I recently read an article in The Atlantic that I cannot stop thinking about, for a number of reasons. It introduced me to a rare genetic disease called fatal familial insomnia, or FFI. And it introduced me to a remarkable couple who have transformed their lives in order to find a cure.
In short, FFI is marked by progressively worsening insomnia, eventually resulting in total sleeplessness. Death follows quickly, normally within a year. In between, as you might imagine, FFI causes memory problems, weight loss, paranoia, and general physical and mental deterioration. It’s a particularly brutal way to die.
The Atlantic article focuses on the daughter of a woman who died of FFI; the daughter found out that she also has the gene. Unless some novel treatment is developed, she will likely develop the disease and die of it. Average age of onset is about 50. She is 30.
This young woman – Sonia – is a Harvard-trained lawyer who was working as a consultant. Her partner, Eric, studied urban planning at MIT and worked as a software engineer. At first, they did what anyone would do when faced with an illness: they educated themselves. They learned all that they could about the disease. They discovered that there was promise and progress in the research that was underway.
And here is where the story really got me: they became part of that research. Not as guinea pigs or volunteers or fundraisers. As scientists. Of course.
Both of them quit their jobs and started working as laboratory technicians at Massachusetts General Hospital. In 2013, they crowdsourced funds for a research project. By late 2014 they were enrolled in a doctoral program at Harvard Medical School. Eric has already published some of his work, contributing to the body of research about this disease.
I am awed that two people, faced with the possibility of one developing a fatal disease, would act so definitively to find a cure. I am awed by their intellects; that they could both pivot from their current professions and so quickly become experts in a completely different discipline. I am awed by their progress, their determination, and their optimism.
Most of us dream about changing our life, or at least some part of it. For many, the dream becomes a plan. And if we’re brave and persistent, and maybe a little bit clever, the plan can succeed. But rarely are our lives on the line. The willingness to change your life in order to save your life requires another kind of daring, a stronger brand of courage, altogether.