to her, no longer of imminent concern.

James McLarty-Lopez’s Still Arriving

McLarty-Lopez is a young, recently married gay man. His blog references medications he takes, side effects he experiences and his general feelings about this part of his life.

Chad and I last night were discussing Justin’s passing. While very sad it was only a matter of time… I have been tired many times. I have been weak many times. However, through the times in the valley I have always said “I want to live.” In comparison, Justin too said he wanted to live, the difference being, he waited far too late to make that decision. He was only 24 and ravaged with HIV and AIDS defining illnesses. Who knows why Justin never really sought treatment? Perhaps the stigma of having HIV stopped him. Perhaps he just didn’t want to have to acknowledge the fact he had it. The only person who could have answered that is gone. Speculation will neither ease the pain nor bring him back. Now it’s about remembering his smile and moving on with the lesson of I want to live.

To subscribe to a 12-blog feed of blogs from folks living with and writing about HIV/AIDS, click here.

Also, we’ve put together a Twitter list of people who live with HIV/AIDS and people who medically treat, advocate for and work with HIV/AIDS sufferers.

What better way to observe World AIDS Day than by actually reading the words and understanding the challenges of those who actually live with AIDS or HIV and are unashamed and courageous enough to share those stories with us?

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