Thank you for reading this blog. I hope this summer finds you in good health.
Two weeks have passed since we have returned from the US Transplant Games. My muscle soreness has been replaced by atrophy as I’ve allowed myself to relax and not rush to the gym. Ana is back to work, but we continue to go,go,go. Sometimes I feel like I’m driving on empty; but other times I feel like ‘the next exciting thing’ is like a drug that keeps me high. I can hardly stop to smell the roses, before I experience another amazing moment.
The night I returned from the Transplant Games, Andrew implored me to sleep in my bed for one night. In an effort to support him, I obliged. But bright and early the next morning, I drove 5 miles south to attend the CFRI Cystic Fibrosis Teen and Young Adult Retreat in Menlo Park. I was thrilled to greet my old friends and meet half a dozen new attendees. I haven’t missed a CF camp or retreat in 27 years, so even though I was 2 days late, I was there. This is a week-long educational getaway where people with CF, their family/friends and partners can come to reflect on how to live the best life possible with a serious disease. I run the support groups, or raps, but luckily another volunteer was helping me this year. Everyone stays in their own room with their own bathroom; CFers must be 3 feet away from each other and cannot serve their own food; and there are other strict requirements to minimize cross infection.
Throughout the week we enjoyed yoga, pilates, volleyball, hiking, arts and crafts, and very meaningful discussions in rap groups. We talked about how to manage anxiety, loss, stress, our burdens on people we love, the differences between men and women with CF, and family dynamics. We share such a raw, honest, open and loving dialogue, even among the new people, as the old people modeled what’s okay to talk about… everything. I was pleased that about 5 new men joined the group, ages 21-24, who added insight and perspective to the conversation. In rap we really talk. We discuss the undiscussable—death, sex, self-destruction, anger, obsessions- the stuff that makes us human. Wonderfully, the raps were just as emotional and touching as when women dominated the group! This goes to show men with CF are extraordinary men.
The best part of Retreat is living at Vallombrosa Center, a Catholic facility that used to belong to Mark Hopkins, the railroad baron. There is a large lawn surrounded by 100-year old trees. It is an island of peace, serenity and sunshine. And we’re only 4 blocks from El Camino Real and the freeway!
The theme of the week was “CF in High Def: Television!” So each evening we dressed up in silly costumes to reflect Reality TV (I was Bin Laden-CNN), MTV(I wore my signed VH t-shirt), Classic TV (Jeanie from ‘I Dream of Jeanie’), and of course “Emmy Awards” (I wore a black dress). We had our usual fun evenings of game night, movie night, a talent show and awards, but we had special treats this week. We had one evening devoted to awesome interactive Improv by Becca Beddingfield and friends; then one night dedicated to a one man show called “Growing Up Jordy Pordy” that was awesome! It’s about a young man who has 2 brothers with CF; one of whom was the youngest double lung recipient. It was painfully hilarious and extremely touching at the same time. EVERYONE in the CF community must watch this show (jordypordy.com) because Jordan is exceptionally accurate in his portrayal of how CF affects siblings.
So besides being silly and fun, CF Retreat is the one week a year where I can truly open my heart and be equally inspired by the strength, resilience, wisdom and insight of my peers. With The Power of Two, so many people praise Ana and me for who we are- it’s ridiculous- but it’s the friends at Retreat who give me the power and motivation to do what I do and be who I am. I realize that having CF sucks, but one great privilege of sometimes being too sick to work or struggling in the ‘normal world’ is being able to take time out of life and really go back to what humans are meant to do for each other… sit together, share, encourage, feel together and be real. This doesn’t happen enough in the modern work. At CF Retreat, one’s status, education, job, intelligence, or looks really doesn’t matter. We all have one thing in common and a deep respect of how we are dealing with CF. A very deep primitive part of me is awakened and nurtured. I wish everyone could witness this special place.
I have to admit, though, my mind and heart were still partially at the Transplant Games, because the open heart and overflowing love I felt at Retreat was equally strong at the Transplant Games. I kept checking Facebook and looking at my photos to relive the glorious moments just days earlier. My system was on overload, saturated with ecstasy from so many great moments. I wondered why I’m so lucky. Many people with CF are struggling with health, with finances, jobs, responsibility, and here I am, just living hedonistically one moment after another. I feel guilty.
Well, Retreat ended on Monday, and I went home to collapse. I slept. For 2 days, I really slept. My body was exhausted, as evident by the cold sores covering my lip for the prior 2 weeks.
But there was little rest for the weary. It was time to practice pitching the ball. Shockingly, Ana and I were both selected to throw the first pitch at the San Francisco Giants game against the Chicago Cubs on August 11. It was “Donor Day” where the Giants encourage the fans in the stadium to sign up to be organ donors. During Retreat and for 2 days at home, I practiced throwing the ball to a tree from 60 feet away. I was close, but it was going to be a challenge!
On Wednesday morning, I took the early train to San Francisco to attend the all-day Human Resource Services Administration Organ Donation Workplace Initiative Conference. (US Department of Health and Human Services, Department of Transplantation). I gave a short speech and played ‘Amazing Grace’ on the bagpipes. Then I listened to very inspiring speeches by managers and directors of our nation’s organ procurement organization who are passionate, resourceful, and visionary. They discussed ways companies and corporations can adopt organ donation as their cause and find a way to promote this cause within their employees and customers. (If you’re reading this, might your employer consider doing a ‘Donor Day’??) I was again grateful that so many people dedicate their entire lives to save people like me.
