September 2006 Archives

Sometimes fate can present issues that challenge us to our core. When a confluence of events occurs and the result falls somewhere between scared shitless to insanity. It would appear that my stars have crossed because I am teetering on the brink of insanity and scared shitless.

Stephen has suffered from problems in his legs and especially his feet that has generally been diagnosed as peripheral neuropathy and has been treated as such usually through medication. He has been through it all and while many of the treatments offer temporary relief, he has yet to find any true respite from this pain. So a few months ago he started the search to get some answers about his PN issues and his worsening back pain.

I will not bore you with the specifics of the search, as only the result is important and that result includes his having surgery to fuse 2 or more disks in his lower back. I know he needs it, I believe it will help him and I respect and support his decision to have this surgery and I am scared shitless. I know the odds which are very good, but there always remains that unknown variable.

Logically I understand what will be done and why and the expected outcome. But what if…? Nothing is guaranteed in life and the thought haunts me that something may go wrong with his surgery. Maybe he will die on the operating table, or become paralyzed or have his condition actually worsened. Like I said, I am scared shitless.

So we have been doing all the prep work as his surgery is on Oct. 4. He is getting measured for a custom back brace and the commode and walker people called today to coordinate his care. I know he is in good hands, mine, but what if…? I mention it to him and he consoles me but I can see the fear in his eyes, he knows what might happen, but the prospect of relief is just too great of a carrot for him and at some level I know he will be fine.

Then my daughter called today and my journey to insanity was accelerated by light years. It seems that Kate shares a particular gene that has also affected both an aunt and uncle of hers. She has a mole on her back and the biopsy came back indicating Melanoma, stage T3 (out of four), or benign, depending up which lab results you use. After the initial results were split, other samples were sent to both Harvard and some other famous lab that I cannot remember and again the results are split.

Her specialist has decided to err on the side of caution and she will be having some long-ass named procedure in another week or two. Essentially they will remove the mole and biopsy it and then using radioactive dye they trace the lymph nodes that the mole is connected with and remove the pair. They will biopsy them and if benign, she’s in the clear, one for the medical journals and follow up for a couple of years.

The moles in both her aunt and uncle turned out to be benign.

On the other hand, if it is melanoma, we will cross that bridge when we come to it.

The two most important people in my life are going to have surgery and I have no control as to the outcomes. Logic keeps me focused while my emotions are screaming toward that edge of insanity. Unlike most of my Blog, this one is just raw emotion. I needed to get this out for me and no one else. While I realize they will both read this, I just cannot burden them right now, with my impending insanity. I will get through this because they will need me and they represent the world to me.

In my heart I believe they will both be fine. But what if…?

I live in an area that has a very large population of HIV positive men and many of them are also gay. This community supports a few ASOs, charities, newspapers, and establishments and meets the needs of the poz population fairly well. While some of our service delivery can be rather burdensome and degrading, at least most of us have access to what we need.

I wish I could say that for all of this country and certainly for the rest of the world. Yet for all America offers and despite what our government will tell you, we still live in a country that actively supports a two-tiered system of citizens and to some, the HIV community should even be grateful for the tolerance of society.

To all of those who share those sentiments, I wish I could understand what positive people have done to deserve such distain. Here we are 25 years into this pandemic and too much of the HIV community is still pleading for adequate funding of HIV research and treatments. In too many parts of the world, positive people do not even have access to basic health care services. There seems to be plenty of funding for various diseases, yet in the US, HIV still receives flat funding each year even as infection rates continue to escalate.

Again, what exactly have we done to warrant such treatment? In America we seem able to police the globe, yet we have waiting lists for drugs and people have died because the Republican majority is more concerned with issues other than poz people dying. I am not sure what we have done and frankly I no longer care. I am done waiting and for me, tolerance of positive people is no longer enough, I now insist on acceptance.

Tolerance can be defined as having sympathy or indulgence for beliefs or practices differing from or conflicting with one’s own. While that may be enough for some, it is no longer enough for me, nor should it be for you. I am through being considered something to “tolerate”, due to both my sexual orientation and HIV infection. I can no longer stand idly by, while portions of society insist on minimizing my rights and my existence. I do not want their tolerance; rather I am demanding their acceptance.

Yes acceptance, because I have been forced to “accept” all kinds of shit throughout my life and now it is my time to stand and be counted. I have grown up in a world that is overly influenced by intolerant heterosexuals, radical religious zealots, hate-mongers and bigoted politicians. I have had to endure decades of being tolerated and tolerance is not worth anything, unless it comes with acceptance.

My America denies positive people access to many HIV treatments and services, because we are not accepted only tolerated. They believe that by throwing us the bone of tolerance, that we will continue to ignore the hatred and bigotry that way too many of them espouse. How dare some religious groups decree that because of my sexual orientation, coupled with my status, somehow makes me less deserving of access to proper medical care. And how can you justify the same lack of funding and services in many areas on this globe that have few gays amongst their positive population?

You would hope that 25 years into this plague would have educated people, but alas it is not to be. So many segments work overtime to vilify the HIV community and some actually work to promote even more intolerance than we suffer from today. I suppose none of this should surprise many of us, because it is just another example of people using religion to pass moral judgments on societal problems.

Please understand, that I am not bashing the majority of people who practice some form of religion, because they know how to balance their faith with their role as citizen and frankly, I wish there were millions more, just like them. Unfortunately, there are millions of Americans and hundreds of millions of others, who have little use for poz people.

