November 2004 Archives

One of the greatest abilities that we possess as human beings is the gift of forgiveness. It always amazes me the transgressions against us that we can forgive in others, yet so many of us, are unable to forgive ourselves. Forgiveness can be as simple as moving past issues that barely impact us, to what I believe is the greatest forgiveness possible: forgiving yourself for whatever role you played, in your becoming HIV positive.

I realize this may not apply to many readers, but I suspect that it impacts far more people, than even they recognize. I remember my own disgust regarding my behavior, which contributed to my becoming positive. The revulsion I felt and the self-loathing toward myself, that accompanied my test result. I had tested HIV positive. How could it have happened? How could I have been so stupid? What is going to become of me? Why did I drink so much? Why did I do this? Why didn't I do that?

These and dozens of other recriminations continued to pervade my consciousness for a couple of years. The guilt was enormous. The effect on my life was devastating. I was losing my future, by torturing myself over my past behavior, over mistakes. Mistakes. They sound so innocent, yet their power to subjugate me under their spell was enormous. Maybe I was using my guilt, to shield myself from my reality, or to delay having to accept responsibility for my own future, because I was too busy lamenting the past. I seemed unable to move past those mistakes or the guilt they inspired. I had yet to learn the about the true power of forgiveness. How sad that it took me far too many years to realize, that I alone held the key to my own forgiveness.

So I'd like to share some of the things that I learned on my journey, towards my own forgiveness for becoming HIV positive. It is my hope that you might see yourself in some of my words, or that they may serve to help clarify your own feelings. That somehow, what I learned on my journey can help you to find the power to grant your own forgiveness.

To begin with, forgiveness is not forgetting. While you might want to "forgive and forget", this is often not realistic and has little value. Of course you would rather erase the unpleasantness of your past, but that is just not possible. The real goal is not to forget the past, but to learn from it and to use that knowledge to help yourself and others.

Forgiveness is also not condoning. It doesn't mean that the past was okay or not so bad. You made mistakes, you were hurt; it was painful; and it affected your life. Forgiveness enables you to deal with the past more effectively, yet doesn't minimize the past, but rather minimizes the effects of that painful past. It in no way denies, justifies, or even condones your mistakes; it simply acknowledges their existence.

Forgiveness is not a form of self-sacrifice and it will come when you are ready. It is not pretending that everything is just fine when you feel it isn't. Because often the distinction between, being truly forgiving and simply denying or repressing anger and pain, can be very deceptive and confusing. You either forgive, or you do not -- there is no halfway. And you must be careful to be honest with yourself if you are not ready to forgive yourself. Because it is better to admit to and deal with your inability to forgive yourself, than to just pretend to forgive. Forgiveness will come when you are ready to both give it and receive it.

Forgiveness is not a sign of weakness. Far from weakness, it is a sign of true inner strength. When you forgive yourself you understand that you no longer need your anger and hatred to protect yourself. You don't need the pain as a crutch anymore. You are able to view how your infection happened, the role that you played and to accept that as reality. You don't forgive yourself out of pity for yourself, but because of your own internal strength. Forgiveness for any mistakes you made is something that only you can do for yourself.

Forgiveness is a form of realism. It allows you to see your infection and your role in that infection realistically, possibly for the first time. It doesn't deny, minimize, or justify what you did to yourself, or the pain that you have suffered. It does, however, allow you to honestly look at that old wound or scar and see them for what they are. And it allows you to see how much energy you have wasted and how much damage you have sustained by not forgiving yourself.

Forgiveness is a sign of positive self-esteem. It allows you to put the past into its proper perspective. You no longer identify yourself by your past mistakes. You cease to be a victim. You claim the right to stop hurting when you say: "I am tired of the pain, and I want to be healed." At that moment, self-forgiveness becomes a possibility -- although it may take time and require hard work before it is finally achieved.

Forgiveness is letting go of the past. Forgiveness doesn't erase what happened, but it does allow you to lessen and hopefully eliminate the pain of the past. It allows you to view that pain, in perspective and to accept the pain that those mistakes have caused you. But more importantly, the pain from your past no longer dictates how you live in the present and can no longer determine your future.

