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A Heartfelt Thank You

Apr 22, 2004

I wanted to express my gratitude to the operators of this site and the practitioners of the forums. You have touch my life in a very good way. Since my infection and diagnosis last Fall, this site, its compassionate physicians and its wonderful educational resources has held me together through a personal trauma unmatched in the course of my life. Like many in small communities, there are limited support systems for assistance for someone initiated to this harsh new world through a single act of stupidity. Faced with questions of my own mortality and reasons for living, this site has encouraged, supported, and educated this guy about life as I now accept it. As many in your clinics, I am anything but your typical media demographic for this disease, yet here I am. For me, I always had compassion, but never "connection" to the world of HIV/AIDS. It was never the "feigned grief" of the sleeping village destroyed by the volcano metaphor, but this disease does not affect the lives of highly educated, professional, heterosexual, family guys like me until it crosses your personal threshold. Unfortunately, it has had its greatest impact with the poor, the addicted, and the gay and other communities that are more easily marginalized in our society. This marginalization allows a variety of effects including chronic under funding of research and support programs as well as stigmatization of those unfortunate enough to have contracted this disease.

With great compassion and understanding for those who have struggled long with this virus, with those who are faced with diminishing options and increasing health challenges, and for the twenty-somethings logging in as newly diagnosed, I can tell you that my outlook is a hopeful one and I am encouraged by what the future holds. New to this world as patient, I can tell you my observations. I apologize in advance for my bias as a first worlder, as I can claim very little understanding of the third world challenges of HIV/AIDS beyond the tragic accounts, media reports and staggering statistics I read.

1) Medical science has and is making great strides in the treatment and management of this disease. With a bit of luck and good attention to personal health (take your viral birth control pills!), the outlook for most is promising. There are no sure things in life, and good health and longevity are not assured for anybody, regardless of HIV status.

2) The lack of urgency in US government concerning this worldwide epidemic is astounding. I do not think we get it. As the strongest and smartest economy on the planet, we should be leading with our compassion, mobilizing resources at level consistent with the challenge. That even some of our own citizens in need go without medical treatment for what is now a treatable chronic condition is unconscionable.

3) You can survive this diagnosis. Make no mistake - its serious stuff. Nevertheless, the good life can go on - largely if you are willing to work at it. It is easy to give up, but a future belongs to those who can step into the ring with this stupid monkey virus and go the full 10 rounds. Expect to be beat up, but not beaten. You have support in your corner and oftentimes you have to find it and accept it. You are better than this virus; make a testament of this fact.

4) The images and circumstances of the early advent of this disease have encouraged discrimination in today's attitudes about those unfortunate enough to be infected. I follow my physician's coaching and his own actions on my behalf: there is discrimination, pettiness, and too often, ill will out there. There are not many who you cross paths with in life, including friends, family, work, and even some in the medical profession who "need" to know of your diagnosis. Choose wisely, follow your heart and protect yourself and your loved ones from people who use may this information against you. In a perfect world, honesty and openness is the desired course, but then this world is far from perfect. The courage of those who are open and honest about their status should never be underestimated.

5) Never loose your hope. In the darkest of times, remember the millions who have gone before you and sadly for now, the millions who will come after you. You are not alone in this unless you choose to be alone. Some of the brightest minds ever to walk the planet are working tirelessly on your behalf - take comfort in this. The incredible voyage now underway has taken our medical knowledge to levels unimaginable only a few short decades ago. You are today a beneficiary of this creativity and passion in the search for science truth, good therapies, and ultimately, a cure.

6) Be pro vita! Above all, live your life. Do not let your diagnosis define your life. Manage your hopes, your dreams and your aspirations, your loves and passions as you did before the word retrovirus was a part of your vocabulary. Celebrate the good and the bad about life and your ability to know the difference. At any level of life, only a competitor can earn the distinction of champion.

My warmest regards, M

Response from Dr. Young

Dear M- Thank you for your post and very thoughtful words.


Long term nonprogressor, but very ill

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