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.

Our Story | Marriage & The Greatest of All Positives

At the start of the order of service for “The Blessing and Celebration of a Marriage” in the Episcopal Church’s Book of Common Prayer, these words are spoken by the priest as the ceremony begins:

The union of husband and wife in heart, body, and mind is intended by God for their mutual joy; for the help and comfort given one another in prosperity and adversity; and, when it is God’s will, for the procreation of children and their nurture in the knowledge and love of the Lord. Therefore marriage is not to be entered into unadvisedly or lightly, but reverently, deliberately, and in accordance with the purposes for which it was instituted by God.

For those that have read the first two posts in this sequence of Our Story on the “Triple-Positive,” you know that Maureen and I did not enter into marriage unadvisedly or lightly. You also know that I was most deliberate about the privilege of spending the rest of my life with this truly beautiful women, having met at Apple and knowing that I would marry Maureen even before we started dating. I had planned to make this particular post over the weekend but got a little delayed, however as I started to type, I just noticed what day it is… the 14th… 24 years and 3 months to the day that we were married. We were married on Saturday, July 14, 1990. So, this is the right day to talk about the greatest of all positives. I can think of no other way to tell our story of marriage, the greatest of all positives, than to walk through the above passage section by section.

“The union of husband and wife in heart, body and mind is intended by God for their mutual joy.” Joy. 8,853 days of joy to be exact. I just did the math and threw in a couple of extra days to account for the leap years over the last 24 years and 3 months. Needless to say, the one day back in late 2003 when we first heard the words, “you have cancer,” was not one of joy, nor the ones where it came back or metastasized. However, that is not what this passage in the order of service is about. We define joy, not disease, and so, the very simple act of dropping Maureen off at her office this morning was one of joy. My heart leapt, my body tingled, and my mind smiled just watching my beautiful bride walk into her building.

I have felt this joy since the first day we drove into the Apple office in Chicago together. I haven’t mentioned this before, but for the 6 months we dated, no one at Apple knew we were dating… well, almost no one. It isn’t that we had anything to hide; we just wanted to be private about all of it. We were the two youngest in the office, and I had a company car, so no one was ever surprised that I would drive Maureen to various events. There is a corny scene in Sleepless in Seattle when they hold hands, and they know. It is true; I knew; the first time. We held hands in the car as we drove to the office. However, we must have held hands at some event, because one of the VPs on another floor left a message for our manager sometime around February or March, “Hey Sam, are Maureen and Gary dating?” To which Sam responded, “No. If anybody would know they are dating, it would be me. Heck, they both work in this office, right under my nose.” Jump forward to my proposal after the 4th of July. Maureen and I had returned to the office in Chicago after the holiday weekend and stopped in Sam’s office to share some news.

Gary: “Hey Sam. Guess what we did this weekend?” Sam: “What?” Gary: “We got engaged.” Sam: “To each other?” Maureen: “Yes.” After this news rippled around our floor, the floor above us and out to a couple of other Apple offices, there was a voicemail left by that same VP from a few months earlier, that said simply, “I told you so!”

This is the joy that brought Maureen and I to the altar at St. Matthew’s Episcopal Church in Evanston, Illinois for the blessing and celebration of a marriage. We were already married, which is why I love how the Episcopal Church presents this. Our hearts, bodies and minds were already fused together through joy. The marriage service was simply a public acknowledgement of our joy, a joy that has never abated. Our joy has been made more powerful by the consequences of the next passage, “and, when it is God’s will, for the procreation of children and their nurture in the knowledge and love of God.” Taylor, Kyla and Katelyn are clear signs of God’s will. We are blessed to be their mom and dad, blessed to be stewards of God’s gift to us through their birth. I know that one of the greatest joys for Maureen is her children. When I watch what they do for their mom, I know they understand her love… you can not give something you have not received, a meme I talked about back in the “New Chicago Memories and the Meme of Love” post.

There is another little passage in this order of service, and it can’t be avoided. “for the help and comfort given one another in prosperity and adversity.” Notice it says “and” not “or.” Until I typed it out, I didn’t actually realize why that is so important. Life is complicated. Life is not meant to be a journey with only prosperity and without adversity. Like Adam, I would give my rib to my Eve, my Maureen, to take her cancer from her and into me. I believe that this is part of what the last line means, “Therefore marriage is not to be entered into unadvisedly or lightly, but reverently, deliberately, and in accordance with the purposes for which it was instituted by God.” 24 years and 3 months ago, I had to stand on my tip toes when the priest told me I could kiss the bride. Today, 8,853 days later, I love my bride as much, if not more, than the day of our marriage. I also feel privileged that God blessed our union, because as Maureen battles through this adversity, I am joyful that God has blessed me to be by her side. Maureen, my heart, body and mind is yours, always has been, and always will be.

