David's POZ Blog

Never allow yourself to think that ''most of the world looks down'' on you - or anyone else labelled as HIV Positive. They who would are in a minority but they may be more vocal, I think - and so we imagine them as huge and terrible and more numerous than they are.
We let them impose on us and try to carry it
on our own.We forget to use our collective voice as it was intended .

When I began to talk openly about HIV , I found people supportive. They were shocked and uncomfortable in the way people are when outside of their comfort zone- unsure of the right questions to ask - eager not to offend, alienate or seem ignorant.
I found that the people who were most vocal in their judgement of 'us'..
while taking longer to let down their guard , were often a revelation in terms of how their attitude changed when they had a human face to
associate with the enigma of sexually transmitted HIV. They often turned out to be the most willing to 'amend' their judgemental attitudes .It might have taken six months or so and some tactless blurts and blusterings but they got there in the end :)
I never let their comments get under my skin as I know that when I was first diagnosed I stigmatised myself ... I wouldnt let myself depart the loo without a reconaissance mission to slay all bugs, never visited friends with children and abstained from sex dating and contact with support groups - I was bona fide virgin territory all over again and people gossiped as they do and said I had gone off to join a nunnery in a life changing U Turn as I had been a singlemotherloverofanother before and before and before and it had all come to nothing - except the stigma of HIV . I thought about getting a tattoo , I was so inflamed by the injustice of it all at the time drop kicked as I was into the limelight of unbearable disclosure brought about by separation custody battle and public reveal of HIV status.

I was not discriminated against in work - people behaved the opposite - they went out of their way to see how to help me progress with ease , gave me time off when I needed to go to clinics and arranged for me to make up hours or work from home.I know I was lucky in that respect.I worked hard.
I became an honorary member of a former bosses family - an endorsement I didnt feel I had earned ,but a wonderful gesture.
When she had her last child she gave her to me
to hold and feed - something I had avoided doing with other peoples children for fear of what they might think 'when' they 'found out' I was 'diseased with hiv'...(my narrative to self).

I have tripped over the odd bigot in a halo but I truly believe that most people want to
engage with us and want to understand better what it means to be cast forever as hiv positive - how our health is , what obstacles we face and how things can be improved for us.

I am a sceptic in terms of much of HIV conventional wisdom but I respect all people who live with the label and those who try to tackle the spin off issues. It is a life sentence whether economically , privately - in the bedroom - or medically . For those who are trying to cope with serious addiction, homelessness and depression or families with low income - it is very very hard on them.
They lose in more profound ways as they struggle to cope with side effects and inadequate care: home help being a major one.
Today I read a letter from a friend who told me how he lay on his floor covered in excrement and threw up , unable to call an ambulance after an unexpected reaction to his treatment. He lived alone and had no one to check in on him as he adjusted to a difficult regimen from home, in the early days of his initiation when meds were hard to keep down for so many.

HIV is not a dirty disease , or a disease of sexual overkill, deviance or any depravity.
If we were to chart the bedroom behaviours of all adults over the course of their sex lives in individual chronological order we would probably be
surprised at what it would reveal .....
Thats not to advocate for a national 'shag.it.all' fest with no holds barred...:)
AIDS can have causes other than HIV or in addition to HIV. This needs to be discussed more carefully and perhaps in the ''normalization process'' we keep hearing about , the medical establishment might step down from their lofty perch and concede even a little that AIDS is a
syndrome brought on by many factors unrelated to the sexual - it would go such a long long way to diffusing the panic about universally fatal HIV - and its carriers. Us.

I met a french woman at a meeting to charter a bill of rights for hiv people once. She had had a stroke brought on by her treatment. She walked with a stick paralysed on one side of her body, her child shadowing her, his eyes never meeting those of another adult, but he had an unusually gentle face - soulful.
He was her constant devoted silent assistant and I am sure part of that was the fear of losing his only family, as she was a single mother living in a foreign country.
She sang her heart out during an ice breaking exercise ,no bitterness, no self pity and no anger. I never met anyone who taught me the meaning of humility as being in her company did. Typical mother - getting on with the job of living and rearing -
alert, scarred but gloriously alive still.

