Survivorship is Not a Phase | Part Two

Although I am posting this now, the following was written on my Southwest flight from Austin on the leg from Denver to Reno on Tuesday, June 16.

Screen Shot 2014-08-18 at 9.21.23 AMMy flight has just lifted off from Denver. I am returning to Reno. To Tahoe. To the small slice of heaven I wrote about in the Powdered Donut Manifesto, Part 2. As we lift over the clouds and peek at the snow-capped Rockies in the distance, I return to Tahoe differently than when I left just over a week ago. Of course, there is the practical reality that I do not have a 100 mile bike ride ahead of me, like the last trip. This time I am simply heading up to spend a few days with Katelyn, my youngest daughter, who has been there for several days with her friend, Ella. Ella and KK are both rising 5th graders. To know their friendship is to know their unicycles, a story told in this beautiful trailer about the UniSaders at OneWheelManyChildren. I wrote more about the symbolism of the unicycle last fall in this piece, “Our Story | Are We Riding on One Wheel? Or Instead, Are We Free?

Today, I write Part Two of a piece that I first published on October 29, 2011. On that day, Terri Wingham of A Fresh Chapter and I both posted on the same topic, having been introduced by a #FridayFollow, a #FF, on Twitter not long before. Our respective posts can be found here and here. The past week came to a head yesterday, as a roaring sea of emotions reached shore, reached my heart, and crashed across my soul. For those that have been following The Love of My Life, you know of my abiding love for Maureen, my beautiful bride of over 24 years, my BFF, my soulmate, my rudder. My rudder. That is the word I used yesterday as I walked around my house, alone. With all three kids on their own respective trips, I had 24 hours from yesterday morning to today that I was alone, by myself. Maureen’s pictures are everywhere in our home. I talk to her all the time, but it is nice to have pictures, so that I can see her with my eyes, not just my heart. As I looked into her eyes across our living room, I said, “Maureen. I’ve lost my rudder. You were always that quiet stability that cut through the raging storms.”

10402969_10152166407323660_3868688982161078277_nThe wonderful thing about writing about love is that it brings back all of the beautiful memories I have from a lifetime of love with Maureen. However, as I spent the day with myself yesterday, I realized something else. Love is also a shield. It has been my armor. Yesterday, I began to comprehend what I was protecting myself from. Me. The storms. The other emotions. The pain. The feelings that are still just below the surface from the day Maureen passed from this world to the next. As I said to her mom and dad at her “celebration of life” just a few days after her passing, I love your daughter more than words can describe. That love drove me to strip everything from Maureen on the day of her passing that had anything to do with cancer. I simply was not going to allow last rites to be administered with anything that wasn’t her. Of course, I knew her soul was already washing over all of us on 7 North that day at Seton Hospital, but as with all of my rituals, this one had meaning to me. I took off her lymphedema sleeve, undid the gauze from her right hand that kept the swelling down, delicately removed the rock tape from her physical therapists. Other than her port, I needed Maureen to be Maureen.

As I write part two of Survivorship is Not a Phase, I am coming to realize that I have not yet stripped off my gauze, my sleeve, my armor. Although these insidious cancer cells (terrorists as Terri called them in her post in 2011) were in Maureen’s body, we had cancer. As I have written before, if it was biologically possible, I would have gladly taken Maureen’s cancer into my own body. She was my Eve. I was blessed to be her Adam. But, like my rudder would always do, Maureen quietly looked in my eyes when I would say this, and said, “No. I’ve got this.” And, that’s the thing I realized yesterday, the emotions beneath my shield of love. I am a survivor, and I have survivor’s guilt. I never ask “why Maureen?” because to do so would be to dishonor her memory and to dishonor God. At Heavenly Donuts just over a week ago, I came to understand that eternal life changes the equation. Only the physical Maureen is gone. She is not.

There was not a day along our journey with cancer, not a day across the 11 years, that Maureen didn’t choose to be a survivor, rather than a patient. For those that knew her, you knew her strength, her dignity, her courage. She was simply magnificent. For each of those 11 years, I was privileged to be not just Maureen’s husband, BFF, soulmate, lover but her caregiver. However, if you knew Maureen, you knew that my caregiving was of a different kind. If you are a survivor, not a patient, then your caregiver must act differently. As I say in this video for Rallyhood, my role as caregiver was simply to love Maureen. That is why I wrote Our Story last fall as her cancer metastasized. I simply refused to write about cancer. Maureen was never cancer. She was and will always be Maureen.

