Justin Heckert, a writer in Indianapolis, is the author of this week's cover article about Ashlyn Blocker, a 13-year-old who is physically incapable of feeling pain because of a genetic mutation.
How did you get started on this particular story?
My first job as a journalist was at Atlanta, where I was a staff writer from 2003-2005. The first A.P. article about Ashlyn came out at the end of 2004, and other papers around the South picked it up and were writing about her, and then she was on television. "The girl who feels no pain." I was amazed, reading about this little girl. In 2005 I found her parents' phone number and gave them a call, explained that I'd read about them and had an interest in driving down to Patterson (about four and a half hours from Atlanta) and writing a longer story than others had done. Her mother, Tara, sounded exhausted. I think Tara said something like, "Well, I dunno, how long would you need?" — and sighed. Ashlyn, at that time, was 5 years old. I was thinking: can a 5-year-old even be interviewed? That plus the fact that her mom sounded tired of giving interviews made me wait. I kept the idea in my back pocket, and followed Ashlyn's story over the years, knowing I wanted to come back to it.
This year, a friend asked me if I was still going to do the story — they inquired about the girl who feels no pain. Tara remembered me, from that first phone call in 2005. I asked about Ashlyn. She was 13. She was playing clarinet in the middle-school pep band. She was crocheting purses. She liked the color blue. She was learning to cook. She had a personality. At that point, I knew it was time to do the story.
Ashlyn seems like such a normal, nice kid. Were you surprised by anything in her behavior when you went to visit her?
It was easy to forget that she can't feel pain. She seemed completely normal, and she looked normal. We played checkers a lot, and she was very, very competitive. She not only beat me, but she would also try to distract me and then move one of my checkers into a compromising spot. I think she liked the fact that I called her out on it. Other than that, I helped her sister write a speech for student council. We went to a football game, and went to eat dinner at Huddle House in Patterson, and Ashlyn drew pictures on a napkin, and she and her sister had a contest to see who could shout the loudest. Again, regular stuff.
Only a few times was I thinking: whoa — she really has a lot less fear and regard for her body than other girls her age, anyone her age, anyone at all, really. She was playing air hockey with her sister so crazily I thought she might hurt herself, or hurt her sister. She threw half of her body onto the table and was trying to smash the puck toward the little goal as hard as she could. Her parents were mortified.
Her doctor describes pain as a gift that she doesn't have. Isn't it also an adaptive phenomenon — those who can feel pain survived? Is that why people like Ashlyn are so rare?
Yes. Her friend Katie Smith, another 13-year-old, has been around Ashlyn a lot and has learned enough about pain to say this: "It's a good thing that I have pain because . . . the people who don't, they could bleed to death and they might not know. Those of us who can feel pain, we have a chance, a better chance of surviving. Like, if she bleeds to death, and she's asleep, she probably wouldn't know. And she would die."
Did you talk at all to Ashlyn's siblings about how they see her condition?
Yes, I did. Tristen, her 10-year-old sister, is obviously aware of Ashlyn's condition, but the one who looks out for her most is Dereck, who's 15. He's been making sure she isn't cut or hurt since he was little. The following is a conversation that I found really illuminating between Dereck, Ashlyn, Ashlyn's mother, Tara, and Ashlyn's father, John:
Dereck: Everybody knows that she cannot feel pain. Pretty much everyone in school. Most people in town. Everyone that knows me knows that my sister can't feel pain. … At this point, I know everything about it.
John: How come Ashlyn doesn't feel pain, Dereck?
Dereck: Her SCN9A gene mutated.
John: What do you mean by mutated?
Dereck: It permanently changed.
John: When you say mutated, how did it mutate? Why? What happened in that change?
Ashlyn: Mommy must've ate a bad hot dog!
Tara: When I was pregnant with Ashlyn, I was eating ballpark hot dogs and got sick. Came down to see my parents … John ate two hot dogs, we got so sick. She's talking about those hot dogs.
John: When it mutates, what exactly happens?
Dereck: I dunno. Heh!
Do the doctors have any idea why her lack of sense of smell is connected to insensitivity to pain?
From what I understand, and from what I've read, doctors think that it's because our brains use the same channel to both sense smell and feel pain. Her parents didn't know Ashlyn couldn't smell until this past year. There's a picture of her as a little girl, dressed in a white dress with sequins on the shoulders, holding a purple flower. She has it pressed up right against her nose. She had seen other people press flowers to their noses, real close. The picture is framed in the Blocker house. They didn't have any idea that their little girl couldn't smell that flower.
A tantalizing suggestion in your article is that studying this gene mutation may enable doctors to ''turn off'' pain for those who have chronic pain. Did you talk to doctors about this?
Yes, I did talk to doctors about this. This is why Dr. Roland Staud's research on Ashlyn, for instance, is so important. He said that affecting the (SCN9A) gene in a similar way as Ashlyn's condition could result in a very powerful analgesic therapy for someone who has chronic pain. Which basically means that, yes, they're trying to use people like Ashlyn to figure out if there's a treatment for chronic pain that doesn't involve pain medication. Stephen G. Waxman, a professor of neurology who is also trying to figure this out, mentioned possible implications for patients with chronic pain especially because of dysfunction in the nervous system, nerve injury or shingles.
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