I think it is time to dig a little deeper, and tell a little more about my story and my truth, and the realities I now live with, and share some example and painful stories. In 1985 at the ripe old age of 19, a rising star as an elite computer programmer with the US Army, and IBM Trained Systems Programmer with a specialty in Cryptography, and sporting a BS degree from a very prestigious College I was a rising star, with a passion for taking on "impossible challenges". Just trust me on this, I was the shit. The the unthinkable happened. A freak accident at a Water Park in Germany, out side of Heidelberg, where I was serving at HQ US Army European Command. I was rushed to 130th Station Hospital in Heidelberg, with a head trauma, which eventually lead to me being given a pint of blood due to blood loss, which changed and colored the REST of my LIFE! On May 13th, 1985, just two weeks before my 20th birthday, the impossible, the unthinkable happened, I was diagnosed with AIDS after being hospitalized for over a month with an unbeatable pneumonia finally diagnosed as PCP, and given a terminal diagnosis and 3-6 months to live! (My story is well documented, and is covered in Randy Shiltz's book CONDUCT UNBECOMING.) My case also intrigued a young epidemiologist, Major Cater-South, who it seems just looking for a cause. I had no know risk factors for AIDS, I was a virgin till I was married, a little over a year before. My wife was HIV negative, neither of us had affairs. I did not use IV drugs, and all my random drug tests had always been negative. Major Carter-South dug, and finally uncovered that pint of blood I had been given about 6 month before, after the freak accident. (Major Carter-South wrote her PHd thesis on my case, and "Patient Zero, a Colonel that did not know he was HIV+ and ended up infecting 32 other solders because at the time in 1985 the US Army did not screen its blood "ASSUMING" it was safe because it was given by other solders, a closed donor pool! How much is your life worth, well mine was worth $32, the cost at the time of doing an ELIZA screening on the blood which would have detected the HIV, and prevent my HIV infection, and so I became "ANY SOLDER" and Major Carter-South flung me and my wife into a life of AIDS activism.
Major Carter-South wanted to prevent the infection of any more solders and started a PR campaign to force the US Army to start screen all blood donation, which was common practice in the civilian world at the time! I was the perfect solder for her to use, a HIGHLY decorated, elite troop, who could stand the scrutiny and infamy that was to follow. Articles were written, the Stars and Stripes wrote a FULL DOUBLE PAGE article about my case,how my life was cut short and beginnings of a promising career ended by the US Army not performing a simple, automated $32 test that EVERY civilian blood donor bank in the world was already running. Oh yes, I was flung into the spotlight, giving testimony after testimony to congressmen, and sworn testimonies to Congress. A congressional fact finding team came to Heidelberg to visit me and my wife Christine, and once I was well enough to travel was flung with Christine into aq whirl wind of "campaigning" as ANY SOLDER. I spoke to Congress men, I spoke to community groups, I spoke at AIDS Activism groups, which is were I first came in contact with ACT UP.
But my first contact with ACT UP was in New York, speaking to ACT UP/New York to try and get them on board with pressuring Congress to enact legislation to force the Army to screen all blood donations. The Army was still refusing, not wanting to spend the money. It was all about money to them, not lives lost, just green backs! I was very enamored with the work that ACT UP/NY was doing. A bunch of very intelligent, highly motivated people bent on changing the world, and saving lives. So I became involved with them. Geez, that seems long ago now, and ACT UP/NY took up my cause, and there committee that worked on Federal Issues started to work for "ANY SOLDER" to help pressure the military to screen blood donations.
It took a long time, and remember I was very sick, and working hard, being driven by Major Carter-South. Letter writing, testimonies, interviews, articles, presentations, speeches, it was a whirl wind, and eventually we won, and Congress passed legislation forcing the military to screen all blood donations and prevent HIV infections. But a nasty rider of this legislation was the creation of a terrible thing, the NATURAL HISTORY STUDY. Because of the realities of the Military health Care System,and frozen blood storage, it was possible to pin point a solder sero-conversion date to +/-2 month, and so was born the Natural History Study, where the first 300 Solders to be diagnosed were lumped together, and followed, with a battery of monthly tests to track the Natural progression of AIDS. Something that just could not be done with the civilian population. Some of these tests were painful, like evoked potentials, or nerve conductivity tests, some were invasive. The testing lasted a week. It was a nightmare, taking place at Fort Walter Reed, and being lead by what I still hope was a bunch of well meaning research doctors.
My Transfer Back to San Francisco
I have never, ever claimed to have had anything but a blessed life. By my lucky stars it just so happened that my mother went to school with one of the founders of Project Inform. So as all this was happening, and and my story was being flashed in the press, my Mom was active back home trying to se what could be done to save my life, like Moms do! She worked with Joseph and found a promising drug, Penacillamine. Joseph was able to secure a slot for me in an early trial, and my second fight with the Army was soon to begin, getting me transferred from being a caged test subject at Walter Reed back to San Francisco to try and receive a possible treatment.
