A day in the Life … 1 Oct 2010.
From the outside you’d never know that anything was amiss. Living in today’s world, nobody takes the time to stop and really see what goes on inside of other people. We are too busy with the things of the day to take that extra moment to stop and wonder, maybe out loud, or maybe to ourselves.
We are all going to die one day. But we don’t know for sure when that appointed day will come, or how it will happen. And do we really concern ourselves with that kind of thinking? We think not. Death is only dealt with when it happens to us or to someone near us. Our culture tends to stave off death for the more immediate things of the day.
We need to get a quart of milk, I need to drop Timmy off at soccer practice, I really need to take the car in for an oil change. We are a ‘too busy’ culture. We all have things that we must do every day and the ‘honey do’ list changes from day to day.
What if someone told you that you were going to die, and that ‘By the Numbers’ could tell you accurately when that appointed day would come? We are all about the bottom line, the final number. We love lists and calendars. I think we would be shocked and awed if we could put our death dates on a calendar.It we be a stark reminder of just how important living in the moment would become if we all had to live with that looming date hanging over our heads.
I think I can safely say that a good percentage of us, today, have known, been in contact with or know someone directly that has dealt with a terminal illness diagnosis. I think we all, by some degree of separation, know someone who has been diagnosed with, suffered with and died from something we call Cancer. That is a good heterosexual equal opportunity disease we can all get behind.
Because when it strikes someone we know, it becomes our disease as well. We are probably the one who would attend a cancer walk, we would pay into fund raising, we would get out there and do anything we could to make it go away if we could.
The point of this post is not to talk about cancer, or heterosexual diseases. But that’s the way most of society thinks today. Diseases are regional, they affect only one section of society, it is too easy to compartmentalize illnesses. But we do it every day.
It is not spoken of very often, and only at certain times of the year. Every Pride, we hear about it. And on December 1st, World AIDS Day, every year we are reminded of it as well. Throughout the year, something called “The Names Project Quilt” is shown in some city, in one form or another.
What is it that I am talking about? AIDS …
From the outside you’d never know that I was one of those people we might know, by some degree of separation, that lives with AIDS. I am sure that we all know, by some degree of separation someone who is Gay, Lesbian, Transgendered or Queer. We are hearing more and more about the LGBTQ community, as the gay rights issues are making their way out of the dark and into our living rooms and into our voting booths.
If you saw me today, you would never know that for the last 16 plus years I have lived with a mark on my chest. Living with AIDS today is not a death sentence, doctors would tell you. And it isn’t. With the new medications available, people living with HIV/AIDS can lead very productive lives and not worry about getting that definite diagnosis with its death date attached.
But we know that not everybody has access to these magical life changing medications. People in other parts of the world are languishing away, suffering the ravages of a terribly painful and disfiguring disease. It is not fair that drug companies do not do more to make drugs available worldwide, we could save so many more lives than letting them go to their deaths never knowing that with proper medical attention, they too could live a life that I am writing you about tonight.
On July the 8th 1994, at 12 noon, it was a Friday, I was told by my doctor that I had AIDS and that I was going to die. He told me I had at best 18 months to live, that I should go home and take stock of my situation, get my things in order and prepare to die.
At that time, there was no magic pill. In fact, at first, all we could do was wait to die. But there was a small group of health care professionals who worked at what is called “A drug farm” and at this farm we could find medications to help us survive. How did these drug farms work? Where did they get the medication to hand out to us day in and day out?
People all around us were dying. Left and right. One day after the next. The survivors would go to these homes and collect left over medication, bottle by bottle, one pill at a time. And the drug farm would re-bottle these meds, because meds are good for one year from the subscription date, we at least had that to bank on.
There was no social system to care for sick people in 1994. There were no special clinics to help us, dedicated doctors who would master the art of saving lives. We were tucked away in corners of hospitals, sequestered away behind hasmat protection so that we would not infect healthy hospital and clinic workers. The abuses that we were submitted to by health care professionals, back in the day, were horrible. Many of my friends who did not make it, were not helped by medical systems. They were punished and segregated from population only left to die with what little dignity they had left.
That is what I lived with that first year and a half. People would save my life, even if I was waiting to die. At the same time that I was waiting to die, I was also counting my days sober, because the two events in my life coincided with my diagnosis, death and sobriety.
I really believe today that the fact that I wasn’t plying my body with alcohol and drugs at the time saved my life. I needed all the help I could get because the drugs that we were taking had severe and sometimes life threatening side effects. But we took them nonetheless.
It was at this time, that in South Florida, San Francisco, New York and at several other major cities in the U.S. started to slowly find answers one year after the next. What I know today about medical progress leads me to believe that even then, the doctors who treat me today were treating the worst and sickest populations all over the world. If we only had then, what we have today, we could have saved hundreds of thousands of lives.
