I Have Been Provoked | St. Peregrine, Peculiarities, and Time Loops

I am stronger than lymphoma.” Those few simple words on a friend’s Facebook page over the holidays said it all. Just a few short weeks ago, that same friend and I were having lunch at Cured in San Antonio during the San Antonio Breast Cancer Symposium. I had driven down from Austin to visit with her to discuss work we were planning together in 2017 to #changethefight with cancer. I wrote about this journey to Cured and its connection to many other “thin places” in The Love of My Life | Can You Imagine?

As I sit here now, on New Year’s Day, I am awash with emotions. This “I Have Been Provoked” post has been brewing within me for a while, since my last post in this series back at the end of September, I Have Been Provoked | Putting the Gloves Back On. My friend’s Facebook post and my reading of Beyond the Pink Moon by Nicki Boscia Durlester over the past week between Christmas and New Year’s are the spark to the kindling that has been building up these past few months. As the fire began to burn and I prepared to start writing, the title for this post revealed itself this week as well. It was Wednesday night.

My two older children, Taylor and Kyla, were out with other friends. My youngest, Katelyn (12), and I were having our date night. We have a little tradition where we have dinner at Tony C’s at the Hill Country Galleria in Bee Cave, Texas. We have our three favorite appetizers: garlic knots, baked mozzarella and a big Caesar salad to share. We love it. I love it. It is “our thing.” We followed dinner with a stroll around the Galleria and then headed over to Michael’s for a little shopping. One of Katelyn’s gifts is her creativity. It is a joy to watch her dig into a new project, a new area of art. On this night, it was beads for bracelets, earrings and necklaces. Even before heading home to watch a movie, though, I knew the universe was busy. You see our old babysitter, Clayton Verdoorn, was working at Tony C’s that night. He used to babysit the kids before heading off to Savannah College of Art and Design in 2007 and his many international adventures that followed. It had been ten years since we had seen each other. He was back. At Katelyn and my restaurant.

When Katelyn and I returned home, we decided to watch Miss Peregrine’s Home for Peculiar Children. It is a Tim Burton film adapting the story by author, Ransom Riggs. For those that have followed my writing and my story for a while, you know that Tim Burton is a special man. His movies were favorites of my young hero, Kethan Kumar, who regretfully passed from the side effects of his treatments for leukemia in the summer of 2013. His mom and dad were invited by Tim to watch the screening of this film in Austin earlier this year. As she texted me after Katelyn and I finished watching it, “Kethan would have loved it.” I loved it. I love Tim. I love Kethan. Kethan met Tim in the spring of 2013. Tim is a truly special man.

It was a magical movie full of spectacular creatures, spectacular stories, and spectacular film-making, as only Tim can do, and it also revealed the power of “peculiar” gifts. From Jacob, who can see invisible monsters, “hollowgasts”, to an invisible boy, Millard, to Miss Peregrine herself, an Ymbryne, a bird, that not only transforms into human form but who can also create time loops, recreating the same day over and over again, the movie is full of peculiarities. Each of us, though, is peculiar, not just these children. That is the magic of life, and why I Have Been Provoked. I truly believe that if we each harness our peculiar gifts then we can solve great problems. As I said from the stage at TEDxTrastevere in Rome in October of 2013, traveling in honor of Kethan, “can 7B human beings working together carve a canyon through the heart of cancer?

However, the connections of this movie to my story don’t stop there. A few months ago, a dear family friend and godmother to my daughter, Kyla, was visiting us in Austin. When she headed home, she left behind gifts for each of us, which is her tradition, a tradition that means so much to each of us, Taylor, Kyla, Katelyn and me. I have carried in my pocket her gift to me since she left it. It is a token. A small coin. On this coin is an image of St. Peregrine. Peregrine is from the famous Laziosi family in Italy, passed in 1345, and was canonized by Pope Benedict XIII in 1726. He was sainted by Pope Benedict because in 1325, after a vision of Christ, Peregrine was cured of cancer. To this day, Peregrine is the patron saint of cancer patients.

So, here’s the deal. Here’s why I am feeling particularly provoked today at the start of 2017. I am sick and tired of this time loop. We need an Ymbryne, like Miss Peregrine. Not to stop time and keep us in our own respective safe places, before cancer. We need a time loop to jump forward. We need a time loop that carries us forward to a place to where each and every unique and peculiar cancer has its own unique and peculiar answer. We need to see the hollowgast. We need to see this invisible monster, cancer, with all its tentacles, just like Tim Burton and Ransom Riggs’ characters in Miss Peregrine’s Home for Peculiar Children.

For whatever reason, this peculiarity is my calling. I see you cancer, but more importantly, I see past your tentacles and see the humanity of each and every person you afflict. I fight for them. I have Put the Gloves Back On because it is time for a new time loop. And to my friend that is looking at this particular time loop known as 2017 with trepidation, I know that you are indeed “stronger than lymphoma.” I fight for you. I fight for the “lovelies” of Beyond the Pink Moon. I fight in memory of the love of my life, my Maureen. I fight for “peculiar children,” like Kethan. I Have Been Provoked.

I Have Been Provoked | Putting the Gloves Back On

Illinoise - Sufjan StevensIt is a cool and beautiful morning in Austin, Texas. I am sitting at my favorite coffee shop, Teo’s. As I drove into town with my youngest daughter, the light was crisp. It had the orange hues of the approaching fall. As the sun came up, you could see the hints of this orange light touching the highest parts of the trees, glinting off of the leaves. As I write, I am listening to an album by Sufjan Stevens. One of its songs, Chicago (track 9), was dancing through my ears as this light was dancing on my eyes. I’ve never heard this song before I heard it this morning on KUT, but it is perfect.

