April 27, 2014
I recently passed a major milestone: a big, round-numbered birthday that, frankly, I never expected to reach. It was odd to arrive at this point in my life because, having lived with HIV for over thirty years, I had good reason to suspect that I would not celebrate this passage, or for that matter, birthdays that occurred decades earlier.
When I was infected in my twenties I imagined that the pulse of my life would soon fall silent, as it did for so many of my friends. I had many near misses, especially in the days before protease inhibitors. At one low point in the early 1990s, I lay dying from non-Hodgkins lymphoma. My family assembled for painful goodbyes and, surprisingly, I rallied after chemotherapy. That experience crystallized the reality that every day is literally on borrowed time.
Having now reached a point in my life with fewer years ahead than behind, it seems natural to wonder about the impact of having lived the greater part of my time on this planet with a life-threatening illness. What decisions did I make that might otherwise have been different? How have my thoughts and feelings been impacted by the shadow of HIV? What other paths might I have taken and how might this affect what I do with the remainder of my time in this body?
Looking back it is clear that regaining my emotional footing after diagnosis took years. On a whim my partner at the time and I decided to ask a physician friend to test us, never imagining we could be positive. When he called to report the positive results, the ceiling fell in. Literally. We were having a torrential tropical downpour and that day a leak caused plaster to fall. I was confused with feelings about my own diagnosis and fear for my partner. We both ultimately decided to carry on, shoving our status out of the way until physical complications required that we address it.
In those years it seemed the best we could do was to fight the next thing in our path: starting meds, AZT toxicity, anemia, thrush, pneumonia, stigma, fear of losing our insurance, cancer. By necessity, my thinking became short-term: survive the next crisis. I remained working through all of this (sometimes with the kindness of employers who paid me despite extended periods when I was sick), but I never truly focused on a long-term career path. I felt that sometime soon I would be unable to work and consequently my professional life lacked strategic planning. I had good jobs, but was always somewhat limited by a short-term perspective -- at first, at least, not imagining myself much beyond the present.
This thinking impacted other areas of my life as well. My financial resources went toward drug co-pays and insurance and certainly not, in any great way, to retirement savings. My rational mind told me that would be a waste of money. Even though I avoided financial disaster, HIV has been a constant financial burden.
In addition to a short-term perspective, I had a long-term struggle with another adjustment: trying to make peace with my overwhelming, unwelcome companion called HIV. We were fused, blood-brothers. I couldn't shake it. I tried many ways to deal with the shadow that followed me closely at all times. I denied it was there, I ignored it, I raged at it, I cried about it, I tried to reason with it. HIV just persisted. In the end, and not as quickly as I would have liked, I simply accepted it. It could be described as a sort of fatalism that takes hold when living with a chronic illness. I accepted that the only thing I could control in this situation was the present moment. I decided to reclaim my purpose. I gave up the power struggle with HIV and gradually began to see that the virus had radically transformed my life in many ways, good and bad. I am not the person today that I would have been without it.
Over time I became aware of gifts and talents that I could use to help myself and others living with HIV/AIDS. As a newly-minted mental health worker I was guided toward work with HIV/AIDS. I saw first-hand how substance abuse and mental health concerns affected the emotional and physical resilience -- and health outcomes -- of persons living with HIV. I also discovered my voice, which I used as a mental health trainer and writer to promote change.
On my birthday this year I was also aware that I've learned to manage strong emotions. Well before my diagnosis I tried numbing them with substances (I haven't done that in decades). When that option was gone, I tried ignoring feelings or rationalizing with them. Slowly I've learned to express and release them. Were it not for the enormous pressure of HIV, I might not have been compelled to do so. I understand that unexpressed feelings can make me sick, and that embracing, expressing, and letting them go is the only viable option.
One other area that has been impacted by my unwelcome viral companion is relationships. I am so grateful that I have been able to maintain two significant and mature connections with partners in my adult life. My first died a decade ago (last month, in fact) and I am again blessed with a wonderfully supportive partner. My immediate family has also been consistently loving and supportive.
The biggest impact of HIV on relationships has been in the social realm. Like many who survived the '80s and early '90s, I remain affected by the loss of nearly every friend I had. I sometimes hesitate to connect, lacking trust that this relationship will be here tomorrow. Perhaps a social version of return on investment? Or fear that I will cause pain by leaving someone behind? I don't know, except I'm happy to say this is improving. By working on myself my heart is able to embrace connections to others, developing significant and deep friendships with other men and women.
So, after decades of fear and uncertainty, of healing and near-misses, here I am. Happily facing the prospect of life before me, I have to confront the issues of aging that I believed I would never have the luxury of experiencing. Many of the skills I bring to this next chapter have been gleaned from HIV: having confidence in my ability to feel and express emotions; knowing that I can connect with others and that such connection is essential to my survival; believing I can make a difference; and knowing at a deep level that body and mind are one.
Finally, at moments of synchronicity or "coincidence," I am reminded that there is, most probably, something more to the universe than we can grasp. When that occurs I smile to myself and, despite my battle scars, feel a twinge of excitement about what may come next.