I attended the AIDS Quilt display in Washington, DC this past October, and it was no Steven Seagal movie premiere -- it was packed.
Among the thousands of people paying their respects were my parents, my brother and his wife. It was quite an experience -- our first AIDS family picnic!
The trip was odd for them. I mean, here was their little rebel of a kid, talking AIDS with strangers, when for years he would not even mention it to his best friends. I remember being 14, and my pint-size hemo cousin, four years old at the time, came running up to me all proud and full of joy. He said, "I have hemophilia, just like you!"
I freaked out. I mean, I was Joe Normal-Head at the time, and I couldn't be bothered with my shortcomings, as I saw them. So, pulling the young impressionable mind aside, I said, "Shhh... " Like his condition was something to be ashamed of -- what a dorky move that was.
Warp to 1996, and that very same cousin and I are openly discussing hemophilia. He is worried his friends don't like him because of his reluctance to play "Smash the Daisy" or "Raining Bricks." I tell him that if they don't like him, it's not because of hemophilia, and he shouldn't assume they even care about it. I hope I repaired whatever damage I inflicted seven years ago. Maybe, maybe not.
So my family had this big bonding thing in DC, but amid all the hubbub around the colorful Quilt, my dad seemed a little out of it. Father Dearest has dealt with my medical hurdles in his own way, handling blow after medical blow against his youngest son: He just keeps it all inside. Or maybe he just accepted long ago that he would outlive his son (don't count on it, Pops). Whatever it is, he just seemed in a state of bewilderment.
He deals in his own way and that's cool, but the thing that gets me is when my dad does not laugh at my amazing AIDS humor. All positoids unleash it on their unsuspecting negatoids from time to time.
Example: One day my father and I were in the kitchen; I had just finished making myself a peanut-butter sandwich. Dad was waiting for the PB, but when I was done, I put the knife, which had massive amounts of PB globbed on it, in the sink. My dad responded to this faux pas in a voice tinged with anger: "Jesus Christ, Shawn! Why don't you save some of that peanut butter by scraping it back into the jar?"
I shot back with the classic, "Because I didn't want you to catch AIDS!" Then I waited for the big ha-has, but was met instead with an uncomfortable silence.
Through all the viruses, my family has been very supportive, but no one was comfortable enough to ever bring it up around me. Like me, they just did not know what to say. But as I opened up and started talking, so did they. I recently spoke to an aunt who read my story in POZ (December 1996/January 1997). She said it answered a lot of questions she had, such as how I dealt with it, what I was thinking, that stuff. Another aunt explained why it was an unspoken topic for many years: The family did not want to be confronted with the reality of burying such a handsome young boy. Yeah.
I talked a lot at the Quilt, and it brought me closer to my fellow positoids. It was a very moving thing to just walk around with my family and read some of the panels. I felt like I was meeting these people, as if they were still around and I could call them sometime.
And it felt good. It made me feel really proud to be HIV positive, which is not an emotion I can say existed before I decided to share myself and my viruses with others. Before speaking up about AIDS, I felt indifferent to it all -- I'll take pride over that any day!
My family got to meet a lot of my positoid brothers and sisters also, and that was really important. They, too, were overcome by pride -- pride in me, pride in all the positoids they were meeting, pride in themselves. They realized it wasn't just us -- there are so many others, and we're all connected.
I overheard Mom talking on the phone the other day about my positoid pals: "You know, they are like a second family."