Ben Harris grew up in a “chaotic” and “rough-and-tumble” household (descriptions proffered by his older brothers Mike and Dan). There were six siblings—first Mike, then Dan, then Kathy, Amy, Ben, and finally Jason—and often each would have two or three friends over. But the constant party didn’t seem to bother anyone. Some even used the popularity to their advantage. Dan was lucky enough to have acquired an Atari 400 computer, but to play any games, he and Ben would copy the code, line by line, from the Atari magazine using a membrane keyboard. Five hundred lines of code; it took hours. Then they thought of a better way: get the neighborhood kids to do it. If you typed for one hour, you could play for three, that was the deal. Their friends jumped on it, and before long they were all taking turns gunning down rudimentary rocket ships.
Ben excelled in the classroom, even convincing his parents to send him to a selective prep school so he could get into a good college. It worked: he went to Columbia, then to the University of California at Riverside for graduate school. He met and married his wife, Beccy, and comfortably settled into his dream career, which he also excelled at. Recruited by a company called ProCure, Ben would travel the country helping install and maintain proton radiation facilities in US hospitals and cancer treatment centers. He had a son, Rawden, who inherited his father’s intelligence, choosing to engage it as a member of the school’s chess club. Beccy helped organize the chess tournaments; Ben ran a program that randomly paired up the students for matches. Life was good, damn near perfect, and he knew it, rarely losing the perspective that comes with true appreciation. Unfortunately, Ben didn’t get to enjoy his good life as long as he may have liked.
Ben Harris, aka AmazoBen or just plain Amazo, passed away last fall, victim of a disease that he had spent his final years trying to help solve. His friends and family all cite his intellect among his defining characteristics, with many implicitly or explicitly admitting inferiority to Ben in that regard. They also emphasize his kind and supportive nature: never did he make them feel any less intelligent than he; if anything, they felt smarter when they spoke with Ben.
I had the pleasure of meeting Ben last April, four months before his death. He shared with me his personal story, as well as some of his radical ideas on the public sharing of patient data, the clinical trial system, and role of government regulation in end-of-life medical decisions. With a masters in philosophy in addition to his more practical degree in physics (which pragmatic Mike had gently talked him into), Ben liked to push the boundaries of traditional thinking. And while drug development and regulation may seem delicate areas to question the status quo, Ben is certainly not alone in his belief that something needs to change.
As he neared the end of his life, Ben navigated the final descent as gracefully as he’d handled the entire journey. The family trickled through Ben’s Bloomington, Indiana home, enjoying the last months, weeks, and days with their beloved Amazo. In early August, Ben made the decision to stop eating. He had always said that, as soon as he was unable to care for himself, he would let the disease take him. He didn’t want to live that way. More importantly, he didn’t want his family to live that way. He wanted his wife and son to remember him as he was, and to celebrate that memory as they continued their lives without him.
Ben was a dedicated researcher of ALS and a willing experimentalist, trying various unproven treatments on himself, sometimes and sometimes not in the context of an FDA-sanctioned clinical trial. Most of the time I think he was more hopeful that his detailed and open records of his own experiences could yield some insight into the still-mysterious disease, than he was hopeful that any of the treatments would really help him. He was a vocal advocate for compassionate use programs that gave patients access to therapies still making their way through clinical testing and a strong believer in the legalization of assisted suicide. But to me, more than any of these valiant causes, the thing that struck me most about this dying man was that he was happy.
He’d be the first to admit it. He had always been happy. Despite the unfortunate luck he’d had with his health, everything else in life had gone just right. Even when ALS had done its worst—robbing Ben of his ability to control his own body and killing him in less than three years—he never lost his gratitude for the life that he had. He was happy, he said, and he would do it all over again in a heartbeat.