Then & Now...A Personal Reflection
Then
“You’re lucky to be where you’re at” the voice on the receiver echoed in my ear, early one Sunday morning as Ian and I were chatting on the phone over coffee. “I am off to Mexico for a week” he said “to just getaway from everything. It’s all really beginning to get to me” Ian continued. “I completely understand” I responded. “When was the last time you got away on a real vacation?” Ian asked. “Oh maybe a hundred years or so ago in my last life” I replied. We both laughed.
That word “lucky” stuck in my mind. Did he really believe that I was lucky? Granted, I had as yet shown no signs or symptoms of illness, yet I also was told I’d be dead in two years at the most. Obviously he had forgotten that looks were often deceiving. Here I sat balancing on a fence that was getting thinner and sharper as I maneuvered along its seemingly endless length. It used to be that friends would connect on weekends to recap their week’s activities, make plans to get together or just connect and catch up. Nowadays more and more time was being spent talking about illnesses and deaths and how, if at all, friends were coping or dealing with this growing epidemic in our community.
After three or four such phone calls in a day, I wished the phone would just short circuit, taking all that negative energy with it. I didn’t want to and didn’t vent and carry on about my trials and tribulations, especially with those trying to be there and support me. Yet all my time was spent supporting my fellow HIV/AIDS infected friends both emotionally and physically, running around doing and covering everything they were no longer able to do. Admittedly I got tired but continually strived to keep myself in a good space in spite of my inevitable diagnosed reality.
One close friend had recently confessed that he had no idea where he was going to turn when he fell ill as he watched his extended family and circle of friends grow smaller with each passing day, week and month. Yep, I stepped up and said I was there for him unless something happened to me first. I had gotten to the point that I knew my limitations emotionally and where I had to draw the line in order to protect myself, but it seemed most had not. They were so consumed with fears of getting sick and dying that living seemed to have lost all meaning for them. They were drained and defeated.
I know that as time went on and years passed, I was getting more and more tired. Tired of the energy it was taking to stay emotionally, mentally and physically healthy as the circle continued to close in. What is the point I wondered? Death was inevitable….yet that original 2 year death sentence had come and gone twice over and I was still here and still relatively healthy. Long deep breaths, trying to be present and in the moment always helped. None of us ill or otherwise really knew what life had in store for us back then. I chose to focus inward and work on myself as turbulence and death swirled all around me and the community both rallied and deteriorated at the same time. In the hospital one day visiting a very close friend with a noted sarcastic sense of humor said to me “Jayne (an old nickname) you’re going to survive us all”. I asked him why he thought that. His response was “Because you’re so damn stubborn and a cranky old bitch”. I was a little stunned at his response and laughed, but reflecting back now he was apparently right though I didn’t believe it at the time. My response to him was more important to me then – “What fun is that going to be if there is no one around to enjoy it with?”
He died a short time later and in less than a year five more had died, including my father, who committed suicide the day after Father’s Day that year. I was done. I had a nervous breakdown and ended up in grief groups and therapy for the next seven years trying to save my sanity, health and rapidly eroding T-cells. I quit my high tech, nearly six figure job even though I loved it and took a year off volunteering here and there and doing some travel in an effort to sort it all out and regroup. Regrouping took much longer than anticipated, as I really had no idea how long recovery and especially grieving would really take.
& NOW
Looking back on ‘then’, now nearly 24 years ago, I wonder where that life and that person went. Did he evolve and/or reinvent himself, maybe both? One thing I know for sure, he survived. Reflection is an amazing thing. I lost almost every male I had known and along with it my history. By history I mean anyone I had known since my 20s who could validate my reality and where I had been and who I was. All that was left were a few very close women friends that are, thank God/Goddess, still there to this day.
I left San Francisco after almost thirty years in the Bay Area. I had to leave, the city was haunted everywhere I went. Besides, I was priced out, burned out and my remaining friends were moving further and further out into the suburbs and across the Bay. I relocated to Southern CA to be close to my recently relocated elderly mother and to look for a chance to reinvent myself and start over. Didn’t know if I was going to be able to work full time again and didn’t really want to, but time would tell.
Flash forward almost eleven years and guess what? For the first ten years here, I worked harder then I had ever worked in my life and actually thrived in the process, in part I am sure due to the new meds flooding the market then and what I had learned back ‘then’. With each baby step I grew stronger and began to remember my passions, myself and discovered how to differentiate between good and bad stress in my life.
I was a re-invention of sorts and I was different. I was the sum of everything that had led up to this point in time and more importantly, I was no longer a victim as I had subliminally been programmed to be for so many years. I was again in charge of my life, my future. The past was just that – past and anything going forward was mine to design and dream about. If anything, the past taught me one HUGE thing, I am an HIV survivor (nearly 24 yrs now) and considering what I survived, anything could and should be possible if I put my mind, imagination and energy into it now.
I am not saying that it has all been peaches and cream. I have and continue to have my ups and downs. I will be grieving the rest of my life based on the number of losses ‘then’ and even now; but I am now aware and have matured to the point that I understand I am in control of my reality – my disease is not in control. I am now part of the redefined “Chronic Managed Care Conditions” group of diseases. No more pity parties (maybe a small tea party here and there), but those only serve to remind me from whence I have come and where I CAN go.
Life is not about just being, it’s about doing and in doing the two seem to merge into the one thing called ‘life’. I am no longer waiting for the other shoe to drop; I put the other shoe back on because it is my history, my experiences, my long time survival. It is a huge part of who I am and have become today. I live life believing everything happens for a reason. We can dwell on the negative in those things or look for the positive. I choose to look for the positive and granted, it might not be as easily evident as the negative always seems to be, but it is there and sometimes hits us when we least expect it. Like an ‘ah ha’ – I get it now. From that moment on everything is yet again different and we move forward a little richer for the experience.
I can best illustrate this through example. Last year I was laid off from the HIV non-profit I had been working for due to funding cuts. I had seen it coming and was somewhat prepared, yet I had no idea what I was going to do going forward. No pity party here, maybe just a cup of tea and reflection. I knew I would be alright, I was. A year later I am back doing what I love: consulting, writing and a lot of other things and making a living. Not the living I had, but one that is happier and personally more rewarding and productive. There are still issues but they are my issues and I will solve and handle them. In contrast, nothing will ever be as challenging as the past 24 years of HIV survival and what that initially did to my life.
We should all remember that who we are is the sum of our total life’s experiences. I know that is true for me and I have no regrets about anything. The sum of those experiences has made me a richer, fuller and more complex person today, closer to the original I imagined making a positive difference in the world when I was in my 20s.
Wayne Fleisher – Is an independent consultant specializing in project management, editorial writing, career counseling/resume writing and disability benefits counseling. He can be reached at wof47@aol.com
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