Loretta Falcone – TRANSCRIPT
Imagine living in Italy, and imagine one day that started out like any other day, any normal day. Come on kids, get it together, finish your breakfast.
Shoes, bags. Oh! Actually, I was feeling really sick. I had a really bad headache and a sore throat. But I took the kids to school, came home and, you know me, I never stop, but I rested. And then the phone rang, “Signora, come to collect your son.”
So, I ran down to school feeling not so good, but, oh, you know my son, he’s in middle school now. He loves chocolate chip ice cream, soccer, and he’s really good at mathematics. When I arrived though, the school director, she sat me down and she said, “Signora, he’s really not doing so well. What is it?”
“He’s hearing voices.” Hmm. The school director called a pediatric hospital, and she sent us down for an evaluation. So, I arrived, I signed the paperwork, and we were sent upstairs. And when we arrived upstairs, we were asked to remove our shoelaces, give up the charging cords to our devices, and to relinquish our belts.
Where are we? I looked over at the nurse’s paperwork, and it said “hallucinations.” We’ve been admitted to a locked psychiatric ward for children. Imagine my denial I mean how did this happen? What are we going to do? How am I going to get out of here? Well, certainly, tomorrow, everything is going to be fine In one day, from breakfast as normal to a locked psychiatric ward at night, our lives had turned upside down.
What is going to happen? The next day, wake up in this safety room. There’s four walls, a ceiling, a floor, there’s a door, and the only window is barred. Before me, there are two beds, and – ah, at the end of each bed are these long, white straps, and they’re rolled up at the end. In one bed is my son with his dark, curly hair, and in the other bed is a small, frail boy, he’s about ten, very blond, and extremely medicated. The two boys share the same room, the same doctor and the same door.
“Mama!” my son called me, “Mama, help me.” Help him? How am I going to help him? I don’t know anything about medicine. I just feel locked in fear. And how did this whole thing happen, anyway? And – It’s a deep dark world behind that door, and I’m really not sure, but what if I don’t help him? Will he be okay? I don’t know. But it’s not the first time I’ve been in this darkness, I, I, I worked for NASA, studying the outer planets.
We thought that Uranus would spin like any other planet, gracefully twirling around the sun. But when spacecraft telemetry rolled back from the flyby, we learned that Uranus rolls. It doesn’t spin. What we thought we knew, what we believed about planetary motion, is far different to what we observed close by. We sought to classify billions of galaxies, it was the first machine learning application to objects in deep space.
And it took sheer humility for the astronomer to accept an algorithm far outside his realm of application. A hundred billion galaxies. A hundred billion neurons. If intuition could bring insight to a hundred billion galaxies, perhaps intuition could bring insight to a hundred billion neurons. The sheer awe of the universe within my son’s brain.
And so I simply begin: What do I know, and what don’t I know? I mean, come on, between you and me, it’s not like he’s talking to the toaster, and it’s not like the toaster is talking to him. What is it? And, with a friend, I realized he understands the absurdity of these ideas, and that differentiates a hallucination from an intrusive thought. I can do this, I can do this, and I open the door, and I cross into this whole new world, with a whole new language, TNFα, caudate nucleus, interleukins? Meanwhile, my son rests, he sleeps. The more he sleeps, the more I read. Anything, everything.
I mean, if I look at it from – from the lens of neurology, it does begin to make sense, but when I pop out, I don’t know. And when I look at it from the lens of immunology, yeah, it does, it does, it does, it does make sense, but – oh, but it’s so confusing, I’m so overwhelmed, I mean it’s not like it’s a car, it’s not even a phenomenon, it’s my son. Help me. Help me help him.
And then I just worked and I put all of these things together, and I, I woke up, in the morning, and those rays of light converged, I could see the constellation, it all came together. I have a solid hypothesis. I threw it together in 20 slides, and I ran into the hospital, and when I opened the door those long, white straps, they were untied, and they were holding down the limbs of that small boy who’s next to my son, and he was screaming – screaming, screaming into the darkness. After that, there’s, there’s no more room. There’s no more door, there’s no ceiling, and there’s no floor. There’s only darkness and my hypothesis. You know, Einstein said, “We don’t see the world as it is; we see the world as we are.”
What is it that I need to learn? Hope begins in the darkness, hope is seeing in the darkness. Hope is my hypothesis I won’t give up, I keep looking, calling centers of excellence, neurological institutes. Nobody’s heard about it. How can it be? At times, I just feel so alone.
It’s like the oblivion of deep space itself. You know, it’s only in that oblivion that hope shines so brightly. It begins like a stubborn star gleaming on the horizon, and then, like a comet, it darts across the night sky, and it carves a path of determination. Now I did it, I found it, and finally, yes, a hospital confirmed it, and they listened, and they said, “Yes, you have a diagnosis, it’s PANDAS. Pediatric autoimmune neuropsychiatric disorder associated with streptococcus. It’s the same bacteria that causes a really bad headache and a sore throat. In days his symptoms subside and then the treatment is so simple. Wow! He rested, and I rested.