Joe's POZ Blog

We went shopping for Halloween last night and spent hours combing through various stores for just the right costumes. I have always enjoyed Halloween, after all it is the "gayest" of all the holidays. But after meeting Stephen it took on a new significance. You see, he is a Drag Queen, so he brought a new zeal to dressing up and has elevated it to an art. So we enjoy morphing into something each year and constantly amaze our friends with our zest for the holiday. But my enjoyment of Halloween has another darker side.

As I get dressed each year and labor intensively over my makeup and wig, I almost become giddy, because I am able to transform into someone or something else, at least for that night. My makeup and costume, serve to shield the world from what I have become. My costume hides my skinny and vein-bulging arms and legs. It covers my extended belly that I gained from Crixivan. But my greatest enjoyment is having the makeup cover my sunken cheeks and eyes. For one night it helps me to forget the physical destruction that HIV and the meds have wrought.

By nature, I am not a vain man. While I have been blessed by genetics, HIV has taken a horrible toll. Over the years I have watched my face and body change, with each change being a little more severe than the last. Where I once saw beautiful characteristics, I now see both the ravages of time and of my disease. I suppose it is fortunate that I am not overly vain, because otherwise I fear this destruction would be insurmountable, since there is a world of difference in taking pride in one's appearance and vanity. (Actually I find vanity rather laughable, because one is taking credit for the luck of the genetic lottery, same thing goes for dick or breast size.) But that is not to say that I don't want to maintain the looks that I have been so fortunate to acquire.

Except that it has proven impossible to do. Yet, it no longer really bothers me as it once did. I suppose it is because of all the friends that I lost and how I watched HIV ravage them, up to the bitter end. When I lament my loss of beauty, I need but think of others. Friends who had to endure shunts, ports and feeding tubes, just to maintain their health. Or those who lost their teeth or eyesight to this disease, yet carried on valiantly. I am reminded of those who dressed to hide their KS lesions. And the countless others who have suffered the loss of physical attributes, but through it all, they each retained both their dignity and humanity and by doing so, their beauty.

For even as I lament my loss, I take solace in the peace that my body changes have provided. Which is somewhat odd, when you consider I am part of the gay community that often values vitality and beauty over substance. Through the years, as I witnessed the change in others and myself, I began to see the fallacy in the adage that "beauty is only skin deep". I became capable of looking beyond the body and seeing the heart or soul of a person. Where I might have worried about looks, I was now concerned with that person's health. When I might have worried about what others thought, I was now only interested in my friend and how they viewed the world.

I suppose you could say, that where I once possessed a rather shallow view of the world, it has been replaced with real beauty. Seeing the sparkle in someone's eyes, regardless of the state of the body, because the eyes remain the windows to the soul. Learning what was truly important in life and making friends, not based on how they looked, but based on the caliber of their character. Understanding that beauty in a person is not only what you see, but what they are. To realize, that even with their deformaties, I have been fortunate to know some of the most beautiful people to have ever graced this planet.

So, each time I become distraught, regarding my looks, I revisit my past and everything comes back into perspective. I remember what is truly meaningful in life and bask in the incredible life that I enjoy. I never need to look any farther than Stephen, to realize how truly fortunate I am. Yet, when Halloween comes around, I still get giddy, because for just that night, I get to forget some of my loss and play pretend. But what I enjoy most about Halloween is that I get to morph into this year's fantasy, while rembering what is truly important in life.

Happy Halloween!

Joe

It is the middle of the night and his breathing becomes labored. As I lay next to him, I can hear his body gasping for air. Very gently, very slowly, yet I can hear it. For the last 2 days, Stephen has had really intense hiccups, which many times interrupt his ability to breathe. When they are most intense, his breathing becomes like someone gasping for their last breath. I can only imagine the signals fighting for dominance, in his body, between the hiccups and his lungs laboring to breath.