But as a survivor, approaching the 8 month mark of Maureen’s passing, I am looking within myself and asking the question “who am I?” I know that I am the son of Jean and Roy Thompson. I know I am the brother of Marcella Graham and the brother-in-law of David Graham. I know I am the proud son-in-law of Henry and Ann Diercxsens and brother-in-law of Suzanne Harrison and Dominique Gable (Diercxsens’ girls). I know I am the father of Taylor, Kyla and Katelyn. I am the proud Uncle of Joshua, Cybelle, Nadine, Miles, Hannah and Ian. Each of these is an answer to prayers I prayed as a young boy about my future. If I could go back and tell that young boy that his prayers would be answered and answered magnificently, it would be so amazing, because I have been richly blessed in my life, most especially by my love affair with Maureen.

thAs Terri also wrote in her Survivorship is Not a Phase, “Suicide bombers boarded planes, filled with unsuspecting passengers, and forever changed both the New York skyline and the North American psyche.” Suicide bombers, cancer cells, have forever changed my skyline. I know I am not the only building in this skyline. I know there are many, many more spouses, partners, parents, children, siblings that have gone from “caregiver” to “survivor” because of cancer. Much is written about “survivorship” as it relates to cancer. Terri has the courage to write about that journey in the first person. I only write about it in the second person. What I can write about in the first person, however, is my journey as a survivor, and it is not a phase. It has taken on a new dimension. Ever since I met Terri, I thought, oh, A Fresh Chapter is for someone else, not me. However, these words from her blog suddenly take on a new dimension:

There is no universal map to follow when embarking on the road less traveled. Instead, we learn by trial and error. By trusting our intuition. By grieving our losses and doing more of what lights us up. If you want to make a change in your life and don’t know how to begin or you’re facing challenges you didn’t expect and need a reminder to stay the course, join us for a behind the scenes conversation.

I plan to take down my shield more often as I write going forward. I will trust my intuition. I will get stuff right. I will get stuff wrong. I will never stop writing about love, because love will always be my rudder. However, just like I wrote in a post about the twin towers last fall, the New York skyline has changed again. In the midst of the carnage of those suicide bombers, another building has arisen, different than those that were there before but no less beautiful. As we approach the eighth Powdered Donut Day, this coming Sunday, Father’s Day, I am beginning to realize that Maureen wants me to architect a new skyline. Her love will permeate every aspect of my blueprints for the future. I am a survivor, and I am no longer afraid.

The Powdered Donut Manifesto | Part Two

100 Miles - 6 TimesOn Friday, June 5, on my way up to Lake Tahoe for my 6th ride in 6 years of 100 miles with Team in Training for the Leukemia & Lymphoma Society, I noted as I wrote “Cured,” that it was National Donut Day. I also pointed out that part 2 of the Powdered Donut Manifesto did not quite feel ready. It simply wasn’t time for the manifesto to continue. On Monday morning, after the ride on Sunday, as I walked around Heavenly Village in South Lake Tahoe, I realized why part 2 of the manifesto was not yet ready to be written. Before I share that reason, though, I need to talk a little bit about why Lake Tahoe is such spiritual and sacred ground.

Six years ago, on the first Sunday in June in 2010, I came to Lake Tahoe for the second time in my life. The first time I came to Lake Tahoe was in the late 1980s, before I had met Maureen at the Apple office in Chicago. I had joined Apple in 1987, after graduating Northwestern University, and was part of an incredibly cool job called the Field Sales Associate. This FSA position was created by Bill Campbell, then VP of Sales and Marketing for John Sculley. Bill would later return to Apple and become its chairman, along with Intuit’s CEO and Chairman. I was privileged to speak with Bill recently and thank him for what this position meant to my career and my life. The FSA position was unbelievably cool. It was an 18-month new graduate management training position. There were three of us in the first “class” in 1987, one from the west; one from the central US; and one from the east.

Over the course of these 18 months, we each followed our own tracks, with a number of shared experiences. From spending a few weeks to a month in each of Apple’s sales channels at the time, which included K12, Higher Ed, State & Local Government and the Dealer channel to working in a support center to even driving a fork lift to put computers on trucks, we got a chance to do a little of everything. It was amazing. Our shared experiences would occasionally bring the three of us together in Cupertino at Apple’s headquarters. On one such trip, we were in California for two weeks, with a weekend in between. It was in late winter, so skiing was still a possibility, and the three of us decided to rent a place in Lake Tahoe and go skiing in Heavenly. Well, I say skiing. I’m really not so sure that what I did would be by definition, skiing. The toddlers and kids on the “bunny hill” at Heavenly were doing a far better job than I was at this process of gliding over snow. I think I ate more snow than I skied over! That trip to Lake Tahoe was in early 1988. 22 years later, I came back to the same spot to ride my bike for the first time with Team in Training. I sat underneath the gondolas at Heavenly from my skiing trip so many years earlier, feeling a deep sense of deja vu. Actually, timelessness might be an even better word.