It is perfect because I met the love of my life, Maureen, in Chicago. As we approach the two year anniversary of her passing, Teo’s is important for another reason. It faces Seton Hospital. I look up, and I see the room in which Maureen and I spent her last day of life. I look up at 7 North and see where I held her hand and kissed her good night for the last time on the night of October 20, 2014. She has left earth, but I know she has not left me or the kids. Mornings like this morning, songs like Chicago from Sufjan, are her little ways of saying hello. While my eyes and my ears delight in this glorious Austin morning, my heart leaps just thinking about every day that Maureen and I had together on earth. Love remains our connection, just like it was what bound us together here on earth.

For those that follow my writing, you know I have several themes. From The Love of My Life to the Powdered Donut Manifestos to I Have Been Provoked, there are patterns to my words. These patterns extend beyond my personal writing to my professional blog, The End of Linearity. One of my themes there is the People Geography of Healthcare. This People Geography theme evolved out of Maureen and my journey through her fight with breast cancer. However, I don’t think “fight” is the right word. Cancer never had a chance. As I have written before, cancer attacks the body, not the soul. Cancer may have been lurking in her body for 11 years, after she was diagnosed in late 2003, but it never stood a chance. Maureen lived life each and every day. She inspires me to this day, and our journeys to MD Anderson Cancer Center inspired my work to “Reweave the Fabric of the Internet to Transform Humanity,” something I spoke about at TEDxAustin in 2011. Maureen was in the audience. I told her of my love for her from the stage.

TEDxAustin - MaureenAs I thought about the title to this post, I was torn between the People Geography series and I Have Been Provoked. I settled on I Have Been Provoked because why I do my work is as important as what I do. Watching the TEDxAustin talk will give you a glimpse into my vision, but why I do this work matters even more. You see I love people. I loved Maureen more than any other, but I care deeply for all people. I went into sales and marketing at Apple, where I met Maureen in Chicago, because it was the best way for me to meet lots of people. I also met lots of people as I sat in waiting rooms with Maureen, at oncologists, at hospitals, at infusion centers, at cancer centers, like MD Anderson Cancer Center, like Lurie Cancer Center at Northwestern Memorial Hospital. I have met lots of people through twitter communities, like #bcsm (breast cancer social media), like #gyncsm (gynecological social media), like Beyond the Pink Moon where I have met many “lovelies.”

What do the people in each of these places and in each of these communities have in common? Cancer? No. What they share is a common humanity in the midst of the toughest fight of their lives. In the midst of the darkness, they shine light. Just like Maureen, they are not defined by their disease. Do each of their cancers have some difficult to pronounce Latin name. You bet, but their God-given names are easy to pronounce: Alicia, Nicki, Christina and so many, many others. These wonderful people are why I Have Been Provoked. It would have been easy to write about the People Geography of Healthcare because this is National Health IT Week, and conferences like Health 2.0 in San Francisco are bringing together technology leaders to discuss the best ways to connect patients (people) with each other and with the best possible care.

However, as I watch and engage the tweet streams, something struck me. Everybody talks about being patient-centric, but everybody starts the conversation from their own silo. Whether it is communities like Smart Patients or PatientsLikeMe or companies like Flatiron Health with its oncology technology or standards fights around “interoperability” between electronic health records, they all start from where they sit, not where the patient sits. They each are doing good work, and I believe are doing good work motivated by a real passion to make a difference for patients, for people. However, what if instead of patient-centric, we had patient-built? Each of these silos and tools are incredibly useful. Crafted by caring and brilliant founders. Yet, they are still silos. What if they could be woven together, with the patient as the thread that creates the broader digital fabric of information they each need for their journey?

Any one who has been through the oncology ecosystem, fighting for their life, just like Maureen and I and so many others, knows how complex the journey is. There is no “one” silo or “one” tool that manages it all. From trying to get scans from one doctor to the next, from reentering your insurance information at each and every provider, from scanning the Internet to find people who are experiencing exactly what you are, it gets complex and complicated fast.

I have “put my gloves back on,” because the work of CLOUD – Consortium for Local Ownership and Use of Data – which I spoke about at TEDxAustin is designed to empower people, and by extension empower all the amazing tools and communities to do more, too. It is all in how we see the problem. It is all in how we think about the user experience. It is about where we start. I start with people. I start with love. I start with Maureen. I start with the orange hues in the trees. I start in Chicago. Where we end up is up to us. Each of us has today, and I Have Been Provoked.


If you have been provoked, too, join us on the journey. Put your gloves on. As I said at the end of my TEDx talk, we want to build this future with you. To be patient-built, we must be patient-supported. If you want to join us on the journey to this future, we are now making our GoFundMe public. You can learn more here.  We are raising funds to build out the CLOUD organization, file for non-profit 501(c)(6) status, and maintain our momentum, ahead of larger commitments from industry, foundations and other organizations. Together, we can advance this future for not only healthcare and the fight with cancer but transform privacy, security, identity and data across many industries.

 

title-boxing-club

March 30th, Birthdays, and Van Gogh

Gary in AmsterdamIn October of 2010, I had the joy of speaking in Amsterdam at an event known as Sibos. Sibos is the annual global event hosted by SWIFT – a global banking consortium of over 8000 banks. The event ended on Thursday, and I did not fly home until Saturday, which gave me Friday to explore Amsterdam, its museums, its concert halls, its beautiful canals. It was an amazing day. I’ve always known that I shared a birthday, today, March 30th, with Van Gogh. However, that Friday in October almost 6 years ago was completely transformative. I felt as if I were floating through the city as I moved between these spaces.

As I celebrate my 51st birthday, today feels like the right day to share this very personal experience in a more public way. As I celebrate my 2nd birthday without my beloved Maureen here by my side, I am becoming more and more comfortable shedding my mask and revealing my core. We only have so many days on this earth. So many days to live. So many days to love. So many days to make a difference. This is who I am. This is my core. This is what drives me. Unlike Van Gogh, my canvas does not include paint. My canvas is people. My art is love. This is who I am. This is my voice.

