Wednesday, July 19, 2006

I found out this morning that someone very close to my heart is positive. So many people, so many friends affected by this cursed disease. I am trying to remain still, while my mind and heart race. In my rational wisdom I think I am okay. I've been living with this disease positively (pun intended I suppose), but every now and again I feel that crushing sadness. Despite the good life I lead, it still hurts. No one can truly know how it feels or how lonely one can feel. When I heard the news, I sat seemingly calm in my cubicle, staring blankly at my monitor. So many things crossed my mind, namely that I needed to reach out and hold his hand and tell him that I understood. I tried to hold the wall of emotions up. Sometimes being strong isn't about brute force, but about letting things go. I cried like a baby.

I know many people who are positive, but when you hear that someone you love dearly is experiencing and living the same hardship as you, the heart simply breaks. I wrote a letter to him, and I hope he knows that I am here for him and that I am thinking about him. I don't want him to be alone with this. Life is good and I want him to know that I am here for him, if and when he needs it.

Tuesday, February 07, 2006

Counting my Blessings: LTNP

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I count my blessings everyday. I realise how truly fortunate I am to be healthy and to have the life that I have. Although I have been living with HIV for almost 4 years, my viral load and CD4 counts have remained virtually unchanged without medication. I am what the medical community refers to as a Long Term Non Progressor (LTNP). The probability of being a LTNP has been debated between 0.8% to 10% of all infected HIV individuals. It essentially means that there is no symptomatic progression of the disease and that despite being infected with HIV-1, I have not or likely will not progress towards AIDS. This effectively means that I can live a relatively long and healthy life without medication. This of course can change, as a true LTNP is generally only bestowed on someone who has lived 12-15 years with HIV-1 and remains asymptomatic. I am only a third of the way there.

Why am I discussing this? Well, there really isn’t a day that goes by in my life that I don’t think about the disease. One really can’t avoid it. It is with me, coursing through my body, and for whatever reason, I have been spared or given a chance to live a less intrusive life of drugs, medical visits, or sickness. Like I said, I count my blessings, and part of my introspectiveness is that I believe I have to take a role as an educator. Well, not so much an educator as a participant in society and to give back. I am not one to dwell on negative things or to cry over spilt milk. What is done is done, and the question should now be, what do I intend to do about the place I am in now. I have said it before, and I will say it again, the HIV does not define me. I define it, and how it will play a role in my life. Yes, it crosses my mind daily, but I do not (and will not) let it grab hold of my life and drain me of my future.

Of course having just said that, I’ve just returned from my Doctor’s office to get my Viral Load and CD4 results. I do this every 6 to 8 months now. I had originally done it every 3 months, but the doctor doesn’t see a reason, as I am asymptomatic with little change in my stats. I went into his office expecting my Viral Load to be higher and my CD4 count to be lower on account of me having a cold through December and again in January, but as usual the results were better than what I or my doctor thought.

To give you a quick tutorial, a viral load test is ordered when a patient is first diagnosed with HIV. The test result functions as a baseline measurement that shows how actively the virus is reproducing and whether treatment is immediately necessary. The same is done for one’s CD4 count (also known as a T4 Count). Both tests are done continuously through the life of an individual with HIV, whether or not they are receiving anti-HIV therapy. Retro-viral treatment begins or is discussed when a persons’ Viral Load is high. Viral load tests are reported as the number of HIV copies in a millilitre of blood. If the viral load measurement is high, it indicates that HIV is reproducing and that the disease will likely progress faster than if the viral load is low. A high viral load can be anywhere from 5,000 to 10,000 copies and can range as high as one million or more.

A low viral load is usually between 200 to 500 copies, depending on the type of test used. This result indicates that HIV is not actively reproducing and that the risk of disease progression is low.

A viral load result that reads “undetectable” means that the level of HIV virus in your blood is below the threshold needed for detection by this test. This is where I fall into, but this “undetectable” load does not mean that I am cured. In conjunction with Viral Load results, public health guidelines indicate that preventive therapy should be started when an HIV-positive person who has no symptoms registers a CD4 count under 200. Some physicians will choose to consider treatment earlier, at 350. The Centers for Disease Control (CDC) and Prevention considers HIV-infected persons who have CD4 counts below 200 to have AIDS, regardless of whether they are sick or well.

So, since my Viral Load count is undetectable and my CD4 Count is above 500, I have been bequeathed the title of LTNP. The medical explanation of why one is a LTNP is still under major research, but there are some theories. There is some suggestion that it has to do with one’s genome make up. I have been through a battery of medical research tests to provide data to the CDC, NIAID and other organisations, so that they can better understand how an individual’s genes or DNA can resist the disease. But honestly, despite the current research, no one really knows quite why some people progress quickly and others do not. Hopefully the information I provide will benefit research for a vaccine or for Anti-retroviral research. I can only hope and be optimistic that despite having this terrible thing that there will be a Vaccine soon. A vaccine may not help me, but at least I can rest easy then, knowing the virus will have met it's demise.

