I was standing in the laundry room at my mother's house when I got the news. My dad had been living in Arizona and we spoke every week on Sunday night. Unfortunately, this particular Sunday would be burned into my memory for the rest of my life.
When a parent tells you that they have AIDS, I am not sure there is anything worse you could imagine hearing. Especially not at the age of 13. It felt like all of the oxygen had been sucked out of my body and I just began to sob and cry and shake. I had no idea what to do or think or say—all I understood was that my dad was going to die.
I can't even begin to guess how many houses I have lived in since then, but that laundry room is so vivid in my memory: I remember where everything was, exactly what it looked like, what the phone felt like in my hand and how I kept pulling on the cord as I was crying.
The next days and weeks in school were nearly impossible for me. My mom suggested I not tell my classmates or anyone else the news, which was a wise decision. It was the 1980s and there was not a lot known about the disease, yet there was a lot of stigma, fear and bigotry, and my mom wanted to save me from all that. So I kept it to myself. Trying to keep something that is consuming you from anyone else is difficult in itself, and that was only one of the things I was struggling with.
A week later my mom and I realized that there was a chance we were also infected with HIV. We had no idea how long my dad had been infected with the virus before developing full blown AIDS, but if he had it when he was with my mom, chances were likely that we would also have it.
We went to a free AIDS clinic to be tested. This was back at a time when it took two weeks for results to come through, so for a total of three weeks I was quite sure that my mother and myself would also be dying from the disease. It is strange to go from a being a somewhat carefree kid to being a kid who has to come to grips with the fact that he and his family may soon die.
Finding out that we were both negative was a relief, but only partially, as I was still going to lose my dad.
In the next couple of months I researched the disease, trying to learn as much as I could and possibly come up with a way out for my father. We spent more more time talking on the phone and exchanging letters and he made more visits to see me. Once a week he would send me an audio cassette with stories about his life that he would record for me, as I wanted to have things to remember him by and learn about him later when I would not actually be able to speak with him.
During this time period he went through dozens of alternative therapies—from natural medicines and herbal "cures" to experimental drugs and procedures. I remember one of the processes he went through involved days of having his blood taken out, heated, cooled and put back inside him. As I remember it, the theory was that this would kill the virus and clean the blood. Of course we know now these things just did not work.
It is strange to watch someone go from being one of the best glass artists in the world, a true revolutionary with his work, to someone whose whole world revolved around doctors visits, therapies, new medications, new side effects and blood cell counts. It was like watching the disease rob him of his mental and emotional self long before it would rob him of his physical self.
His health deteriorated quickly without the help of things like azidothymidine and the cocktails that are available now (should you be able to afford them). Within a year of finding out that he had AIDS, he was on his death bed. I was a mess, stricken with fear that there would be something I would forget to say or a question I would forget to ask and that I would spend the rest of my life regretting it. It is strange to say it, but losing people is something that you must learn in life; it is not by any means something that comes naturally.
In his final days he was suffering from dementia and literally dozens of other diseases in addition to AIDS. Because of the ability of AIDS to completely destroy the immune system, the sicker you get the more illnesses you come down with—from cancers to rare African insect fevers, your body breaks down and allows everything in. It got to the point where his doctor could not keep up and he was moved back home to die with his family and friends.
In the hours before his death, my father was in and out of consciousness. He was able to wake up long enough to tell me that he loved me and to utter the words "Live an incredible life." And then that was it, he was gone.
Those last words he left me with, along with the entire experience of losing him, changed the course of my life. More about me, both good and bad, can be traced back to those days than any other event in my life. It taught me so much—about life and family, love and loss, life and death. It taught me how trauma effects children and how those effects follow us for the rest of our lives as if they were burned into our spirits.
I WILL SOON POST a story I shot a number of years ago and just finished re-editing. It is about individuals dying from AIDS. However, before posting this story, I wanted to give people an idea of one person's experience with losing someone to this disease. For every photo I will post, there are family members, friends and children who went through similar experiences to mine. For all of the millions of AIDS patients around the world who I have not been able to photograph, they too have family and friends whose lives will be changed forever by what they experience.
We have come a long way in the fight against AIDS but it is important to remember that the battle is in no way over. We must continue to educate and, even more importantly, make quality drugs available to more than just those who who are fortunate enough to afford them until we are able to find a cure. I am just one person and can only do so much to tell people about how to fight against AIDS, but I wanted to remind everyone that this is something we must educate ourselves about and continue to follow, as it has a huge effect on so many lives—more than you probably had ever guessed.
Post Script: I am looking for funding to expand my coverage of AIDS and complete a major project on the subject matter. It is not a subject that is popular in the mainstream media, as images of the effects of the disease do not sell or get published widely, so if you are willing to provide private funding, grants or know someone who may be willing to fund this project, in whole or in part, please contact me via www.zoriah.com/contact. I would like to focus next on Africa and India and then work back toward America and Eastern Europe on this important subject. I can provide you with some sample budgets and other information on what it would take to pull this project off should you get in contact with me.
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