DIRTY TALK

I recently worked on a PSA (Public Service Announcement) for AIDS/HIV awareness that is presently being shown on various television channels here in Santa Barbara County. I was one of a few faces and voices in a serious black and white informational piece that gives projected statistics of people in Santa Barbara County who are living with AIDS, or are HIV positive and aren’t even aware of their status. Basically, the announcement is encouraging people to get tested. Early detection can honestly mean life or death.

I was tested in the last year and in the week in between the test and the results; every horrible scenario went through my mind. And of course, pleading my case at the foot of god, I vowed what I would do if I were spared and even if I wasn’t. I didn’t even tell Will, I didn’t want him to needlessly worry. So, I sat with it for a week. When I went in to get the results, I took a number and sat for what seemed to be another week. My number was called as though I was waiting to place a take-out order and off I went to a private office with a counselor to hear the verdict. The counselor asked me to sit in a chair and then asked me if I had any questions. DO I HAVE ANY QUESTIONS??? Um… yeah, I do, asshole. I wonder what the question could be? Do YOU have any ideas of what my question could be? I was ready to pepper spray him. I looked at him very annoyed and said, “Why no… I don’t.” Seeing that his stalling didn’t amuse me, he told me that the results were negative. A gigantic relief? Yes. Did I still want to pepper spray him? Yes. Did I? Yes.

Well, remembering the case I had plead at the foot of god, I felt like I had been avoiding some of my social responsibilities to society and thought that I should do some volunteer work. I was asked to work on the PSA and was more than happy to. There was something that happened though, that I didn’t even think of. Some friends were concerned that people in the community would think that I had AIDS. I honestly have to say that this didn’t occur to me, nor did I care once they brought it to my attention. I really don’t care if anyone, ANYONE thought that I was HIV Positive or had AIDS. I’ve faced enough prejudice, what’s a little more?

I brushed off these concerns. But something more happened. The seed had been planted. Many neighbors and colleagues began seeing the PSA and telling me that they had seen it and that I did a good job. Will and I have yet to see it. Some other friends had actually called to say that they had seen it as well and then yelled at me as to why I didn’t tell them that I was going to be in the announcement in the first place. I was proud to be in it, I just didn’t really see a need to tell anyone about it, it didn’t seem all that exciting. But the neighbors and people that didn’t know me very well that saw it, I began to wonder if they thought that I was positive? A neighbor, whom I talk with on a fairly consistent basis, was in the pool here at our complex as I was getting in to do some laps. She was real friendly, said that she saw the PSA and that it looked great, that we did a great job, but as I got into the pool, she got out. She said that she had to get going. And I was trying not to assume, but wondering nonetheless…does she think that I have AIDS? I found myself wanting to tell her that I didn’t. And I realized that when co-workers and neighbors had told me that they had seen it, I had felt a need to clarify, to tell them that I had wanted to start doing more volunteer work – somehow hoping that this would indicate to them that I didn’t have AIDS.

What do I care though? I feel lucky to be able to give a voice to a cause that people are still afraid to talk about. It’s been 25 years since AIDS starting showing up in the news. I feel honored to hopefully help in someway, as idealistic as it may sound, if I encouraged one person to get tested, than I’m thrilled.

If I felt at all spotlighted for being in a PSA for this disease, what do the real victims of AIDS feel like? I know people that have it. And I’m humbled by their bravery, by their determination. I don’t know how they do it. If asked, many of them would say that they don’t have a choice, that they could just hole-up in their homes and never come out, or that they can live. I’m still humbled.

Seven years ago, I was diagnosed with a genetic disease that almost killed me. It’s Wilson’s disease, a genetic disorder that affects the liver. My liver can’t flush copper out of my system. So, I can’t eat pennies or copper pipes or copper jewelry. Okay, bad joke. Copper is in most food, just like a lot of minerals. However, there are some foods that are higher in it than others, and I try to stay away from those. When I was diagnosed, I was in liver-failure. So much copper had accumulated in my liver, it was bogging down, and I was dying from cirrhosis. The copper had also accumulated in my eyes and brain. I was suffering quite a bit of depression and was also having attention issues. I couldn’t drive in traffic and listen to the radio at the same time; it was too much stimuli. The color red actually agitated me. I wanted to strangle Michael Jackson and slap Gloria Estefan, but this was nothing new. And then I was feeling a lot of different physical symptoms that then began slowly screaming to me that I was dying. I needed to sleep in fleece and with blankets at night – in the summer. My hands stopped perspiring, which for me means something’s wrong. The moons in my fingernails began to disappear. And after a while on my feet, my legs would swell, feeling like sausages ready to burst from their seams. I began to lip-sync periodically and randomly to Carol Channing, again this was nothing new.

After going to the doctor and going through some tests, they told me that I was getting older, and that I should stretch more. I was 29 years old. Are they kidding? A week later as symptoms worsened, I called back screaming. “This is NOT me getting older! I am not a hypochondriac! I go to raise my foot to wash it in the shower and my hip cramps! I go to put my foot into my sock and my toes cramp out! My chest and biceps are quivering, I fell out of bed this morning onto the floor and couldn’t move because my body was cramping up. I had to lie there and pray until the pain went away and the cramps subsided. SOMETHING’S WRONG! I feel like I’m dying…” And then, they were like, “Okay, great… thanks for calling. Bye.” Actually, they had me come in immediately for more blood work.

A week later I was diagnosed with the rare disease and had begun a harsh medication regime to chelate the copper out of my system. I felt better immediately. I felt better just having a name for what I was going through. I can’t blame the doctors too much for not picking it up sooner because I never looked sick, I was never jaundice. And many people with Wilson’s don’t even make it to age 30. So, I was extremely lucky. And I still feel lucky. Lucky for having gone through it, lucky for having lived through it. As much as it was a severe slap of mortality, it was a gift – a gift of awareness that there are never any guarantees, we shouldn’t be so naïve to think so, and a gift of appreciation – for the delicacy and balance of life.

However, I felt something that I wouldn’t have expected. And during all the years that I worked as an orderly in hospitals with AIDS patients, Cancer patients, etc., I never wondered if they felt this way; dirty. I felt dirty, tainted in someway. Not like my crack was dirty, but that being un-healthy was somehow filthy. When I described this feeling to most people, they just looked at me like I was a drama-queen. But now I wondered if AIDS patients, or any patients dealing with a disease, felt this way. If somehow by having their own bodies fail them, they felt dirty.

Yesterday, a colleague of mine told me that she saw the PSA and loved it. She said how proud she was of me and that it was a really bold statement and production. I thanked her and then told her how I had been feeling in regards to if people thought that I was positive. That a friend had expressed to me that Santa Barbara was a small town and that he didn’t want people thinking that I had AIDS. I had told her that my response was, “Bring it on, I don’t care…let them think what they want.” Hoping that I was convincing myself as much as her, of my bravery, knowing that it pales in comparison to the real warriors that have the disease. She said that it didn’t really occur to her to think of whether I was positive or not, that she was looking at it from a production standpoint and that it was a powerful statement on a subject that people still didn’t want to talk about.

I was proud of it, I am proud of it. But, do I care? Do I care what they think? Of what label they’ve put on me, of what lens they’re using to see me now? I don’t care, but I do hope that they’re thinking. Maybe they are thinking, ‘Now I know someone with AIDS’. And maybe they’ll avoid me, maybe they’ll look at me like I’m dirty – that’s okay…It’s the ‘thinking’ part I care about.