Mervyn Rothstein was a writer and editor at The New York Times from 1981 to 2011. He has written for Playbill and for 29 years and was a member of the Nominating Committee for Broadway’s Tony Awards from 2011 to 2014. He is a longtime volunteer writer for the Facial Pain Research Foundation. This essay is offered with the intent of giving readers some idea of what one person’s experience with Trigeminal Neuralgia has been like, and in the hope that it will help persuade them to be a part of finding a cure.

In the beginning, there was the pain.  It was spring 2005. I was sitting at my desk at The New York Times editing an article for that Sunday’s Real Estate News section. As soon as I finished, I could leave work and go home and continue packing for a much anticipated weeklong vacation in Paris. My wife, Ruth, and I were leaving the next afternoon.  And then I suddenly felt a sharp, piercing electric shock in my teeth and gums on the bottom right side of my face. And then another. And another.

“Oh, no, a toothache,” I thought. I didn’t know, because I had no idea it existed, that I was experiencing the first symptoms of Trigeminal Neuralgia, the kind of agony typical of the disease, one of the most painful illnesses known to humanity.

It is said that the pain is the most torturous that people can feel. There’s a reason Trigeminal Neuralgia is nicknamed the Suicide Disease — for those who can get no relief, death becomes a viable option. No known cure exists; surgeries, treatments and medications exist, but their success can be somewhat limited and often not long-lasting.

The timing couldn’t have been worse for a toothache, I thought. Have to pack. No time for a dentist. If it continues or gets worse, I’ll find a dentist in Paris. Or maybe it’ll go away on its own. But of course it didn’t — at least not for long.

And so began my complex odyssey, one somewhat akin to Ulysses’ in Homer’s epic poem. There were adventures and misadventures, pain and suffering, and, finally, a return to near normalcy. This is my tale of that odyssey, its ups and downs, perils and pitfalls, hopes denied and hopes achieved.