Remembering Scott

For #GivingTuesday, and in honor of Scott's birthday, I am starting a fundraiser for the Pheo Para Alliance, an organization that supports patients with pheochromocytoma or paraganglioma, which is the rare cancer that Scott had. Over the last year and a half, I've gotten to know this wonderful organization and met some of their board members. They organize helpful conferences to educate thousands of patients and caregivers around the world on the latest medical treatments and how to manage their symptoms. They designate Centers of Excellence for patients to identify where to go to find specialists, which is critical for a cancer this rare. They aid in research by helping to provide tumor samples (again, critical for a rare cancer) and collaborating with the Broad Institute on creating a cancer dependency map for pheo/paras which currently does not exist. Having a rare disease can be extremely isolating when you don't know anyone else with the same condition or...

Image from https://www.britannica.com/topic/Orion-Greek-mythology So I'd do anything to cry I'd do anything to cry Let this pain fall from my eyes And let time heal my insides - "Song for the Painter" by Lost in the Trees It's been six months. I haven't written in a while because I've been traveling or visiting with family and busy with work and other new projects (more on that in a future post). The first few months passed agonizingly slowly but the last few months have sped up a bit. For about the first 4 months, there was constant and acute grief. At first it felt like I was starving for air. One time during the summer, I saw a small fish taken out of a lake and watched its sides heave for air and thought in a numb sort of way, "Hey, that's how I feel." Later that feeling subsided and it felt instead like I was in emotional traction and every bone in my body was broken. I had everything in place to support me and get better, but I still ...

November 2014: When asked to do a Facebook "black and white photo challenge," Scott responded with this picture with the following story. I always loved his creative humor and this is among my favorite posts from him. "The death march of the black and white photography day 4. One more day to go. I wanted to avoid using photos from my personal life, but I thought this shot was interesting and well composed. This is a picture of one of my ex-girlfriends. I know you're all wondering why she's shopping in a supermarket with a deer, but the deeper question is how could a girl like that let me go? We tragically fell on opposite sides of the great Console War of 1992. She kept sniping me about the superiority of Blast Processing ("the Genesis has more advanced chip design that makes the Super Nintendo look like an Atari!") and how that "Altered Beast was a really fantastic game". I loved her, but our arguments became increasingly bitter until one nig...

Photo from https://pawilds.com/the-wonder-of-our-pa-wilds-dark-skies/   "In one of the stars I shall be living. In one of them I shall be laughing.    And so it will be as if all the stars were laughing, when you look at the sky at night." - The Little Prince, Antoine Saint-Exupéry In July 2016, Scott and I drove to a dark sky reserve at Cherry Springs State Park in northern Pennsylvania. Scott had mentioned a few months earlier that he wanted to see the Milky Way, and I thought it would be a fun trip to do together. Cherry Springs was the nearest dark sky reserve, far away from towns and other sources of artificial light, and we picked a summer weekend that coincided with a new moon for optimal viewing conditions. We brought a picnic dinner, arrived before sunset to find a spot on the stargazing field, and waited for night to fall. There were about 100 people on the field, but it was large enough that there was plenty of space for all of us to spread out. As the sky...

This week is Pheo Para Awareness week. Scott's cancer was metastatic paraganglioma (or "para"), an extremely rare cancer that in his case was caused by an even rarer genetic mutation. There is a closely related condition known as pheochromocytoma, or "pheo". Pheo/paras are a type of neuroendocrine tumor that can cause the excessive release of catecholamines, which include adrenaline, that prepare the body for "fight or flight" reactions. Symptoms can include high blood pressure, anxiety, heart palpitations, sweating, and headaches. Scott suffered many of these symptoms for years, and it is likely that his tumors developed over many years since they are typically slow growing. It is highly unlikely that Scott's cancer could have been caught early since he never had another reason to get a scan, his routine blood work always came back normal even at the time of diagnosis, and his symptoms were general and associated with other health conditions that ...

