Mourning, Death and Dying
One of the areas that set us apart from the healthy man or woman on the street is that when we are diagnosed, we are faced with the fact that this disease just might kill us, Which brings me to the following point, death and dying.
After I had been diagnosed in 1994, the doctors told me that I had 18 months, tops to live, so I better take care of what I needed to and enjoy the time I had left, then I was dismissed to do that. What did I know about death and dying? Not a thing.
I look back now and I can see why this point is so important to stress. When you are diagnosed with a terminal disease, well now, HIV and AIDS has moved from the position of a death sentence to a possible long term management project for living. That does not mean that this is any less important.
Death and dying is not dinner or coffee table discussion, until it directly affects someone or a family member by any degree of separation. I had an opportunity to study death and dying in a university class setting my first year at Concordia University, and my HIV was one of the topics raised in class because I was the token HIV positive student.
One thing that sets the normal human apart from those of us who have been diagnosed with a terminal disease is this, they do not have to think about their mortality until the end of their lives, we have to deal with it from the day we are diagnosed. Once the words are passed to you that you have HIV or AIDS, your life has just changed forever. Nothing will ever be the same. The mantle of responsibility for living has just been laid on your shoulders. Our normal notion of living a rich and full life has eternally changed. What you do with that knowledge is incredibly important.
When we experience a death in our family, or when friends pass on, we either stuff the experience or deny the feelings of grief, or we deal with grief in the ways that so many writers over time have talked about. Unlike the death of someone we know or love, mourning them is different than mourning your own life and death. This idea of the mourning process became important to me “after the fact” because I did not have this tool in the beginning. I could not articulate what I was going through, because I did not have proper education to do so.
Here is the idea, in order to process where you are going, you must first look at where you came from. Looking back at the path you are walking is important because it illustrates two very important ideas, one, that you have traveled so far already and that there are miles to go before you finish your journey. And you do know they say that “It is not about the destination that we should be concerned with, but it is ALL about the journey.”
Each stage of the “journey” is not something you rush through to complete in one weeks time, but I encourage you to give it some thought. Mourning ones own mortality is a totally different experience, as I said from mourning the loss of someone we knew or loved.
There are 5 stages in the grieving process, and they are:
- and Acceptance
We have this list of stages, but these emotions come in various different orders when one is faced with the words “you are going to die!” I know for myself that I did not get angry at first. It was more like utter fear. I froze for a long time, I had no idea how to feel or how to express it, and there were not many wise men or women to teach me about mourning, and so what did I do? I drank, and drank and drank so that there would not be any “feeling.” I was depressed for months in the beginning, then I got angry, and I stayed angry for a long time, but in hindsight that negative anger did me no good, until I learned how to take that anger and point it in a positive direction to help me deal with what I was facing.
Holding on to negative anger about ourselves or the past or where we are or other people is only destructive and serves no purpose but to bring us down and to make us miserable. This was an incredibly helpful tool which I use even to this day.
We all have issues to deal with in our lives, and right now I am concerned with giving you some necessary tools to help you cope with things from here on out. Had someone told me these things in the first few weeks after my diagnosis, I would not have wasted so much time spinning my wheels, “staying crazy in my head.” Into my head is not a place I like to visit very often and not alone or without a hardhat. The only thing negative anger did was to keep me focused in my head, and I could not see what was in front of me, I was blinded by my anger. And that anger directed negatively almost killed me.
There was no denying the very real fact that I was going to die. I had a daily reminder of that for months. I thought I had been prepared for this, I was wrong. The stampede of emotions came on so fast, all at once, that it seemed like a tidal wave hit my beach and I was floundering in water that was too deep for me to hold my head above the water.
I did not shed a single tear in the beginning, because as a young person in my family, we were taught that “feeling” was not something we did at all. Those emotions never leave us, eh? They follow us, through the rest of our lives. It is your job to learn how to manage them properly.
You see, all the issues that we had with self and family prior to our diagnosis are only magnified and the past will directly affect how we deal with our own personal and medical issues in the present and if you don’t get a handle on these truths now, they will affect how you deal with your medical diagnosis and life in the future.
Time is linear and everything that happened to us earlier on in our lives stays with us, no matter how hard we work to either stuff or forget those memories. I have learned in as many years that if you don’t deal with your baggage and if you let it pile up you will be sitting in a therapist’s office until you die.
That’s why it is important to learn that one should not create memories for yourself that you are going to spend the rest of your life trying to forget. Issues from childhood are a major theme in the writings of many people I know today. So let me say this to you, whatever choices your parents made when we were children, we NOT our choices, were they? Everyone has choices, so issues of the past will follow you forward, and if you had not dealt with them before, they will still exist after a diagnosis.
It took me years to figure this out and work on what needed to be worked through. Nobody escapes their childhood, or the sins our parents committed. I know very few adults in my life these days who did not escape having issues with their pasts. It is what you do with those memories and how you choose to let them affect your future that is the key to successful living.
I guess you could say that my addiction to drugs and alcohol was the first sign that I was and had been in denial for a long time, because there was not going to be anyone or anything that would stand in between me and my using. If there was something going on in my life, in order to deal with it, I had to drink and drug that was a very key problem from much earlier in my life.
For that first eighteen months of that portion of my life, I bargained with God to let me live, even though at the same time I was trying to kill myself with drugs and alcohol. I was walking a very fine line between life and the abyss. I didn’t want to die, I was still so young, and I had not even begun to live yet. For the last 5 years I had been on the razors edge. I got involved in relationships that ended terribly, I was broke, James was dead and I was trying to find myself. The one good point to remember here, I had a safe job, in a safe space, with all the safety I needed to help me live.
