The Celebration on the Hill

You all don't know Ben Brudevold-Newman, but he has come to know many of you. He is the guy at NPR who reads every comment that comes in to the My Cancer blog, and he posts them on the site. I've talked in the past about the "parallel universe" that cancer patients live in. Well, Ben was dragged across that line into our world, not by the disease, but by his job. I've often wondered what that experience has been like for him. Thousands of cancer activists and survivors have come to Washington this week, and so we sent Ben down to take a look — not so much so that he could report on the events, but so he could meet people in person, people like us. Cancer patients.

It isn't easy being pulled into the cancer world. To be honest, I have mixed feelings about my experience working on My Cancer. It's hard — I don't always enjoy it, but I know it's good for me. Reading Leroy's posts and all of your comments is taxing. Just when I think I've read the most heart-breaking, tragic account of what cancer can do to a person's body, spirit or family, someone tops it. It's hard to leave these testimonies at work.

On the other hand, I really enjoy working with Leroy and the staff here. I really admire him as a journalist and a person. It seems like everyone knows someone affected by cancer, and odds are that I'll have to confront cancer in the same ways that many of you do.

When I agreed to attend the Cancer Action Network's "Celebration on the Hill," I didn't know what to expect. I knew the event is a highlight on the cancer lobby's calendar — with thousands of people from every single congressional district descending on the National Mall, rallying to put cancer funding back at the top of the political agenda. But that was all I knew. The main advice Leroy offered me was to just "have fun." I didn't think it would be easy, but I didn't think 10,000 participants, all wearing purple T-shirts would turn the event into a street carnival, either.

As I arrived, I was ushered toward the media center — a white tent near the main stage. The opening ceremony was about to begin and I waited for the organizers to pair me with a cancer patient or survivor to be my guide for the day. Standing in the tent, I felt like I was in some kind of quarantine, intentionally separated from the purple T-shirt-clad crowd. So I watched the opening ceremony from inside the tent, feeling ironically like the sick person, observing, but not participating, from behind a transparent plastic curtain.

Then I met Nichole, a 22-year-old from Sacramento, Calif. She is a cancer ambassador for the Cancer Action Network and was chosen to speak with her legislative representative about supporting pro-cancer initiatives. If it weren't for her purple T-shirt, I would have guessed that the sash reading "SURVIVOR" draped over her shoulder was an indication of her status as the Survivor, Calif., beauty queen and not the badge of a cancer survivor.

I was struck by Nichole's response when I asked her whether she felt burdened by my presence — having to show someone around, let alone a cancer community outsider. Nichole reassured me that she was glad to help, but added, looking toward the parade, "If you aren't wearing purple, you're not really participating. You're watching."

Nichole guided me to the reflecting pool in front of the Capitol to chat. She told me about her diagnosis as a 3-year-old with Acute Lymphoblastic Leukemia (ALL), her early experiences with cancer activism and her involvement with the Cancer Action Network community. We shared our thoughts on politics and the American health-care system. We bonded over the "what should we do with our lives" crisis. We were interrupted a few times by the noise from the survivor's parade: clapping, whistles, bells, noisemakers and the Puerto Rican survivors chanting "Ole! Ole!" as they danced by.

A little while later, I sat at a picnic table writing notes from my conversation with Nichole. I could overhear conversations between a lot of different people nearby. They were talking about things really similar to what is said on the blog. People were telling each other to take one day at a time. They were talking about different diets and asking about chemo and surgery. Everyone was very open and expressive.

I think coming out en masse today and being together as part of the cancer community put everyone in a comfort zone. One organizer told me most of the relationships in the community are forged over the phone or through e-mail, and this is one of the few events where they get to meet people face to face. She said it was "like Internet dating, but different."

So what if I didn't have a purple shirt? The important thing is I was there, watching and listening. And those are two of the three things Nichole and her community desperately want from lawmakers: to watch and listen. And then to take action.

-- Ben Brudevold-Newman

6:32 AM ET | 09-21-2006 | permalink

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