Legacy | How Does It All Fit Together?

As I peeked into my Facebook feed this morning, I was struck by an inspiring post from Abigail Schroeder Johnson. I crossed paths with Abigial through a social media hashtag on Twitter just over a year ago. #bcsm However, #bcsm is so much more than a hashtag. It is a global community of women (and men) faced with breast cancer, from early stage to metastatic. I was tweeting about my daughter, Kyla, and her vision for #pinkkids, which is when this beautiful human, known as @AMJohnston1315 on Twitter, graced our lives. Grace is an apt verb, because as she faces metastatic breast cancer (MBC), she graces so many others with her insights and her talents. She’s a lawyer and jokes about being left-brained and analytical. Whatever it is, Abigail, like too many with MBC, are quite literally facing a death sentence. Until we come up with better answers, it is a death sentence that can not be commuted. The day of reckoning is longer for some. Shorter for others. But, there is an endpoint, and only grace can explain her post this morning. Her post was an invitation to a special workshop/seminar presented by the MBC Leadership Team at Surviving Breast Cancer on legacy making. What we all leave behind after our own respective end points.

As I think about my legacy, I’m sitting at a little place called Runaway Luna in the Galleria in Bee Cave, Texas. When Maureen and I moved to Austin in 1994, this area was a field with groves of live oaks. We bought our Christmas trees from Papa Noel when it set up its tents. We ate breakfast tacos across the street at Jim Bob’s BBQ. In 1997, we built our home west of here in Spicewood. Like our children, Taylor, Kyla, and Katelyn, the area has grown. Our three “kids” are a big part of Maureen’s legacy. They are a legacy of our love, and as our oldest, Taylor, enjoys his first month of marriage with Elizabeth Howell Robertson (now Thompson), Abigail’s post brought form to thoughts bouncing around in my head, and heart, for the last few weeks. What will I leave behind? How will I harness the days I still have? How do the many things I do each day fit together?

The central essence of my legacy is love. I loved, and I love, Maureen. This October 21, will mark eight years since her last breath. I awoke by her side at Seton Hospital that fateful morning in 2014. She was gone, but I had felt her soul wash over mine just hours earlier. I didn’t realize that at the time, but I know it now. That connection continues to this day, because love is like that. We live in this world with five senses: sight, sound, smell, touch, and taste. Love, quite frankly, is a sixth sense. You feel it. It touches you, but in an other-worldly way. I truly believe that if we each allowed this sixth sense to animate all that we do, the many trials and tribulations we face each day would manifest themselves differently. We’d waste a lot less time on hate. As Carl Sagan once commented, “We are like butterflies who flutter for a day and think it is forever.” We are not forever, just like Abigail, and those with MBC or any other terminal disease, already know.

So, how do I manifest love? Well, the first is through theloveofmylife.us. Which as I think about legacy, and being more intentional with my time, is very important to me. The blog must become a book, so the book, and the love, can be shared not just through its pages but through a book tour. Just like Love Does by Bob Goff, I want to share my unique lens with others. As I sit with intentionality, I also realize that there are at least two other books that I must craft. The first is the Powdered Donut Manifestoes, a spin-off from my first book, The Love of My Life. Although The Love of My Life will be subtitled, How a Powdered Donut Changed Everything, there is more to it than that. As Taylor, Kyla, Katelyn, and I moved past the shock of their mom’s passing into the early days of grief, we “did things,” as Taylor noted. As we did those things, these words slowly found form for me and coalesced into this saying, “We don’t have to change everything. We just have to change our one thing, and if we each indeed change our one thing, then we will have changed everything.” That, in the end, is the Powdered Donut Manifesto. Find your one thing and sprinkle the love, and the powder, of that one thing, on everything.

The last book, or at least the last one I see in my mind’s eye as I write this post, is The End of Linearity. As my blog of the same name notes, “In a miscellaneous world, there is no beginning or end.” Not long after Maureen’s breast cancer came back in 2008, I was up in Evanston at Northwestern University in my non-trustee role on a Board of Trustees Information Technology Oversight Committee. As I was walking through the library, visiting old study spots, I passed by some books on display. New releases. My eye gravitated to a bright colorful one titled, “Everything is Miscellaneous,” by David Weinberger. I peeked at it, leafed through a few pages, and promptly went to a nearby Barnes & Noble to buy a copy. David’s musings, and writing, on the power of the new digital disorder, shook up my thinking in ways that linger to this day. Linger in how I see our world evolving and linger in my work, too. SilverLining Software, LLC, SilverLining Health, Inc., and the many other subsidiaries to come flow from finding that book. Because as I read that book, we were also wrestling with the reality of Maureen’s breast cancer and trying to navigate our way through an oncology ecosystem that is well. Linear. And not just linear, but not very well connected. Not only does cancer need a silverlining but quite frankly, so does the Internet. One of the things that you lose with cancer is control. To regain control means coming to grips with your own end of linearity. Our very humanity is a complex adaptive system. The human body is not linear. Cancer cells are far from linear. And, the Internet has become far too linear. Strayed too far from its roots as a decentralized maze of humanity. And connection. It has stopped being miscellaneous, and in the process, it has lost its magic. Us.

To do good, to love, is the most miscellaneous act of them all. Just like reweaving the oncology ecosystem, though, can we weave together a network for good? Can we tap the power of us? Can we create a #dogood network, a way to harness the miscellanous acts of love done by so many through over one million non-profits in the US? The answer is yes, and interestingly, it is the very Apple that led me to the love of my life, my Maureen, that has connected me with the answer to these questions. To CivilTalk. Co-founded by an old friend, Keith Fox, with whom I crossed paths at Apple as my career began. CivilTalk is one of his legacies (amongst many) along with his co-founders. This particular legacy of his intersects with one of my own. Empowering the many breast cancer non-profits to do more good. To tap more resources. For all the oncologists, researchers, pharmas, and cancer centers, without the many non-profits, the many folks with cancer wouldn’t have the vital resources to navigate themselves through the complexity of this disease. They bring together not just resources, but love. In each doing their one thing, they can change everything.

So I end my legacy where I began. Cancer. Breast cancer. Metastatic breast cancer to be precise. And love. When Maureen passed after 11 years with the disease, a disease that became miscellaneous, or metastasized, in its last year, I could have responded in anger. Anger at a disease that could take the love of my life too soon. At 50. That will take Abigail too soon and takes over 44,000 women (and men) too soon each year. I instead chose to be provoked, because to be provoked flows from love, and love is my essence. SilverLining is the technological expression of that love, and the Side-Out Foundation is its final philanthropic expression. For well over a decade, I have dedicated myself to various large national onco-philanthropies and been generously recognized with President’s Awards and Chairman’s Citations. From the Leukemia and Lymphoma Society to Susan G. Komen, I’ve been blessed with a chance to give back in so many ways. However, Side-Out will be part of my legacy, because it is not just my legacy but the legacy of its founder, Rick Dunetz, who built the organization to honor his own mom. Kyla and Katelyn, through their fund-raising with Dig Pink®, brought me to my role as Board Chair, and now Kyla is building her own legacy through her own work at Side-Out with Rick, and her Celebration of Moms. In the process of doing its one thing, Side-Out not only seeks to create tomorrows for those with MBC but create a whole new 21st century approach to philanthropy and creating change.

The Love of My Life. The Powdered Donut Manifestoes. The End of Linearity. SilverLining. CivilTalk. Side-Out. These are my legacies. They all go together. Why? Because each is fueled by love. And, love is Maureen, and my, ultimate legacy. And, if we so choose, love can be the legacy for all of us.