Follow the Frayed Yellow Tie: On the Road for Right To Try—Part 2

Finally in the air after the flight out of Phoenix was delayed by 30 minutes. And then we sat for another hour before pulling from the gate.

“Rain?” Really, this was the cause for the delay? It’s Monday afternoon and I’m on the road again. This time to Nashville and from there, Indianapolis. I’m not going to make my four o’clock meeting with Tennessee’s sponsor of Right to Try now, not with the delay. And there’s no Wi-Fi access. So I sit, hoping the people of Goldwater who make sure my schedule works will handle it. By the time I land I’ll (hopefully) be on track for dinner with the sponsoring legislator, or at this rate, breakfast. Either way—I’ll be good, the sponsor will be comfortable, and come tomorrow I’ll testify at the capitol and be in the air to Indianapolis before dark. I can’t believe the plane doesn’t have Wi-Fi! How spoiled am I?

“Yes, you are pretty spoiled, Kurt.” I remind myself, as I move the tattered ends of my tie from under my seat belt buckle. The yellow gold fabric now falls free from constraint.

The tie makes me think of Paul. In what I like to refer to as “my previous life”—when I worked as a lawyer for the U.S. Department of Justice and was lucky enough to work with many great FBI agents—there was one agent in particular named Paul. He was from Kentucky, and had spent time in the army. He had a wonderful family composed of his wife Ashlee and their two beautiful daughters. We met when he was an agent in Gallup, New Mexico. Together, we worked some of the most heartbreaking criminal cases one could imagine. On a daily basis we’d almost chuckle at the fact that life was truly stranger than fiction. I say “almost chuckle” because generally we dealt in human tragedy. But through it all, Paul and I became great friends and partners, trusting each other completely.

One of the jury trials we worked took place in Prescott, Arizona. The night before it started, Paul realized he’d forgotten to pack a tie. So we went to the local mall, found a department store and each purchased a new tie for the trial. I didn’t need one, but hey—why not? I bought a yellowish-gold one that complemented my dark suits.

Not long after the trial was Paul’s birthday. He was in his early forties, and he and Ashlee booked a trip to Mexico to celebrate. Paul talked about it non-stop for weeks prior to their departure. But as sometimes happens in life, the trip didn’t go as planned. Paul felt sick the entire time, so much so that upon their return he went directly to the hospital. A tumor the size of an orange was discovered around his heart. Paul battled that tumor—harder than the Kentucky Wildcats battle the Louisville Cardinals on the hardwood. (Paul was a rabid UK Wildcats fan. One time on the road, in a hotel room adjoining mine, I heard him scream so loud I thought he was under attack. Turns out the Wildcats missed a last second jump shot that lost a gameit was only pre-season, mind you.) My friend lost his battle almost a year to the day from the tumor’s discovery.

Paul’s funeral was in Alabama—where his latest office assignment with the FBI and his family’s relatively new home were located. As you might imagine, the place was packed with those who knew and loved Paul. But there was also plenty of people who barely knew him, including fellow agents who came simply because they belonged to his other “family.” I wore very dark sunglasses that day, intending to hide the tears I knew I would shed. Tears that would irritate Paul.

“Don’t be such a wuuuuss,” he would have told me. But as I looked around the room, I was struck by the number of dark sunglasses looking back at me. I clearly was not a “wuuuuss” or clearly I was just one of many.

Paul didn’t have Right to Try to give him a greater shot at pulling through. I know if he had and needed that chance, he’d have taken it. His battle raged at MD Anderson in Houston. I would visit him as much as possible and we talked all the time. He explained to me that all he wanted was more time with his family, that what hurt the most was the loss of time.

One phone call I remember vividly took place in my car in a parking lot in Phoenix:

“Hey maaaan,” Paul said. One syllable words contained at least three extra when he spoke. “I need to talk to you about something.”

“Sure,” I said. It sounded ominous.

“I need to get my stuff in order, you know—will, insurance, all that,” he said. Of course, with denial being one of my favorite states of existence, my response was somewhere between “I don’t want to talk about this” and “you’re going to be fine.”

“Don’t be so stuuuupid,” he said. “We both know how this is going to end. Don’t worry, I ain’t quittin’, I just got to get ready. Will you help me?”

Of course.

Paul didn’t quit. He fought for every week, every day, every hour he could to spend more time with those he loved. Right to Try gives those like Paul—who are in their life’s ultimate battle—one more chance, one more opportunity.

So I deal with the plane delay and the woman next to me who takes both arm rests AND gets up and down repeatedly for the bathroom. And I do it with the tie—the yellowish-gold tie I wore to trial with Paul so many years ago. It’s always with me on the road. It’s old now and badly frayed. I have to tie it just right to hide the torn part below my collar. But I wear it anyways, because it reminds me how important this journey is, each and every time. It reminds me that I’m not alone in this fight and how important the people who help me are—family, colleagues, bill sponsors and support staff, reporters, and sister organizations. It reminds me how lucky I am to be part of this movement. It reminds me of the people Right to Try will help and how, just maybe, their loved ones won’t need to don dark sunglasses so soon. But mostly, it reminds me of Paul.