Even our own government is pressuring third world countries to forgo their rights to produce generic anti-HIV drugs, in order for them to gain preferred trading status with the US. Unfortunately you read that right; our own Emperor Bush is supporting a policy that actually penalizes poorer countries for attempting to treat their own poz citizens by producing generic anti-HIV drugs. Tend to your sick or let them die so other parts of your economy will grow. That kind of tolerance is deadly as we witness in the increasing deaths each year.

How demeaning to poz people that the Bush Administration is more concerned with protecting drug company patents and profits, than saving the lives of innocent people. People just like you and me, who happen to be positive and as such we are still considered expendable. For many poz people in other countries they seem to have almost little if any value to so many governments who refuse to accept the facts about the devastation caused by HIV.

So for me the wait is over. I’m done waiting for some politicians to start acting like human beings by supporting adequate funding levels for HIV treatment and services. I am over the preachers, deacons or anyone else who preaches the use of religion to oppress anyone and to prevent the acceptance of all of our society. I refuse to remain silent in the face of any event that attempts to undermine who I am: a human being with HIV.

Tolerance is no longer sufficient and for those who say that it is merely one step on the road to acceptance, I ask: “When you might think that may happen?” Wake up my friends, it has been 25 years and we are still fighting for minimal funding of services to keep people alive. It is time for a change. Funny thing about change, while it remains one constant of life, I do believe you can hasten change, but to do that you have to stand your ground.

It is also important to note the difference between acceptance and approval. I do not need the approval of anyone, just acceptance. Society must be made to accept the fact that all poz people deserve access to adequate medical care. When society accepts all of its segments, it becomes just that much more difficult to then shortchange those segments. Yet shortchange us they do and it can be seen in the inadequate funding of HIV programs and services and rising infection rates..

I believe it is time for positive folks to stand our ground. No matter what others may think, what morality they may attempt to use to demonize us, we have done nothing wrong and we must begin to assert our equal rights. As a person with HIV I demand acceptance by the world and will insist on their involvement to stem this plague.

I’m usually a pretty laid back guy. My wants in life are somewhat simple and I would think that we all share some common desires, such as life, love and liberty. I’m a person worthy of society’s support and respect as I face the challenges of living with HIV. I’ll be the first to admit, that I can’t do any of this alone and so I invite all of you to get involved in whatever fuels your passion.

If you are new to the world of HIV in America, I urge that you begin to understand how the HIV community lives and functions. Take some time to understand the laws and programs that provide a safety net for about one million poz Americans. Educate yourself enough so you will endorse those candidates that have our best interests at heart. Get involved on a local level and help determine the future of your own HIV community.

For those in other parts of the world, my challenge includes you. Please get involved and learn how your country provides the treatments and services it does for your HIV population and where you see problems, work at finding solutions. We no longer have the luxury of waiting for many governments to recognize their responsibility to their HIV population; they have already had 25 years, yet millions continue to die each year.

Acceptance changes much of that which tolerance denies us. Acceptance moves us to the “big table” at holidays and we are ACCEPTED as equal members of society and not as just an afterthought. Acceptance requires society to once again leap forward and acknowledge the needs of a very pressing segment: the HIV community. Sometimes society wants to do what is right, but they still need a push. For millions upon millions of poz folks, we can no longer wait for access to treatment, we can do this and we just need a larger push.

I would submit that for most of the world, the prospects for poz people could hardly be described as promoting a tolerant environment. We have allowed others to silence our voice, thereby denying our existence and absolving society of its neglect for our community. How sad that for many the mere disclosure of their infection can essentially condemn them to death, because those deaths can be “tolerated”.

I’ll agree that tolerance is desired when it serves as a catalyst for change, but that same tolerance can also become an excuse, to do nothing, because they already “tolerate” our existence. If you don’t think we need to start standing our ground, then you have not been paying attention. My goal here is to educate you on why you should be very afraid and after 25 years, why you should be very angry at the present state of HIV services and treatments.

There are people who are actively working to limit our rights and benefits as citizens of this planet. It seems that the reasons for the hatred remain varied, but the end result is always the same: oppression of anyone who does not share the majority view. Many religions views being gay as a “perversion” and too many parts of the world somehow believe that poz people received divine retribution by contracting HIV and you know what they say about making your own bed.

Tolerance is no longer enough. It promotes apathy and supports inaction. It is time for acceptance. The wait is over, the world must step up and confront this pandemic, to view prevention, treatment and services as proper and normal and to recognize the threat that unbridled HIV infection rates represent. I demand acceptance and access to the treatments and services I need to fight my HIV infection. I also believe that we must actively fight any government or politicians that under-fund HIV prevention services, because abstinence-only prevention messages are ineffective and they are draining precious dollars from other needs of the HIV community.

The world has had 25 years to combat this disease yet millions still die each year, because too few people seem to care. We know the challenges, the needs and our right to treatment and services. We know first hand that given the chance HIV will kill us. We have a duty to ourselves and as world citizens, we must insist on the development and funding of effective HIV prevention messages, based on science and tailored for all parts of the world.

Twenty-five years is long enough to wait for someone else to do this. It is time to stand and be counted, because if we do not do it, who will? We are all that we have and more than enough of what we need.

We have the power to do this and the obligation to do so.