She came from a different era of AIDS 'knowledge' and treatment.
I didnt have to go through what she did in her belief that something better would come along -not for herself , but my peers and I -other more recently diagnosed/ medicated novices of this underworld of HIV pathology.
I have friends in both the mainstream HIV thinking and in dissident/ denialist thinking -
there are many offshoots in both camps.I take it all in my stride and value them all for their true felt convictions .
Every one has something of value to contribute to the discussion of our lived experience of HIV - treatments, illness, recoveries , breakdowns , bounce backs, questions , fears , criticisms - all of it. They are the threads from which we will weave the new fabric of our life - and our individual survival, our family survival our childrens too. Nothing about it should be taken lightly - we have been singled out and marked apart but in no small way by a kind of self fulfilling prophesy that begs deconstruction - again. My own humble opinion.

Sometimes it is good to take a walk on the wild side and keep that 360% view.For a rainy
day when the sky falls in and all you have left are your principles.

It is funny how old soliders who have fought wars when face to face with the 'adversary'.. in their twilight years, find they gain a
lot from sitting together and sharing their memories. Even when they have shot at each other. They have a devine sense of providence and know in the end that they were both in the same boat- on the same side- but it takes a retrospective chinwag to reveal that little nugget of truth without losing face.

You are feeling sorry for yourself and bragging at the same time and that is a very unattractive combination.

I like what I read. I had HIV for 20 years and as the person stated it no walk in the park. I just have one rule never,never,never quit

I don't think anyone who is also "on this journey" called HIV has the right to criticize your blog or how you deal with the everyday stresses that come with being a long term survivor. I have been positive for 11 years and have known many men and women infected since the 80's that watched their friends die before new drugs came on the horizon. One lady described going to her group meetings as being akin to the "funeral of the month" club due to so many participants dying between sessions. I feel I am one of the lucky ones since I diagnosed in 1997, right about the time protease inhibitors and other new drugs were hitting the scene. It was around the time I found out I was positive that I met a woman who told me she had been positive for 18 years. Since I was still in the early shock stage of my own diagnoses, meeting her put a face on HIV/AIDS that was NOT a death mask. I was sooo busy at the time running up my credit cards and giving my worldly goods away in anticipation of dying soon that seeing her beautiful face, stopped my ridiculous behavior dead in it's tracks (for want of a better phrase!!). Her name is Joy, which says it all. I have since moved away from the area where I first seroconverted and first met her, but a day does not go by that I don't think of her and remember her in my prayers. Meeting her gave me hope, in what I thought was a hopeless world. I have since moved back to my hometown, (a small resort town in the California mountains) and unfortunately I have gone back in the closet to protect my new husband and 14 year old son from the stigma that HIV brings. I miss my vocal days up north where I participated in such programs as "Positively Speaking" at local colleges and a prevention program on the mean streets of Portland called "Sisters Connect". Being a part of such programs gave my positive status a positive purpose in my eyes and helped me cope. I am still doing ok,,since finding a good doctor down here that really listens to me. The few people I have disclosed to still have alot to learn. I hate it when folks find it easier to talk about me then to me. Pisses me off,,,but society still has a long way to go.

It seems like a long time ago that I was diagnosed in the mid eighties and yet like it was just yesterday. I still feel the fear that permeated that time. I still occasionally feel the anger that came along with the fact that no one was listening to our cries for help. Now, some twenty years later, I hear indifference and my anger is now tinged with sadness.
Last year at the AIDS, Medicine and Miracles retreat we were asked to stand if we had lost others to AIDS. Numbers were called out; 10, 15, 20, 25,30,as people were sitting down counting off their losses. When the number 45 was called I was the lone person standing. I was asked the number and I responded, "46". In the 80's when people around me were disappearing I was angry. Instead, that day last year, I had a deep sense of saddness.
Despite the fact that people still die with AIDS I have hope. I am now filled with joy that I am here today and I plan on being here tomorrow. It now also occurs to me that having this hope got me through the really tough times back then, will get me through these times now.

I had a baby girl 7 months ago. A beautiful, healthy, HIV-NEGATIVE baby girl.

She amazes me every day. I had my tubes tied at the tender age of 22 - 9 months after my diagnosis. At that time (1999), the chances of passing the virus to a fetus was 8% - too high for me. After I met my 2nd husband (who's negative), we looked into our options. I had my tubes un-tied (re-assembled?) and got pregnant (via in-home self insemination) 9 months later.

Today, with the proper treatment and medications, there's less than 1% of passing HIV to a fetus. My daughter was over 8 pounds when she was born. There's not a thing wrong with her - thank God (and modern medicine)!