October 2010
Amsterdam, Netherlands

Well, this week in Amsterdam has been quite the journey.  It started last Sunday as I rode the train up from Brussels.  During the train ride, I still had all of the nervous energy of a schoolchild heading into a test, but I also had the blessing of the story of CLOUD flowing over me as the landscape flowed by us. I can remember vividly riding through Antwerp on the train and feeling my pulse quicken just knowing that my beautiful bride, Maureen, was born in that town.  I also felt the rush of memories of my own time in this town, memories that had Maureen and I together, as well as our children.

Bikes in AmsterdamYeterday was an unbelievable day.  After a truly splendid nights sleep, I was fresh with energy and bounded off to see Amsterdam.  The NH Museum Quarter hotel is in close proximity to the Van Gogh, Rijks and Concertgebouw.  I started the day listening to the voice of Van Gogh reach out from beyond the grave through his oeuvres, works and stories.  It is hard to think of this space as a museum, because as I listened to Yes’ “The Ladder” on my iPhone through my earbuds, I literally felt as if I was levitated and flowing through his life, through his eyes.  Calling it a shrine would be wrong, too.  It was more of a fusion; it was a sense of opening my eyes, through his, to see the landscapes, objects and feelings that he sculpted on to canvas through brush and sketch.  I was literally shaking and bounding from room to room.  The following lines from the last song on Yes’ Ladder flowed through my ears, as I sat on the top floor looking at two Monets, inspired by Van Gogh’s technique:

Nine voices.  This dialogue.  Nine voices. Singing as one.  Nine voices.  This dialogue.  Nine voices.  When the sun came up this morning, each had the power of people.  Speaking new languages.  They give forgiveness meaning.  New ways of letting go.  Each child is born for greatness, with forces that surround them.  This voice.  This dialogue.  This voice. Singing as one.  Nine vocies. This dialogue.  Nine voices.  Singing as one.  His voice.  This dialogue.  This voice. Singing as one.  Nine voices.  Nine voices.  Nine voices.  Nine voices.

Tears flowed freely, because I was feeling the emotions of these painters speak across the generations.  Sitting there on the bench at the Van Gogh, I didn’t just see paintings on the wall. I saw Hardelot, France, where we had visited after the Diercxsens family reunion in Belgium,  and remembered the sunset there on the beach in northern France.  I saw the beaches of Duinberken with my Maureen in April on our anniversary trip this past spring.  As I said in my note to my “brother” and life-long friend from Apple, Tony in an email, all of that emotion was heightened by the sharing of a birthdate with Van Gogh and his ability to paint his canvases through the support of his brother, Theo.

Van Gogh MuseumThe richness of my day in Amsterdam never slowed down.  From Van Gogh to the Rijks Museum, it was stunning to experience yet more works of the great masters and then enjoy a lively walk through the streets and by the canals of the city.  My pace never slowed, and I enjoyed a refreshing Pellegrino and espresso in a little “Australian” shoppe by one corner, tapping out some work on eHealth topics and watching the passerbys enjoying their Friday afternoon and the start of their weekends.

The concert hall was truly beautiful, sitting at the end of a grand park that had the Rijks Museum at one end, the Van Gogh on the far side, and the Concertbegouw on the other end.  It was a quick walk to the Concertbegouw from my hotel on a wonderful brisk evening.  The two operas from Wagner and Brotak were splendid.  The voices of the male and female singers were incredible in both pieces.  Their ability to bellow such sonorous tones did for my ears what the paintings throughout the day had done for my eyes.

With the journey of CLOUD always close to my heart and mind, I could not help but think in the grand terms of this new fabric as I experienced this day. It is remarkable to think about the number of eyes that have gazed on Van Gogh’s works over the years from the days they were first painted to now.  Here is a man born in 1853 that had a flurry of creative force in a decade in the late 1800s, bringing his own life to an end early because sickness was sapping him of his ability to express his creative energy. A couple of quotes on the walls brought this to life for me:

Translating the black and white impressions into another language – that of color.  His originality lay in his ability to improvise with color. Just as a musician interprets the works of a composer, he sought ‘recollections of their paintings; but the recollection, the vague consonance of colors that harmonize in spirt but not in actual fact – that is my interpretation.’

Instead I find it ready-made in nature, though, I still have to extract it.

Van Gogh - Art & PeopleAs I think about how Van Gogh brought together his tools of art, and then allowed himself to experience his contemporaries and not fight the ability to change, I feel his life force.  After a few years of his first experiments with art, after his evangelism, he still did not know that great gifts were within him, that he would be a great master.  But, I know he felt compelled.  He felt drawn. Every component of his soul wanted to paint; it was his love.  The months in the hospital must have depressed him greatly, because he was pulled away from the very nature he wanted to express. You can see it in the paintings he made there.  The trees he painted weren’t just another style, with the starker lines and edges, they were trees seen through the eyes of a sad man. He knew that the physical gifts he needed to keep painting were waning, and that his ability to extract life out of his love for painting would be coming to an end sooner than he desired. He just couldn’t imagine living not doing what he loved.

As I look back on these words now, almost 6 years later, this last line really resonates. “He just couldn’t imagine living not doing what he loved.” As I begin my 52nd year on this beautiful earth, I can not imagine a day not doing what I love. None of us should. Find your love. Find your voice. In the words of the song by Yes, “Nine voices.  This dialogue.  Nine voices.  When the sun came up this morning, each had the power of people.  Speaking new languages.  They give forgiveness meaning.  New ways of letting go.  Each child is born for greatness, with forces that surround them.” Greatness is indeed our birthright, and I am truly blessed by this life and all those with whom I share it.

I Have Been Provoked | David Bowie’s Heroes & CLOUD

david-bowie-aladdin-sane1983. September. Freshman year at Northwestern. Although I joined a residential college at Northwestern University, rather than a fraternity, I still remember heading to the rush parties. My dorm room was in the fraternity quad, so the music was going to keep me awake anyway… may as well dance… well, I guess you would have to say I moved around a lot. David Bowie danced. I simply enjoyed his music so much that my heart, mind and body were moved to motion.

