From the Advocates

On our advocacy blog on the C3 website, we started inviting our most active advocates to contribute content on a monthly basis. We have two posts up now.

The first is by Suzanne Lindley. Suzanne holds a very special place in my heart. She was diagnosed with Stage IV colon cancer about a month after my father was. She’s a couple of years younger than I am. She came to the ACOR colon cancer support list shaken by the “get your affairs in order and prepare to die” diagnosis (who wouldn’t?!?) and my father was one of the first to reach out to her. He urged her to fight, and she did. She’s by no means cancer free and has had her share of setbacks, but 8 years later she’s still here and she reflects on that in this entry. Keep in mind that the average life expectancy for her diagnosis is now around 2 years. This woman has been taking advocacy by storm since she started working with us this year, getting meetings with members of Congress with an ease that has dropped jaws. Heck, they’re calling her! Recently, the Governor of Texas declared March 2007 to be Colorectal Cancer Awareness month in direct response to her request.

As I cut apron strings, watched my daughters mature and grow, celebrated another year with my unbelievable husband, and moved forward with my own diagnosis I’ve had time for a lot of self-discovery. I’ve found weaknesses that I once thought were strengths and have stepped over them, things that I once thought were important seem trivial and I’ve grown from that discovery, and I have even learned that peace can be felt in the midst of fear; all knowledge that has given me strength. I’ve become very comfortable with my disease in this past year and as much as I would like to hear and experience the letters NED in my future, I honestly can’t imagine the magnitude of life without cancer. Life as it is now seems about as wonderful and full as it could possibly be.

Rob Michelson found us a few months ago and has been going gangbusters. Also a young Stage IV survivor, he has been actively involved on the research side of the advocacy battle.

It’s always fun to watch the evolution of someone finding out about C3, getting involved and then the light bulb moment when they realize exactly why we’re doing what we’re doing. I admit it. I didn’t get it at first either. For most people, when they think of cancer advocacy, they think of pink ribbons and walk-a-thons. They think of awareness education aimed purely at prevention of the disease. Yes, that’s important. But what we do is so much more than that. Goes so much deeper.

If you’ve been reading my blog and you still don’t have any idea what C3 is about, then I strongly urge you to read Rob’s entry. He gets it. He really gets it. It’s a long read, but worth it.

Awareness requires an associated action to have impact. C3 staff have said this to me over and over again, and it took a long time to finally sink in. C3’s efforts are directed to action, thereby getting the most bang for the buck (the “buck” being our collective time and energy). The action can be “to get people screened” or “to meet with your member of Congress” or “to advocate at FDA”. Through action, CRC awareness becomes a free-by product. And that is where CRC efforts up to this point have diverged from AIDS advocacy and breast advocacy. In those successful movements, the advocacy largely preceded the awareness. Most CRC efforts still focus on awareness. C3 advocates through its action – and that’s what gives it its unique focus within the CRC community and gives it an opportunity to transform the movement for greater impact.

Thanks Rob and Suzanne, for doing what my father never had the time to do. For taking the most devastating diagnosis and using your time and resources to make a difference for others. For going way beyond fundraising and awareness activities. But to really make a difference by sitting at the tables where your voice as a person living with this disease is most needed.