The People Geography of Healthcare | Human-Centric Thinking (Part 2)

Is it more important to have the right answer or to ask the right question? After the past few weeks interacting with our healthcare system, specifically its oncology components, it has become abundantly clear to me we are asking the wrong questions. A few years ago, at TEDxAustin, I reflected in my talk on the fact that we had to carry a CD of my wife’s tumor images from Austin to Houston for our discussions at MD Anderson Cancer Center. After these past few weeks, I wish that was the only challenge we have in moving information around the healthcare system to provide the right care to a patient.

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Gary Thompson @ TITLE Boxing Club – West Loop, Chicago

This system is broken, and physicians, health care providers and many, many others, beyond the patients, are incredibly frustrated by it all. As Maureen’s oncologist was kind to note about my work on CLOUD, “You may be doing more good than most can imagine.” Continue Reading →

Our Story | Taylor’s First Days

53f3ae9eac7ee9014f1c6f2cSo, the worst thing to do to a 10th grader is embarass them. Unfortunately, even though that is true, we are still going to embarrass our son, Taylor, with this post.

Today was the first day at the Upper School at St. Andrew’s Episcopal School. I didn’t make it last year, but Maureen and I were both there today, listening to the bagpipes play as the 9th to 12th graders processed around the campus with their advisories and then entered the Upper School chapel to ask God to bless them and their campus for the year ahead.

Today’s event made Maureen and I realize that what was once our story is now his story. Taylor is the oldest of our three children. He will be 16 on January 29. 2015. As the photo at the bottom makes clear, he is almost as tall as his mom. This means that he passed me in height a year ago. However, he has not just grown in height, but he has grown as a human being. We are really proud of him, because he is choosing each chapter in his own story wisely.

A little over 16 years ago, Taylor was still our story. He had not been born yet. We were eagerly awaiting his arrival. I still remember Maureen coming into our bedroom, after using one of those pregnancy tests, and saying to me, still not quite awake, “Good morning, Dad.” Trust me, after hearing those words, I was awake, very awake.

As we fight a bunch of cancer cells in Maureen’s body that have gone nutso, it is important to think back to the birth of our children, because in those moments, our cells were doing what they were meant to do. They came together in the ultimate act of love and created life. They created lives that would simply not be possible but for those two particular cells coming together at that exact moment. Those lives and the resulting love that now exists have come full circle, shining their light back into Maureen and my life as we prepare for the battle ahead.

At the birth of each of our children, I have written a poem on the day of their birth, as we sat in the delivery room. Well, I sat; Maureen, then, like now, did the hard work, always with a smile. We’ve never known the sex of our children before their birth, so we’ve always had two names, just in case. Taylor would have been Lauren, if things hadn’t turned out as they did. So when you see LT in the following poem, you’ll understand what it means. This is his poem from his very first, first day.

Our Child to Hold

A new life is dawning, a soul is awakening; A product of love, nine months in the making.

A walk up the aisle, our vows at the alter; God watches over us to be sure we don’t falter.

A moment of closeness, husband and wife; God reaches out with His gift of life.

Baby LT, alive in the womb; Kicking and moving to make some more room.

This is the moment, a small twinge of fear; Our hearts are pounding as baby draws near.

All of the waiting, all of the scheming; This is the moment of which we’ve been dreaming.

Our hands are clasped, one final push; Our world is changed with one giant woosh.

Inset with diamonds, a band of gold; Today we’ve been given a child to hold.

CLOUDCircles – #cancer Status Page

Cloud_feature CLOUDCircles are user-driven communities to fund CLOUD’s work on the future of the Internet. We’re excited to launch this new initiative, and our long-term plan includes allowing users to create their own circles in support of CLOUD’s initiatives. For now, we’ve picked a combination of our most active twitter hashtags and communities. To make a contribution or learn more, visit www.cloudcircles.org.

The following status bars show CLOUD’s progress to its fundraising goals for the #cancer CLOUDCircle.