Monday, June 27, 2005

Revelations and Revisions

Life is often like a staged play. Masks and makeup and shadow puppets. I have been living here on this stage, putting on faces for a long time, but the act is changing, and I am asking that people listen to this final soliloquy.

There are times in our lives where, to put it simply, we need to pick up and move the fuck on. You get kicked in the balls, but you have to get up. Such is life. No one said it was fair or easy, but it is a reminder that you can’t give up. It is a testament to others that you have the courage and strength to continue.

And life has certainly done a lot of kicking in the last few years. I have been beaten done, but risen each time to continue living as life is supposed to be lived. I try to have an optimistic outlook. I keep telling myself if I don’t pick myself up, that I will miss out on something good. Having said that, every year at this time I do feel a bit lost and frustrated. A seasonal mood disorder, if you may, brought on by an anniversary that I would rather not celebrate. An anniversary without much happiness or joy, but with a whole lot of meaning. I become reflective, introverted, introspective and quiet. I know it will pass, but right now I just want to stay here in the darkness, feeling around, looking for myself and waiting for clarity and light to reach my eyes.

I am trying to find that peace again, amongst all the turmoil, rage and sorrow.

I know that I have become a stronger, better person - learning more about myself – becoming more honest and true to who and what I am. Allowing myself to feel and not be ashamed by it. But it’s hard to open your soul and allow the emotions to express themselves when you have repressed them for so long. These last 2 weeks have been tougher than usual and I am doing my best to stay afloat, but so many waves of hurt and pain keep trying to pull me under. I find it hard at times, but just decide to focus on my work and continue with life, nary a person realising what is really going through my mind or heart.

I give a good show a lot of the time, despite the mess behind the curtains.

For three years, I have observed this anniversary by myself. I still find it difficult to speak and share with others for the above reasons. This is the way I have always been, and I am doing my best to overcome my fears of emotional and spiritual intimacy. I have been hurt and betrayed many times in the past, yet I still try to believe in the inherent goodness of people. I believe in that, and it keeps me going. Unfortunately, the unconditional love and support wasn’t always there when I was younger, and invariably I built a defense mechanism to keep people out. It’s tough to change a pattern you have become familiar with, but I know it is destructive to my relationships with others, so I am trying.

It is a working progress.
I am a working progress.

But curtain time is up, and I am taking on a new stage, without the masks, the makeup or puppets. It is time to embark on a different path to more freedom and truth.

This is a story that began, as I said, 3 years ago. The day was June 27, 2002 and this is my story.

There really is no easy way to say this to you all. No way of softening the blow and making it more palatable. So I will just say it. This day, I became a statistic. This is the day that I was diagnosed as HIV+, and I remember it like it had just happened.

The afternoon was humid and the sky an overcast gray. The dank smell of rain permeated the air, but the clouds remained heavy, much like I with my burden and fears. I was riding the TTC Danforth line and looking out the window to the South over the Don Valley on my way to my doctor's appointment. My mind was filled with thoughts of friends, life and my future. Below, cars whizzed by in a sea of green, and I thought of all those people rushing to their destinations – me seeing them, but they oblivious to me. Funny, I thought, how this world looked when you were the onlooker. Time didn't seem to care about everyone's worries. It just kept on ticking and moving forward. I wondered if this was how god saw things, and if he was laughing at the absurdity of our misguided lives.

I remember how beautiful it would have been to be free and flying across that expanse. I was not in any rush to get to my destination and already knew that today was a different day, one that would change my destination and life. I am not a superstitious one, but my dreams the nights prior had foretold that something was happening.

The dreams spoke of change and new paths. A new order and a new me. I didn't understand it at the time, but life has a way of telling you things in remarkable ways, we're just too busy to pay heed to them.

The doctors' office was uncannily still. The music from the receptionists' desk was only an audible blur as I sat in his office. My doctor looked at me, and his expression changed and became as ashen gray as the sky. His voice was authoritative, but soft. He spoke to me and said that he hated to be the bearer of bad news, but that my results had come back positive. His words roared in my head like thunder and my heart raced and stopped in that very moment and time stood still. I sat in shock, hands cupping my face, not knowing what to do or say. His words of comfort fell on deaf ears, for all I could hear was the din of voices repeating that I was HIV positive. I was lost in despair and left his office numb, with no where to go. I walked, feeling the world close in on me. The gray skies calling now, in their thunderous voices and the heavens opened up and the rain began to fall.

Mock tears from heavan, I thought. A god that looked down in disgrace and the irony hit me square in the face, since I had no tears of mine own.

The shock and dryness in my throat sucked everything back in. I walked and got in a cab and went directly to my friend Nomi’s house. The grief and pain was so great, but lodged so deep in my chest, that at the threshold of his door I began to crack. Even clouds can't hold everything in, i thought. And my heart broke and the clouds opened and I began to weep.