David Bowie’s “Heroes” had been written together with Brian Eno several years earlier in 1977. The song to which I once danced on the shores of Lake Michigan at Northwestern was the backdrop to a post I wrote almost a year ago. “I Have Been Provoked | Part Two” was infused by Peter Gabriel’s cover of this song at Verona in 2010. It is an incredibly moving performance of a wonderfully powerful song. I enter 2016 in a very different mental space than I did a year ago. My beautiful bride of almost 25 years had passed away in October of 2014 after a courageous and noble on and off 11-year battle with breast cancer. I was dealing with a rush of emotions, and I entered 2015 choosing to be provoked, rather than angry.

This past week I wrote a post as part of The Love of My Life series that defined where I am personally as we enter 2016. I have been mulling over a parallel piece for my professional work. David’s passing today, especially from cancer, sparks this newest installation of I Have Been Provoked. As I noted in “I Have Been Provoked | Oh, The Places You’ll Go” last summer on Maureen and my 25th wedding anniversary, which I still celebrated, when I get past Part 2, I realize that the theme has staying power, so I begin to title the newer posts. Oh, The Places You’ll Go had a decidedly Dr. Seuss theme to it. Today’s is about Heroes, because as David once sang, “we only need to be heroes, just for this one day.” Today, I write listening to Blackstar, his new album released just days ago.

Screen Shot 2016-01-11 at 12.09.51 PMIn my personal post this past week at The Love of My Life, “Transitions | 2016 and The Trail Ahead,” I used the theme of being at a trailhead at the start of the new year and being on a journey without a map. Love is not a destination. Love is a part of our journey, and the same love that I continue to share with and for Maureen has always infused my work on CLOUD – Consortium for Local Ownership and Use of Data. As I noted in my TED talk at TEDxAustin in 2011, “Reweaving the Fabric of the Internet to Transform Humanity,” it was our journey to MD Anderson Cancer Center due to the recurrence of Maureen’s cancer that is at the heart of CLOUD. This post is not about the what of CLOUD but the why. The best way to understand the scope of CLOUD is to watch that talk at TEDxAustin, something I did just now. A little over a minute into my talk, I address my Maureen from the stage… it moves me to tears now. Then, as now, she is the love of my life. She is the why of CLOUD. I hate cancer, and I have been provoked.

For the past 2 years, my wife’s battle has taken me away from the mission of CLOUD. 2014 was spent grappling with Maureen’s breast cancer as it metastasized, and 2015 was spent recovering as a family from her passing in October of 2014.  Her love continues in this world, not just with me, but our 3 children, Taylor, Kyla and Katelyn. 2016 brings me back to the mission to reweave the fabric of the Internet, to the work of CLOUD, to being provoked. The challenge with our information systems today is that they are like chemotherapy. They work, sort of, but they have side effects. Those side effects can be seen with privacy, security, identity and data. Although the work of CLOUD will span all information, I have been provoked and am driven by this single solitary purpose:

I have been provoked because I’ve watched cancer in the faces of too many people in too many waiting rooms at too many oncologists at too many cancer centers.
It is time to hit the trail. Join us.

Embracing Uncertainty | What is Our Wild?

Where Am I Going?You know that feeling. The feeling you get when you turn the page, and there is nothing on the next one. Or perhaps, that moment when you reach a fold in a map where the trail ends (of course, the paper ones before smart phones made them electronic). Or perhaps that moment, like the one Cheryl Strayed faced in the movie Wild. My daughter, Kyla, and I watched this yesterday afternoon as the rains cleared in Austin.

Kyla’s history teacher had suggested Wild as a possible backdrop for her trimester project in his class, rich in natural beauty, rooted in history with John Muir and the Pacific Crest Trail, as well as a personal story that is incredibly powerful. There were some intense moments in the movie, moments that can make a dad uncomfortable, moments that you would prefer a daughter could watch with her mom to explain. However, just like buying bras, these are our moments now. These are the moments that a daughter and her dad handle together now, because like Cheryl, Kyla lost her mom.

There is a great quote about dads from Cheryl’s book, “Wild: From Lost to Found on the Pacific Crest Trail,“ from which the movie was adapted. “The father’s job is to teach his children how to be warriors, to give them the confidence to get on the horse to ride into battle when it’s necessary to do so. If you don’t get that from your father, you have to teach yourself.” As the kids and I move forward into year two of our grief journey, some things are becoming clearer, others less certain.

Screen Shot 2015-11-08 at 10.37.15 AMOne thing that is certain is something Taylor, our son, said in his interview with KXAN this past week: “You could not tell she was dealing with breast cancer. We never focused on it,” said Taylor. “We kept pushing forward and we kept doing things, and I figured after her passing I needed to do something. I couldn’t sit around.” Much like Cheryl when she took her first step on the trail, we don’t know where we are going. As Cheryl put it, “I didn’t know where I was going until I got there.

The kids and I aren’t sure of where we are going. I don’t think any of us are really. However, as I have written for over a year, I do know the fuel for our journey. Love. For 25 years, I filled the tank of love with my beloved Maureen. For 16 years, she and I filled it together for Taylor. We filled it for just over 13 with Kyla, and a little short of 11 years for Katelyn. The great thing about love is that it is a fuel that never runs out. It is also a fuel that runs in both directions, as Cheryl notes in her book. I am not just teaching the kids to be warriors. They are teaching me. And, like Cheryl, I feel compelled to write.

As I think about Barton Ballard’s suggestion to watch this movie, I am realizing that there is much for me to learn from it, not just Kyla. Kyla teased me at the end, noting she plans to start her paper with something like this, “I watched the movie Wild with my dad. He spent a lot of time crying.” I did spend a lot of time crying. I can not put into words, no matter how long I write, just how deeply I loved and love Maureen. As I watched Bobbi in the movie deal with her lung cancer (one month rather than Maureen’s 11 years), I saw in her the beauty and strength with which Maureen handled her journey. I think a lot about Maureen’s journey. I think a lot about what was going on inside my sweetie. But like Taylor said on KXAN, “You could not tell she was dealing with breast cancer.