Share our joy at www.mayanoa.com

-Erika

Davids bloging about 28 years makes me feel like chicken again. Both my partner and I like good little responsible new york city girls trotted our selvers out a few days after we met on July 11, 1988....yes only a measly 20 some odd years ago. the following week we anonomousely tested positive and looked at each other and agreed it could have been worse, one of us could have been neg ...thats true love.
The following 2 decades would find us rollercoastering to our demise during the insanities of the eighties , followed and usually hand in hand with continousely burning the midnight hours in our sucessful carreers and bisiness ventures. At first we would prepare for our demise as we had burried so many friends in those dark early years, like any good litle boys we would spend our last days sunning in south beach and traveling the world..well it wasnt long before we were informed that this was not the case and that we'd have to live a bit longer than we had planned for...making get off our hinies and start up businesses to sustain the vacation of death life style we were accustomed to.
after many years as pillars of the community ,running our businesses, and giving generousely our time and money, and never missing a cicuit party, where ever we coukld find one...including the first gay pride in puerto rico, being at every port that shristopher cilumbus hit in 1522 , we jetted to each destination in 92 just to see the faces of all those sailors who's facial expressioned of confusion would hit them as we waved to them from new york, to puerto rico, and spain.
the over the top exobetaant lfe style would run us so ragged at one pont we would be at our deaths door, when maraculousely a breath of life would bring us back with no promise of surving the current tragedies.
because of the nature of the how any good news could turn quickly into a sour note as our fragile bodies would turn on us we would again after a very good ten year run wind up agagin where we started with out medical options and peeket out looks.
our next adventure would make us more sensible, starting a new in the country , away from the electric cities of new york and south beach, and make us conservative frugal country gals recovering from their whirlwind past.
Now as we live about the most boring place we have ever lived , with a cultural cacume that would make kansas look like a capital cultural center, we have started yyet again up the very steep climb to new carreers that will allow us to once again run with the bulls and work toward moving back to civilization after a 6 year sebatical here in Floridas Nature Coast, a new plan in hand a new dreams...again....a road we have traveled over and over again, just to hear the same thing from our clients , friends and neighbors....no way you can't have that decease, you both look so well, its amazin that your type can live through to tell your stories of adventure all the while awaiting your demise.
it gets real tired, maybe I'm an ingrate...but I really wish I never hear those words uttered by another 28 year old indian doctor who gives me the third degree about my first time.

JOHN J Peransi

I Was Diagnosed Hiv+ In 2000 And Spent 1 Year On Meds, After Responding Well I Took A Drug Holiday For 6 Years. Due To Uk Guidelines I was not Recommended To Resume Treatment Until My Cd4 Count Dropped To 250, I respected This guideline and was Happy To Be Drug Free.
In Retrospect The Last 2 Years With A cd4 Under 400 Were Hell. I Basically Went From one Minor Illness To Another With No Quality Of Life. Since Resuming Meds In October 2007 I Have Not Had A Days Sickness ( Other Than The Usual Meds Reactions)ANd A Normal Life Seems Possible Again, The New Regimen In Comparison To What Was On Offer In 2000 Is A Breeze. My Conclusion Is That Firm Guidelines On When To Start Treatment Should Be Softened To View Each Case On An Individual Basis. Constant Minor Infections Caused By A Low Cd4 Made My Life Intolerable And Me Intolerable To Those Around Me..Stay Well, Simon.

After living with HIV and facing that adventure I was diagnosed with stage 4 non-responsive hodgkin's lymphoma, no chemo treatments worked and I have had to have a stem cell transplant which I am currently trying to live through. It is a very discouraging thing to purposefully completely destroy your own immune system after struggling for so long to try and prop it up, but that's what they do, they annihilate your bone marrow to destroy the cancer. So I lay here with no counts at all of any kind across the board, and a virus in my cells waiting to pull an all night free for all on what's left of me, and wonder how I will survive. I used to say "it can't get worse than this", now I know never to say that again! I watch the city from my window and I wait...I can't stop what's coming but I can remember what fun I had in this life, and how much I loved life. Props to all.

apology to ''mike'' for coming across as
self pitying and bragging - i certainly
didnt intend it.

many people i knew of opted for suicide
they were so afraid of the end and very
isolated anyway.

i did housecalls for people like this and
wrote to them for company . i feel for their
experience and that is all.