The joy of fully experiencing joy

My heart is full of joy after eight beautiful days on the road.

I spent four days in Tucson, Arizona, for the Cologuard Classic, a PGA Tour golf tournament sponsored by Exact Sciences, the company that makes Cologuard.

Then it was off to Washington, DC, for Fight Colorectal Cancer’s Call on Congress, where we got ready for and then hit Capitol Hill to gain support for colorectal cancer research and prevention program funding, and to ask House Members to join the Congressional Colorectal Cancer Caucus.

I’m thrilled that my Congressman, Rep. Tim Burchett, agreed to join the caucus because of our meeting.

It’s weird, though.

Sitting with joy doesn’t come easy for me.

I can tell you what and who brings me joy — the lovely Sarah, time with my best friend Ryan, a well-made Old Fashioned, writing, serving others, and more — but I’m not great at savoring it.

This may sound odd but I’m not as comfortable sitting with joy in the same way that I’m comfortable sitting with, say, grief or the reality that life is precarious.

I write about grief and precarity a lot, but not so much about joy.

Frankly, I struggle to believe that I deserve joy.

For me, choosing joy is like grasping for a golden ring just out of reach.

The destructive messages I heard growing up from my emotionally abusive dad made me believe I’m not worthy.

I’m not good enough.

I don’t deserve it and never will.

I hated myself for a long time for not measuring up to whatever-the-hell yardstick he was using.

I may, in fact, still have work to do in this area.

I let joy pass through.

Like that hot potato game we used to play as kids, you can’t hold onto it for too long or you’re going to get burned.

All these years later, and after a great deal of therapy, when something joyful happens, I acknowledge it, and then I move on to the next thing.

Joy isn’t mine to hold. Something is going to take it away anyway, so why try to hold on to it?

Precarity interrupts.

For eight amazing days, though, I got to revel in joy.

Most of the time.

Admittedly, there was some anger. Anger that we have to have events like these in the first place and because colorectal cancer is on the rise, especially among young people.

There was certainly grief as we remembered people who should have been at those events, like Gary Bledsoe, Lee Silverstein, Michael Simon, Pandora Rose, and Carol Rivera.

Even so, there was joy, and plenty of it.

Henri Nouwen wrote, “Joy does not simply happen to us. We have to choose joy and keep choosing it every day.”

So, for as long as I can I am choosing and savoring the joy of these last eight days because I’ve never experienced so much joy all at once.

Writing won’t do justice to the whole experience at all, but there are at least four ways that I experienced and am savoring joy.

There was the joy of being with my people, with my men, with the lovely Sarah, and with my best friend.

Here, then, are the highlights of an incredible eight days.

The joy of being with my people.

Both events were gatherings of colorectal cancer advocates. Survivors, patients in active treatment, caregivers.

My people.

People who, when you walk through the door, completely get you, understand what you’ve been through or are going through, and who are instantly bonded to you.

While I’m also a volunteer for a couple of pan-cancer organizations, for now, there is nothing like being in the same place as other people who have experienced the same thing.

In Tucson, there were 300 advocates representing many of the non-profit organizations in the colorectal cancer space.

I met, got reacquainted with, hugged and loved on people from across the country, many of whom I know from social media but whom I’d not met in person.

I got the opportunity to talk to Katie Couric and to Kevin Conroy, CEO of Exact Sciences, who not only remembered me but told me he’s been following my advocacy work.

Mind blown.

I was selected to be an Honorary Observer for the Saturday round of golf, alongside my Man Up to Cancer brother, Joe Catarineau. We observed the lead group, which included Stewart Cink, who was in first place going into Saturday’s play.

It was a cool experience.

I was also part of the kickoff for the next cohort of Fight Colorectal Cancer’s Research Advocacy Training and Support Program. Hanging with Phuong Gallagher, who leads the research program, is always amazing.

In DC, I was reunited with Sarah, Erin, Meredith and Ryan from my 2023 Fight CRC Ambassador class (best class ever). So great to hang out with them again, and to reconnect with the Anjee, Molly, Carole, Elizabeth, Andrew, Theresa, and all of the amazing team at Fight CRC.

I also met and got to hang out with and love on even more people I met for the first time or knew from social media but hadn’t met in person.

My colorectal cancer family has grown by leaps and bounds over the last eight days.

That brings me joy.

The joy of spending time with my guys.

Man Up to Cancer was well-represented at the Cologuard Classic. In a lot of ways, the event was our coming out party. Our logo was everywhere and guys who were also part of the other organizations were there.

You could call it Gathering of Wolves West for the number of guys at the event.

As I said in a previous post, I needed to lay eyes on Trevor Maxwell, our CEO, who I hadn’t seen since last September, and who had the mother of all surgeries late last year. Needed to put my arms around him. Several times.

One of my favorite moments of the week was a very quiet conversation Trevor and I had in the bar area. So much love in those words between us.

