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Heartbreaking
May 12, 2006

Hiya Dr Incredible,

I was just reading through the archives, here and on Fatigue and Anemia, and God, some of the stories (including yours) are so amazing. How do you do it?

My heart really goes out to some of the folks here, especially some of the ones who are really no more than kids, who are living with this disease, sometimes in really tragic cirumstances, often alone. I'm thinking of Jake, (he's 19, I mean, 19!) Penny, (hardly older, 21! At 21 I was in college, not hospital), the guy back in Feb 2002 (27 - wanted to know if he's make it to 50 - do questions get much more poignant than that?) who sero-converted and was worried about his niece...and so many many more.

I think it's especially tragic that these kids get infected when it seems they've already been dealt some tough cards in life. (I know we don't know all the details, but you can get a general picture). It's just heartbreaking.

So how do you cope with responding to them? Just reading about these kids I want to give them a cuddle, and a shoulder to cry on. I want them to cry! They're so hopelessly brave! How do you do it? Does it make you feel this way? Or can you distance yourself from it? I contacted my local ASO because of you, and am volunteering, doing everything I can, but I just wish I could reach these tragic kids who don't seem to dare come to us. It just seems so sad that they're the ones who need us the most, but we can't help them.

I've also done some work with foster kids, and the similarities are striking. They all desperately need love, and it's just not there. And these kids have the added challenge of a cruel and ruthless disease.

So thank you for helping them. I'm doing my best to join you! Please take care of yourself. You and all these folks are in my prayers.

"Promise you'll have such a beautifully happy and painlessly romantic good life from me."

Pete (huge hugs)

Response from Dr. Frascino

Hi Pete,

Yes, the stories are amazing and there are over 40,000,000 of them! Fourteen thousand people become infected each and every day. Over 25,000,000 have already died and an additional 3,000,000 will succumb this year. That's one life being snuffed out every 10 seconds of every minute of every hour of every day, day after day after day.

Here in the U.S. all major credible scientific studies have shown over and over again that abstinence-only sex education doesn't work and in fact may be contributing to STDs, including HIV. And yet, Bush and his illegal wiretapping, anti-science, rightwing wingnuts continue to insist that is the only thing that can be taught in schools. Otherwise, they cut off funds! It's illogical. It's immoral. It's wrong. Half of all new infections in the U.S. are in young adults aged 13 to 24. That's 20,000 new infections each year; roughly one every hour! All of these are preventable illnesses, preventable tragedies.

How do I cope in responding to them? With honesty, compassion, understanding and love. And yes, sometimes with hugs and tears. Do I distance myself? No. In fact just the opposite. I want them to know they are not alone. I struggle with the same medication side effects, the same social stigmatization and the same frustration with the world's apathy toward this catastrophic human tragedy. And yet amidst the horror I find optimism, courage and compassion in those of us who have been infected or affected by the virus. Messages like yours, indicating you are working with your local AIDS service organization, send a message of hope and caring. My foundation, The Robert James Frascino AIDS Foundation, began as a simple effort to help a struggling local AIDS service organization. It subsequently evolved into an international effort. We've now raised well over $1,000,000 for AIDS service organizations worldwide and touched hundreds of thousands of lives (www.concertedeffort.org). I do believe one person can change the world.

Thanks for your support and prayers. And thank you for joining the battle to fight HIV/AIDS. I'll leave you with one of my favorite quotes from George Bernard Shaw. It's contained in the question from the archives reprinted below.

Be well. Stay Well.

Dr. Bob

Dr. Bob, What about you? Sep 6, 2004

Hello Dr. Bob,

I want to start by simply saying thank you for all of the work that you do each day on this site. You bring so much comfort and knowledge to people. You are a very compassionate and caring man. Perhaps it doesn't surprise you that we (your devote fans) are just as caring and concerned about you. Some of us can't help but wonder how you are doing with this disease. What is your status in terms of viral load and CD4? How do you find strength each day to go on? and what can we do for you to help you with this very trying time in your life?

You do not have to answer this if you do not want to. We just simply want to know about someone we love. And I mean that Dr. Bob.

Your Friend Always

William

Response from Dr. Frascino

Hi William,

What a pleasure to read a question that isn't self-centered and related to a lap dance from a bisexual cross-dressing transsexual Mormon midget! There were so many of those types of questions coming in from New York City last week ahhh, the fools and fanatics of the GOP Convention!!!

The best word for my viral load and CD4 count at the moment would be "stable." How am I doing with the disease? Well, according to the statistics at the time the virus found me in January of 1991, I shouldn't even be here, so I'd say I'm doing quite well. Sure, at times I feel as though I'm living on borrowed time. As I've said before, I really do believe we measure life in the wrong dimension. A life shouldn't be measured merely in length, but rather in depth. In many ways, perhaps because of HIV and the depth of my experiences, I've never felt more alive.

I won't say that cohabitating with HIV is easy. It's not. The drugs that keep me alive are science's classic double-edged sword causing not only great benefits but also some not-so-great side effects. At times I can be so exhausted I need to take a nap before going to bed. Once asleep, I can sometimes have my very own version of a "wet dream," a drenching night sweat that has, on occasion, made me wonder if I should wear a lifejacket and flippers to bed. At times I look at our linen closet and refrigerator, and see that it's now decorated in "nouveau pharmacy" style. Mack trucks deliver my medications in Godzilla-sized containers. Like so many other virally enhanced folks, I've had my fair share of HIV-related complications, but I see no point in dwelling on them. In life, as in playing cards, you can't choose the cards you are dealt, but you can definitely choose how to play these cares. Perhaps that's the real secret of living well on borrowed time. I also freely admit having Steve (Dr. Steve in The Body's Tratamientos Forum) to share life, love, sex, and other unscheduled events makes me the luckiest guy on the planet.

Here is my two-rule manifesto for living well with HIV: 1. "This is the true joy in life, the being used for a purpose recognized by yourself as a mighty one. The being a force of nature instead of a feverish, selfish little clod of ailments and grievances complaining that the world will not devote itself to making you happy . . . . Life is no brief candle for me. It is a sort of splendid torch which I have got hold of for the moment, and I want to make it burn as brightly as possible before handing it on to future generations." George Bernard Shaw

2. Always remember the wise advice of rule number 1. Thanks for your concern and friendship, William. I find that compassion and generosity, when freely given to those in need, is returned a thousand fold.

Stay well, William.

Your friend,

Dr. Bob



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