Forgiveness does not want to punish you. It does not want to get even or make you suffer for your mistakes. It is realizing that you cannot undo the past and castigating yourself, because of that past does nothing to help to heal you. It is discovering the inner peace that you feel when you just let go of the past and accept your mistakes.

Forgiveness is moving on. It is recognizing all that you have lost because of your refusal to forgive yourself. It is realizing that the energy that you spent hanging on to the past is better spent on attaining your future. You must let go of the past, so that you may reach for your future. You are moving on, not attempting to change the past.

It is my hope that each of you, who need it, will learn to forgive yourself for becoming HIV positive. You must accept your own reality and move past the need to continually flog yourself over mistakes, often made long ago. It all comes down to reality. You made some mistakes, plain and simple. The specifics do not matter, only that you made some mistakes. Granted the repercussions of those mistakes may be grand in scale, but some mistakes should not be judged by degrees. At some point, it is my hope that you can learn to accept any mistakes that you made and forgive yourself for becoming positive. Holding onto the guilt, serves no good purpose, as it just drains your being. Forgiveness: one of the greatest gifts that you can give to yourself. Isn't it time to let it all go and forgive you?

"The remarkable thing is that we really love our neighbor as ourselves: we do unto others as we do unto ourselves. We hate others when we hate ourselves. We are tolerant toward others when we tolerate ourselves. We forgive others when we forgive ourselves. We are prone to sacrifice others, when we are ready to sacrifice ourselves..."
----- Eric Hoffer

With the reelection of George Bush, I think it paramount that more people consider becoming activists. Reality tells us that the next four years will be a challenge for everyone. It is becoming increasingly crucial that the HIV programs and services, that we need to survive, begin to be adequately funded and properly administered. We can no longer assume anything regarding HIV services. Ryan White re-authorization is coming in March of 2005 and we must make our needs known to our representatives, both at the state and federal levels. The way to ensure that this transpires is by increasing the number of AIDS Activists.

Activists are not some big mystery, no secret clubs or special handshakes. They are simply people who actively participate in supporting a cause. They can be found in just about every walk of life, because activists are grown and developed. The care and feeding of activists can take many forms, but the result is always the same: creating the desire in someone to affect change. So maybe you have considered at some point, becoming an activist? That's a personal decision, but one I encourage you to consider, and to that end, I offer three people and events that helped to inspire me and shape my activism.

First, there was Chris. His was the face I saw one morning, sitting in my hospital room, while I was recovering from my sero-conversion illness. He introduced himself and told me he was there, because I needed him to be. He told how he had lived with HIV for a number of years, and he knew that I would do the same. He counseled me on the journey on which I was to embark, assuring me that I would make it and offered his friendship as a companion on that journey. He was the first person to reach out to me, after I tested positive. Where I saw myself as something less than human, he saw me for the scared man that I was and offered unconditional support. It did not matter to him, who or what I was, only that I was in need of a friend and guide. Even with the challenges he faced, he gave of himself freely, to me, a complete stranger.

I began a friendship with Chris, but it lasted only 7 months. The year was 1985 and there were no drugs to treat HIV and he was losing his battle with the disease. A once stunning man, he had been ravaged by AIDS, but his spirit was never diminished. Sadly, I barely got to know him before he was taken from us. His was the first AIDS vigil I ever attended. Regrettably there would be many more vigils to follow; yet it somehow seemed fitting that his would be my first. Chris was the first person that I lost to AIDS and it was because of him that I first decided to give of myself to others.

That is because Chris showed me how; by sharing his mere existence with others he could be so inspiring. The simple fact that he had lived with HIV for a number of years was enough to help me realize that I was not going to die from HIV, at least not anytime soon. Chris is why I share my longevity with others. He showed me how important it is, for the newly diagnosed, to see people like me. It's not me personally that matters, it is what I represent: someone living and thriving with HIV. Chris helped me understand the role that hope plays in living with HIV and for many, my existence represents that hope.

