Lost & Found: On the Road for Right To Try
Outside my window, in the early morning light, I could see the bright red Coca Cola sign shine larger than any other in the city.
“Yeah, Atlanta, the birth place of Coke.”
I’ve awakened more times than I can count in the last two months wondering—what city am I in? Which coast am I on? Am I in the north or the south? The last month alone has taken me to Richmond, VA, Washington D.C., Kansas City, MO, Topeka, KS, Chicago, IL, Providence, RI, Dover, DE, and Baltimore, MD. Oh yeah, and Atlanta, GA. At least this cold morning in Atlanta didn’t involve me getting into a taxi while my rental car waited in the hotel parking lot. Try explaining that to a cab driver that thinks he’s got his 4:00 am fare. At times it’s been hard to keep track of anything.
It was this week in Atlanta when it all started to catch up with me. You know—the “poor me, all alone in the hotel bar, thinking of all the places I’ll be in the next week or two; all the airports, the lines, the time away from family and friends” kind of catch up. I was tired. I’ll admit it. As I sat there at my newly discovered pity party, listening to my phone ping – email after email, urgent request after urgent request. I read one with the subject line “If you are tired….”:
“Know that I am too but I’m counting my blessings before bed and count you as one of them. Thank you for all you are doing. God bless you and keep you. May the energy of the hearts you are changing amplify yours.”
The email was from Cari, a woman from Indiana I’d never met in person and spoken to only a handful of times. Her life, like many others, has been touched by a loved one’s terminal illness. What do I say? I’ve never met her. How did she know?
So I responded:
Cari,
Thank you for the support. Your email could not have come at a better time. I just landed in Atlanta trying to get something to eat and trying to plan out my day for tomorrow….lots of work to do here. Was just feeling a little tired and down. And your email made me realize my struggles are few and I’m privileged to be able to be on the road working on this project. I truly believe sometimes people try to find causes but more often causes find them. I’m lucky this one found me and am thankful for the opportunity.
Kurt
Talk about perspective. My pity party began to fade. I realized, that for the first time in a long time, I was doing exactly what I wanted with my career.
Right to Try has a tendency to put things in perspective. When I try to explain the concept I’m often at a loss for words, but one word always recurs: Humanity. That’s what Right to Try is—completely stripped down, bare bones, raw humanity. The movement, yes—it’s officially a movement—what with it being law in 5 states and considered as law in 28 others; the flood of news articles about it; the number of television reporters we talk to about it; the unending phone calls and emails we receive from those who need it and others who want to help the cause. How could it be anything but a movement?
But this movement in celebration of humanity will face challenges. It’s already begun. The FDA is starting to wield its political power, albeit behind the scenes. Some politicians are looking for excuses to kill the bills before they get traction. Confronted with this federal powerhouse, some politicians are resorting to justifications that Right to Try is unnecessary or unworkable; that it’s best to tap out of a brewing fight. As a result, true humanity—both good and bad—is on full display in capital cities from Washington D.C. to Sacramento. I wouldn’t have it any other way.
I wouldn’t trade Richmond, VA, where for two days Delegate Margaret Ransone marched me from lawmaker office to lawmaker office to explain Right to Try, how it works, and why it’s needed. Each meeting ended with her asking: “Are you with me?” No subtleties there, no games, just a simple question that required a simple answer.
I wouldn’t trade Chicago, IL, where I shared a podium with a Republican Senator and a Democratic Representative who have never before been on the same side of an issue. Reporters joked about it. One reporter asked me:
“How’d you do it? The most conservative and the most liberal in Illinois…in the same room and on the same stage, on the same side? This is historic.”
My response: “It was easy. Humanity. This isn’t about politics, it’s about human beings.”
I wouldn’t trade the humbling honor of meeting people like Ed Tessaro. He’s an ALS sufferer, who, in a wheelchair in a standing room only House Committee meeting in Atlanta said to committee members: “I won’t be here in three years. Terminal illnesses certainly provide one purpose and my purpose is to make sure you know that Right to Try will help folks like me after I’m gone. We have no choice now, Right to Try will provide choice and opportunity. You have a chance to do a good thing; please do so.”
I may be alone, but the road is not lonely. I am lucky, privileged really, to have help from an incredible group of Goldwater colleagues who may be in Phoenix, but are always with me on the road. Ashley, Craig, Christina, Jon, Michael, Starlee, and the list goes on– they tell me where I have to be, make sure I get there, arrange meetings, set up interviews, ensure I have the latest information and cover me when other things need to get done. Again, I am humbled by this humanity, by this movement.
I’m home now and my six-year-old asked where I’ll be next week; not sure, Oregon I think. “That’s cool,” he said. Indeed, pretty cool, as long as I don’t forget the rental car again.
“Yes you are giving hope. You are changing the paths. If you are going to see Ted, give him my best…God always has us where we are to be…Glad the email brought you peace warmth and light to your days.”
Thank you, Cari, it did. This cause found me. I’m not tired anymore.