I've always believed in the power of nicknames to reveal truths about a person. My grandfather nicknamed me "the little professor" because I could usually be found with my nose in a book. Indeed, one of the favorite images I have of myself is a picture taken by my fourth grade teacher and given to my parents. In the picture, class is over, the chairs are up on the tables, and yet I'm still sitting there reading a book.
After two years working on the book, "PLAGUE - One Scientist's Intrepid Search for the Truth about Human Retroviruses and Chronic Fatigue Syndrome, Autism, and Other Diseases", I have a greater appreciation for the nickname given to my distinguished co-author, Tsunami Judy. Dr. Judy Mikovits certainly can talk. Sometimes I'd interview her for an hour and a half and when I did a word count we'd be at well over fifteen thousand words. "Judy, they wanted a hundred thousand word book. With just one interview we're fifteen percent of the way there!" (Update - It's probably going to be a hundred and fifty thousand word book.)
I like the image of my co-author as some elemental force of nature, because to a great extent it's true. And yet, there's also a gentleness and an unshakeable devotion to the betterment of humanity in her. For those of you familiar with the story, you'll know that after a civil dispute with her former employers went in a really "bizarre" direction in the words of Jon Cohen, a writer for Science, she was jailed for five days. I wanted to write in some joke about how the staff at the jail hadn't improved much since the days when they hung horse-thieves.
"Oh, no," said Dr. Mikovits, "They were really very professional." Who thinks to compliment the professionalism of their prison guards? My co-author, that's who! And as she was waiting to be released, one of the other prisoners told the guards that Dr. Mikovits was a cancer researcher. A few of the guards had family members with cancer and came up to ask her questions. They gave her their cards and she promised to review their cases and offer her opinion as to what they should ask their treating physicians. Who does that?
And it reminded me why I was attracted to this story in the first place.
I want to be inspired by scientists. I've heard enough double-talk, wilful ignorance, and outright lies from scientists in the autism struggle that it's blinded me to many of the couragous people who are trying to fight our battle. I want to be inspired by scientists who care about humanity, not whether a certain line of research will affect their lab's funding.
The mainstream media may characterize this struggle as parents vs. science, but in the course of writing this book it's become clear to me how much of a civil war is being fought within science. I recently read Desmond Tutu's book on forgiveness and one story really stuck with me. A South African activist was under arrest, and as he was being beaten by one of the security guards he had an epiphany. He realized that the man who was beating him was as much a victim of apartheid, as the man he was beating. The prison guard had a family, friends, hobbies, and when he was young he likely had great ambitions. He probably never imagined he would find himself in a small room beating a defenseless man. The fight needed to be against the unjust system, not those individuals who were twisted and corrupted by it.
If you are in science, how can you be blind to the fact that so many of our children are sick? I think there are many who ask this question, but don't know what to do. Just as that anti-apartheid activist realized his struggle was also to liberate the prison guard who was beating him, I believe that this book is also to liberate the scientists.
We all need to break the system which is not just harming our children, but corrupting our science and those who work in it.
PLAGUE goes on sale September 2, 2014 at bookstores everywhere.
Kent Heckenlively is a Founding Contributing Editor to Age of Autism and author of Plague: One Scientist's Intrepid Search for the Truth about Human Retroviruses and Chronic Fatigue Syndrome, Autism, and Other Diseases. Visit his website at Plague The Book.. You can pre-order the book HERE.