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Survivor's Fatigue
Jul 2, 2014

I'm writing this because of the person who wrote that they recently tried to commit suicide and is HIV+, and who lived through all that black nightmare as many of us have. I did not test HIV+ until 1997 so I became positive when the first line of meds were available. However I also lived through the 80's and first half of the 90's in NYC, Boston and San Diego so I saw my share of friends and a very loved partner die. Those were indeed dark, dark days. I try not to think of them often but a movie, a song, or even thinking or dreaming of my ex-, who died of AIDS in 1994, will bring me back to it. And it's always devastating. I don't think it's any less devastating now than then in fact.

I feel survivor's guilt when I see all the things I could have done over all these years being HIV+, should have done, was able and competent and intelligent and educated enough to do with my life. But when I found out I was HIV+ I put my life on hold. And I haven't restarted it since. Being amongst the first wave of HIV+ to have retrovirals we we're even sure how long they would work on us, and most certainly not about all the side effects they would have on us, most not visible, but others very visible. And I often wonder, now that I've hit 50 years old, why am I struggling to take all these meds (I have a total of 9 daily now...only 2 are for HIV) and trying to keep myself healthy and alive when I live the life a a hermit? And what's more, an unhappy, unfulfilled, sometimes angry hermit who can't really find anything to live for. I've even isolated myself from people and after moving from NYC to my home area almost 4 years ago I've managed to not make any friends here. None. And I feel it's just going to get worse. Recently I had to add testosterone to my daily medication regimen and as soon as I get myself to the doctor for an A1C screening I know I'm going to be put on oral diabetes medication. I mean, when is enough enough? What is the reason for scraping to stay alive and healthy when there's nothing to look forward to but more chaos, uncertainty and pain? And now that I'm older I fear my parents dying soon and having no support system at all. I've no family here, they are on the West Coast (I am on the East Coast) and in Europe. And they don't even know I'm HIV+. I fear what I will do as I (possibly) get older and have no one to rely on but myself as I get sicker and sicker or become disabled. It just seems like a lonely, black hole out there for my future. And being in a non-metropolitan area there are very few resources for someone like me here and even only a tiny gay community which I choose not to get involved with (been there, done that). It all just seems so hopeless.

So to the person who tried to commit suicide, I can understand your attempt both through living through the 80's and 90's and having to live with this now. I'm not saying I'm thinking about or planning to commit suicide myself, but it does seem like a viable option. I think that you are right that we are suffering a sort of PTSD, both from the past and from the present we live. But there don't really seem to be any answers or solutions out there (or in here...in me). And I don't know how or can't change my thoughts and feelings about all of it. All I know this is not the person I wanted to be and I feel like I've let HIV stop my life, hopes and dreams. But even if I didn't let it do that, it is fully able on it's own to do it on it's own. I'm not big on talk therapy so I'm even indecicive on that front in looking for help. I feel like, since I became HIV+, that all has been a waste, constantly worrying about everything, not only the disease itself and the eventual, accompanying diseases and conditions, but thinking "How long will I live?" when considering changes of all sorts thinking I'll probably be dead or disabled before I can get to whatever it is or finish it, or at the very least disabled.

I am also ashamed of all of this that I'm writing to you because I can only imagine all of those that died, and continue to die, of HIV/AIDS, probably are looking down on me thinking what an unappreciative ingrate I am, how I've wasted 17 years of my life, and how they'd kill to have the chance to be in my shoes. That is guilt. And I'm afraid that what comes around goes around and that karma will find it's way back to me eventually and teach me the hard way for being so unappreciative of the life I've been given.

So this is not a question, just some more insight for you on how some of us are not doing well out here and not knowing how to do a thing about it. I don't expect any great or miracle answer from you. But perhaps being in the position you are in in the community you have a bullhorn or sorts to make doctors and psychiatrists and social workers, etc., who work with HIV patients more aware of what we're going through. Honestly, our doctors, no matter how compassionate and understanding they are (I have a great one), are constricted due to time in scheduling and meeting patient quotas and bringing in money for their hospitals or practices to spend the time they probably would like to speaking to us.

Be well.

Response from Mr. Vergel

Your email is probably the one that has hit me the hardest since I started writing for TheBody.com . All of what you have said, every single thought, has come through my mind at least a few times per month. In fact, it has been there in my head since I went on disability in 1994.

The biggest challenge I have is learning how to manage those "beliefs" that go through my head. My inner demons.

I sought refuge in writing (I hate writing, by the way) to help others since that gave me a life purpose and got me out of my head. But even helping others cannot sometimes shut up that voice that tries to rob me of my present.

I do not know what would have happened if I had not learned methods to deal with my negative self-talk. I would have killed myself through 3 back surgeries, cancer, a neurologic disorder that made my right hand hard to use, multidrug resistance, the constant craving for my old status as a chemical engineer for Shell, my not wanting to take risks because it may not be "worth it", and much more. I still have to deal with all those feelings. But I am highly aware now about how much power I have over the decision to be in this reality. I am slowly but surely becoming a friend of my reality instead of its enemy.

I have found great help in the book "A New Earth". It shifted my perception of the moment. I paid for 20 guided mindful meditation sessions to learn to breath and enjoy the present when everything else seems against it. I am successful more than half of the time but now enough to actually have better days than bad days.

Also, taking the Landmark forum curriculum gave me tools. You may want to check it out. I really think that work saved my life and empowered me to open a non profit and write 3 books even while fighting my inner demons. We all need tools.

The Landmark Forum- Nelson's pick for a 3 day accelerate mental change

I have also done the advanced course and refreshers. Like a muscle, our mental awareness tools have to be used and reminded.

Thanks for sharing your special email to me. I can't say I know what you are going through but I can say that I have my taste to your experience. Some of us never really "arrive" at the moment of extended peace and happiness but many of us keep walking on the path to that elusive place.

I just replied to someone else with detailed tips:

Do I want to die?

I think it is time that we all got organized as long term survivor. There may be over 50,000 of us in the United States alone. There is a movement happening in San Francisco now with this group Let's Kick Ass. Hopefully some of us can replicate what they are trying to accomplish in San Francisco.

Please stay in touch and thanks again for your post. It really touched and affected me. I can help but there is such limit in not knowing everyone's particular circumstances. But I think reaching out is one of the first steps to overcoming adversity.

In health,

Nelson



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