I always look for that expression that comes, when I tell someone of my years of living with HIV. The look that reflects their realization that if I can do it, then they certainly can. Most probably it's the same look I had on my face, when I first met Chris. Chris taught me how one man could affect incredible change, one person at a time

Then there was Grant. He had the most beautiful emerald green eyes I have ever seen. You knew the eyes were the windows to his soul, because his just radiated. Grant succumbed to many OIs, ranging from Kaposi's Sarcoma to CMV and PCP, but you would never know it from talking to him. I swear he would come to group with his lesions uncovered, or his pic line, there for all to see, as if they did not exist. You could see the ravages his body had undergone, but he acted like it was just another day. He wanted to know how you were and how your health was. Never worrying about himself, he was the consummate caregiver, to all those around him. He certainly did not act like someone who was dying of AIDS.

At first, it was really hard talking with him, as I looked at the dozens of KS lesions that riddled his body. Or watched him medicate himself and then clean his pic line during a support group meeting, like you might clean your glasses. At times I even wondered if he was bordering on dementia, but he proved to be wise far beyond his years.

We worked on a number of projects together at our ASO and he was a long-time member, as he had survived for almost 4 years with HIV. So I asked him how he did it. It seemed to me he acted like he did not have HIV, and that is exactly what he told me. "HIV is a disease that I have and I treat it as such, but it has nothing to do with me or who I am". I asked him about his seemingly indifference to his side effects and OIs, around others and he just smiled: "When you watch me clean my pic, you are watching me manage my disease. The pic is part of my treatment and nothing more. If I let myself become defined by my illness, then what do I have left? I want you to remember me for who and what I am, not for what I suffer."

We lost his beautiful soul two months after that conversation and I always remember Grant, for who he was and never because of what he suffered. Grant showed me by example, that I was so much more than my HIV infection. That even amidst great suffering, you can still reach beyond yourself to touch others.

Lastly, is my fondest recollection, from of all places, a Black Baptist Church in Detroit. Members of our ASO had begun going to any place that would have us, to speak about the ravages of HIV and its effect on the minority communities. We were not too sure how to reach the Black community, but we knew that we must try and the churches, being the focus of that community, seemed the logical places to start. So there I was, a gay white male, with HIV, talking to a bunch of ultra-conservative Baptists. The year was 1987 and the Black community in Detroit was sorely in denial about HIV and homosexuality in their own backyard. They were the two words that were never spoken, for fear of acknowledging their existence. Yet HIV was ravaging the males of that community.

So, sheepishly I gave my spiel about the good, the bad and the ugly of living with HIV. I described the challenges and how family and community support were so critical to survival. I implored them to be more accepting of the issues that faced their community and encouraged them to take actions to address those needs. I tried to express to them, the pain of being ostracized by the very institutions that have the greatest influence on their members: their church and their family. I wanted them to understand the pain that their denial was causing their children, the damage it was doing to their community.

You'd have thought I was from Mars. Granted I was a little apprehensive and it might have just been my perception, but I don't think so. The hatred and intolerance that seemed to permeate that church was palpable. Everywhere I looked while talking, I saw looks of disgust and rejection. Undaunted, I completed my spiel, and then rushed to gather my belongings because I longed to be any place but there.

As I am leaving, a small woman approaches me. She stands there for a moment, and then she grabs me and hugs me as if she would never let go. Upon releasing me, she looks me in the eyes and says: "Thank you for helping me to understand what my son is going through." Believe me when I say, there is no way that you could have experienced what transpired and not have been changed. I often wished that I were able to thank her, as she had given me something beyond measure. She had shown me, that even when you feel dejected and that all of your attempts are in vain, you never know who might be affected. Change can still arise from seeming defeat.

After that exchange, I never looked back. I had truly found a passion.

So how do you grow an activist? Are there any special needs they have? No, not really. That's because we are all activists, some just more so than others. Each time you speak up about something, for whatever reason, you are an activist. Activism can be as simple as donating money or clothes or as involved as serving on a Board of Directors, lobbying legislators or maintaining this website.

My choice to become an activist was relatively simple, because it just seems to come naturally. I have been very fortunate, in that many times I am successful in reaching out to others to help them share a vision, because the vision is the key. If we can share the same vision, then the battle is already half won. While we might disagree on how to achieve that vision, we still know that we will work in concert to bring that vision to fruition. That is an important ingredient of activism: sharing a vision. We do it everyday.

