Chapter One

The Monster


Over the years, I have become friends with the Israeli writer Aharon Appelfeld. Aharon was born in a town called Czernowitz in the former Hapsburg border province of Bukovina. As a child he was deported to a concentration camp in Transnistria. He survived and settled in Israel, where he has lived for the past fifty years and where he writes about the Holocaust in a subtle yet powerful voice. We have shared many cups of coffee together in his apartment outside of Jerusalem, and I have shown him the centrifuges, freezers, and animals in my laboratory in Boston. In his life and work Aharon has had to confront the human spirit gone astray; in my work I have had to confront biology gone astray. Two different holocausts.

"The disease you are studying is a monster," Aharon said to me late one afternoon as we walked in the hills surrounding Jerusalem. "You cut it here, it grows there. You think it is down, but it rises again. You believe you understand why it behaves the way it does, but you are wrong. That's what you must do, Howard, tell the story of the monster."

Aharon was right. Multiple sclerosis is a monster. The monster has finally been wounded, but not yet killed.

I confront the monster every time I see a patient with multiple sclerosis, an experience that has been part of my life for over thirty years. There are over four thousand patients seen in our MS center every year, and I have patients I have followed for close to twenty-five years. I no longer see general neurology patients. Although I have worked hard in the laboratory and now run my own large lab, I never just wanted to work in the lab; I always wanted to confr