When HIV Hits Home, Again

HIV/AIDS is about much more than the overwhelming numbers and the unfathomable ignorance that is promoted by ideologues. Some days it is about friends. Yesterday was one of those days.

Knowing I was home in Kansas helping my sister through cancer surgery, one of my dearest friends held back on the difficult news that he learned he was HIV+ just over one week ago. It is the moments when difficult words come tumbling out of the mouths of someone you genuinely love that politics and policy evaporate, when social justice is positively singular.

As soon as I heard the words I wanted to be by his side, not too many miles away. When I learned my status ten years ago, I had foreshadowed it because of the nature and severity of flu like symptoms I experienced. As I got the news alone in my doctor’s office, I shed no tears, in tune with my body to know that what I had experienced was not the flu.

My friend, similarly learned his diagnosis alone, in a visit to the hospital where the test had been taken. He was then in shock, and by his own account, may still be. His tears flowed easily through the phone as I choked back mine. It is understandable, the feeling he is having—the fear, the shock, the depression, the uncertainty of what to do next, where to turn, who to tell, how to deal. We spent time reassuring one another, me validating what he was feeling and experiencing, letting him know it was natural and he would work through it. Me reminding him that many people he knows are living proof that he will live a long, normal and healthy life and see his dreams and hopes realized if he does what he has to do—take care of himself. He reassured me he was okay, repeating it often, to reassure himself as much as me.

My mind was sorting through ten-plus years of accumulated information like some whacky super computer processing every bit I have learned about HIV, trying to recall which information is most important during the initial shock. Surprisingly little sinks in during those first days and weeks, but the tone is set early how people will deal and ultimately receive information later. You tell a story or two, you remind them of the advances that are being made, the fact the disease is more chronic than fatal and that with nutrition, wise decisions, attention to one’s mental, physical and spiritual health, all will be well.

My friend is an enormously spiritual person; the entire reason we are friends is our mutual recognition of spirit working in and through us and everyone and thing around us. His spirituality will serve him well. He has tremendous healing to offer others, enough to spare even with this diagnosis.

He cannot see that now, as all looks bleak even in the face of progress literally millions have died to create. But he will come to see this, and it will motivate him to live in service and healing to others, as so many who face challenges like this do.

For now, the lessons are his to learn personally, as they are for anyone who gets a life-altering diagnosis. Many use these precious moments, these life lessons, to take stock, evaluate, look deeper within than they ever knew possible. The only reason there have been any successes, any advances, any hope at all provided to people who are HIV+ is that individuals dared to look that deeply within themselves in the 1980’s and built community. Millions continue to today, one reason there has never been a more hopeful time to be alive.

Against enormous odds communities of support came together and moved mountains of ignorance. They continue to strive against ideology and dogma as the connections no longer are made based on any identifying characteristic other than humanity. When the self-anointed and the self-appointed leaders, those of faith and those of politics, could only curse and condemn, common people gave their last days to ensure one day people would receive this diagnosis with more hope, like today, and that one day yet to be seen, no one would need receive this diagnosis ever again, because fear, stigma, denial and ignorance will be replaced with love, acceptance, education and respect.

When leadership failed ordinary people dared to lead. That is the story of HIV even as devastating as it remains all around the world—it is a story of hope, of connecting, of overcoming fear, stigma, shame and remembering that which is of this world has no claim on us, but only serves to teach us or teach others through us.

HIV/AIDS has taught so much about life and death even to those not directly touched by it. Cancer and other once terminal communities have grown in sophistication about organizing, networking, visibility and the importance of peer-to-peer connection in part as a result of the examples set by the HIV/AIDS community. Science has driven advances in many disease communities and holds great promise. But it is ultimately how each person who receives a serious diagnosis responds to it, learns from it and teaches others, that dictates the course of the rest of their lives.

HIV/AIDS is a communicable disease, but how much less so is cancer or any other disease if the people going through it and those around them fail to learn the life lessons it offers and make necessary changes. Not every disease can be transmitted as directly as HIV, but the triumph of inertia and ignorance will ensure that any disease can be shared. The disease is not the important issue once diagnosed, but rather the lessons one finds within their journey with it.

None of this matters in those first moments of shock, not technically, not medically, not intellectually, not even emotionally. The fact that I and many other people living with HIV/AIDS continue to thrive may be more tangible to someone just diagnosed, but only marginally more meaningful. In those first moments, days, sometimes weeks, it is a singular and often lonely journey despite the best efforts of others. All anyone can do in the face of AIDS is stand as light in the dark, offer hope, promise support and comfort, reminding each person that they are so much more than their diagnosis. Far from being disease, or cursed or judged and stigmatized, each person remains perfect in every moment, now simply walking a journey that they may not have expected, but will never walk alone.