Some visions are grand like world peace, yet most probably unattainable. Others however, such as adequate HIV services funding, can sometimes be accomplished much easier than you might think. Activism generally achieves results in small increments, for that is how change usually occurs. Yet the only constant in life, is change. So you could be the catalyst for great change. But you will never know unless you try.

I became an activist for the simple reason that I could. Something propels me, in addition to the obvious sources of lost friends or the enormous needs of the HIV community. I derive great fulfillment from helping others. AIDS activism deeply interests me, benefits the community and myself and it is the right thing for me to do. I never forget that I have been very fortunate, to walk though many doors held open by others and I can think of no finer calling than to carry on that proud tradition.

So I encourage you to find that activist within you. Reach beyond yourself to affect change. Find a vision and then be prepared to move both heaven and earth to attain that vision. Find your passion and let that passion feed your being. Give of yourself to others, however you might, because it is something that will give you many things, but never any regrets.

I went to renew my eligibility for Ryan White services yesterday. It's an annual pilgrimage for Florida residents and always serves to illustrate some new way to debase a human being. The rules and regulations change, sometimes monthly, yet are rarely publicized, so you are never sure of which hoops you will be jumping through to obtain your services. Unlike most other states, which use retail services to provide benefits, Florida had decided to form their own entity to provide entitlement services. Suffice it to say, that I have never experienced a more inhospitable environment, than HIV service administration in the state of Florida.

The only thing that makes this process tolerable are the people who administer the program. They might not be perfect, but they try to soften the indifference of the system and the impact of the interview process. They attempt to bring humanity to a very inhumane system. While they may boast a tough veneer, most are very caring and I suspect the abrasiveness is more of a defense mechanism, to fend off the pain that they must witness almost daily. Many times they are experiencing the new rules with you, so you feel that at least you have a comrade as you negotiate this maze of paperwork. But still you cannot help but wonder: "does this system really need to be this dehumanizing?"

I always prepare myself, many times to the point of absurdity, for my inquisition. I have my photo identification, Social Security and Medicare card, proof of residency, proof of being positive (yes, really) and my latest lab results that include my CD4s and Viral Load. I also have a 6-month snapshot of my financial status, including bank statements, award letters and my 2003 tax return. So I pack up my ammunition and proceed to the Broward County Health Department. I am about to embark into the surreal world of entitlement services.

As I enter the Health Department, I feel like Yossarian, from Catch-22, entering the "Department of Redundancy Department". I remembered my visit from last year and redundancy was an understatement. I had been told that the requirements had been streamlined, but I remained skeptical because the rules of this game are always in flux. I proceed to sign in, and I am relegated to the chairs located in the hall of doom, to await my interview. I know to bring a book and so the next hour and one half passes fairly easily. I glance up occasionally to see my fellow clients. They represent every facet of living with HIV with the thread of commonality being that we each need these services to survive.

Finally, my name is called and I gather my ammo and enter the belly of the beast: the Eligibility Department. A caseworker leads me into the office, but there is no formal introduction between us, nothing to acknowledge that two human beings are actually going to interact. Civility appears to be an option here, as there is not any law that says civil servants have to be civil. The two women, who share this office, just seem numb and indifferent. Worse yet, is that here in the Eligibility Department, it seems that they are actually being penalized for occupying space. The Health Department has outgrown its old home, but these temporary quarters were offensive, even by governmental standards. I no longer wonder why they lack any expression, as two of them have been stuffed into and share a 10' x 5' room. I swear I have seen larger closets.

So amongst this splendor, the interview begins. I am asked for my documents and supporting information, which are quickly reviewed, and it is decided that I will remain in the Ryan White program, for prescription HIV drugs, for another year. But there seems to be a problem with my income and I might not qualify because it is too high. When they look at my private disability statement, they only consider the gross amount shown, which still includes the amount from my Social Security (SS) income that I receive. They use this gross amount, rather than the net amount, which deducts my SS income and reflects the real income from my private disability policy. Instead they take the gross amount and add my SS income, thereby double counting my SS income. I ask why they are incorrectly adding up my income, only to be told that they always go on the gross amount. "But the gross amount, when added to my SS income is double counting", I protest. I receive a look that tells me that I am barking at the moon and I cease any further inquiry. Their look tells me that they know the system is broken, but they know how to work it so your services continue. It appears that accuracy is not as important as seeming to be in control of the process.