But I can hear the battle raging and it is frightening. The hiccups come in short rapid bursts that prevent his lungs from drawing in air. During each short pause between hiccups, you can hear him gasp for a breath, yet as soon as he attempts to breathe, another hiccup interrupts the process and the cycle repeats. A few times the cycle was so long and labored, that I was sure that he would collapse from a lack of air. Then, just as quickly as it came, the episode ended, until the next one.

So here I lay, in the darkness, once again privy to this battle. I fear anything that involves Stephen's lungs, because he has had pneumonia seven times and been hospitalized too many times to count. As I listen to each labored breath, I fear it may be his last. Reason tells me that he will be fine, but the fear of the unknown seems so strong, here in the darkness. I feel powerless, knowing that if he has any real difficulty that the most I can do is to summon assistance and then wait for it to arrive.

I wait and soon his breathing becomes normal again. I listen for a while longer just to be sure, yet it retains its steady rhythm. I start to drift off to sleep, thinking of how precious life is and that many times it seems to hang only by a thread. I reach over and rub him and he purrs his familiar sound that he does, whenever I rub him in his sleep and I know that he is fine. My last thought, before sleep overtakes me is I wish that the only thing I feared at night was the darkness.

As a long time AIDS activist, I fear that we are becoming an endangered species. Throughout the last 20 years, voices arose across the globe to ensure access to services, development of treatments and to seek adequate funding for these treatments and services. Yet, within the last couple of years, it seems that activism has decreased dramatically. I then thought of how this group of volunteers could find itself on the brink of extinction. Then it hit me. It strikes me that one of the issues surrounding HIV is the word content. Content is defined as: not desiring something more or different; satisfied; quiet; not complaining. I fear the HIV community has become content regarding HIV treatment and services.

Although great strides in testing, treatment and services, have been made, it seems we no longer cry out and demand further progress. While current treatment options and services may appear to be manna from heaven, I recall the price paid for this manna. It is the direct result of those who were anything but content with the state of HIV treatment. I remember the 80s when AIDS ravaged the gay community and buried too many souls to count. From this carnage, arose a warrior, the AIDS activist.

These activists lead the fight to attain many of the advancements we now have in HIV treatment. They fought long and hard and as they continued to be felled by AIDS, new ones arose. This cycle continued for many years, but then something changed. I don't quite know how, why or even when, but somehow we became content. Content that there were more drugs to treat HIV. Content that drugs were down to 1 or 2 doses per day. Content that less of us were dying. Content, even down right grateful some years, that AIDS funding was maintained, even when levels were sorely inadequate. We have burned out our AIDS activists and their ranks are diminishing. We seem to be content with HIV treatment.

We seem content that someone else would continue the fight to ensure the vibrancy of the HIV community. Content to let someone else do it. But what if that someone, is not there? Who will speak for those that cannot or will not? Who will continue to demand new drugs and treatments for HIV? Who will pressure legislators to maintain and expand the services available to those infected by HIV? Where will the next legion of Aids activists come from?

Or are we all just too content to really care?

I cannot decide what the biggest scourge is that comes from living with HIV? Not the major stuff, like real health issues, or resistance, I mean the side effects that can just total your day. I'm also not talking about side effects that present any real threat to your health, or that will kill you. However there have been a couple of days where I might have wished that I had died. At times, death just seems that it would be more agreeable than tolerating these added dimensions to my existence.

My particular demons are fatigue, nausea, and/or bowel problems. I often wonder, which is worse? Being waylaid by fatigue or to be tied to your sink or toilet? Would you rather spend your day, picking up your face from the payment, or strategically positioning yourself, at all times, in close proximity to a toilet? (Maybe a new use for GPS, perhaps?) But either way, is that any way to live?

Granted I am middle age, but I never remember being this tired. This isn't the tired where you think, "Gee I should take a nap", no, this is fatigue where you feel as if you are living in a fog. You sort of float through your day, about as sharp as a marble and you never feel as if you have awakened for the day. I just plod through some days, dragging my fatigue as if it were a ball and chain.