I have always believed that a strong person was one who showed little or no emotion. Oh how wrong I was. The stronger person is often the one who can paint a canvas with their feelings with no fear as to how it looks.

Iknow all of this will come as new information to you all. I am truly sorry. I don’t mean to shock and frighten, nor do I want to alarm any one. I am not suicidal. I am not depressed. I am not sick, I do not have AIDS, and I am not on medications. I am healthy. I am fine. I would rather have told each and every one of you in person, but life doesn't always allow us the opportunity to say things when we want and where we want. The fact is that I have decided that I am tired of the lies. Tired of hiding of embarrassment and fear about my status. I didn’t come out of the closet at 15, to go back in it. I have always been an intensely private man, who listens well to others problems, but shares little of mine own. I am keenly aware that if I open my mouth to speak my mind and expose my soul, some may think I am making comparisons of who has it worse. That is not my intention. I am intelligent enough to know that I am lucky and fortunate to have the life I have, and to have a circle of friends that support and love me. I woke on January 01, 2005 this year and knew this year would be different - that I would begin to make great changes and continue on this path of growth to become the man that I believe I can be. This year has had a series of cathartic events and this is one of them. I am for all intense purposes a happy man, with a good disposition on life. I am realising the importance of life with more clarity. There are things you cannot change in this world, and there are things that you can. I have made a lot of bad choices in my life, but I am far more resipiscent now and choose not to dwell on what could have been. I need to move forward.

This is the last hurdle for me.
The last stage of my previous life.

The mask has come off.
And I am not afraid anymore.

It is time to realise what my dreams have told me,

Allow for change,
for new paths,
for a new me.

Thank you to all.

P.S. Please don't worry about me. I am no different than I was 3 minutes ago before you read this, save for the fact that I am more an honest and happy man.

Wednesday, June 22, 2005

"The journey of a 1000 miles begins with one step."

I wrote this October 06, 2004 before I wrote Revelations and Revisions.
It represented a shift in where I was directing my life.


Since having found this HIV/AIDS support site, I've been honest with myself. Far more honest than I have ever been. It was such a revelation, that I had to stop and think about it for a few minutes. Reading and resourcing through this site has opened a new venue of support and a wide range of emotions that I haven't dealt with before. I've only known 2 or 3 people with HIV in my life, and even then it was something that was not discussed, as though we were highschool students discovering our "taboo" sexuality. I've realised with some difficulty that this whole process is not unlike my early coming out years. The fear and trepidation of sharing something so "secretive" with another. The fear of abandonment and loss. It's all the hypotheticals.

"Will they pull away?"
"Will they treat me differently?"
"Will they hate me?"

I suppose it is the idea of loneliness that I fear most, maybe even abandonment. My thoughts wrap around it like a python, trying to squeeze the truth and life out of it. I rack my brains and contemplate how far our society has come since the early 80's and how our society seems to have embraced the Gay Culture. The question is, "Are they ready for HIV?" As much as it is now in the mainstream, it still carries with it a stigma, not only with the Heterosexual community, but with the Gay and Lesbian.

It is a process, and it will take its' time to go through the paces. I will have to do the same. I am not sad, nor am I unhappy. I have no self doubts, but I know that the time will come when I will need to make choices to lift my soul higher. Being in the closet about my HIV is a momentous roadblock. I know that it is the one thing that is holding me back. I have done so much soul searching and it has led me to one belief - that Honesty brings forth peace, and peace brings forth happiness. Honesty to yourself and to others. A great Chinese philosopher once said, "The journey of a 1000 miles begins with one step". I think I have taken that inaugural step.

Courage, Strength, Hope and determination to you all who share the journey.

Life Choices

I wrote this back on September 27, 2004. It gives a good idea of where I was heading.


Life is full of choices and if there is one thing I believe, it's that we should never have complete faith that every choice we make will be right. The only faith we should have is that we are human, fallible and prone to error. Life is about making mistakes, living with them and learning from them. I had recently been reading a number of the online journals on this site and have been moved by the sense that life still has a destiny for us. That we have a place and a meaning on this earth and Universe.

Having been newly diagnosed in the last 3 years, I haven't had the experiences that many other HIV Pozative people have gone through, but I still seem to view things with a certain optimism. Am I being naive or am I simply trying to mask an unfaced fear and an untamed demon? I would love to have answers to those questions, but like life, not everything reveals itself with such clarity. This is not just a period in our lives, it is now a part of our lives. The question is whether it will become your life or will it simply be another layer of your complicated-interesting self. I suppose it's easy to say, when your not on meds, or when your not sick, or when things seem to be going fairly well. I don't have an answer to that either. All I know is that I am here now and life has a lot to offer, as I to it. I am not just living but I am life. Life to my friends, family and to many others. I know even at the worst of times, someone else is in a darker place, and though that does not comfort me, I know that I can't waste tears and pity on myself. Hope is always there, you just gotta dig a little to find it, and hopefully I can be there for someone when they need it.

Disclaimer: These are just random cerebral thoughts, from a Random cerebral individual.