Oliver Sacks' Anthropologist on Mars was published in February of 1995, and Sophie was born one month later. By that summer, she had been diagnosed with infantile spasms and we had begun the journey that would take us to proverbial other planets. I read Sacks' book with the same relish that I'd read his previous ones, but this time I felt he was speaking directly to me.
I lived in New York City in the nineties, not far from where Dr. Sacks practiced. I had looked up his address and telephone number in the phone book. I thought he sat behind a great wooden desk with a small light that illuminated not only the paper in front of him but also the consciousness of the people about whom he wrote. I fantasized about calling him and imagined we’d have a conversation about Sophie – not so much about stopping her seizures and making her normal but rather about her integrity as a human being despite whatever peculiarity or abnormality she possessed. I never called Dr. Sacks, but I did read everything he wrote. I also sat in a chair in the third row from the stage where he stood reading aloud from his work many years later in Los Angeles. Because his words had so deeply resonated with me, sustained me, really, during some of my darkest days as I wrestled with Sophie’s disability, her seizures, her inability to speak or care for herself, her identity and mine, I felt an enormous impulse to jump on the stage and embrace him. I didn’t do that, either.
This morning, I woke to the news that Dr. Sacks had died. I understand that some disability activists have criticized him for exploiting his patients’ disabilities in the interest of narrative. Scientists have criticized him for emphasizing narrative over the clinical. More, though, have loved him and been illumined by his writing. It’s been more than twenty years since I read An Anthropologist on Mars, and while my daughter’s brain has remained a mystery to the neurologists that have failed to help her clinically, her integrity as a human being, reinforced in my own mind by the writing and life of Dr. Sacks, is far more evident. I will miss knowing that Dr. Sacks’ light is on, somewhere in the world, and am grateful for how he shed it on Sophie and me.