The nausea comes and goes, but it pays a visit at least 3 or 4 times each day. I've become very adept at gauging how to address it, but it still surprises me at times with how intense it can be. So I juggle the Compazine, yogurt, crackers, bread, Ginger Ale and/or Marinol and hope for the best. Sometimes they work; many times they do not.

The bowel problems have been with me, ever since I started meds, 18 years ago. It never ceases to amaze me, how disgusting some bodily functions can be and I see no need to share any of those horrors with you. I know most of you can fill in the blanks. Suffice it to say that long ago, I had taken to carrying a change of clothes, just in case; I call it my "surprise" kit. Need I say more?

So how do you balance these demons? How do you regain your life, even if for a couple of hours, to get something done? How do you adapt to these changes in plans that many times, come day after day? Sometimes, I am afraid, not too well, other times, not well at all.

I was scheduled to have a busy day today, but when I got up, I felt like a truck had hit me. While I had enough sleep, if you call waking every couple of hours, sleep, I still feel like death warmed over. I drag myself from bed and BAM!, the first wave of nausea hits, almost sending me running to the sink. I steady myself and prepare to start my day. Bending over to put on shorts, however, takes on a new dimension. I always forget that I take blood pressure meds and they make me light-headed when I bend over. So for a couple of seconds I get a head rush and become very dizzy and I sit down. Once it passes, I arise slowly and continue dressing, BAM! BAM! two more waves of nausea hit me and I start cramping. I have not even been out of bed for 3 minutes and I realize that today is going to be an "AIDS" day.

An "AIDS" day is a term that I think all positive people can relate to. Granted you might call it something else, but you know what I mean when I use the term. It's like we have special terms to describe living with HIV, a short hand if you will. When I tell friends that I am having an "AIDS" day, no further words need to be said. I wish I could use the term in public, to excuse myself at times, when I have bolted from a store to find the nearest toilet. It just seems more polite to tell someone I am having an "AIDS" day, rather than I need to run because of my explosive diarrhea. The last term, just does not have the same ring to it.

So I continue my day, I eat a yogurt and my stomach seems to react favorably. But then the cramping starts. Funny thing about my body, but I seem to mimic my dogs; what goes in one end, immediately initiates something coming out of the other end. Yogurt in and something must depart. How sad that the cramping and waves of nausea, that accompany the departure, make me wonder which part of my body should be hanging over which receptacle. Many times I feel the need to straddle both.

So this is how my day begins. I take a Compazine and wait for a while, hoping I can eat something else. But soon my cramping makes other plans for me. For the next few hours I teeter between by fatigue, my nausea and irritable bowels. Any plans I had for the day, or at least the next few hours, have been aborted. Although I am used to it and most people who know me, know of my status, so rescheduling is never a problem. But I hate having such little control over my body, for extended periods. But this is not the first "AIDS" day and it certainly will not be the last.

I often wish there was a way for me to share these days, with those negative folks, who think that living with HIV is some kind of cakewalk. Imagine the prevention message that would make! Alas, not today. I will be spending the next few hours at home, where I need to be, not where I want to be. It seems my body has other plans right now. So I am once again forced to adjust to this virus and its ravages. Sometimes I just wonder how much more of this living hell I can take. Yet, I always plod on and tomorrow is another day, with new possibilities. But I still resent the intrusion and loss of control over my own life.

How I hate "AIDS" days!

Ok, so much for any surprise, I guess the title says it all. Stephen and I are getting married. We have been talking about doing this since the laws in Ontario, Canada were changed, but nothing really came of it. Even when cities in California, Massachusetts and Washington were performing marriages, we just couldn't warm to the idea. Yes we want to get married, but not amid so much controversy. We want our marriage to have significance, but for all the right reasons, not as either a social or political statement.