Every day that I waited to die I did several things. In the morning I would take my pills. I needed to feed myself, get cleaned up for the day, maybe hit a meeting or two during the day, and at night I had the best job I ever had in my life. The men we worked with were our saviors. So many of us sick and all of my friends from that time, never made it. Today, only two men survive from my circle of friends who worked at the nightclub. Thousands of men died.
I would live. Don’t ask me why I lived and so many died. I cannot answer that question. All I know is that I had been surrounded by good loving and right acting friends and fellows. I counted those days one at a time. I marked them off on a calendar that I posted on my kitchen wall. I was very sick. But I was also very alive. I was acutely aware of everything going on around me, maybe because I knew that I was going to die.
The one thing I can tell you from that period of my life is that I had focus. And that I had someone else calling the shots. Bear with me here … if it wasn’t for my Master Todd, I would surely have died. I had a life outside of work. Then at work I had another life.
The good thing was about my Master is that once I walked through the door of the nightclub, I could let everything else go, for as long as I was under the roof. I did not have to think about living or dying. I had a job to do, and to do that job, I needed focus and attention. And if I had other things on my mind, I would not have the focus I needed to get the jobs that I was assigned done.
I would see my death date come and go. And at the point that I was still alive, on the day that doctors said that I would die, I had a decision to make. Would I continue to wait to die, or would I go on with my life. THAT was a specific decision I had to make. Because it allowed me to go on living, without the looming threat of death hanging over my shoulders.
I would meet a doctor in Miami, who was treating people with HIV/AIDS. He would be the next link in my survival plan. It was a truly comprehensive treatment program. The ability to test the virus to see what strain we had came about. Genetic testing also came years on. The way doctors treated HIV changed over that first four years I was diagnosed. Miami was building treatment centers. We were not sequestered away and shunned from society any more. The horrors that I witnessed, never happened to me again. I was somebody. I was worth saving. So were many others. People started living, and not dying. It was miraculous.
I cannot tell you specifically what changed over time, but I can tell you that I got sober, for a few years, then I slipped, and went back out. I came back in December 2001, and got sober once again.
In 2002, I came to Canada to visit a friend. That was at the 8 year mark. I loved the city so much, that I called home and told them I was staying another week. I met people, I went to meetings, I was still sober and would remain sober to this day.
I would meet a doctor at the Montreal General hospital who would become my doctor, and he is still my doctor to this day. My doctor, the sainted man, treated patient zero. The french flight attendant who transmitted the disease all over the world. Needless to say that the medical professionals that I met here in Montreal, were the doctors who were treating patients, twenty years or more prior. When AIDS was only known as GRID.
Eventually I moved from the U.S. to Canada, because living with AIDS in Miami, was not life affirming. I could not work because I was on disability. I could not afford to pay for all the pills I was taking. And I surely could not afford to pay rent, buy food and live all at the same time. Something had to give. When faced with the issue of either buying food and paying rent, OR paying for medication, that’s when life got dicey.
I had an out. I used it, and I never looked back.
From 2002 through till 2007 I tested drugs for the clinic. As the medications would roll out of the drug companies, they would come to us. And every year as the pills became available we would take them, until they were approved for general use across the board. So you can thank many of us here in Montreal, because the drugs you have today, were first tested by teams of test pigs like myself.
I was doing so well, and I continue to do so well, that my numbers mystify my doctors from office visit to office visit. Things here in Canada are not as dire as they were in the U.S. Had I stayed in the U.S. living on bare necessities having to choose medication over rent, I probably would have died. I am not sure I would have survived.
I don’t know how people pay for medication and live at the same time today. But from what I have seen from several communities nation wide, comprehensive medical supervision has been in place for a number of years.
What do I do every day now? What does a day in the life with HIV/AIDS looks like? I live a normal life. I take my pills every day. I see my doctor every three months. I have a life, a life I would never have imagined for myself just a few years ago. I can surely tell you that if you told me that I would have lived and lived this well, back in the days that I was first diagnosed, I would never have believed you.
What can I tell you young people who are coming up into the garden of earthly delights… You better think before you have sex with someone. Always remember that if you don’t know if your partner is POZ, then you act as if. You use a condom. Every time. Don’t ever put your life in danger by assuming that just because you know someone, doesn’t mean you “know” everything about them.
The stigma of AIDS was one of horror back in the day. The things that I witnessed by human beings was terrible and evil. I watched fair minded loving human beings become evil and terrible. I watched parents throw their children out into the streets, (wait, that still happens today in some Christian circles). I watched employers fire sick workers. I watched well people leave destitute their partners.
I witnessed the worst in human capacity. I would not wish this same type of discrimination upon anyone in today’s world.
Life is so much better today than it was then. I miss those days. I really do. I miss my friends, and I lament the past. Because it was the most spectacular time of my life in many ways. Life is nowhere near the same as it was then. Back then we were fighting for our lives physically, mentally and emotionally. I have been living a normal life for so long, that I have somewhat forgotten what it was like to urgently live life as if I were dying …
If you want to read more, you can come visit my pages over on my blog.
Good night from Montreal.