Tuesday, June 28, 2016

I Still Pray with My Legs: 8 Lessons from ARVD

Since 2010 I am reminded of something on this day: I am bionic. That should make me feel badass...superhuman...even futuristic? Instead, it is one of the greatest sources of humility in my life (I have several!). I'd like to say that my ICD reminds me of my humanity and my limitations, but the irony is that the very thing it's connected to, my heart reminds me of that truth just as often. The Creator knew what He was doing when he tied literal and metaphorical matters into the same organ.
This is me. It's scary to think too much about, but it's pretty cool too.
In the six years since my diagnosis of ARVD, I have had to let go of many things but I have gained others. Some of the greatest gifts I still hold were given to me at the hardest time—when I was diagnosed and implanted. So in honor of that miracle—and it is one—here are the lessons I learned from an eight day stay at CPMC hospital. There's one for each day.

1. The Miracle is Diagnosis
I show the documentary "Venus and Serena" in Sports and Spirituality every semester; it is utterly captivating. I've written about it many times and I have given the DVD to about three different friends. The unsuspecting viewer is in for much more than a film featuring the triumph of two black sisters from Compton, CA and the success they never should have had. No, it rounds out these two great athletes: they are fashoinistas, shrewd business women; they are best friends and they have had their fair share of injuries and health concerns. 

In addition to various injuries, in the mid-2000s Venus was forced to withdraw from many tournaments due to incessant fatigue, joint pain and what she believed to be a viral illness. Fortunately for Venus, her doctor was able to determine she has an autoimmune disease known as Sjogren's syndrome. 

As I watched this part of her story unfold, I said to myself "the miracle is diagnosis." I don't know if I made that up or learned it from someone, but I consider it a poignant truth. By changing her diet dramatically and adapting a "new normal," Venus was able to return to the tour again.

Once you know what you have, you can work with it. You learn what you can and can't do...or more realistically what you should and shouldn't do. You know how to proceed. I lived with uncertainly for nearly five years about my heart health. I used to joke that I didn't want to be one of those people who dies on the golf course. The sad and scary truth is that I could have been. Once you know you cannot not know. I implore anyone who has questions about their health to work with their physician and others to get answers. #MiracleDX

2. I believe in the Communion of saints
The communion of saints one of my favorite topics to write about only because I have seen saints at work so often in my life. June 22, 2010 is one of those times. Before I went on that fateful run that sent me into cardiac arrest, I went for a brief walk that took me past what was my grandparents' home at 35 Ashbury Street. I hadn't done that in years; I called my mom to tell her where I was and we discussed a few of our memories from their home. Less than 30 minutes later I was in an ambulance heading to the ICU. I will never be able to prove it as true, but I believe my Grandma was with me that day. 

As my heart rate climbed to 275, I stayed calm. I determined I should call 911 at the right time. Cyclists with cell phones passed me at that moment and stayed with me until the EMT arrived on the scene. You can call it luck, but I see my grandma's hand in all of this. 
one of my favorite photos of my mom and grandma
Jim Heft writes, through belief in the Communion of saints, we recognize that "Even though people die, we stay in touch with them and they with us. How is this possible? It is possible through Baptism by which we enter into the death and resurrection of Jesus. Even though Jesus died, he rose from the dead, remaining even more present than when he was on earth to all who believed in him. We live in Christ. Those who have died believing in Christ remain alive in him.Therefore, whether dead or alive, we are connected in love. So when your grandmother who loved you very much dies, we believe that she now continues in heaven to love who she loved on earth, but with much greater intensity and depth and selflessness."

My grandma believed in Christ. She loved God and loved her family—especially my mom. Though she died long ago, her love remains. And St. Ignatius has said "love is shown in deeds more than in words." My greatest memories of my grandma are those of her great love in action—playing cards with me and letting me win, teaching me how to make pie crust from scratch, singing Irish folk songs and more. On this day, she was working in ways I can't explain.

3. Just Show Up
One of the corporal works of mercy is to "Visit the Sick." I understand why. When your health is compromised, you are viscerally hungry for love and friendship. I remember taking to the kindness of certain nurses as though it were a drug and when friends came, so did a litany of distractions, laughs, questions, stories, gifts, treats and more. I still remember what some friends brought with them, like magazines I never would have purchased for myself, but enjoyed reading. Thank you Kealy for purchasing that issue of Vanity Fair. It's sad to say, but the transgressions of Tiger Woods passed a good chunk of time quite quickly. Or, if you know me, you know I'm a big believer in banana bread. Who knew it was my most welcome post-surgery meal? Thanks Betsy! When my family showed up, I remember I could be myself. I didn't have to talk. I could be testy or unpleasant, happy or sad. I didn't have to put on a face of courage or of fear. You never forget those who "Just Show Up" when you are sick.

