This past February, when the conference was over and most people had left for home, I sat in the hotel bar with Donna, her family and friends that had helped out with the conference – and with the producer of the documentary film crew Nicole.
I sat next to Nicole and we chatted about various project we’d worked on. I was telling her about covering the first major trade show to return to New Orleans after Katrina. I joked that Anderson Cooper was in town to speak at the show, and he was staying in my hotel.
If I hadn’t been so busy covering my own story, I probably would have been trying to “run into” Cooper. I told her that secretly I returned to the hotel every night and prayed Cooper would be in the elevator when I went up to my room – just so I could have a few moments where he couldn’t escape to try to get him to do a piece on HPS.
“What would you have said to him?” she asked. A reasonable question, but I didn’t have a reasonable, well thought out, articulate answer. I couldn’t confess that had this actually happened, I’d have totally messed it up.
I’d likely have been reduced to begging. Please, please come and help us! You help people all the time all over the world with no voice – come talk to us. Let us tell you our story. It will save lives because so many people that have HPS don’t know it. The image of me attached to Anderson Cooper’s pant leg as he tried to go to his room was just something I couldn’t share with Nicole in that moment.
Tonight I watched Ted Koppel’s wonderful documentary on living with cancer. That’s it. That’s what I want. I want us to be heard. I want the world to know our story. I want the world to know how far we’ve come, and how far we have to go. I want the world to know what this is like. I want someone to ask me the same questions Ted Koppel asked Leroy.
I’m feeling really guilty tonight. Watching the documentary I felt a weird kind of jealousy for people with cancer. (Before you jump on me let me explain.) It isn’t that I want cancer, or that I’m insensitive to what a hard road that is. But as I watched the stories being shared, and the celebrities advocating for their cause, and as I identified with the stories being told, I wanted to shout. Wait, that happened to me. I have a story too.
The difference is I go to a doctor and instead of being greeted with confidence and knowledge, I get, “How do you Her, herma…how do you say this? How do you spell it.”
I’m feeling really horrible tonight for feeling that way.
I sat next to Nicole and we chatted about various project we’d worked on. I was telling her about covering the first major trade show to return to New Orleans after Katrina. I joked that Anderson Cooper was in town to speak at the show, and he was staying in my hotel.
If I hadn’t been so busy covering my own story, I probably would have been trying to “run into” Cooper. I told her that secretly I returned to the hotel every night and prayed Cooper would be in the elevator when I went up to my room – just so I could have a few moments where he couldn’t escape to try to get him to do a piece on HPS.
“What would you have said to him?” she asked. A reasonable question, but I didn’t have a reasonable, well thought out, articulate answer. I couldn’t confess that had this actually happened, I’d have totally messed it up.
I’d likely have been reduced to begging. Please, please come and help us! You help people all the time all over the world with no voice – come talk to us. Let us tell you our story. It will save lives because so many people that have HPS don’t know it. The image of me attached to Anderson Cooper’s pant leg as he tried to go to his room was just something I couldn’t share with Nicole in that moment.
Tonight I watched Ted Koppel’s wonderful documentary on living with cancer. That’s it. That’s what I want. I want us to be heard. I want the world to know our story. I want the world to know how far we’ve come, and how far we have to go. I want the world to know what this is like. I want someone to ask me the same questions Ted Koppel asked Leroy.
I’m feeling really guilty tonight. Watching the documentary I felt a weird kind of jealousy for people with cancer. (Before you jump on me let me explain.) It isn’t that I want cancer, or that I’m insensitive to what a hard road that is. But as I watched the stories being shared, and the celebrities advocating for their cause, and as I identified with the stories being told, I wanted to shout. Wait, that happened to me. I have a story too.
The difference is I go to a doctor and instead of being greeted with confidence and knowledge, I get, “How do you Her, herma…how do you say this? How do you spell it.”
I’m feeling really horrible tonight for feeling that way.
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