The Spiritual Lessons of HIV
Having HIV for 25 years is like traveling on a very long highway. It is not only studded with tollbooths charging exorbitant fees, but the gas stations are spaced so far apart that you barely make it from one to the next. At the end of the trip, you look back at all the other cars that didn't make it and the arbitrariness of the view can drive you to atheism. Why them and not me? I did nothing better; in fact I took many a detour, drove recklessly. Can there be a God -- at least one worth believing in -- that would be so fickle? At the same time, how can all those deaths have no greater sense beyond the grief they brought upon loved ones?
Personally, I've always found God in the human capacity to make meaning. That I survived instead of my brother or any of many friends does not mean I was supposed to live for some greater purpose that they couldn't fulfill. But that I did live can endow me with the responsibility to make that survival mean something. I can examine everything I've observed about life in a way I wouldn't have had I not been challenged by this disease, to ask myself: What have I learned?
I learned that there are things much worse than death. There is the kind of fear that marked the early days of AIDS, when the sick were often shunned or abandoned. That fear caused cruelty -- the worst disease of them all.
I learned that death, in and of itself, is not a terrible thing at all -- we just tend to confuse it with the suffering that usually precedes it and the grief that invariably follows it. Death itself is largely an unknown, and as clichéd as it sounds, part of life. There are a lot of decent arguments to be made for the idea that the soul goes through many lifetimes. I personally choose to believe when I close my eyes for the last time, something of me will open them up again one day in another manifestation.
I learned that although too much fear is bad, some is good, even healthy. Children need to be afraid of oncoming traffic, so they won't walk into it. Adults need to be afraid of the damage that can be done by stupid leaders, so that they vote wisely. HIV-negative men should have some fear of all that comes with HIV, so they avoid contracting it. I know that I lost some of my fears to an unhealthy degree, because I did a lot of stupid, risky things that resulted in prison. Fear can be an expression of humility.
I learned that the concern of my family and friends was an expression of love to be appreciated, not bristled at. How could I resent them for not keeping up with the latest developments in treating HIV? This helped me realize that just because it was happening to me didn't mean that everybody else didn't have equally serious concerns. I learned to be compassionate to my friends dealing with diseases in themselves or family members, to ask how they were and listen to the answer, to offer help and then be willing to actually help in a practical way. A friend with ovarian cancer was every bit as scared as I had been -- I used my experience to help alleviate her pain.
I learned to remind myself, every time that I felt tempted to internalize the societal stigma around HIV, that I contracted this disease in the search for human intimacy. Whether the encounter was more lust-based or love-based doesn't matter, I wanted to be close to another consenting adult, and there is never any shame in that. If people insisted on projecting their opinions about acceptable sexual expression onto AIDS, I had no control over that. What I could do is make a choice to stand in the light unapologetically, to protect my brothers by always disclosing my serostatus, never making anyone who chose not to have sex with me as a result feel bad about it. That was their right, just as it was mine not to feel bad or apologetic about my status.
I have learned -- or perhaps decided -- that kindness is the most important spiritual principle there is.
If HIV had never been more than a science fiction fantasy, I might surely have developed this same belief, but I strongly suspect the life I would have lived would have been one far more preoccupied with matters of career and sex; of things I could have and places I could go. The experience of AIDS has taught me like nothing else that what enriches us as spiritual beings is how we treat each other as human beings. But like Dorothy in the Wizard of Oz, surviving the Wicked Witch of AIDS, it's a lesson I had to learn for myself.
Follow Mark Olmsted on Twitter: www.twitter.com/MarquisMarq
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It was very brave of you to share this with us, thank you.
I don't agree. HIV was definitely neglected in the 80s, but now hardly anyone who is treated dies of it anymore. The same cannot be said for cancer--breast or otherwise--whose mortality rates are essentially unchanged over decades. Inasmuch as the solution to any disease is more money as opposed to more creative thinking, I don't begrudge breast cancer all the funding in needs. The real tragedy is that the top 1% of this country makes so much of the national income that there's isn't enough money left to address adequately HIV, Cancer, and the worse disease of all--poverty.
really? a friend is in the hospital as i write and he's dying of wasting. he has few days left. thank for your "insight".
I'm not saying no one dies of AIDS in America only that it is very rare. I don't know what your friend's particulars are, but in my experience usually some who gets to that point let it go undiagnosed and untreated, usually because of an unwillingness to get tested. Or your friend may be one of the few who simply does not repsond to any drugs, but that doesn't make it any less true that the death rate from AIDS has plummetted in the United States.
BEING KIND IS INFINITELY MORE IMPORTANT THAT BEING RIGHT
My personal path to God is the Arts
Dr. Rick Lippin
Southampton,Pa
Lovely essay, Mark, thank you so much for writing and expressing feelings that are familiar to many of us who have HIV.
"kindness is the most important spiritual principle there is."