My Tribute to Kethan | Rainbows, Light and Love at TEDxTrastevere

The image posted to the TEDxTrastevere Facebook page during their TED event last evening captures perfectly the essence of this journey for Kethan. There I am on stage, with my friend, my honored hero, my “little brother,” my angel right there with me, looking over me and the audience for “Drops of Life.”1374234_373259959472807_148909140_n

Over the past five years, I would do anything for Kethan, riding my bike to fundraise, engaging in cancer charities, like the Leukemia & Lymphoma Society, fighting for access to treatment, but as I look at this picture, I am struck by a deepening realization that I have had since his passing on July 11. I was never his angel; he was mine. From the stage in Rome, I reflected on the impact of this angel on my life, “about the power of one, the power of another human being to completely and fundamentally transform another.” It was in talking with Patrick Rochon, another of the TEDxTrastevere speakers, that I came to realize how Kethan was capable of changing me and others so much. It was his rainbow.

1383063_373325459466257_1945424582_nPatrick is a light artist from Quebec, Canada. He is quite an artist, and he has a deep and beautiful soul. He shared both from the stage, and we shared even more light during a thoughtful and moving conversation as the evening came to a close. I have included an image of one of his works during his performance at TEDxTrastevere to provide just a glimpse of his provoking art. When we turn out the lights and turn on a different lens, it is amazing what we can see. It is our conversation that made it even easier for me to “see” the connection I shared with Kethan and to better understand the connections we each share with others in our lives. Continue Reading →

My Tribute to Kethan | From TEDxWeldQuay to TEDxTrastevere

Sitting aboard Thai Airways on my flight from Malasyia to Rome, I am looking both ahead and behind me. On Saturday, my TEDx world tour reached its official start as I took the stage of TEDxWeldQuay. The Artistry Within of this event capturing every aspect of my time in Penang itself.

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I was greeted by Mee Quin Ooi from their TEDx committee at the airport on Friday and was then whisked off to a wonderful lunch in the Georgetown area. Not only did I properly learn how to use chopsticks, but I discovered a plethora of amazing tastes. Malaysians love their food, and I now understand why. Either they love their food because it is so good or it is so good because they love their food. Either way, this lunch was a spectacular gift.

On Saturday, I awoke with great anticipation. Although I am deeply grateful for the chance to take the stage of each of the three TEDx events at which I will speak, this one in Penang was special. I was in Malaysia, where Kethan’s story started. Although he was born in Austin, his family is Malaysian. This is who he was, where he began and where his Appu and Appachi; his Appu and Amamma still live. Continue Reading →

My Tribute to Kethan | Walking on the Other Side of the Street

As I fly from Kuala Lumpur to Penang, Malaysia, I am in great anticipation of this historic city and the privilege of taking the stage of TEDxWeldQuay tomorrow at the Whiteaway Arcade. Above the clouds, it is easy to forget what is below. From the other side of a cloud, everything below it can look the same.IMG_0576

Just like I came down from the clouds on Tuesday and landed in Kuala Lumpur, I know that in a few short moments I will come down from above these clouds and land in Penang. Just like I was greeted by Kethan’s family in KL, I will be greeted by the extended TEDx family in Penang. I am excited to meet Mee Quin Ooi, who will greet me at the airport, as well as Yee Ling Neoh, the curator for this, the first TEDxWeldQuay. Continue Reading →

My Tribute to Kethan | Arriving in Malaysia

My beloved Kethan lost his fight to leukemia on July 11 this past summer. It is why I am here in Malaysia, and it is why I am traveling to Penang on Friday to speak at TEDxWeldQuay on Saturday. In many ways, this is a very private story, which is why I am so thankful to the family to be able to tell it so very publicly. I speak so loudly for Kethan, because I know that what he taught me can inform us all…  Continue Reading →

My Tribute to Kethan | Making a Difference

As I shared in my recent post about my TEDx world tour for Kethan, this journey is sparked by the deep impact that Kethan and my wife, Maureen’s, cancer have had on my life, my work and my soul.

It is my deep belief that the “Power of People. Connected.” will be vital to finally dethroning the “Emperor of all Maladies,” as Sidhartha Mukherjee calls it in his book of the same name. As I make my journey from Malaysia to Rome to Dublin, it is my hope that my TEDx talks will spark a desire in each of us to follow our souls and our hearts to be inspired like I have been by Kethan. That inspiration can and will take many different forms. We can each be a pebble that creates our own ripple effect in the pond of humanity.

For me, there are a few causes or ponds into which I am throwing my pebble in the fight with cancer. Continue Reading →