Unfortunately, the events of the past couple of years, have caused us both great concern and we are exploring options on where else to live, if we decide to leave the States. I have a connection, by birth to Canada, so I told Stephen that I wanted to marry him, he said yes and so off we go to Toronto, to be married during the Christmas Holidays. I am going to get married... to my man!

It will be a somewhat bittersweet trip for me as I was born in Toronto, but then orphaned, adopted and finally moved to Detroit, when I was five years old. Having lived in such close proximity to the city, I visited Toronto often, but I feel that somehow I am coming full circle by experiencing the greatest event in my life, in the city of my birth. I am also seeking to regain my Canadian citizenship and if successful, Stephen will become a Canadian citizen by marriage. Canadian citizenship would also give us access to other countries such as the U.K. and Australia. It pains me greatly to consider leaving America, but events of late require that we keep our options open.

So why is our marriage going to be so important? There are many reasons that it could be viewed as paramount. To send a message to President Bush, that my partner and I are not viewed as 2nd class citizens by many countries of the world. To show the religious right (which is neither) that the quality of a marriage, derives from the caliber of the character of the participants, and has nothing to do with their sex. Or to take advantage of this opportunity to marry, as a grateful acknowledgement to those, who worked so hard to make equal marriage rights a reality. Maybe to further affirm the fact that Stephen and I are no different, and no less deserving of recognition, than any other loving couple. Or to pledge our love for each other and have it not only recognized, but also even sanctioned by the Ontario and Canadian government.

How sad that we must travel to our neighboring country of Canada, to have our union recognized and sanctioned by a freely elected government. How painful to be denied this basic right of equal marriage, by our own government. How disgusting to be discriminated against, based solely on our sexuality.

Unfortunately, our Canadian marriage will have no basis on our relationship to each other legally, in the U.S. We were forced to deal with those concerns years ago, through an attorney and we revisit the issue every couple of years, to keep up with changing laws and requirements. Funny thing in Florida, only your next-of-kin can visit you in the hospital or get your remains when you die. The only way I can insure that Stephen will have control over my demise, if required, is through various legal documents. I even had to will my body to him, so he can fulfill my final wishes. We do all of this because our own government views us as unworthy of equal marriage rights. It refuses to grant us the same 1,428 rights that married straight people receive, and by doing so they reduce us to second-class citizens, as we have less rights than our fellow straight Americans.

It saddens me when I am confronted with such intolerance. I'm disappointed that the president of my own country wants to enshrine discrimination against Stephen and I, in the Constitution, based solely on our sex and choice of a partner. I am being discriminated against for simply being gay. Being denied rights based on my sexuality, which for me is something that could no easier be altered, than the color of my eyes. The U.S. government denies gays, what I view as a basic human right, the right to marry the person of your choosing.

But no matter how frustrated I am with the lack of equal marriage rights in the states, our marriage will also let me show the world and reaffirm to myself, that I am worthy of those things that are truly important. I'll be able to reach out and grab that ring of matrimony as I ride the carousel of life. For once, even my HIV will be unable to diminish my life, and during that brief respite, I can just revel in the moment. Nothing can tarnish our marriage, for nothing will diminish the love that Stephen and I share. We don't need anyone to validate our love for each other, but the recognition of that love will be fulfilling. A little acceptance can go a very long way and meaningful recognition can sometimes come from the most unlikely of sources.

Yet, why our marriage is so important, comes down to something that is much more personal. I am not getting married to make a social or political statement. No, my marriage, will allow me to fulfill a life-long dream: to publicly commit myself to my chosen mate. It gives me the opportunity to express my love for Stephen and pledge myself to him and for us to be recognized, solely on the basis of that love.

I'll be able to speak some of the most powerful words, that I will ever say, to the one man that I long to hear them. I will pledge both my heart and soul to Stephen and know that they will be held close and cherished. To share that special bond with that special someone. To know that Stephen and I will love and keep each other, for all of the today's, tomorrows and forever's.

To marry the man who makes my heart smile, that is why our marriage will remain forever special.