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So, You Wanted to Join the Circus!

Walking The High Wire

December 1996

Kvitch. Boy, is this ever an appropriate name for this column. How many of you unwittingly joined this HIV circus and are now acquiring skills on the high wire?
Crixivan, saquinavir, AZT,
Combination cocktails,
What will it be?

For anyone living with advanced AIDS, doing a balancing act with toxic opportunistic infection (O.I.) treatments -- say, chemotherapy for Kaposi's sarcoma (K.S.), chronic "scoots" from Cryptosporidium -- mixed in with a large dose of depression, it's a little hard to keep your cool and composure. I feel incredibly dismantled like the scarecrow in The Wizard of Oz: first AIDS took my legs and it threw them over there. Next, it took my insides and threw them over there! (This disease has claimed my mind too, but I was born a half wit, so no great loss.) That's me all over.

We are so damn close to major cure breakthroughs, yet so far away from acing the day-to-day decisionmaking and management concerning our health and survival that you could easily go screaming into the night.

If high-circulation publications like The New York Times and POZ magazine are running features on this AIDS quandary, then you know these are legitimate issues that need voicing. What are some of these issues? I've gone from being dressed to die to doing a 180-degree turn. Now I must focus on the ever complicated business of living -- having to pay my bills, worrying about what I will do if the government yanks disability out from under me, and experiencing concern about loved ones who are too sick to tolerate these new cocktails of hope.

One BIG help to me are my support groups. "You Are Not Alone" is a comfort and tremendous support. Where else can I laugh, cry and unload in the safe company of others. Many people are showing up in my groups with their own equations (i.e., complex of variable factors) -- all different and equally puzzling. One thing has become clear to me: we are all on this bus to Bananaville. However, instead of the bus being named "Priscilla," its name is HOPE.

One person who frequents one of the drop-in groups (I'll never tell who) coined the phrase "Better living through chemicals." What made this line particularly poignant is that he was laughing and crying at the same time while trying to spit out these words.

I never went to school to become a chemist (which is what I would need to do to balance clinical data, holistic or homeopathic remedies, Chinese, natural and western medicines). I use myself as a specimen. Arrgghh! People in one of my groups have held each other at the end of the session in a bittersweet communion.

How do I keep my focus and sanity? For one thing I suspend any petty, personal conflicting judgments I have about individuals who are different from me; I struggle to strengthen my resolve to "Keep Hope Alive" and offer my compatriots a great big hug and a smooch whenever I can. This plan of action applies to newly HIV-positive diagnosed individuals too -- they're just as vulnerable.

We are all tossing around words -- swallowing, shooting clean, doctors, drugs, sick friends, living friends, and sex. Oh, sex! (I won't go there. There's enough of a "yelp" in the topic to fill this column for a year . . . but stay tuned!)

There is fairly common agreement in my groups that by walking on the high wire, empowering ourselves and taking responsibility for our chemistries and lives, we will be able to finesse our immune systems long enough for something better and more secure to come along. The words hope, purpose in life, belief in one's Self, quality of life, and being free with love, become paramount.

I would like to close this month's column with an idea for my brothers, sisters, friends and lovers who, through a twist of fate, caught this communicable virus that will forever change the landscape of millions of lives in this world: this circus bus is going places. It's up to us to drive it and make the ride as enlightened and pleasurable as possible.

Love to all of you.
Keep the faith!

Thank you,
Joe Tonti

Joe Tonti is a musical comedy entertainer, night club performer, personal fitness instructor and trainer, AIDS volunteer and Body Positive facilitator. He is a survivor, and a devotee of Life.

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This article was provided by Body Positive. It is a part of the publication Body Positive.
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