3 months. Yesterday I received a Gundam kit that Scott had pre-ordered months ago. Today my aunt received her new Eames chair, inspired by Scott's beloved Eames chair (a story that I will share at a later time). At the 2 month mark, I donated to causes that he supported and plan to continue doing so. So it's interesting to see what effects Scott still has in this world.  As for me, I would describe my current state as walking through a valley that I hope will turn out to be a path to healing. I have many people walking with me, but in some ways I must experience parts of this journey on my own. I think I am going in the right direction and have been picking up new tools/perspectives along the way but have a long way to go. There is no way around this; I must walk through it. So I do, on the faith that better days will come. I've been compiling pictures/videos of Scott so they can be accessible for family and friends. Here is a video that I made for his celebration of life s...

  “To plant a garden is to believe in tomorrow.” -Audrey Hepburn   Yesterday I picked the first harvest from my deck container garden - a handful of shishito peppers. I got a late start on my garden this year but am amazed that I even have a garden after all that has happened this spring and summer. I looked at the fresh peppers in my hand and thought of Scott. How I wished that he could be there to share them with me. He loved shishito peppers and wanted several plants so we would have lots of them to eat. Neither Scott nor I were adept at gardening. In the spring of 2020, we started it as a pandemic hobby with a hot paper lantern pepper seedling that produced many glossy bright red/orange peppers that summer. It's weird to describe a plant as charismatic, but we both agreed that somehow it was. The peppers were deliciously spicy and fruity and Scott learned how to make a fermented hot sauce with them. He was so proud and happy the day he made his first batch. He...

Last July, our friend Katherine came over to visit Scott and we watched Hamilton together on Disney+. Scott and I saw Hamilton on Broadway in 2016 and we both loved it. Toward the end of the musical, as Hamilton was musing on his impending death and legacy and Eliza sang about her life after the death of her husband, Scott started to cry. I held his hand and squeezed it as Eliza sang, “Oh, I can’t wait to see you again...It's only a matter of time.” Later Scott told me that he cried because he was thinking about his legacy, and how he only taught for 3 years and made some games and wanted to do so much more. And how Eliza was left to live alone for the next 50 years, and it wasn’t fair and she didn’t deserve that. If he had more time, Scott would have had a long and rich teaching career. He had a strong drive to learn as much as he could about teaching and was always working on improving his classes. He wanted to build a strong computer science pipeline at St. Paul’s...

  And now, a funny Lewis-Yang family story. Thanks to Todd for reminding us about it and resurrecting the game. When Scott and I would visit our families in Georgia, we had what we called "the hostage exchange" in which the two families would meet for lunch and we would be handed off from one family to the next. These were always fun occasions for the families to get together. One time, I think it was at The Old Spaghetti Factory in Atlanta, someone brought a clothespin. I have no idea how it started, but it quickly evolved into a game in which the objective was to sneakily pin the clothespin to the back of someone's clothing. People would give each other hugs and pats on the back and then the recipient would either frantically pat themselves down to check for the clothespin or blissfully go about their business while everyone else pointed and snickered. The clothespin rotated to different victims frequently. I'm not 100% sure, but I believe that at the e...

  Today was my first day back at work, after being gone for just over 8 weeks. It's been a little over 5 weeks since Scott left. I'm thankful that I was able to take this time off. I was nervous about going back to work, wondering if I would be able to keep it together. But I felt like the time was right, and today it felt good to be back. To keep things manageable, I'm working remotely for the first few days and will start going into the office next week. My group has been running well in my absence, and they seem glad to see me, which was the best case scenario that I could hope for. I'm still a long way from 100%, but I think people understand and expect that. Of course, even "best case scenario" in these circumstances is incredibly hard. I miss being able to give Scott hugs during the day and spending time with him in the evenings. Today was nice, but eventually I'll encounter something stressful, and I'll miss having Scott there to comfort and rea...

  It was so wonderful to see and hear from people at Scott's celebration of life service on Sunday. I think all the stories and love would have meant so much to him. Here is my remembrance of Scott from the service: Hello. For those who don't know me, I'm Scott's wife, Bessie Yang Lewis. Thank you so much for coming here today to remember him and celebrate his life with our family. Scott once told me that he wanted to be remembered for dying tragically rescuing his family from the wreckage of a destroyed sinking battleship, which is an epitaph from one of his favorite movies, The Royal Tenenbaums. While that is not what ended up happening, I wanted to share my thoughts on Scott's life, and what he has meant to me. I met Scott on the first day of freshman orientation at Georgia Tech. I was 17, and he was 18. My initial impression of him was that he was smart and funny and mischievous. We were assigned to the same project team to research the history of...