HIV LONG TERM SURVIVOR AWARENESS
June 5th, is now officially HIV LONG TERM SURVIVORS Awareness Day, we can find many reasons why this date was created, or we can ask Ted Anderson, because we was the one that put the date on the map.
What we have no doubt is that it was necessary, because somehow, many HIV LONG TERM SURVIVORS like me, we found ourselves “ standing in front of the emptiness” , frozen, our eyes lost in the horizon.
We never expected to grow older with HIV, and society didn’t expected us to grow older either, but HERE WE ARE, starting to have problems with mobility and drinking prune juice; our hair is turning white, and our vision more difficult, glasses hanging from my neck…..WHAAAAAT? it seems more usual to hear in our conversations, trying to understand what we don’t hear well.
What it hasn’t change, is that we keep taking our HIV pills every day, but now we include others for heart problems, TUMS are in our pockets, loose dentures, (HUM) and yes, we take naps more often.
What it is changing is that when we go to our doctors, we use to hear that the cause of our health problems was HIV, but now, it seems before HIV, we hear: “AH, it’s just you growing older”. But, NO, NO, NO, we have to keep reminding our doctors, social workers and society in general, that in our case yes, no doubt we’re getting older, but we also have the combination of HIV has been in our bodies for a long time, we’re the ones, for the first time, living this longer, and we might died of old age, but taking these pills. So, yes, the HIV, and what about the LONG TERM EFFECT of the medicine in our bodies, finally seeing what is happening to our bodies and MINDS after a daily dose of our cocktail.
My memory is getting worst, that is a common part of our latest list, but also our emotional state seems to keep us in more isolation and loneliness than ever, because our depression, anxiety, Survivors Guilt, PTSD, and many more beautiful words that dance around us even if we want to evict from our existence those dancers.
I was talking a couple of days ago, that I believe maybe 10% of the HIV LONG TERM SURVIVORS have no problem at all, and they live a “normal “ life, they go to the gym, look fabulous, have a 9 to 5 job, and much more.
Then, we have maybe around a 20% of us, who are sick all the time, even if our t cells are almost 800, and my viral load is undetectable; the people in the hospital they even recognize me, they know WHO I AM!!!!! What? Not the best popular group, I mean, love the doctors and nurses, but I would prefer not to be there too often.
And in between, there is the 60 / 70 % who get sick sometimes, but not too often, and they might have also some mental issues, but more in control.
So, there you, go the extremes and the center, and the mix of all of the above.
I’m here, standing, not because I am and was honor to be part of the documentary LAST MEN STANDING, but because, in some way, I do feel lots, alone, pushing every night the word HOPE to the top of my head, and yes, I SMILES, but I cry a lot.
Oh well, I want to leave you for now, with something I heard and is so so incredibly important, my friend Paul Willy from Denmark, told me that is very important to tell clients, meaning all of you HIV LONG TERM SURVIVORS, that many times is not your fault that you can not cope with life, with the stress, with society, yes NOT YOUR FAULT. I’m the first one who talks about responsibility, but in this case, of SURVIVING, living longer, growing older with HIV, our actions and reactions might be guided by HIV and medicines.
As the founder of the HIV LONG TERM SURVIVORS group, I constantly write “ Family, LOVE and THANKS”, and I promise you, I mean it; you are one of my families, and this is a very strong family. I’m closing my eyes right now, and it is a beautiful garden, full of all kinds of flowers, that need water and we need others to cut our dry leaves and take away insects. But this garden, is a garden of people in our his/herstory. WE MATTER, and we’re in this together. LOVE and THANKS always.