I was in self destruct mode in those days. A few of my friends had gotten clean and sober before I did in August of 1994. The dominoes were falling in a specific order, my boss had to step in and order me to help myself, and he forced me to deal with what I was going through after James’ death. Now a year later he knew that I was in trouble and he did not want me to die. I got help, I got sober and I started to climb uphill, and I must tell you that it was the most painful and in the same vein, the most wonderful period of my life.
If I could have one thing before I died, it would be a second run through this two year period of my life, not for the bad parts but to relive the good ones.
I have battled depression since well before I was diagnosed, and it is a manageable condition that is part of my daily life. There were times that I felt like I was drowning in misery and negative thought. I began to see a shrink just after my move back to Miami in 1995, and I have been on a few depression medical regimens. They ploughed me with all kinds of pills in those first few years, it was insane.
I had to come to a point that I wanted to deal with my personal issues and not just take a pill and “voila” those issues that were in the front of my brain would magically disappear! wrong!
There is not a pill or treatment on earth that will remove issues or memories from our hearts and minds. And I do not condone nor believe in electro shock therapy. For so many years all I did to escape the present and run from the past was to drink and drug. So long as I stayed in the fog, those issues would be masked and kept in the dark. But what I had to do was a three fold decision.
I had to decide that I wanted to live
- I had to stop using and drinking and
- I had to build up the courage to look at the past and deal with it
Those decisions did not come immediately and it took a long time to build up my self esteem and courage to look at what was bothering me in the present and what issues were dogging me from the past. I have to tell you that many of my problems in my life stemmed from the abuse that was heaped on me as a child and young adult. From the age of 26 through my present age of 38, I have worked on dealing with my past like an adult. And that is no small feat, growing up for me has been a trial and error journey of faith, prayer and hope.
Finally, we look at Acceptance. They say, in the program that “Acceptance is the key to all of my problems.” It has taken me a very long time to work on acceptance, because this key step has been a constant companion in my life. Accepting that I was going to die was an extremely bitter pill to swallow, seeing that I had no family to walk with me to the gates of hell. I mean, that’s where they would have walked me, not to heavens gates.
Getting sober in August of 1994 helped me greatly. The drawback of getting sober brought with it its own pressures. Have you ever tried to get sober in a “gay room” of alcoholics anonymous? Holy shit, queens are vicious when it comes to competition. I had to manage my sobriety, keep up a positive outlook on my life, I had to work to make a living and I had to deal with all the emotional issues that were looking me in the face, and I have to tell you that it was NOT easy by any stretch of the imagination.
My job was secure and my coworkers, my boss and his partner became the family I needed to help me begin to start rebuilding my life, because I had lost a lot in the preceding years physically and emotionally. We were all part of a very tight bar staff at a Levi Leather Bar called the Stud, in Ft. Lauderdale circa 1992-1995. It was the most awesome place to work, and I had the best time.
One day at a time, I walked, I reached the eighteen month mark and I was still breathing on the 560th day. Ok, I lived past my first “death date.” What the hell was I supposed to do now? I had no contingency plan set up in case I lived. I was totally prepared to die. I had accepted my fate and I was going to walk off the living plane with my head held high. From that day forward I have not looked back.
The happy bar existence was coming to a close as 1995, was passing us by, and by that summer it was apparent that things were not working out. The bar owner had, by then, lost his partner, many of our customers and patrons were dead, people and personalities were starting to clash. It had been decided by some that Todd and his partner were to be forced out of the bar, against all of our wishes and hopes. It was a very trying time for me, because if Todd and Roy had left, I was no longer safe and neither was my job. Alas, finally that day came, where Todd and Roy were forced out the door as I watched his friend Ray take control of the bar, and get rid of the one man who helped me and many other successfully fight this disease and live hopeful and prosperous lives.
Soon after Todd and Roy’s departure, we dismantled his house and they packed up the U Haul and left for the bright lights and big city of San Francisco, where they currently live. Many of the bar staff who worked at the stud made the westward journey. I was the one who stayed in the city. I was too young to make a leap that far away from the only place and life I had ever known. The other reason that I stayed in Florida was because I had hoped my father would drop dead sometime soon, I had spent many a night praying for him to drop dead, so that I could reclaim my mother and have her to myself for a few years before I died. I hated my father for many years, but like they say, “things change” and they did for me, I worked through that hatred, and now all I feel is indifference.
Here I had lost my mentor, father and guide. That broke my heart, and I became a holy terror at the bar, my anger knew no bounds, and I was out for total revenge and annihilation of the man who caused this rift in my life. This was a personal affront, and was going to stop at nothing to make him pay. I played the game for a few months, until I got a referral for a job in Miami come Labour Day 1995. I went down for a weekend to interview for a job at another bar, “playing lights.” By that time I was multitasking at the Stud. I was a really great light man. My knowledge of music from an earlier stage in my life helped me along in the profession that I had chosen for that period of my life.
Acceptance! I hated acceptance.
I had lost the stability and structure that I so badly needed during those first years. Now I was on my own. I had to make things work. I was literally “on my own.” I was sober now a little more than a year, I was moving to another city, I was starting a new job, and I had to find medical assistance to stay alive. Miami had begun to build infrastructure to help those who were sick with HIV and AIDS.
I made a few inquiries and visited the Mercy Hospital Immune Deficiency Assistance office. This interview was my saving grace. Every need that I had from that point on was taken care of through this office. I was forced to accept where I was in my life, and I had to make it work for me. I was forced to grow up again. Living with HIV is continual growth process. As you mature you learn and as you learn you evolve. Living with HIV / AIDS is not in any sense a “cake walk.”
It was not easy, but I had an excellent team of people and doctors who helped me along the way.
Acceptance is a daily practice. It comes over time and will make sense the more you work on it, choosing to live, is the first step in the art of acceptance.