I was brought to Team in Training and those gondolas by a little boy named Kethan. I tell of my story with Kethan in many places, but this special video from the Leukemia and Lymphoma Society (LLS) tells his story in a way I can not, because it tells of his story and his magnificent mother and father. I had recently become Man of the Year for LLS in a fundraising campaign earlier that year, and so when I met Kethan that fall, I knew I needed to do something more. Kethan was in 1st grade at St. Andrew’s with my daughter, and he was undergoing treatment for pediatric ALL, a form of blood cancer. The divine moment that happened this morning all traces back to this little boy, and my desire to climb back on my bike after many years of not riding, because I needed to do something. I wanted to take action. I wanted to do my “one thing” as I talked about in Part 1 of the Powdered Donut Manifesto. For six years, I have had the privilege of doing this “one thing,” riding my bike, first in honor of Kethan and for the last two years, in memory of this magical “little man,” as his mom calls him. Fortunately, I am far better at cycling, than I am skiing!

This year was also the first time I rode in memory of my beautiful bride of 24 years, my precious Maureen. I knew this weekend would be an emotional one. As I posted on Facebook just before the ride, “we ride with angels in the wind and love in our hearts.” As has so often been the case since Maureen’s passing, I have felt the presence of my angel and the love of my life. Waiting at the airport in Austin for my flight on Friday morning, my angel spoke for the first time heading into this journey to Lake Tahoe. I was listening to Enya radio via iTunes Radio, and a song, “Though Lovers Be Lost,” started to play. It is by Anael, meaning Angel. I am listening to it now, as I type. The words resonate. “Love shall always remain. I love you, and I am near you.” Over the course of the weekend and the ride, I came to understand that though my lover be lost, she is indeed near me. On Saturday night, after dinner, after honoring one of our recently fallen riders, Tom, my team also honored Maureen with powdered donuts, and I told the story of love that the powder represents.

11391283_10152969640208660_3602228571564380642_nOver the last several months of powdered donut days, the 21st of each month, I’ve always wondered, “does my crazy girl in heaven know what I am up to? Does she know what that powdered donut from the weekend from before her passing has become?” Maureen answered me this morning. She told me that she is always near me. My lover is not lost. For as I strolled again under the gondolas in the village, I not only felt that timelessness again, but I felt the distance between heaven and earth collapse. I looked up and saw this. I knew in that instant that she loved me, and she was near me. Today was clearly the day for part 2 of the manifesto.

apple-logo12I also noticed something else about the Heavenly Donuts sign, which if you look again at the logo, you will see, too. There is a bite out of it. A bite in the top right corner. There is another logo with a bite out of it. It is this one, the Apple logo. Like the donut itself, life was coming full circle, just like our route around the lake itself the day before on our bikes. As I had said to Bill when I had the privilege of thanking him for the start to my journey, had it not been for the FSA position, I would never have met the love of my life, Maureen, at the Apple office in Chicago, and I would never have known a love that is heavenly.

The Love of My Life | “Cured”

IMG_2942 (1)Although it is National Doughnut Day today (yes, apparently, there is day for this!), my heart and fingers feel compelled not to write Part 2 of the Powdered Donut Manifesto but instead, “Cured.” The seeds of this post were planted a week ago, but as with all my writing, I always wait, sometimes hours, sometimes days, sometimes longer to be sure that the seed is well watered, before it hopefully flowers in the words I write. As I fly to Lake Tahoe for my 6th Team in Training century ride for the Leukemia and Lymphoma Society (on National Doughnut Day), my heart tells me that “Cured” is ready to flower and be shared.

Before last Friday’s events can make sense, I have to reflect quickly on the kids and my trip to San Antonio over the holidays. We headed down right after the New Year, and I wrote in detail on that trip in “The Love of My Life | Bubbles and Powdered Donuts.” Although it wasn’t a long journey, we had a blast, and we took the water taxi up the new part of the Riverwalk into the Pearl Brewery area. It is a lovely redevelopment. We had so much fun. I always seem to have fun with these kids of Maureen and mine. I love them. They are great. We popped up the stairs from the taxi stop and put our names in at La Gloria, since they had a line, and then, we toodled around the shops. We hopped and skipped with the energy of just being together and then stopped into a place called Local. I had an espresso. The kids had hot chocolate. It was fun, and it was yummy, and we also noticed a restaurant called, “Cured.”