The caseworker completes my paperwork and proceeds to scan in each document that I provided, so they are part of my permanent record. She thanks me for my patience and hands me all my documents and instructs me to take them, next door, to room number 10. I do as I am instructed and in room 10, I find a pleasant and efficient clerk, who reviews all my documents and the application and then proceeds to copy every document that the previous caseworker had just scanned. She then takes all these copies, staples them together and tosses my packet onto one of the 5 piles on the floor. She returns my originals to me and as I exit the office, I swear I can hear the Twilight Zone theme music playing...

So from beginning to end, this whole ordeal takes 3.0 hours. Not too bad on the awful scale and I don't have to return, as many clients do. I know the rules and I come armed to the teeth with data. But what about the others who come to apply? Many seem to face incredible challenges, yet who champions their cause? So many just seem to get chewed up and spit out, by an indifferent system, only to return another day to begin the process anew.

I'm all set for another year and I am grateful because the medications that this program provides me, keep me alive. I am very grateful, each month when I pick up my bag of drugs, because without Ryan White services, I would have no prescription drug coverage at all. I also greatly appreciate all the work done by the Health Department employees, even if their methods sometimes defy logic. I never forget that they don't make the rules, but they get stuck enforcing them.

Unfortunately this story does not end here.

That's because, during my interview, I got to see the human side of my caseworker and I was very depressed by what I witnessed. Initially I saw a woman who appeared to be dejected and seemingly uncaring, but as a result of inadequate funding and policy issues, was now a woman who's spirit had been broken and who had been demoralized. She told me that she used to work as an HIV caseworker in another state but had finally been forced to abandon her caseload there, all because of administrative policies. She had become a caseworker by choice and the fact that she was also HIV positive, made her work with Ryan White services seem a natural fit. She enjoyed her work and felt that she was making a difference. She was living with HIV and earning a living by helping others on her same journey.

But then something changed. It became less important which services or how they were administered and rather, the cost of those services were given paramount concern. Ways were developed to disenfranchise applicants and a system that was initially designed to deliver services, became a barrier to limit access to those very services. Where she once spent her days tailoring the Ryan White services to her clients, she was now obliged to find ways to limit their access to those services. Her profession had been bastardized, in the worst possible way, all in the pursuit to save a few dollars.

Having become totally disillusioned, she moved to Florida with the hopes of regaining her spirit and her purpose. She again became a Ryan White caseworker and said it was good during the first few years, but then the ominous signs returned. The accountants had again retaken the castle and the rules of the game returned to limiting services. Funding was tight. All of those requirements that I mentioned earlier were morphing into a barrier to deny services and by default, had again become her mission and her job.

I initially thought that she was a woman who was dejected and uncaring, but what I left in that room was something beyond description, yet still inspiring. Not only had they demoralized her, but they had dehumanized her by their rules and the environment in which they forced her to work. Yet, in spite of all that had been done to her, she maintained her humanity and compassion. Many times during our interview, we were interrupted and she would listen patiently, while some client was complaining excessively about how awful his day had been. When I joked that sometimes her job required great patience, she replied: "For some of these souls, we are the only ones that they have to talk to and I guess today is my day to listen." Even while she labored under intolerable conditions, she still had compassion for her clients. She understood that many times it is the small things that matter, and in life, we each have our own role to play.

But as I was leaving the building, I saw her one last time and as I looked in her eyes, I saw that light of compassion falter, that flicker of caring fading and realized that the system had again, begun to extinguish her inner being. She was slowly being changed, her spirit continually eroded, and again she was required, for her own preservation, to erect barriers to the very clients that she served. Where she once had a career that nourished her, she again had a job that merely sustained her. Her profession was being usurped, again, all in an attempt to save money by limiting services. Once again her compassionate lifeblood was being drained away.

The indifference of politics and inhumane administration of entitlement services is claiming yet another soul... one soul too many.