My Complicated Relationship with Survival: Twenty Years with HIV

I have a complicated relationship with survival.

That relationship involves monumental loss, and deep love. It is the space where heartbreak and resilience live. The very space that makes me me in so many ways.

Twenty years ago today I was a 28-year-old who was far too young and far too old at the same time. On July 15, 1995, I was sitting in the health department in St. John’s, Newfoundland, listening to a doctor I had never met coldly tell me that I was HIV+. This was a time just before effective medication. HIV was still a death sentence. I knew that, deep in my bones, because I had buried friends and acquaintances and would bury many more over the years to come. We were all too young and too old at the same time.

I don’t often show the scars and the weariness of a twenty-year war with HIV/AIDS. Sometimes that is because I am an introvert. I blame it on my INFP-ness. But just as often there isn’t space allowed for such complexity. Over the years I have heard countless times in response to opening up that “you never know. I could get hit by a bus tomorrow” or “HIV is just a manageable disease now, right?” Even now I’ve struggled to talk about this anniversary because words seem too small, too little, too listless to hold twenty years of fighting, losing, winning, fear, exhaustion, ferocity, isolation, tenderness, companionship…  It’s not in any one word. It’s in the weave of all the words and silences.

How do I tell you that I know you are happy I am still here and that I am grateful too, but that gratitude is also complicated. Some of my friends aren’t here. When you hug me and I feel held by your touch, I remember the times some of us had to sneak in to hospital rooms and take off protective clothing so our friends could feel the warmth of touch and absence of fear before they died. Even now twenty years later I sometimes still encounter touch tinged with fear and my body remembers that the war isn’t over.

I’m heartbroken and I have been heartbroken this entire time. That doesn’t mean that the life I’m living now isn’t a beautiful thing. It is a beautiful, tender thing, and it’s fragile. My heart is fragile, my very existence is fragile. This anniversary reminds me that both are true; that my existence is fragile and that I am fiercely resilient. For so many of us who have lived with HIV/AIDS for decades and who have outlived all estimates of our survival, our heartbreak and our resilience are intimately connected.

For me that heartbreak isn’t a stagnant bitterness. It is the fluid movement of suffering through an open heart whose sheer force helped carve out the reservoir of compassion I draw on today. Rather than pretend not to be heartbroken I am learning, through spiritual practices centering compassion and service, that heartbreak is a necessary component of aliveness. It’s not my life goal anymore to not break. My life goal is to love fiercely, with as much of an open heart as I can hold on any given day, and make that sustainable. To hold my own suffering in meaningful ways that allow me to tenderly see and touch your suffering. To nurture heartbreak as a spiritual force rather than developing walls that isolate more than they protect.

In service of bearing witness to my own heartbreak, my intention is to nudge myself to tell more of the stories from these past twenty years over the remainder of 2015, and to keep teaching the spiritual practices of cultivating a broken heart. It’s for your own good, trust me.