Another PR campaign, this time lead not by a Major, but by my mother to try and get me transferred back tot he Bay Area so I could participate in the drug study. Another friend of my mother happened to be a Congressman, Pete Stark,l who also jumped on the band wagon and worked to get me a compassionate re-assignment back to SF. Well it took some time, and in that time the flash in the pan that was Penacillamine came and went, but finally my compassionate re-assignment to the Presidio of San Francisco came through so I could die among friends and family. And having been active with ACT UP/NY and ACT UP/DC, I of course went to and joined ACT UP/SF.
(fade in, fade out) Fast forward 20 years
By 2002 I was still alive, having lived through 13 bouts of PCP, and every opportunistic infection known. I was under the care of one of the worlds best healers and AIDS researcher, Dr. Lawrence Boly, (I credit him with pulling me through the worst of it), and fighting what was thought to be my last bout of PCP. I had been hospitalized for some 3 months, was fighting for every breath, LITERALLY, and Dr. Boly came to me with a proposition. Was I willing to do one last thing. My t-cells were 24, my viral load was over a million, and I was seldom very lucid, suffering form AIDS Dementia. But Dr. Boly had heard of a promising new drug in the early stages of human testing, a whole new class of drug, a new paradigm. It had only been tried on 6 humans, all of whom had died, but it worked miracles in animal testing, and he working with the researchers had formulated a new version, and a new cocktail, was I willing to allow them to test it on me. I was tired, I didn't have much fight left in me, and here was Dr. Boly offering me a way out, "for the good of science"! So after much discussion with friends, when I was lucid enough for such discussions, I finally consented to taking part in one last study. The drug company supplied the reformulation of this new driug, Dr. Boly and his friend a Pharmacologist devised a new 5 drug cocktail, which to me sounded more like a football play than a drug trial, in how they hoped to pull and prod and manipulate the virus using drugs I was very resistant to, and some less so. I remember very little from those days, and only have the accounts of friends to go on. But about 3 weeks after starting this 6 drug cocktail of HUNDREDS of pills a day, handfuls of pills at a time! I awoke.When I say awoke, I ,mean truly the fog had lifted, I was lucid, I knew everyone around me, I knew who I was. I was truly present for the first time in what seemed ages.
Blood tests showed that my t-cells had climbed to over 125 and my VL was down to just over 500,000. And so that day in January was born a Lazarus, and the slow but steady climb back to health and recovery began. By March I was strong enough to be discharged from the hospital. I had no stamina, my breathing was very labored, and I was on oxygen, but I was going "home". The start of another nightmare and another story, which will wait for another time.
When I finally was well enough to be re-introduced to the world I began to understand the magnitude of the cost of AIDS, and what had been taken from me. People would come up to me on the street and out in the world, and know me, and I had no recollection of them what so ever. Once as man that swore he was a good friend took me back to his pkace too see videos of me at picnics and events, well meaning and hoping that seeing such videos might trigger memories of said events. All it did was create a PAINFUL memory of seeing me having fun and KNOWING I had no memory of it. What else had I "forgotten", what other memories were gone.
Having been an AIDS Activist, and a public figure I once knew a lot of people, most of whom I now have no recollection of.I withdrew and stopped going to public events it was just to painful to constantly run into people that knew me that I did not recognize. My telephone contact list had over a thousand names in it, almost all of which were meaningless to me. I recognized maybe 10 names in my contact list. And those 10 people started to withdraw from me. I was social liability. I made social blunders. I had a very fleeting grasp of the english language, and lacked control ober what spewed from my mouth. Thinking I was saying one thing, I would speak something entirely different!
I remember one particularly embarrassing outing with a long time, and very dear friend to the Farmer's Market. He was talking to a farmer at the Zen Farm's booth, and it was their last Sunday at the Market before closing down for winter. My friend asked what they did all winter, and I blurted out, "They fornicate." Shocked fthat came out of my mouth, I tried to correct myself and blurted out a couple of more equally inappropriate things. I was trying to say the word PROPAGATE, as in "they propagate the herbs and
plants during the winter so they can be planted in the spring!" Duh! but the word PROPAGATE would not come forth. My friend was mortified, the Zen Monk Farmer was likewise a little offended, and I clamped my mouth shut. It was obvious no amount of explanation or apologies were going to help this situation so I stood quietly while my friend said his goodbyes. That was a couple years ago now, and I only been back to that farmers market a handful of times since.