So, as the kids and I face uncertainty, we are going to do things. In the words of Robert Frost used by Cheryl on the trail, “I have promises to keep and miles to go before I sleep.” Like I told Taylor just before his interview with KXAN, this isn’t just about the things we do. This is about inspiring others to do things, too. We each have amazing gifts as human beings. We are each endowed by our creator to do great things. If each of us does our “one thing,” then we will, as I say frequently, “change everything.” This isn’t about us. This is about all of us. We will share our story with courage, like Cheryl did, In the words of Brené Brown, we will live wholeheartedly.

Over the next few weeks, as we embrace our uncertainty and head into the holidays, we will become more intentional. I found this napkin sketch by Carl Richards from his “Your Money” column on Brené Brown’s site. It captures our thinking perfectly. Ask what is to be done next, do it, repeat.

Embrace Uncertainty

We have three things to be done next: 1) the writing of the book, The Love of My Life, now with a co-author, Taylor, my son, 2) Taylor’s Habitat for Humanity house in Maureen’s honor, and 3) my traveling to India with A Fresh Chapter in March 2016 to take my experience with cancer as a caregiver into the lives of others.  As we follow along with the napkin and begin to repeat, we will capture our love at the website, The Love of My Life, and the doing at Team Powdered Donut (not yet launched). As we embrace uncertainty, we expect these websites to become community ones, places where not just our stories of love and doing are captured, but instead places where all of our “one things” are captured, because together, love can indeed change everything. That much is certain.

My Mom | A Letter From Her Son, Taylor

Mom & Baby TaylorMaureen in New Orleans

Mom,

We still have so much to talk about. I still have so much to ask you. You still have so much to teach me beyond the love, strength, grace, and compassion you demonstrated every day. I want to go back to the day. October 19th. Two days before your passing. The day we sat together on the couch in the living room as I assembled an essay about things falling apart. With oxygen passing through tubes by your nose, when things were indeed falling apart, you exuded a delicate strength. Your quiet fortitude then and your quiet fortitude now have always and will always hold our family together like the cornerstone in each of your buildings. I wish I could see you one more time. Your tall, striking, poised figure. Your deep, calming brown eyes, eyes that came with a smile that shined not just happiness but a peaceful certitude. I wish I could hold you forever; I wish I never let you go that day on the couch. I know these aren’t just wishes. I know that you will be with me forever as I continue my journey through life. Keep in touch mom. I love you.

Sincerely,

Taylor

The Love of My Life | “You Will Never Know a Love Like Mine”

Powdered Donuts on the CornerIt was Friday night. 2 weeks ago. In San Antonio. Taylor, Kyla, Katelyn and I had just made the drive down 281 from Austin for a weekend in the Hill Country. We had settled into our hotel, and I had popped down to the corner Walgreens, along the Riverwalk, to pick up some powdered donuts. The Riverwalk is a special place for our family, both before Maureen’s passing a year ago and since. Actually, I can still remember the first time I visited the Riverwalk with Maureen. It was the Friday after Thanksgiving, the year we had moved to Austin in 1994. She and I sat there basking in the sun, enjoying a beer, thinking to ourselves, wow, it is probably pretty cold back in Chicago, from where we had just moved that summer!

The kids and I had come not just to celebrate but to reflect on a very emotional month in our lives. On Friday, October 9, tomorrow, the one year anniversary of Maureen’s passing from this world to the next was still two weeks hence. We knew we needed time then to be ready for now. We knew we needed to come back to the Riverwalk. Like Heraclitus, this river is never the same twice, but the love that flows through it is never changing. It is where we stayed when Maureen and I took the kids to Seaworld. It is the place of Bubbles AND Powdered Donuts. And, on this night, it is the place where heaven once again intersected earth.

Foodies @ CuredEver since my visit to Cured back in June, which I wrote about here, I have been raving to the kids about this awesome restaurant in the Pearl Brewery area of the Riverwalk. These three kiddos are foodies. They know chefs; they know good food. For almost a decade, Maureen, Taylor, Kyla, Katelyn and I would watch the latest season and episode of Top Chef on Friday nights, eating pizza, laughing at the bleeped out words from the chefs as they crafted ingredients into amazing dishes, rooting for our favorites, dissing those chefs who weren’t playing well or being nice. The kids and I had walked by Cured before, during our trip to San Antonio over the holidays last year, the trip that led to the post on Bubbles AND Powdered Donuts.

This Friday, however, rather than the river taxi we rode over the holidays, we climbed into a cab. A simple yellow cab. In the short trip from our hotel over to Cured, heaven pierced the veil with earth, and our family of 5 was reunited as we headed to dinner. Music was playing as we climbed into the cab, and these are the words we heard:

You’ll never find, as long as you live
Someone who loves you tender like I do
You’ll never find, no matter where you search
Someone who cares about you the way I do

Whoa, I’m not braggin’ on myself, baby
But I’m the one who loves you
And there’s no one else! No one else!

You’ll never find, it’ll take the end of all time
Someone to understand you like I do
You’ll never find the rhythm, the rhyme
All the magic we shared, just us two

The kids knew long before I spoke what was happening. Just like one year ago, Maureen was using music to talk with us, to share her love. A year ago, she played Chicago’s Once in a Lifetime through my iTunes library to talk with me alone. This Friday night in San Antonio, she was talking to all 4 of us. The kids couldn’t see what I could see, though. I looked down at the screen of the iPhone of our cab driver. These amazing words were from Lou Rawl’s song, “You’ll Never Find a Love Like Mine.” Before we got out of the cab, I knew I had to share with our driver what had just happened. I knew he would understand because on his dash was a picture of Jesus and the Virgin Mary. The kids told me later that our cab driver had tears in his eyes. I know I had tears in my own.

