Bart Follis, a Remembrance
In memory of Bart Follis who died June 30, 2001
I met Bart around 1990-1991. He was a week from surviving a harrowing hospitalization where he almost died. He had contracted Goodpasture Syndrome, a very rare auto-immune disease that attacks kidneys and lungs (there is nothing “good” about it). Because the disease was so rare, the doctors did not diagnose what was going on, but his mother somehow figured it out by delving into the internet (which was pretty primitive back then). Bart’s life was saved in the nick of time, but his kidneys didn’t make it. At least back then, Goodpasture’s could not be cured. At the time, I think around 100 or so Americans contracted it per year. That wasn’t enough to make research profitable though disease treatment benefited indirectly from some of the work on HIV/AIDS. For those who survived the initial onslaught of Goodpasture’s, they lived the remainder of their life on a short timer—5 years—up to 10 if you were lucky. The treatment forces the disease into remission. I don’t recall why, but the plasma transfusions don’t work when the disease reemerges.
I have a clear memory of the first time I met Bart. His dark eyes held pain to shatter a soul. I was always in pain. I remember experiencing Bart’s pain and thinking that he understood—he understood soul-shattering pain—and maybe that meant he might be safe to approach. So I did.
He was straight, and I wasn’t “out”, but he quickly moved into my small apartment and later I rented a small house so he could have his own bedroom (he was messy! I was not). The deal we had was that he could do with his bedroom whatever he wanted, but the rest of the house needed be kept reasonably ordered/clean. Bart honored that agreement.
I thought of him as a brother—sometimes, he was the older brother, and sometimes, I was. He was on dialysis, which kept him alive but it’s a scourge—he had treatments twice a week and it took him a couple of days to recover which meant that in a given week he had 2, maybe 3 days (or sometimes perhaps no more than a day) where he felt reasonably good. It was a hard life, and he faced it with the strength of a warrior. He had his flaws and I’m choosing to not talk about those here. He didn’t complain. Dialysis, aside from taking a lot out of him, was also rough to the physical appearance of the body.
I quickly found out he was a science fiction nerd—I thought of myself that way, but he had me beat! (in a good way). He went to SF conventions, he built Star Wars sets, and he built an incredible Millennium Falcon from (I believe) a MF model set but which he enhanced with other model scraps. Amazing in its detail and worthy of being a scale model for the actual movie.
Our favorite TV shows were ST Next Generation & Babylon 5— these shows were for us events. We looked forward to every show, and we talked about them at length. When Commander Jeffrey Sinclair vanished at the start of season2 in Babylon 5, we refused to believe it, and we kept thinking that it was not possible for that to be permanent. Another favorite was X Files. Give Bart aliens or paranormal (or both!), and he was in.
Bart loved to camp, and his parents had 30-35 acres up near Lake Somerville. There was a shack (it looked Depression-era!) for sleeping and adjacent land that we were allowed to visit had a sizable pond where we would catch some fish. We loved shooting off rockets, and the land was a great place for that. Bart was artistic, and he would also make small explosives that he would mount to model-sized navy boats. We played a shooting game where we would try to set off the charges, which, when successful, would light up the boats with fires. Other times, we would do more traditional target practice. It’s really the only time when I handled a gun. My favorite thing to do was the cooking—Bart was a great outdoor cook—we would get a fire going and wrap up in foil some fish (or some other protein) veggies and potatoes and push that into the embers of the fire. Yummy!
He designed a game, Diamond Chess, which is aptly named. It’s chess on a Diamond shape board. The movements are quite different, the spaces are triangular instead of square, and it does require a mental reframing of how to play the game. The internet was primitive—we advertised in a couple of game magazines, and we sold a couple of hundred. I still have one of the games and the original painted wooden board that Bart built during his creative process.
For music, Bart’s favorite band was ELO. As it happens, though I liked them back in the day, I’ve “discovered” them for the first time thanks to a Gen Z review. We went to a Billy Joel - Elton John concert, but the most memorable was Pink Floyd at Rice Stadium. A thunderstorm rolled in with a lot of lightening displays that seemed to be part of the show. I doubt in today’s world, the concert would have been allowed to continue, but Pink Floyd rocked on until an absolute deluge of rain unloaded from the lightening filled skies. Even then, they kept playing until their massive speakers got blown out followed by the entire stadium. In the pouring rain, and in the dark, we had to evacuate, but it was pretty orderly at least where we were. By the time we got to the car in the stadium’s parking lot, the area was flooded and we were stuck. But I will always remember the amazing lightening displays that seemed to be part of the show—it was magical.
Bart’s mother worked at an architect firm (creativity runs in his family!) and the architects participated in the annual sandcastle building contest on Galveston Island. We went down a couple of years to see the amazing creations that were also powerful metaphors to the transitory nature of creation itself.
Bart was super proud when his brother, Brad, got married. Bart is the older brother, and I found his joy for Brad to be extra amazing given that Bart’s health condition meant it was unlikely he would have that experience. Bart was not always the big brother that he needed or wanted to be, but when it came to Brad’s marriage, he did his best.
It was a heavy thing to know that he would die young. But I never felt the heaviness from him. Near the end, I gave him a hug as I left to meet my future husband (Tony) at Palmer Episcopal Church for Sunday services. And I realized he was dying (that the disease must have come out of remission) but I was in too much fear to say that to him. During the service, I started to ball—a woman next to me brought me into an embrace and I sobbed into her shoulder. As I drove home, I decided he would need to go to the hospital. But he wasn’t home. He had a tendency to disappear, so I wasn’t immediately panicked. I was surprised though that he had the energy to go somewhere. I thought that was a good sign. His family was out of town. My memory is pretty hazy during that time.
I think his family got back the next day, and they found Bart dead in his parent’s home. I believe that Bart didn’t want me to be the one to find him, and that he used whatever lifeforce he had left to get to his parents. That was Bart—looking after me even as he was about to die.
That night, I had a powerful dream. There was a grand feast, fantastical, and we were on a Nautilus in space. Though it was festive, I knew it was goodbye—Bart looked at me and it felt like the real Bart (not just a dream), and his eyes held an infinite sadness that he would not be able to visit me again.
In my life, I have been blessed with 2 amazing friends—my husband Tony and Bart (yes, there have been others but these relationships were special and next level).
There’s more that I could say but I’m leaving it here.