Right after the conference, many of us changed into our tie-dye orange and yellow t-shirts and got ready to make our way to the SF Giants Stadium, AT&T Park. About 100 people from California Transplant Donor Network(CTDN) gathered at the Willie Mays statue to work at the donor booths, pass out donor cards, and watch the Game. My film crew and 9 of my close friends and brother came to watch us throw the pitch… no pressure. It was great to be surrounded by donor family friends and recipient friends whom I had seen a week ago at the Transplant Games. I was baffled why Ana and I were given this chance; it seems the donor families are much more deserving of this honor. To this end, I made sure I wore my donor Xavier’s photo on my chest so he was there with me.
We learned that Mark Gardner, a 1998 pitcher, had a late wife who received 2 liver transplants. Because of Mark, for 13 years, the SF Giants have sponsored CTDN and ‘Donor Day’. The Giants Foundation also donate $2500 to CTDN to cover the expense of their High School education program. How generous!
Well, around 6:15pm, we were brought to a special entrance on the side of the stadium, and walked through some tunnel to get to the floor of the field. It looked smaller than I ever remember. The stands were filling up with people. Ana and I were wearing blue and pink down jackets, because it was already around 50 degrees. We put our stuff down on the right side of the catcher’s mound. They were very strict that we couldn’t enter the field until directed. We nervously stretched and rotated our shoulders to prepare for the throw. It was exciting! I had been coached by my pipe band director’s 11 year old, Evan, a Little League champion. I was prepared! My band director said, no matter what, don’t pay attention to what’s going on around the stadium; just aim for the catcher, focus and throw. As 7pm approached, the announcer announced that tonight was also dedicated to fallen police officers. Dozens of police motorcycles encircled the field; and family members of fallen cops lined up as they were announced. Then on the electric billboard, they showed photos of a dozen fallen cops. I noticed ‘Bradley Moody’—he was the Richmond police officer who died in the line of duty… and gave my friend Mike his lungs! Mike is such a friendly, loving man who did the high jump at the Transplant Games! So wow, just then and there, I could honor this officer’s gift of life.
Then, the announcer introduced Ana and me as the first pitchers. We tore off our down jackets. It was time. I could hear them announce the Donor Day and signing up to be organ donors, then they said we were double lung recipients, and the crowd cheered. Ana and I were given balls, and walked confidently to the mound, across flattened dry green grass. It didn’t seem so far. We didn’t want to pitch closer to the home plate, because that would be wimpy and pathetic. If we could swim butterfly, we could certainly throw 60 feet and 6 inches! “This is for our donors”, we said to each other.
So, there we were. Surrounded by 36,139 people in the stands. The high lightening around the stadium made me squint. I looked up, and there were people all around. We were deep in a canyon of orange and black walls. The pitcher’s mound seems so small. For two people to stand on it meant we were both on an angle- awkward. But wow. This was the mound that all of those famous pitchers stood on- Lincecum, Zito… so many legends. Man, some real power and health exuded from this pile of hard sand. I stood sideways, Ana stood facing forward, both of us had our hands on the ball. Ana and I looked at each other, looked at the catchers, and looked at each other again… then Ana said, “Ready, set, go!” I focused. I drew my arm back and twisted and threw the ball as hard as I could— and there it went. Ana pitched in unison. I saw her ball land in the mitt of her catcher, Sergio Romo, #54. I saw my ball roll just in front of my catcher, Mark Gardner, #26 (currently the bull pen coach) and then roll past him, as he didn’t really grab it. It happened so quickly, and it was over. The crowd cheered in an uproar. We walked toward the catchers, who congratulated us, gave us a hug, and I immediately pulled out my Sharpie to ask for their signatures. Then before we knew it, we were quickly escorted off the field. We approached our friends in the stands who congratulated us and cheered us on. What awesome support!
We spent the next few hours sitting in the bleachers, freezing our a***s off even with our down jackets. That’s San Francisco in August! I insisted on staying until the 7th inning to sing “Take Me Out to The Ball Game.” After some of my friends left, I had enough tickets given to me for the Luxury Suites, so we went to warm up in this beautiful room overlooking the first plate. It was gorgeous to watch the game end, with a nice score of 5 to 4, Giants ahead, from this cozy warm box with free popcorn.
That night I couldn’t sleep. The images of the stadium were flashing before my eyes. I could hear the crowd; I could feel the mound under my feet. This was yet another glorious moment in my fully glorious life. Before we walked to the mound, Ana asked our film producer, Marc, “Why does this stuff keep happening to us?” It is true; with no effort on our end, we are granted extraordinary experiences one after another. I like to say transplant is the greatest gift of all, but it is indeed a gift that keeps on giving. I wonder when we’ve received enough? My friend says not to question the gifts the universe gives us, but to welcome them with thanks. That is what I intend to do until my last breath.
And, on another note, it seems that a good number of people signed up to be organ donors that night. Perhaps one of those people in the stands might find themselves in a tragic accident, and because of that decision, they may save the life of my dear friend AM who was placed on the waiting list 3 weeks ago. I wish everyone could live forever, but that doesn’t happen. So I hope Ana and I could play a tiny role by, throwing a ball, to save someone’s life.
Thank you for your interest in our lives. Please take care, and Go Giants!- Isa