Being foodies and big Top Chef fans, we quickly noted that this was one of those, not just good restaurants but special ones, and we would have to come back. Heck, the dude that runs it worked for John Besh from New Orleans. That kind of lineage is a good sign. However, that day over the holidays was not meant for “Cured.” It was the day for La Gloria and some awesome Mexican food. Last Friday, though, was the day for “Cured,” and that day has set in motion a powerful set of connections this past week. Although I can not yet be specific, there was a very special meeting happening last Friday morning, a meeting that comes almost nine months after the beginning of the dialogue. Actually, it just dawned on me that the beginning of this dialogue is truly divine and even more connected to the story of “Cured.” The email that started this high-level dialogue was sent on July 11, 2014.

For those that know my story, Kethan Kumar passed on July 11, 2013. He is the very reason that I am flying to Tahoe for my 6th ride. He is the reason I am bald. He is the reason I am involved with the Leukemia and Lymphoma Society. He is the reason I wrote the email. To know Kethan, this special tribute video from the Leukemia and Lymphoma Society gives you a small glimpse into the heart of a beautiful boy and a beautiful family. As I said to someone in a text that day, it is all connected.

IMG_3680All of this brings me back to the sequence of events that unfolded last Friday. I decided that during this special meeting, I couldn’t sit still, waiting to hear how the conversation and dialogue had unfolded. So, I decided to do my last set of hill repeats in preparation for this weekend’s ride in Lake Tahoe during the 30 minutes to an hour of the meeting. It was my way to connect my energy and my heart to those in the room elsewhere. After I finished my hills in Austin, I then drove my bike down to the San Antonio office of LLS, where it was to be picked up last Sunday to be transported out to Lake Tahoe, where I will meet it this afternoon, along with my friends and the spiritual journey ahead of me this weekend. While there, I talked to Deb Barker, the Executive Director of our chapter. Having been on the Austin board for 2 terms of 3 years, Deb and I have gotten to know each other quite well. She is a truly good person and has done so much in the fight for a cure. I am truly privileged to know her and the team around her.

I had mentioned to her that I was thinking of going back to the Pearl Brewery area for lunch before heading back up to Austin and told her of the kids and my trip from New Year’s. Then, she told me of the story behind “Cured.” She told me of Chef Steve, who is apparently on our San Antonio LLS board, and I began to feel it. I began to feel the goosebumps on the inside, as I call them in this video, Living Your Passion. I knew that I had to head south from our LLS office in north San Antonio. I had to have some of these magically cured and seasoned meats of Chef Steve and his team. As I walked up the steps into this building from 1904, I felt the calm and the happiness that always overwhelms me when I am on a date with Maureen. She may not be here physically, but I have come to understand and fully embrace my new reality, my angel. Maureen is always with me, on our date, and she was with me that day, last Friday, enjoying the architectural space that makes “Cured” more than a restaurant. I know love is the one dimension that connects heaven and earth, but I suspect that you don’t see and feel like we do here on earth, so I walked around the restaurant, so Maureen could see it through my eyes.

As I enjoyed my white asparagus soup and my pate (a favorite Maureen would always make from a family recipe), I then fully embraced the true meaning of “Cured.” For you see, Chef Steve didn’t just name it for the aging process of his meats. He named it Cured, because he is a lymphoma survivor. And in the grace of his restaurant, I smiled and felt a tear roll down my cheeks, enjoying his magnificent food and my date with Maureen, knowing that the kids and I would be back here together, soon. In the warm and beautiful sun, I walked out, basking, feeling the warmth of love, because it all comes full circle, just like the doughnut. And I also realized that the ultimate cure is indeed love.

IMG_3677Would I have loved for us to find a “cure” for Maureen’s breast cancer. You bet. Would I have loved for Kethan to reach his “cure” with Dr. June’s work at Children’s Hospital of Philadelphia. You bet. However, I realized that Chef Steve’s cure went deeper than just the eradication of his lymphoma cells. Chef Steve’s cure was love, a clear love for the art of good food, good food that he shares with all of us. Until I take my last breath and rejoin my Maureen, I will continue on the path of my love and a cure, because love is the best seasoning for life… and when the time is right, I will tell you about what happened in that meeting… 🙂