Rarely now do I go out, and when I do it is with a very limited group of friends, and rarely do I allow myself to speak in public, not knowing what might tumble from my mouth!
HELP FROM THE VA
I have participated in a couple of long term studies at the VA that were and have helped my situation. The first was a sensory stimulation study were I was exposed to all sorts of different sensory inputs to try and regain some of my lost memories. The theory is/was that the memories are in tact within my brain, and the HIV Dementia is interfering with the path ways to those memories. But memories are created based on all 5 senses, so they can be triggered by sensory inuts of the other sense. I in the study I would be exposed to a sound, a touch, a scene, and asked what memory it triggered. This went on 3 times a week for a few hours at a time for a couple of years, and I have to report that the sensory study did allow me to recover memories, and remember new things. Many, many of the sensory inputs did, indeed trigger memories, I found smells to be especially triggering. But all too often for my taste my response was "nothing" , and it seemed to me that the gains were small compared to the amount of time spent being exposed, and eventually I dropped out of the study.
Rather than try to regain "what was" I decided it was a better use of my time to try and create NEW memories, make new friends, and start a new life for myself, not dwelling on who I used to be, but rather learning anew who I am, a Journey of Self discovery!
But that meant I had to go out into the world, and inflict the myself on the world!!
Psycho-Social Recovery
The VA had a new program to try and ease my readjustment into the world, so I signed up. The Psycho-Social Program was like going back to school 8 hours a day, aznd relearning what everyone else already knew. It was a little like attending an AA meeting, combined with CBT training, combined with ACT train, and a little EST to boot! There was even a spirituality component. We were taught about the world, about the mind, about ourselves. For a long time I participated in this program, but soon learned I was just doing more of the same. In the name of recovery, I was hiding out in little classrooms at the VA instead of getting out in the world and interacting with real functioning human beings. I needed to be doing, not talking about doing. So again I dropped out to devise my own recovery program based on doing and learning, and expanding my world.
SF CITY GUIDES TOURS
I discovered the City Guide tours, free 2 hour walking tour of San Francisco history. These tours give me a reason to get out into the world and interact with people, in a pretty safe way. The help expand my mind and allow me to learn new information, creating new memories, and that combined with writing about the tours later that day are helping me with my recall. Taking pictures and publishing those is helping with seeing things in a new light, and writing is forcing me to exercise my reasoning and recall.
CLOSING
The painful truth is that while recovering from a bout of PCP is a simple thing, struggling back from severe AIDS Dementia is not. I have finally, I think come to terms with the fact that I will never recover what I have lost in the way of memories. I am still coming to terms with the fact that those names in my contact list will never again have meaning to me, so maybe today is the day that I finally let go of that one too, delete my contact list, saving the names that do still have meaning, annd just move on, letting go of another painful reminder of who I once was, and instead decide to fully embrace who I am! We will see if today is the day that I am finally able and willing to make this one last big step!
Wed Jun 27, 2012 at 7:53 AM PT: Ironies of Ironies, not more than 15 minutes after I finished and published this diary, I went for my daily walk on the beach, and was mugged, and beaten by 2 men, beaten because I only had $65 dollars in my wallet and no ATM card! Not what they were hoping for. I spent the better part of the last 2 days in the hospital, X-rays, CTs, MRI, and finally the diagnosis of a compression fracture in my already ailing back! I just got home, and will read the replies as soon as I can. Looks like I will be in low gear for a week or two while my already tired and aching back heals from the mugging!
Wed Jun 27, 2012 at 9:41 AM PT: Well, it has taken sometime, but I have read all the comments, AND THANKS YOU one and all for the warm regards. When writing this I had no idea that so many people would read it, or be touched by it. I just really had a need to share my truths, and my realities.
I want to also share that as I walked through Green Apple Books a couple of weeks ago a book jumped off the shelf and landed at my feet, it was titled "When things fall apart!". It has been a hell of a weekend for me, my bag was stolen on Saturday and I lost the book, but had read through it twice. I am now ordering another copy from Amazon < http://www.amazon.com/... >. Another book that has helped me greatly with lots of simple exercises is "JUST ONE MORE THING" < http://www.amazon.com/... >.
These books have really helped me to realize the gift that I have been given, and now am able to see the true gift that the ability to forget is! Living in the moment is something that many people spend their lives trying to do, I have no recourse but to live that way! Beginner's Mind is a state that is sought after by the many, and I live in that state Naturally, everything is new again! A true blessing, that my reading has truly helped me to see.
I have given up my search for meaning, I am truly able to just take one moment at a time. My faith continues to make me believe that everything is for a reason, because to think otherwise would mean that life is meaningless, and I have been through too much to believe that! It is unthinkable for me to believe that this has all been meaningless and without purpose, even if that meaning and purpose are beyond my understanding at this time!