03: HIV in My Family

The impact of HIV is felt in so many ways by people throughout the world. For me, I first became aware of AIDS in the 1980’s along with so many others of my generation–through media reports about this new disease that was taking lives from coast to coast. Those frightening years were shared by many…but my story was just beginning.

As I said, I was aware of AIDS, but it wasn’t until the 1990’s that I really knew AIDS. As a junior in high school, my father told me that he had HIV. I stared at the television glancing away from his eyes and the conversation that I didn’t want to have. I’d known something was wrong for a number of years–too many trips to the vitamin store, too many books on healing, too much awareness of HIV. I’d never asked the question, never wanted to know the answer. My dad was my best friend, counselor, and the one whom I admired more than anything in the world. That night I stared and didn’t have the type of important conversation we’d shared so many other times. I wasn’t ready.

I continued on through high school, still not really accepting what was, at that time, a very harsh reality that I wouldn’t have my dad in my life. He’d acquired HIV back when it was “the gay plague” or “gay cancer” and because of his commitment to health and to me, he had outlived most of those who were diagnosed early with this horrible disease. Throughout this process, my dad continued to be my inspiration and friend though our days changed over time. The days of softball with his team and playing basketball in our alley were replaced with days inside relaxing. Time spent fixing houses or working on projects became less frequent and we moved to more time spent talking while my dad took his medications via an IV pump. We still went and had our infamous two hour chats at the Byerly’s restaurant in St. Louis Park and he was there helping me decide the right college for me and supporting me to go find my own path in the world despite his health.

I did indeed leave home for school and while we remained close, it’s difficult to be away and maintain that type of closeness. My dad would call and I know how proud he was that I had chosen to take on a new adventure away from home–he’d always believed in me more than I could really understand. I was still young and still didn’t grasp or at least focus on what was happening. When I was at home, his energy had faded and the once strong man who was always active needed my help to get through the grocery store as his vision had faded and his balance had become shaky. Despite that progression, I never thought I’d lose him...it still didn’t seem possible.

I went back to school for my sophomore year of college and again became engulfed in that world temporarily shutting out thoughts of home. It allowed me to focus on something I could control–grades and study. That focus on school brought the opportunity to participate in a mid-year ceremony acknowledging students that had excelled in their first years of school. My dad attended and beamed with pride–I was irritated that I lost a Saturday to sit inside a hall. It was nothing to me, but for my dad, it was his graduation ceremony… he was then walking only with help and moving much slower than I recalled. For someone recognized for academic success, I was awfully dim about what was happening.

I held his hand and can feel that final squeeze he gave me when he could no longer speak.

In the summer following my sophomore year, I stayed at school to work for the summer. I worked early mornings through early afternoon and would sleep following work. One afternoon I received a call that jolted me awake as nothing had in my life to date. My dad called and said that he wasn’t doing well, and I should probably come home. I was planning to come home the next week for my birthday but he said that would likely be too late. I told him I’d see him the next day and tried to shake myself from what felt like a horrible dream. Years of denial came to me in a single moment. Years of worry and fear turned to tears for the next 24 hours until I was home. My dad was dying and there was nothing I could do to stop it.

I was then able to spend three days with him and help family and friends say goodbye as he wished. I said much of what I wanted to tell him but many other words went unspoken. I held his hand and can feel that final squeeze he gave me when he could no longer speak.

That is the difficult part; we’ve lost people from our lives forever that were often taken far too early.

I have regrets of what I did or didn’t do but like all those who’ve lost fathers, mothers, children and friends to HIV–there is no going back. That is the difficult part; we’ve lost people from our lives forever that were often taken far too early. My father will never know my wife, he will never know what I’ve become, and he will never know or hold his granddaughter despite the fact he’d have been a wonderful grandpa. I would give anything to have him back for a single day- to say what I wanted to say; to let my daughter know him and show him her beautiful smile; to just talk like we used to.

The tragedy of HIV is not only in those we’ve lost but in those who have lost. Each person has a story and a family that aches and hurts because of their loss. It’s been 25 years of loss here in Minnesota and each day someone hurts; each day someone longs for something they can never have back.

-Dave Folkens

Last Updated: Friday, February 1, 2008
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