I shared with our driver the story of Maureen, our journey, our reason for heading to Cured, and why this song was so powerful to us. I told him that heaven had intersected his cab on this short journey from our hotel to the restaurant. I then asked him his name, and I was shaken to my core. Abraham he said. Abraham. Abraham is the father of a nation and of a faith. Before God came to him, he was Abram. After God has chosen him, he and his wife, Sarah, who were childless to this point, were parents to a multitude and to a nation. Abraham represents God’s covenant (promise) with us, His people.

I know because of God’s covenant with us through Christ that my precious, beloved bride, Maureen is with Him. I also know that heaven is far closer to our daily life than we can even imagine. Maureen and Lou were right. We will never find a love like Maureen’s. We will never find a love like God’s. I can honestly say after a year that I love Maureen even more now than I did the day she passed. Love goes far beyond our physical bodies and the physical world. She and I may not hold hands anymore. She can’t hug the kids like she once did. However, none of that stands in the way of love.

Lifting the VeilJust over 25 years ago, when Maureen and I stood at the altar of St. Matthew’s Episcopal Church in Evanston, Illinois, we, too, made a covenant. Through the sacrament of marriage, we made a commitment that said quite simply what God has joined together, let no one put asunder. Not even death can stand between us and our love. On that beautiful July afternoon, I was not just lifting the veil to the most beautiful woman in the world. I lifted the veil to heaven.

My Mom | Reflections by Her Loving Son, Taylor

Cupcakes at Church in Chicago“Blessed By Angels Unawares” | Hebrews 13:2

When I was fifteen, I lost my mom to breast cancer. The day was October twenty first, and I was sitting on the left side of the library at the table near the window. As I was confirming my fantasy football lineup, Mrs. Winter, wearing a white cardigan, brown shirt, and white jeans entered through the front doors. She informed me my dad was in the front office. I didn’t think anything of this information or her arrival. However, as I entered, my dad wasn’t the only person there. My aunt, a short, grey-blonde, spitting image of my mom was there as well. Their faces were both blank. My dad broke the silence with two words, “follow me.” He led me to the little hill near the office where the grass fades from green into yellow. He said, “your mom’s sodium levels dropped last night. We don’t have any more time. She is already gone.” I didn’t know what to do with myself, so I started running. I ran to the track and never looked back.

1506946_10151956486513660_1321719001_nFour months later, I was still running. This time I was running a half marathon through the streets of New Orleans in memory of my mom, side by side with my dad. We ran stride for stride with each other for thirteen point one miles. Throughout this ordeal, we both had moments of doubt and fatigue, but when the miles got tough, we thought of the countless chemotherapy sessions my mom endured with a smile. As we ran through the French Market just off Jackson Square where Decatur Street meets Esplanade Avenue; I hit a turning point. With the smell of beignets drifting behind me and a water stop just in front of me, I could imagine myself crossing the finish line.

Over the past eleven months, there have been moments where my mom’s presence has been almost tangible. The most significant of these occurred as my two cousins and I paddled a two man kayak a mile off the shore of Fort Morgan, Alabama to fish. We fished for an hour, but as we turned for home, the situation turned for the worst. The weight of our three bodies caused the kayak’s hull to take on water. After each stroke, the kayak would rock unsteadily back and forth until it finally flipped. Our rods sank, and our tackle and ice chest scattered across the Gulf of Mexico. We tried to right the kayak, but our attempts were futile. After half an hour of this, we were almost out of options. We decided to swim the mile back to shore with our guardian angel watching over us the entire way.

The Three Amigos

 

 

Love, Powdered Donuts, Dragons and Dragonflies | Changing How We See

Heather's Hentai Dragon“We each carry within us our own dragon.” As I sat with my dear friend, Martin Kohout, over a drink this summer, these words didn’t just resonate at that moment, but they have been tickling my soul for weeks. As fellow parishioners, Heather Kohout said so many things over the years that caused me to think about scripture and life differently. Her children did the same thing at their mom’s celebration of life, not days after Maureen’s passing last October. “We each carry within us our own dragon.”

The past month has been an intense one. When I wrote “The Love of My Life | Have We Left our Mark?” at the end of July, I noted that my precious daughters headed east after our beach vacation. They headed east with Maureen’s mom and dad for time with both their grandparents and cousins, first in South Carolina, and then to North Carolina for time with my mom and dad, sister, brother-in-law and their “Thompson” cousins. Taylor and I not only headed west, but I realize now that I also headed inward. By closing my eyes and opening my heart this past month, my vision has both exploded and expanded.

For those that follow me on Facebook, they know that the dragonfly was an incredibly important symbol during our time at the beach. I’ve been allowing this image of the dragonfly to “flutter” in my mind’s eye for the last several weeks, just like Heather’s dragon. Unlike the crystals of sand along the beach, Maureen’s ashes and the powdered donuts that led to Have We Left our Mark?, the imagery of the dragonfly and its symbolism was only just starting at the beach. Everything that has happened in the last month as I have looked inward is a part of the bigger picture and changing how I see.

DragonflyDragons and dragonflies. The dragonfly is an incredible work of art and truly an impressive creature. In addition to its horizontal and transparent wings that allow it to fly in six directions, the dragonfly can “see” in dimensions that we as humans can not. Dragonflies have what are known as compound eyes. In addition to the compound structure that allows the dragonfly to see up, down and behind them, their retinas can see more than just the red, blue, and green of a human eye. The dragonfly can not only see four or five different colors, many that are beyond human capability, but they have more “facets” by which to process these images. Equally interesting is the brain power of the dragonfly that is dedicated to its sight. Not only does the dragonfly eye allow it to see 360 degrees around it, but 80% of its brain power is dedicated to sight. The dragonfly, in almost every part of the world, symbolizes change and change in perspective. As noted by the Learn about Nature website, the word dragonfly has its source in the myth that dragonflies were once dragons.

