Today is my birthday. Today is a day that, frankly, just a few years ago, I did not think I would live to see. Most of my gay male friends from my New York days aren't around to celebrate it with me. They weren't as lucky as I am with this virus. I honestly couldn't tell you how I got to be the one to survive all of this - and frankly some days I wish I didn't - but I have made it this far and have every reason to believe that I am going to be around a lot longer. Writing these posts make me understand more and more why I am still here and what my purpose is.
I almost didn't make it eight years ago - on January 10, 2001 to be exact. I had pretty much stopped breathing, and if it wasn't for the heroic efforts and persistence of my dear friend, Carol Walker, I would be nothing more than a footnote in the history of AIDS right now. Carol knew how hard it was for me to face this struggle and knew how much I denied what I was going through. She came by that day to pick me up to get my blood work results, and instead, ended up helping me get ready to be admitted to Cedars Sinai. I was to have a twelve-day stay there. On day two, my doctor told me flat out that if I stayed home even for one more day I probably would not have lived. Quite a sobering statement while you are hooked up to a variety of machines and drips, yet one that resonates to my very core even to this day.
What lead up to this was months of denial. I would sit there knowing full well what was going on with my body, hoping that it was something else, that the latest symptom would go away, and it would become a thing of the past. I was so heavy into denial and so very scared to face the truth that I was not able to seek out help until it was almost too late. I had seen first hand what my boyfriend had gone through before he died, and was not sure how I would be able to handle that, or that if my friends and family could.
There were far too many nights I would just sit on the floor sobbing. I thought to myself that I could not believe that my body could hate me this much to do something like this to me. In those final days leading up to the hospital stay, I would lay there in bed, barely able to move, and just a tad more able to breath, and just crying out for my mother, knowing fully well she was 3,000 miles away and it would do no good.
Somehow, I knew inside that I would get through that struggle. I amazed the wonderful and attentive staff at Cedars - I gained twenty pounds in 12 days and could walk on my own again in record time. The nurses were all very sad to see me go because they had grown fond of me and my wit and some how, somewhere along the way, I become a model patient. The staff would be in first year Residents to learn about bedside manner. Little did they know that I was so very scared of dying that I would have scaled the outside of the building if they told me it would help.
Denial comes in many forms. Having been through all of the above, I can smell it a mile away, and honestly I cannot be the one to point the first finger. I know that it takes everyone their own time to get to where they need to be and they cannot be rushed along. I know, for me, my biggest concern was having access to health care.
I think a major reason why we do not have a national health care system is simply fear. By making provisions for the fact that you might get sick, that you might even get sick enough to die and, perhaps, suffer a great deal along the way, is confronting a fear that most of us do not even want to know exists. Yet we allow millions and millions of Americans to experience this suffering every single day. It is such a part of the very fabric of their existence; it just becomes routine. We deny that other Americans could possibly suffer such indignities, ours being the richest, most powerful country to ever have graced this planet, and deny their pain, blaming these individuals for simply not working hard enough or chasing down a job that would provide them with the perfect health insurance plan.
When I first started experiencing symptoms of my disease, I was too scared to face the ongoing treatments, problem riddled drugs, and ongoing blood work, and, instead dug my head into the sand and lied to myself and everyone around me. Funny thing about that is you can get away with it for a while because most people are busy wrapped up in their own version of denials, hence they are too busy covering their garbage to discover yours.
I remember the look on my father's face one summer afternoon in 2000. I had lost about 20 pounds that year alone and he noticed. He said to me, "Are you sure you are okay? Are you sure this isn't something else?" He gave me permission to admit it but I did not take the bait. Instead I replied that all is fine and not to worry. How very Alfred E, Newman of me. I just ran deeper into my cave of denial instead of reaching out for the olive branch he had just given me. When I had to come to terms with my disease, and I could no longer run and hide, my father was one of the first people I called. I apologized for doing this to him. He simply replied, "You have nothing to apologize for, because it's not happening to me. It's happening to you."
Up until that moment, I had denied that I was the one suffering, going through the pain, and was too concerned with the thoughts of others. I realized what a fool I had been and what it had cost me.
Recently we lost another American to AIDS, although she would never, ever admit to it. Her name was Christine Maggiore. She feverishly believed that HIV does not cause AIDS, and founded Alive and Well AIDS Alternatives, a nonprofit that challenged common assumptions about AIDS. Maggiore believed that flu shots, pregnancy and common viral infections could easily cause a positive test result. She detailed her concepts in her book, "What If Everything You Thought You Knew About AIDS Was Wrong?"
Maggiore is entitled, in our very own Bill of Rights, to question authority, to write about her own views, and to speak freely about her dissention from the ranks of the HIV authorities. However, many people were awe struck when she passed these beliefs onto her own children. Her own daughter, Eliza Jane Scovill, died in 2005, from what the Los Angeles County coroner ruled as AIDS related pneumonia. Maggiore refused to believe that news and hired her own doctor who claimed it was a toxic reaction to antibiotic amoxicillin that killed her.
I am all for questioning your doctors and learning all that you can about your condition. However there is denying and there is defying. Defy the odds they give you and stay alive at all costs to live long enough to tell them they were wrong. Don't deny yourself the necessary and available treatment that could save your own life just to prove a point.
When you are in a state of denial about something like this, you don't just hurt yourself. You hurt others.
President Bush is in spin process, his own form of denial, trying to reinvent his reputation before he leaves office and history gets its say. I do not think that an army of public relations firms could repair his reputation at this point. Recently, the New York Times fell into step with his denial. On the Editorial page, January 3, 2009 issue, the Times lauded President Bush's health care achievements. The Times stated that Mr. Bush deserves "high praise for significantly increasing American support for the global effort to control AIDS." The only effect Bush has had on AIDS is shifting focus from a domestic problem to an African one. People in America no longer think that AIDS is something they need to deal with, that the real struggle happens overseas. They are wrong.
During the first Bush's reign, employers were allowed to dismantle their health care programs for a self-insured program. In November 10, 1992, the New York Times discussed Frank Greenberg, executor v. H&H Music Company in which this specific music store was allowed to replace its health insurance plan with an escrow account of sorts. They could place funds into an account, creating a low fixed limit on benefits, thus reducing the employees' health benefits drastically. George H.W. Bush and his lead attorney on the project, Ken Starr, thought it was perfectly fine. Mr. Starr was quoted as saying the employer was motivated by a lawful purpose, "to avoid the expense of paying for AIDS treatment." So much for compassionate conservatism.
We have bailed out failing bank. We are about to hand over billions to an out of date auto industry that can in no way become competitive unless it completely retools. We have saved billions in mortgage backed toxic assets. But not once have we bailed out a human being. What kind of country do I live in where the corporate good takes precedence over the human good?
I guess we live in the land of the free, only if the free can afford to stay healthy.
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