The Struggle Between Pain and Not

April 14, 2015 5:31 PM

The Butterfly Child is a short documentary about Jonathan Pitre, a fourteen year old with Epidermolysis Bullosa, a rare skin disorder (NSFW).
posted by Lutoslawski (22 comments total)

There are moments in that that show a surprising window into this young man's experience of what looks like transcendent extremes of physical suffering. Then he speaks, and there's spark and humility and so, so very much presence in him. I'm in awe. Thanks for sharing.
posted by late afternoon dreaming hotel at 5:56 PM on April 14, 2015 [5 favorites]

He is enormously well spoken. I can't even imagine living with that kind of pain.
posted by ocherdraco at 6:15 PM on April 14, 2015

Suddenly, my "bad" day at the office seems a lot more manageable. Man, what a fighter. What a courageous, well-spoken young man. I wish I had just a drop of the courage Jonathan manages to summon every single day.
posted by xedrik at 6:31 PM on April 14, 2015 [2 favorites]

He is enormously well spoken.

Given that he gets blisters in his throat just from eating, I'm quite surprised he is able to speak much at all.

I mean, I feel guilty for metaphorically calling this heart-wrenching. Because what pain, emotional or otherwise, could I possibly feel that compares to what this kid goes through by 10am every single day? It's like he's living for the moments, the seconds literally, that he is not in agony. Because he's Canadian, I'll say it's like in that Gordon Lightfoot song: "Sometimes I think it's a shame when I get feelin' better when I'm feelin' no pain."
posted by tempestuoso at 6:38 PM on April 14, 2015

This is the same disease that Jonny Kennedy had in the documentary "The Boy Whose Skin Fell Off" (if you've happpened across it, you'd remember it by the Heinz bean can he had emblazoned on his coffin (yes, he was awesome)). How amazing that both of them could somehow manage to retain something so life-affirming -- that spark, as said above -- that just couldn't be quashed, even while enduring one of the worst curses that I can fathom. It gives me hope about humanity, somehow. I'm not sure how to say it.
posted by argonauta at 7:04 PM on April 14, 2015 [1 favorite]

There's a really good doc called Butterfly Girl about a young woman with EB. It's a heartbreaker.
posted by goatdog at 7:07 PM on April 14, 2015 [1 favorite]

Well, The Lord works in mysterious ways. Or there is no God.
posted by mississippi at 7:23 PM on April 14, 2015 [9 favorites]

He took that scout role seriously; just as I imagine he takes any role seriously. His goal is to raise awareness of EB, but it strikes me that he is more than a poster child. Having just watched Cancer: The Emperor of All Maladies, the comparison would seem to be that he's not only comparable to "Jimmy" (actually Einar) of the Jimmy Fund, but also to those adults who decided that there needed to be a "Jimmy" in the first place.
posted by ocherdraco at 5:09 AM on April 15, 2015

What an extraordinary young man. Such grace and wisdom... He understands Life better than most folks many times his age.

I cannot imagine being his mother and a daily witness to his agony.
posted by kinnakeet at 6:50 AM on April 15, 2015

In my childhood, I knew a pair of brothers with this issue, sadly both passed away from skin cancer in their 20s. They couldn't go outside much so we played a LOT of nintendo.
posted by St. Peepsburg at 7:03 AM on April 15, 2015

The bravery of this boy is astonishing. His mother is a saint. Where is the father?
posted by waving at 7:20 AM on April 15, 2015

Some friends of mine have a kid with EB. She's not an inspiration, or brave, or proof of the non-existence of God (?!), and her parents aren't life-affirming saints. They're a family composed of three human beings, their daughter is a delightful pain in the ass like most kids her age, and her parents are like any other people. Their parenting toolbox includes rather more Fentanyl than most people's, but they're much more similar to all the other families I know than they are to a Lifetime movie.
posted by KathrynT at 8:04 AM on April 15, 2015 [3 favorites]

they're much more similar to all the other families I know than they are to a Lifetime movie.

Well, to be fair, the EB kids have to suffer excruciating pain, daily, so I think that does qualify them as brave and inspirational compared to families whose members do not have a disease such as this.
posted by waving at 8:29 AM on April 15, 2015

Well, to be fair, these people are my good friends and I know them well, so I know how much all the "brave / inspirational" crap irks them to their very core, but no, please do go on!
posted by KathrynT at 8:32 AM on April 15, 2015 [1 favorite]

As someone with very traumatic experiences of being a disabled kid, I would say the psychic pain of every adult in my life twisting me into inspiration porn and emotionally holding me at an arms distance as if I were some kind of mutant far, far outweighed anything my disability physically inflicted on me. YMMV.
posted by Conspire at 8:35 AM on April 15, 2015 [4 favorites]

Since brave and an inspiration are more about the person doing the judging/perceiving rather than intrinsic to the person or people described, these descriptions can simultaneously hold truth for some people while still irking others to their very core.

I think this is true about a great number of value judgements, which is why I try to be careful about how I will describe people, even in what I believe to be a positive light.
posted by aniola at 8:47 AM on April 15, 2015 [1 favorite]

(It's also why when I get anything that can be construed as a compliment, my response is often "thank you.")
posted by aniola at 8:48 AM on April 15, 2015 [1 favorite]

KathrynT Are you sure that these are good friends because in your post you state your EB friend is a girl. Anyway, as the aunt of a teenager with severe disabilities, I have seen my sister and her husband work hard to maintain as much normalcy for their son as possible, and yes, they acknowledge the bravery of their son on a daily basis Being irked by this doesn't seem to cross their minds YMMV
posted by waving at 8:50 AM on April 15, 2015

Not THESE people, waving. Not the subject of the post. I have other friends, completely different individuals, entirely separate people, who have their own child with EB. Those are the people I am referencing. I've never met the young man who is the subject of the documentary in the FPP in my life.
posted by KathrynT at 8:53 AM on April 15, 2015

Huh, I did not expect this video to lead someone to get riled up about a family not mentioned at all in the video. Maybe it's a good time for a reminder that this kid, the one we're talking about and not one you know in your daily life, is open about his surprise at having had the impact he's seen from his eforts (and he still seems excited to be able to talk about even the banal parts of his experience, his ups and downs, and other things that don't strike me as being part of a Lifetime movie).

“It’s just an honour to have all these people wanting to help. I’m just a simple boy and I don’t get how all this is happening in front of my eyes.”

Oh and also, since this isn't a Lifetime movie:

"Jonathan’s mother has asked that all donations be directed to DEBRA Canada. Donations can be made online at debracanada.org or by mail to: DEBRA Canada, 1500 Upper Middle Road, Unit 3, PO Box 76035, Oakville, Ontario, L6M 3H5"
posted by late afternoon dreaming hotel at 9:45 AM on April 15, 2015 [1 favorite]

DEBRA is a great organization doing yeoman's work on this issue, and I would encourage everyone who is misty-eyed and choked up about the challenges this young man faces to donate to them ASAP.
posted by KathrynT at 9:53 AM on April 15, 2015

Came here to post the Jonny Kennedy doc and was beaten to it by argonauta. That was an awesome and moving piece of television; thanks for sharing this, too.
posted by vickyverky at 11:35 AM on April 15, 2015 [1 favorite]