I did not know any of this when a huge dragonfly flew into the beach house at Ft. Morgan, Alabama on the Sunday night we had arrived. For those that have read The Love of My Life | Have We Left Our Mark? you know that Maureen’s father acknowledged his wonderful daughter and my beautiful bride in a prayer over dinner on our first night. Rather than hide from the powerful emotions coursing through all of us, we honored the love we all felt for Maureen and from Maureen. Not long after dinner, a dragonfly flew in an open door. I didn’t think much more about this winged creature until the next morning when I awoke early to head out on one of my three 40 mile bike rides of the week. It was quiet in the house, so it was easy to hear things. As I put water in my bottles and pulled out some bananas and Cliff Bars for the ride, I was startled by a rustling sound. I could not figure out for the life of me what it was. Then, I saw it. It was the dragonfly. Its wings were fluttering at the edge of the windows, looking out at the water, wanting to fly free. Just like God had opened the door to heaven for Maureen when she flew home 9 months earlier at Seton Hospital in Austin, I opened a door to the house that allowed this dragonfly to be released and to fly free.

That wasn’t the last of dragonflies at the beach. As if to be sure we “got it,” a whole fleet of them flew by the tent on the beach later in the week going from east to west, so many of them that it was simply impossible for us not to notice. And that is the thing about sight and “seeing.” How much of life do we miss because we simply aren’t looking at things in enough dimensions? How much of our sight is limited to red, green and blue? How much more could we see if we also used 80% of our brain for sight? As my new yoga practice has been teaching me in just the last few weeks, to see sometimes we actually have to close our eyes. We have to look inward. Heather had the courage to look inward and to see her cancer as something that was as much a part of her as everything else that made her a special gift from God. She symbolized her cancer, her dragon, with the amazing henna at the top of this post that adorned her gorgeous bald scalp. I am so thankful to Martin for this image, for his Heather and for him sharing the story of the dragon.

alice_in_wonderland_jabberwockyI am thankful because the dragon also connects to another deeply powerful image from my journey in the fight with cancer. I am bald because I love Kethan Kumar. Kethan would be an 8th grader this year, along with my daughter, Kyla. This courageous “little man,” as his mom, Sumithra, calls him changed not just my head but my heart. As this story from the Leukemia and Lymphoma Society about Kethan makes clear, Kethan had a form of cancer known as Acute Lymphocytic Leukemia (ALL). Although 85 – 90% of kids that get ALL survive, Kethan’s kind kept relapsing. In the summer of 2013, just before his 11th birthday, Kethan passed from this world to the next, releasing a human rainbow of one in the sky above his home. His celebration of life occurred a few days later on July 14, which is also the anniversary of my marriage to Maureen. I am convinced that this “connection” is more than just 2 dates that coincide on a calendar. Just like Heather Kohout, Maureen and Kethan never let their “dragons” change their flight. Cancer never changed the luminescence of their wings. They simply saw things differently as they flew through life.

This is where it all comes together, from the posts I made in My Tribute to Kethan years ago to The Love of My Life to the Powdered Donut Manifesto to I Have Been Provoked. Kethan and I had a code word for cancer. We called it the jabberwocky. For those that know Kethan, they know he adored Tim Burton and that Tim’s movies carried him through some of the darkest moments of his treatments. One of Kethan’s favorite Tim films was Alice in Wonderland. It has become one of mine. On Frabjous Day, Alice slayed the Jabberwocky with the Vorpal Sword. As I paid my last respects to Kethan in his home on the day of his passing, I promised him that I would forever remain his Alice, his champion, and that I would I would do all in my power to slay the jabberwocky, the dragon of cancer.

However, as the last month has unfolded, and I have dwelled more on the meaning of the dragonfly, I am beginning to see the “slaying of the jabberwocky” in a new light, a new dimension. If Heather is right, that we each carry within us our own dragon, then do we slay it by killing it, like Alice, do we eradicate it, like we try to do when we “fight cancer”? Or, perhaps, instead do we go beyond our limited sight? Do we add “facets” to our seeing, like the dragonfly? Do we dedicate more of our “vision” to seeing by dedicating more of our brain to our sight? Do we see more by closing our eyes? When I close my eyes at the end of a yoga session, I begin to see. I see not just me, but I see Maureen, and I see love. And when I see love, I am suddenly able to see everything. I see both dragons and dragonflies.

The Love of My Life | Have We Left Our Mark?

IMG_4174I am on a flight to Chicago, having just returned to Austin yesterday from a week at the beach along the shores of the Gulf in Ft. Morgan, Alabama. As my son and I drove west, my daughters, their grandparents, and their cousins headed east, to South Carolina, to the home of Maureen’s mom and dad in Callawassie, near Hilton Head. Our time at this beach started 12 years ago to celebrate the 40th anniversary of Henry and Ann Diercxsens. Being at Ft. Morgan is a beautiful tradition, and this week was another one of those firsts that my son, Taylor, wrote about a few months ago on Maureen’s birthday at the end of April.

This was the first time that all of us were together at the beach, without Maureen, the first time we were together as her family since last October 25, 2014 at her celebration of life. As I wrote before heading to the beach, July 14 was the 25th anniversary of my marriage to Maureen. July 6 was the 52nd anniversary for her mom and dad. As the week unfolded, it is clear why so much love washes over this whole family. Henry and Ann, Bon Papa and Bonne Maman are two truly amazing individuals and an unbelievable couple. They are like two big kids, and they are so in love with each other. Bon Papa shared that love at the dinner table on Sunday night, after we all enjoyed our first day at the beach, all 16 of us, all around the same table. As Bonne Maman would say, for as wonderful as the house we rent is, perhaps it is this big table around which we all can sit that makes this house our home away from home.

