Making A Difference

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Kicking ASS and  remembering names

 

By Sue Saltmarsh

“I don’t know much about anything…but I know about  surviving.” Those were the words of Tez Anderson at the beginning of a video of the first “town hall” meeting of  Let’s Kick ASS, a group Anderson  founded for long-term AIDS survivors who are now consciously, courageously  confronting the effects of AIDS Survivors Syndrome (ASS), yet to be included in  the DSM IV, but perhaps destined to appear there eventually.

ASS, much like its more mainstream “cousin” Post-Traumatic  Stress Disorder, is a combination of physical, mental, and emotional results of  trauma. The trauma of surviving when many of your friends and partners did not.  The trauma of being HIV-positive in the days before HIV specialists and a  one-pill-once-a-day treatment was available, when treatment options of any kind  were few, had horrific side effects, and were not widely available. The trauma  of when opportunistic infections and conditions like Kaposi’s sarcoma and  severe wasting “marked” you as having AIDS. The trauma of helplessness, anger,  frustration, debility, pain, heartache, and loneliness.

Battered by this repertoire of trauma, long-term survivors  were nonetheless not victims. Different strengths grew out of their  struggles—relentless, fierce ACT UP activism that moved Big Pharma, the FDA,  and Congress; LGBT community unity and care for each other; hunger for  information and understanding of not only the disease they lived with, but also  of the science, technology, economics, and policy necessary to develop less  harmful, effective, accessible treatment; and determination to see the day when  HIV was not an automatic stepping stone to AIDS and AIDS was no longer a death  sentence.

If you go to www.letskickass.org,  you’ll see, “The symptoms include: Depression; personality changes; flashes of  anger; survivor guilt; jumpiness or hyperarousal; anxiety; emotional  numbness; insomnia; social withdrawal and isolation; hopelessness; substance  abuse; sexual risk-taking; and lack of future orientation.”

And all that is in addition to physical symptoms, work  and/or financial stress, relationship dynamics, and just the every day business  of living in a society where you are too often ignored or dismissed and  sometimes actively hated and discriminated against. But they still survive.

I’m honored to know one of these ASS Kickers personally –  Matt Sharp, former colleague, inspiration, and friend, is a founding member of  the group. I have always thought of Matt as one of the most fearless people I  know, as he has repeatedly taken part in clinical trials and has tried new  treatments intrepidly (I will never forget him gently rolling his Fuzeon vial  during a staff meeting – the only person I ever knew to take it). His  knowledgeable and articulate speaking and writing on the HIV life cycle, immune  system, and HIV drugs is a living representation of the best that can happen  when someone knows the value of learning everything about their disease, of  embracing the “knowledge is power” model.

I don’t think of Matt as someone who “needs” a support  group, but when he first told me about Let’s Kick ASS, the excitement in his  voice reminded me of myself when talking about returning home after a long  tour—the feeling of knowing I’d be somewhere I belonged, where I was loved and  cared for, and where there would be people I could tell anything to who would  understand, a feeling of homecoming.

We all need that  feeling. To know we’re not alone, that someone else has been there, wherever  “there” is. And if I was newly HIV-diagnosed, there’s nothing I’d want more  than to sit in the back of the room and listen, learning how these veterans of  the AIDS war did it.

For recognizing their own need for a “home” with each other  and empowering themselves to build it; for being willing to share, teach, and  mentor; for continuing to survive—congratulations and thanks to the healing warriors  of Let’s Kick ASS for making a difference.

Follow Let’s Kick ASS on Facebook: www.facebook.com/AIDSSurvivorSyndrome?ref=br_tf

Twitter @AIDSsurvivors     Meetup: http://www.meetup.com/Lets-Kick-ASS/

Nightmare journey for woman deliberately infected with HIV

 

“It’s just…”

For a full five seconds the words hang in the spring sunshine as the woman tries to convey in words something few of us can even imagine.

“It’s like an attempt against your life.

“But it’s so subtle and it creeps up so subtly that you don’t even perceive it as that. But until you finally come to that realisation it’s the only thing that can transform and heal what you’ve gone through. Advertisement”Before that it’s just swimming endlessly and having no aim, no way to cope.”

The 38-year-old Sydney massage therapist sitting across the road from the Downing Centre District Court is HIV-positive, a diagnosis which entitles her to anonymity under NSW law.

Ten years ago she was infected by a man – Chris Muronzi – who knew he was carrying the disease but maliciously decided to have unprotected sex with her on six separate occasions.

Thanks to an appalling conspiracy of circumstances, including the negligence of doctors at an eastern suburbs medical clinic where she went to get tested, the woman then accidentally passed the disease to her new partner before she was diagnosed.

She has just come from the courtroom where Muronzi, a 42-year-old Australian of Zimbabwean descent, appeared in a brief sentencing hearing on the charge of maliciously inflicting grevious bodily harm, a charge which carries a maximum seven-year jail sentence.