Got to love on Joe Bullock, our COO, a guy who has the biggest heart for our mission and who lives to serve the men of MUTC. He, Trevor and I talk or text a lot, so it was great to actually talk in person.

An awesome aspect of the Cologuard Classic was that there wasn’t much of an agenda. There was always something to do, but we weren’t running from session to session all day. Rather, we were hanging in the hotel bar, the restaurant, the pool, at Survivor Central, at the Night of Champions Dinner, etc.

Building relationships.

Strengthening friendships.

Making new friends.

Enjoying each other’s company.

Experiencing the joy of being together.

If I try to list everyone I know I’ll forget someone, but there are highlights.

Our first in-person board meeting with Trevor, Joe, Joe Cat, Don and Ule, and a dinner officially celebrating the birth of our non-profit with most of the board and some of their wives

Long conversation and plenty of drinking with many of the guys and many of the wives who came along, which was so cool.

I have a great, smile-inducing photo of Michael Riehle wearing my glasses, a signature move when the beer has been flowing.

Lots of laughs and shenanigans from Brandon and Andrew.

So many hugs and affirmations of love.

So very much joy.

The joy of time with Sarah.

Sarah accompanied me to Tucson for the Cologuard Classic, which was awesome because she got to meet the guys I talk about all the time.

It was also her first time joining me for an advocacy event.

There were a lot of people, both in the MUTC circle and at the event itself, which was overwhelming for her. I asked her to attend two events, a mix and mingle where she got to meet Ryan and his wife, Emily, Trevor and Sarah, Joe, Don and Lisa, Michael and Sarah, and everyone else.

”Do you like my people?” I asked her at one point.

She did, and asked if I thought they liked her.

I know they did.

While I was glad Sarah was there to meet the guys in my inner circle, it was also important to me that she spend some time resting and relaxing.

As caregiver for her mom, who is in a nursing home in Johnson City, time to herself has been rare over the last year. In Tucson, she got a couple of facials at the resort spa, hung out by the pool, and read books.

Perfect vacation activities that gave Sarah some much-needed peace and quiet.

While Sarah’s return to reality was fraught with travel delays, I was so glad she could come out to Tucson with me.

I left before she did, and she was worried about me because I was already worn out after the golf tournament and had four more days to go.

I assured her that I had someone watching out for me in DC, and all would be well.

The joy of time with my best friend.

Ryan and I text, talk or video chat almost every day, but spending eight days together in person was something we were very much looking forward to.

I also needed to lay eyes on him following his emergency surgery after Christmas to remove a cancerous lesion from his cerebellum.

There are so many highlights of our time together, including uncountable hugs and words of love and affirmation.

Emily and Ryan’s parents joined Sarah and me for lunch on Wednesday afternoon. It was nice to meet his parents and I hope the day comes when he and Emily can meet my mom.

At the mix and mingle event Wednesday night, we toasted with an incredibly tasty bourbon Old Fashioned. The guy got permission from his doctor to stop taking one of his antibiotics so he could drink with me. That’s love right there!

At the Night of Champions we got a selfie with Kevin Conroy. Ryan played with Kevin in the Pro-Am last year, so we both had a connection, and we told Kevin that we are friends. Later that night, while Ryan and I were talking and drinking in the hotel lobby, Kevin stopped, looked at us and said, “I love you guys!”

Cool moment.

Ryan, Emily, Sarah and I took an Uber off property for a night of Mexican food, then Ryan and I continued our night in the hotel lobby surrounded by friends from various organizations. We all talked and laughed long into the night.

In DC, we were Call on Congress roommates. We had great conversations every night. We both have colostomies, so there was no awkwardness about why we made frequent trips to the bathroom.

On Monday night, the Night of Hope dinner, Ryan was presented with the Mike Mancini Hero Award for his relentless dedication to the fight against colorectal cancer. I am so proud of him.

Talking later he said he doesn’t see what others do. Truth is, Ryan connects with everyone in a room. I’m not kidding. Everyone knows who he is, and loves him. He emanates a light that people want to be around. Sunshine in human form. Plus, he’s willing to share his own cancer journey and offer help and support to anyone who needs it.

He deserves the accolades but doesn’t think so.

Sounds familiar, doesn’t it?

We really are two peas in a pod.

On Tuesday, after a great day on Capitol Hill, we were exhausted. Our legs and his back were sore. We planned to order in and go to bed early. We did order in but, as it was our last night together, we sat up talking until 2 am.

Needless to say, we slept in on Wednesday morning before packing and heading to the airport.

It was hard to leave because I don’t know when we will see each other again, but I am so grateful for all the time, and it was a lot, we got to spend together.

For all of the reasons above and so much more, I have a lot for which to be joyful. I’m holding on to this joy for as long as I can.

Even when I don’t think I deserve it.

Especially then, and when life goes pear-shaped, I hope I will remember this joy.

Because life will, in fact, go pear-shaped.

Until then, there will be joy.