"Like the light of the moon to the stars in the sky at night so is loving kindness to all other forms of spiritual practice" Buddha
Thank you, I am a fellow traveler and found this my morning reading. HIV is but a part of my life, sometimes a beacon but God whatever that is, is at the center
"And the Band Played On" should be required reading in our high schools. That book, which I read many years ago, forever changed my thinking about homosexuality and the stigma associated with AIDS that you speak of. A virus is a virus, period, and does not discriminate against its victims. Unfortunately, we people do that, but I have taught my children differently and hopefully others will, too.
How wonderful that you could use your experience to help your friend with ovarian cancer. Thank you for a very moving essay.
(continued from below)
Because of my disability, I have become a better person. I am more compassionate and empathetic to others' suffering. I have learned not to take anything - especially something as simple and normal as walking - for granted. I have learned the value of patient, understanding friends and family; especially those who don't mind wheeling you around the zoo in a wheelchair on an outing. I learned to live in the moment and enjoy it, instead of rushing blindly ahead (sometimes I forget this one, though).
Your post was so beautiful and poignant. You truly have mastered the wisdom that comes with any ailment or infirmity - to see the blessing in disguise, to eke out optimism and joy from fear and pain. To use what you have learned to help others. Namaste, Mark.
During my worst moments in prison, sometimes I would just make a list of all the things I was grateful for. Breathing unimpeded. A sense of balance. Good hearing. Eyesight. The use of my hands. And of course, the ability to simply walk across the room.
What a disablity can give us is a sense of perspective without which we later can't imagine our lives. I see that very clearly in your words.
Mark...wow
I am, first, so sorry for your losses and for your struggles. But I see that you have turned it all around to work for you instead of against you. That takes a very strong person and I, for one, know it is not easy.
I was crippled after a botched surgery some 7 years ago. After more surgery and much heartache, including severe depression and sometimes even thoughts of suicide, I woke up one morning and realized I was letting my handicap define me. I was letting it rule my life instead of me leading my own life with it as a sidecar passenger. I learned to make it work *for* me instead of *against* me.
Today I still have pain every day (though I am now on a wonderful pain management regimen) and still walk with a cane. I do p.t. three times a week but other than that, I do not let it stop me or slow me down. No more. I work, drive, do what I want for the most part (just have to go slow and take it easy). Once I learned to stop saying "Why me?" and instead say, "Thank you for this blessing and opportunity to grow & become a better person!" my whole life changed. It's really all about changing your perception.
Kindness is a virtue we often dismiss to satiate our greed.
And our capitalistic society shamelessly promotes that.
and here's a non-spiritual lesson from swine flu vaccine, that imho deserves to be published asap
http://www
I shed a tear for all that has been lost and all the pain felt.
Your words are a great comfort Mark, thank you for sharing
No long analysis, I just want to share that your words moved me, and I do believe that kindness is the most important spiritual principle there is. A beautifully written essay.
A lovely, lovely essay.
Thank you, Mark
I was diagnosed with HIV about 2 1/2 years ago, literally "out of the blue". I have had one partner in 20 years, who was HIV negative when he died. In the years following his death I was dying myself, cutting out my living bit by bit, a little every day - from unresolved grief. My diagnosis was a gift. It woke me up, saying "If you really want out here's your ticket." Certainly I had no fear of death but I decided to live instead, returned to my spiritual practices and work as an alternative physician. As a precursor to any healing journey I find a good question to ask, "Is this a problem, or a gift?" You have your gift and a blessing and much to life to love. I'm still making my way back into life but I really appreciate hearing your story.
I learned to remind myself, every time that I felt tempted to internalize the societal stigma around HIV, that I contracted this disease in the search for human intimacy. Whether the encounter was more lust-based or love-based doesn't matter, I wanted to be close to another consenting adult, and there is never any shame in that. If people insisted on projecting their opinions about acceptable sexual expression onto AIDS, I had no control over that. What I could do is make a choice to stand in the light unapologetically, to protect my brothers by always disclosing my serostatus, never making anyone who chose not to have sex with me as a result feel bad about it. That was their right, just as it was mine not to feel bad or apologetic about my status.
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This paragraph right here is waht has spoken to me the most... Personally I haven't quite gotten to a point of forgiving myself for contracting HIV. It's a mistake that still haunts and nags at me today. At the same time, I have also allowed myself to withdraw from that same longing for physical intimacy.
It's a great article you have written and most certainly food for thought in taking on the next 9 years of living with HIV, and beyond.
Thank you.
In America in 2009, HIV far less toxic than lung cancer, as yet I've never known a smoker to be riven with the same sense of stigma routinely seen among the HIV-positive. In my experience, such feelings usually camouflage internalized homophobia. Treating that is where relief is to be found.
As for the isolation from contact, don't compound one mistake with one far more soul-killing. The God of my understanding does not punish, and neither should you. And no one every caught an STD from cuddling. (Well, maybe the crabs. But there's a shampoo for that.)
You are absolutely correct about the stigma of HIV in our society. There is a great disproportionate amount of largess being poured into cancer research -- especially breast cancer because many deem it as an "innocent" illness -- compared to HIV because of such mentioned stigma.
Frankly, some researchers say that if HIV research received that kind of donations, HIV vaccine just might have been possible already.
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