Years ago when I was in one of my more dabilitating phases of my illness, my son, Samuel, wanted to go to DragonCon here in Atlanta. The family bought tickets and rented me a wheel chair and went. I was excited to meet Laurrel K Hamilton, one of my favorite authors, and Joe Mangeniello, who was part of a True Blood pannel. Samuel being a teenager went his way and my dutiful husband drove me around to the author’s panels following Hamilton, whom I would meet on this trip (another story for another time), and eventually to the True Blood panel.
There was a wheel chair accessible area marked off and I was in it alone. Just in front of stage right. I was dressed in funky socks and a lilttle black dress. I looked like a perfectly healthy human in a wheel chair. As I usually do. The panel was fun and I got good eye contact from all the actors on the stage. Nelsen Ellis, the actor who played Lafayette commented on my funky socks even!
Eventually the panel ended and I was stuck waiting for the crushing crowds to disperse enough for me to leave. Joe Mangeniello let the other actresses off the stage in front of him and ended up going by the curtained side stage area last. But the curtain was split and he had a glimpse of me clearly. He stopped. I could see the thoughts behind his face as he processed me sitting in that chair and I smiled but he did not. He looked confused. I was crushed. I knew that look. It was a look that said clearly, “What could be wrong with her? She looks just fine.”
Later we were going to get my picture with Joe and as my husband pushed me to the cue, a crushing weight fell on me. I didn’t want to be the fan who also was disabled or asked what my disability was. I didn’t want that! I just wanted a picture with Joe, an actor I enjoyed watching on True Blood. As the panic descended, I nearly shouted, “NO!” and then found myself hyperventilating not because I was going to meet Mangeniello, but because I would be the disabled fan, the broken fan who had to justify my wheel chair. I left defeated without my picture.
Fast forward to this year, Joe Mangeniello has published his book Bloodlines: A Memior about his struggle with an autoimmune disease that nearly took his life multiple times. When I heard the news I went stock still and the entire episode at DragonCon came back to me.
Suddenly, what I had interpreted as confusion could have been someone suffering from an unknown illness looking at what might lay ahead of him. Or it could have been confusion that I could have spoken too before the illness started giving him information and context. That entire episode, as so many in our lives, could have been clouded with judgement from my own self and not what was actually happening.
Fact is, I will never know. The crushing weight of a culture that values wellness and wholeness above all sapped my resolve and strength. I left DragonCon without a picture and, in hindsight, a missed opportunity. A connection that could have been important to us both that I simply chickened out of.
Not that Joe Mangeniello cares, but I am sorry for judging him and making assumptions. As a chronic illness sufferer, I should know better but I didn’t.
I am sorry.
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