4. Stay with Me
I can't hear the 2014 Pop hit "Stay with Me" and NOT think of the late SportsCenter host, Stuart Scott. Though Sam Smith's monster hit was overplayed on the radio, it aptly served as the background of Scott's biopic at the 2014 ESPY awards.

Those same words also remind me of a choice my mom made and didn't think twice about. I went in for surgery at 8:00 a.m. and the surgery lasted seven hours. I was transported back to my room and when I woke up, I saw my Mom sitting there and looking at me. I had no idea how much her presence would mean to me. The night before, I told my dad not to come; he and my mom didn't both need to be there. I figured I would come out of the surgery and be fine by my lonesome. To see my mom, smiling and at peace that I came out okay made my heart swell.

It's one thing to show up, it's another to stay. Thanks Mom.

5. You'll never be lonely with a good book
In 1983, we visited our family in Ireland where my appendix decided to rupture and remain as medical waste on the Emerald Isle. It couldn't have been fun for my brother and sister to have their nine-year old sister in the hospital for five days. I'm not sure how my parents managed it all, but they did. When everyone left to return to the Bed and Breakfast at night, I remember feeling a little bit lonely and scared, but not entirely so. And that's because I had a picture book of kittens. 

I was reminded of that book when my nine-year old niece Grace saw a poster of those furry cuties and yelled out "KITTENS!" with glee. I was transported back to that time and place when I felt comforted by something as simple as a good book, even if it's a picture book.

Laura Bush who is an only child said she never felt depressed or lonely growing up because she loves to read. Her words have stayed with me because I think they are true. I don't know if I already had it or if a friend brought it (Skol?) but I read John Daly's autobiography "My Life in and Out of the Rough" from start to finish. Eight days at CPMC hospital and I'm happy to report, it was hard to feel lonely with a big guy, big personality like JD and all the other magazines and articles friends brought. It nourished my mind and my heart. 

6. Stories nourish us
Any extended stay in an unwanted place is likely to build character, teach virtue and test one's humanity. But I also think it will yield a fair share of good stories. My stint in the hospital prompted good ones and sad ones. Regardless, they are mine to tell.

One the hardest stories I hold is about Jill Costello, a young woman I worked with coaching novice crew at St, Ignatius. Jill died the night before I was scheduled to have my surgery. I can't forget the e-mail our Father president wrote about her passing. I read it alone in my room, praying with the image of Jill in her mother's arms when I was interrupted by an unwelcome surprise. A nurse asked me to sign waivers about the implantation of my ICD, informing me of the risks involved with it. I didn't think I would need an ICD. I was hoping for an ablation and a quick procedure. The doctors knew much more.

Jill's death gave me the grace to accept a new life. She has given thousands of people thousands of gifts. For many with battle lung cancer, she has given an important face to a disease that is riddled with stigma (due to cigarette smoking. Jill was a non-smoker). I still feel connected to Jill in a profound way. She left me a grace—to live as she did, even though she no longer could (see Communion of saints).  I share her story with all of my students today. I know it is one of the most important ones that they hear. 

And there are countless others. I think of the $1000 ambulance ride from St. Mary's hospital to CPMC. I shared what was essentially a very expensive taxi ride with my good friend and colleague Naj. We both thought the EMTs were adorable (one was a lefty!) and they got a big kick out of us too. After they left us, Naj said "you know they think we are together." I'm sure she's right; I'll take that as a compliment ;-)

And my favorite story comes from t....

7. Champions come from the heart
His very best story is from when he won
the British Open. Talk to Clinton or
take the photo? 
I can't wait to watch the "30 for 30" about John Daly that should be released soon. I already know a lot of what it will share. I'm didn't know what someone could be addicted to M&Ms among 10 other addictions he holds. Regardless, the a theme from his autobiography also served as the title of my reflection about my diagnosis in 2010. I'll let those words speak for what I learned six years ago and those I've posted today affirm many of those sentiments.

8. I still pray with my legs
Rabbi Abraham Heschel has written "I pray with my legs as I walk." I always prayed as I ran, when I ran. The two were one in the same. Today it's different, and it's still hard to believe that it's something I no longer do... so I'll share my "Love Letter to Running" tomorrow. 

But I recently heard a great quote by Dr. Martin Luther King that touched my heart.
If you can't fly, then run.
If you can't run, then walk.

If you can't walk, then crawl.
But whatever you do, keep moving forward.

It's not a bad way for any one of us to live our lives. Keep moving forward. Do so with other people, and please know you'll meet some remarkable people along the way.

Photo Credits


1 comment:

  1. I wish I was in your class. But thanks to your posts, I get at least part of it. What a wonderful and special point of view. Thanks for giving it to the rest of us.