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.
Exhaustion comes in many forms. Why is it, when you’re really tired, you can’t sleep? I tell you, I would wake up at four in the morning, and I would still hear the cries of that little boy. Yes, the one, him, the one, the boy that was next to my son, the one that was tied to the bed. Is he okay? What happened to him? How many children are suffering from something like this? How many? His cries remind me that we are all humble in the face of uncertainty presented by phenomena. Doctors do the best they can to understand, interpret and diagnose, with the best of intentions. But I’m not a medical doctor, and I didn’t discover this, and the syndrome is not yet confirmed. But there are many doctors interested in understanding it.
And by working together across disciplines, across cultures and across oceans, we will come to a just solution. But how many children are there, how many? It calls for an international conference. And so, back in Italy, in Lake Como, doctors came from all over the United States to begin that conversation with delegates from 23 different nations. In short, we had enthusiasm, but that’s not the best part. The best part is that I found that little boy again, that one, yes! And he, too, suffered from the same illness. But I can assure you, today, that that boy is back in school and living a happy, healthy life just like my son.
You know, we are all united by science and by imagination. We’re all made from stardust from the explosions of billions of galaxies. We’re all sharing this sliver of time together in our cosmic evolution. In our lifetime, techniques in artificial intelligence and machine learning will become ubiquitous. But what remains special to us is our childlike curiosity, our emotion and our imagination.
So dig in, that’s where the juice is at. As a mother, I learned that the response to fear isn’t despair, it’s learning to harness its energy, to find courage, to find hope. And as a scientist, I learned that the response to do a difficult problem isn’t falling into the trap of a known solution, or defending a belief, but perhaps to surrender to it, to find a new way of seeing from multiple points of view. We don’t see the world as it is, we see the world as we are. And the solution is in our evolution.
You know, the unexpected happens to all of us. At some point, everything you love, and everything you’re counting on, falls apart, and you find yourself lost in a room with a barred window and a door feeling imprisoned by your own belief and fear. We are all defined at any given point by any given room, and you can either stay there and defend that, or you can open the door, and with sheer humility, cross into the darkness, knowing that you will find light In short, listen, listen, follow your gut, wonder, innovate. Thank you.
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