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Ashlyn Blocker Feels No Pain
November 15, 2012 7:24 AM   Subscribe

The Hazards of Growing Up Painlessly
posted by Four-Eyed Girl (32 comments total) 16 users marked this as a favorite

 
That's so weird. I, myself, often dream of being pain-free for even a day. My back, especially, makes me hobble-around and act as if I'm some delicate twig, about to crack in half. On the other hand, pain is your body's way of telling you something is very, very wrong. Sometimes, life-threateningly so.

That said, I'm pretty sure my own daughter would kill to be this girl...if only for about a week every month.
posted by Thorzdad at 7:32 AM on November 15, 2012


I thought this was going to be about pampered rich kids or helicopter parenting. Instead-- oy. My heart goes out to those folks.
posted by gwint at 7:35 AM on November 15, 2012 [1 favorite]


Awww bless
posted by Foci for Analysis at 7:36 AM on November 15, 2012


This is a terrifying condition, and I'm amazed that she's gotten as far as she has without more damage to her fingers or tongue.
posted by leotrotsky at 7:38 AM on November 15, 2012 [1 favorite]


I think the most striking thing about her condition is that you realize that pain's major function is to proscribe our behavior from very early on. That sounds obvious, but I think day-to-day a lot of people see pain as an error condition, like a signal that your body sends out to indicate that something is wrong. That seems like part of it, but then you see how Ashlyn will just plunge her hands in boiling water and you realize that pain is the mechanism by which your brain is taught to avoid those parts of behavior space that are likely to cause you physical damage. The behavior landscape for people who can feel pain has low-pain troughs in it that the mind will roll down into, but Ashlyn's is flat in that dimension, so there's nothing pushing her away from the things that will hurt her.
posted by invitapriore at 7:54 AM on November 15, 2012 [1 favorite]


People who have this condition seem to have inhibited pleasure sensors as well. And not being able to smell would be dangerous too — you can't smell smoke, or tell if your food has gone off. I read of a woman who had it and died of horrible infections at 26. She didn't change her position and move her joints enough (we need to move around a lot, even in our sleep) because she wouldn't get the discomfort that prompts it.

I wouldn't want this condition for any length of time.
posted by orange swan at 8:01 AM on November 15, 2012 [1 favorite]


I have no sense of smell. I can taste things (including very strong scents) but if you hold something under my nose, nothing. Always been that way. So I guess I have some minimal idea of what this is like, on a vastly reduced level of impact. Only way my life has really been impacted is that I'm wary of gas appliances (because I couldn't smell the additive the gas companies add to household gas to make leaks apparent). This, though, sounds like everything would be a potentially deadly situation, though.. Strong kid, strong family!
posted by Alterscape at 8:02 AM on November 15, 2012 [1 favorite]


there was an episode of House about a girl with this condition, and the article is very similar to the structure of that episode. i almost feel like, given that she got media attention almost 10 years ago, the storyline could have been inspired by her life..
posted by ninjew at 8:05 AM on November 15, 2012


Poor girl. If it was me I'd have been dead by age 5 from misadventure.
posted by MuffinMan at 8:22 AM on November 15, 2012


This is a fascinating story, thank you for sharing it. I found it so interesting that she sympathizes with others when they feel pain, without any idea what they are feeling. It brings up lots of thoughts about experience vs. conditioning. Amazing.
posted by artdesk at 8:26 AM on November 15, 2012


I met Ashlyn when I was a medical student doing a family practice rotation in south Georgia. Seven years later, she is still one of the most interesting patients I've ever met. She was just in for a check-up, but I remember that she was sitting in a most unnatural position, with her legs curled and buckled under her bottom. And the only thing I could think was, "man...that must hurt."

(As an aside, during the same rotation I saw a kid with Beckwith-Wiedemann syndrome who also had hemihypertrophy. One half of his body, split sagitally down through the nose/sternum/navel, was about 30% larger than the other half. Just...everything was bigger. His right eye, ear, half of his nose, nipple, arm and leg length - everything!)
posted by robstercraw at 8:27 AM on November 15, 2012 [9 favorites]


Also, the article doesn't mention it, but I know that many of the patients who are diagnosed with congenital insensitivity to pain undergo prophylactic appendectomies and cholecystectomies (gallbladder removal), just because pathology of those organs would be at the life-threatening stage before any symptoms besides severe pain manifested.
posted by robstercraw at 8:30 AM on November 15, 2012 [3 favorites]


There's a documentary on this (not, as far as I can tell, featuring Ashlyn): A Life Without Pain. I didn't manage to see it before it got out of my Netflix queue (it's not available now) but it looked interesting.
posted by Madamina at 8:40 AM on November 15, 2012


Oh god, that thing about Karen Cann shattering her pelvis during childbirth and having her doctors handwave away her concerns about not being able to walk anymore is fucking HORRIFYING.
posted by elizardbits at 8:41 AM on November 15, 2012 [6 favorites]


I can imagine what it's like not to feel pain. I mean, most of us have at one point or the other been under the influence of local anesthetics. What I absolutely can't imagine is the related condition called pain asymbolia (big pdf), in which patients can feel pain but are not in pain--they experience no negative emotional reaction whatsoever to painful stimuli, despite being able to sense them. Sorry if this is a derail, I just wanted to stick it out there because although I'd heard of people unable to feel pain before, when I heard about this condition it absolutely astonished me.