IMG_2129At this table, Bon Papa gave a prayer, a small speech, not unlike the one he shared at the reception for Maureen and my wedding 25 years ago. He eloquently and beautifully acknowledged what we were all thinking, what we were all feeling. We obviously all shed a tear around the table, but in that moment, as I sat across from Bon Papa, from Henry, tears flowing from my face, tears flowing from his, I felt a connection I never fully understand until that moment. We both loved his little girl, his Maureen, more than any words can describe. (With daughters of my own now, I understand what it means to love your little girl, Bon Papa.) For 25 years, he showered his love over his little girl, his Maureen, as only a father can. On July 14, 1990, he walked his little girl, my bride, up the aisle at St. Matthew’s Episcopal Church, to hand his daughter’s hand to mine in marriage. I was honored by the chance to carry his torch, to love his little girl for the next 25, to join my love with his.

Heading into this week at the beach, I thought I was going to be writing about Maureen and my honeymoon to Denmark and Norway, that immediately followed our wedding in Evanston, Illinois. However, as I’ve discovered frequently with my writing, what I plan and what I actually write are not always the same thing. Although I think it is because I stay open to the events around me, it is more likely simply Maureen and God making things so completely obvious that my fingers can do on the keyboard what they are both telling me in my heart. This was one of those weeks. Bon Papa opened the week at the table with his words, and on Tuesday, July 21, the 9th powdered donut day since Maureen’s passing, I followed suit. We both laughed that neither one of us is afraid to talk!

IMG_4130However, powdered donut day was not celebrated at the big ol’ table in the house. It was instead celebrated on the beach, under the big tent, city hall as we call it. It has to be a big tent, because there is so much love underneath it. For you see, this tent doesn’t just house the Diercxsens but the Deakins. This beach tradition, this love, isn’t just 12 years old. It is decades old. The Deakins and the Diercxsens are neighbors from Ridgewood, New Jersey. Their girls and the Diercxsens’ girls have been friends for as long as they have known life. Susie Deakin was not only in Maureen’s wedding but is the godmother of our youngest daughter. Barb Deakin, Suzanne and Dominique are not just friends but sisters. The Deakins and Diercxsens went to the Jersey Shore for years, just like we go to Ft. Morgan, Alabama now. Although the Deakins started joining us in Ft. Morgan just a few years ago, it feels like they have been part of the tradition since the beginning. In a sense, they have, because it is the love these two families share that make the beach so much fun.

The full symbolism of this moment didn’t strike me until I reached this part of the story, today, as I type. It is this. Love is just too big to ever be trapped at one table, in one house, in one family. Love is huge, and as I said under the tent, there is always more than enough love to go around. The last time we had all shared a powdered donut was in Austin, after Maureen’s “celebration of life.” As I wrote in The Love of My Life | From Twelve Donuts to One, there was only one powdered donut at the shop that day, but we all shared that one donut together, in communion, because we all shared in the same love for Maureen. Last Tuesday, at the beach, we all had our own donut as I reflected on the love under that tent. I told each of the kids to look around the tent, to look at their own parents, to look at their grandparent(s), to look at their aunts and uncles, because in those faces they can see the power of love. If they looked closely, they could see almost 200 years of marriage represented under that tent. To know their lineage, to know where they come from, is to know that love. That is the legacy of Henry and Ann. That is the legacy of Jane Deakin. Just like the sand on the beach, there is always more than enough love to go around.

Later that evening, Taylor, Kyla and I walked down the beach to the waves below Windsong, the home in which we stay. With us, we carried a portion of Maureen’s ashes. We reflected on the day; we reflected on our love for each other; we reflected on our love for Maureen; and we reflected on our walk from a year earlier. Then, we bowed our kids and said the Lord’s prayer together and sprinkled ashes into the waves. Actually, it was Kyla who sprinkled them that evening, and the wind carried them on to my feet. To be honest, at the moment, I was a bit irritated. But only for a moment, because I quickly realized this was Maureen being blatantly obvious, so I wouldn’t miss it. She was reminding me of our priest and his homily at her service in October. He told us to Love Where Your Feet Are. My sister-in-law, Suzanne, wrote beautifully about this at her own blog, Suzanne Jumps, in a post of the same name. I just read it again now; it is awesome! As the ashes landed on my feet, I suddenly knew. Actually, to be more accurate, I understood. Love where my feet are.

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Before driving away from the beach yesterday morning, I took one last walk down the beach, listening to some tunes, thinking about love, thinking about Maureen. My eyes were first drawn to the sand by the sight of two footprints, one small and one large. I realized as I looked at them that a small child was walking with someone older, sharing a moment, sharing their love. I don’t know who they were, but that was the point. Love is everywhere. The steps closest to me were still fresh, but the ones further away, were already being smoothed by the action of the waves. That sight immediately tugged at me, and I knelt down to capture a picture of this… a picture of where feet had been. As I opened my iPhone camera, I then saw my shadow next to these footsteps and felt all the pieces coming together. Just like our shadows, where our feet are, matters. Just because the waves wash away the footprints in the sand does not mean you haven’t walked along the shores of life. Even though the imprints of Maureen’s footsteps may smooth as time passes, her love won’t. She has left her mark on more hearts than we may ever know. Because just like the powdered donuts under the tent, there is always more than enough love to go around, just like the sand.

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p.s. No post on footprints would be complete without my favorite poem…

One night I had a dream… I dreamed I was walking along the beach with the Lord, and Across the sky flashed scenes from my life. For each scene I noticed two sets of footprints in the sand; One belonged to me, and the other to the Lord. When the last scene of my life flashed before us, I looked back at the footprints in the sand. I noticed that many times along the path of my life, There was only one set of footprints.

I also noticed that it happened at the very lowest and saddest times in my life. This really bothered me, and I questioned the Lord about it. “Lord, you said that once I decided to follow you, You would walk with me all the way; But I have noticed that during the most troublesome times in my life, There is only one set of footprints. I don’t understand why in times when I needed you the most, you should leave me.

The Lord replied, “My precious, precious child. I love you, and I would never, never leave you during your times of trial and suffering. When you saw only one set of footprints, It was then that I carried you.