The human body is such a weird thing.
posted by simen at 8:43 AM on November 15, 2012 [2 favorites]


there was an episode of House about a girl with this condition

That was the first episode of House I ever saw, and I thought it was so ridiculous (Just slicing someone open and grabbing it is not how a tapeworm is dealt with; this is how it is done) that I have not watched it again.
posted by TedW at 9:03 AM on November 15, 2012 [1 favorite]


A friend of my dad's got something like this, but late in life, 55-65 I'd guess. The leg against the exhaust pipe was his thing. He did know not to plunge his hand into boiling water, but it was just the casual things that happen in daily life that he had to worry about.
posted by Windopaene at 9:08 AM on November 15, 2012


Also, it's interesting that the doctors expected her to lack empathy because of her condition. I don't really see much of a connect between the physical and emotional like that, I guess.
posted by elizardbits at 9:24 AM on November 15, 2012


I did a lot of research on CIPA for a writing assignment years ago, and jusat the reminder of it gives me the collywobbles.
posted by Navelgazer at 9:29 AM on November 15, 2012


Thanks for posting this.
This seems like it should be a minor thing, but it makes me so happy that this is available to her:

She has a medical-identification tag that she clips to a silicone wristband — she has eight in different colors, which she mixes and matches with her wardrobe.
posted by staccato signals of constant information at 9:51 AM on November 15, 2012


A medical alert bracelet is available to anyone who wants to pay for one.
posted by agregoli at 10:10 AM on November 15, 2012


I have to admit that when I read the headline, I thought it was going to be a hit piece on privileged suburban child-rearing. Terrific article.
posted by phong3d at 10:12 AM on November 15, 2012 [1 favorite]


A Bond villain boasted this "superpower", which I thought incredibly stupid. Not only did I know people with this condition rarely survived to adulthood intact, but - in a fight, knowing you need to favor a limb seems pretty damned important.

Sweep the leg, James. Repeatedly.
posted by IAmBroom at 10:12 AM on November 15, 2012


Right, agregoli, I understand that. The silly-seeming part that I liked was that she had an assortment so she could match. There is something endearing about that.
posted by staccato signals of constant information at 10:14 AM on November 15, 2012 [3 favorites]


A Bond villain boasted this "superpower", which I thought incredibly stupid. Not only did I know people with this condition rarely survived to adulthood intact, but - in a fight, knowing you need to favor a limb seems pretty damned important.

It would be horrible for your physical well-being of course, but an advantage in the context of a fight, because you can't be disabled or distracted by pain, only by an extreme injury that makes it a practical impossibility for you to function, such as having limbs severed. Something similar to this is a plot point in Stieg Larsson's The Girl Who Played With Fire and The Girl Who Kicked the Hornet's Nest. The character Ronald Niedermann only blinks when he receives a blow that would fell anyone else, and he can fight on without a pause, which makes it nearly impossible for anyone to win a fight against him.
posted by orange swan at 10:44 AM on November 15, 2012


I'm sure being unable to feel pain would be an advantage in a fight, but its disadvantages would prevent you from getting there in the first place. A boxer with this condition would probably never make it to the ring, plagued by all sorts of injuries which would be hard to heal without the biofeedback that is pain. A better villain, perhaps, would be able to turn off pain temporarily, but then again, Bond villains aren't meant to be realistic.
posted by simen at 11:00 AM on November 15, 2012 [1 favorite]


Pain is useful, when it warns you that something is wrong. But then there are those pains that just won't freaking stop. Chronic pain conditions, where you walk around every day with your body's alarm bells clanging that something is wrong wrong wrong, and there's nothing you can do about it, are just stupid. Intelligent design, my (chronically painful) foot.

Also, it's interesting that the doctors expected her to lack empathy because of her condition.

I've known plenty of doctors who were surprisingly short of empathy. I don't know if the profession attracts a certain chilly type, or if they just become like that from years of seeing the body as a malfunctioning meat machine they have to open up and fix.
posted by Ursula Hitler at 12:27 PM on November 15, 2012


Metafilter: a malfunctioning meat machine
posted by Malice at 1:49 PM on November 15, 2012


T.C. Doyle has a short story, called Sin Dolor, about a boy who feels no pain. It's available to New Yorker archive subscribers. Looking it up to see if the title needs accent marks, I see someone did a short film from the story as well.
posted by xo at 3:07 PM on November 15, 2012


Congenital analgesia: The agony of feeling no pain
posted by homunculus at 3:41 PM on November 15, 2012


Should we eliminate the human ability to feel pain?
posted by homunculus at 3:42 PM on November 15, 2012


ninjew: "there was an episode of House about a girl with this condition, and the article is very similar to the structure of that episode. i almost feel like, given that she got media attention almost 10 years ago, the storyline could have been inspired by her life.."

That's because Lisa Sanders, the author behind the NY Times Magazine's Diagnosis column, is House technical advoisor.
posted by pwnguin at 8:04 PM on November 15, 2012


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