Friday, September 13, 2013

The Quest for Skye: Chapter 10

Recap: In our last episode, Skye The Perfect Girl did the following:
1) let an old woman borrow her camera, which made Morgan ECSTATICALLY impressed by her compassion, 
2) randomly gave everything she had to some Poor Jamaican Children, including some things that may not have actually been hers to give, 
3) made dolphins GO CRAZY, and 
4) told Morgan he was sad because he didn't have enough faith.

All right, we're finally done with the dolphin-kissing adventure.

We're back on the ship, starting the convention, which is going to be super fun because our author doesn't particularly care about researching any actual science and yet is going to speak about it. Whee!
“As for donations, I’m proud to announce that almost three million dollars in pledges and gifts have been raised so far on this cruise, and it’s just the third day. Thank you.”
Uh. Holy crap. Either there are a LOT more people on this cruise attending this convention than I thought (and Skye knows every one of them), or everyone here is very, very rich.

The average large cruise ship holds 3000 or so passengers. Let's assume that's the case here, and that every single one of them (except for, apparently, Morgan and Tammy) are here for the convention. That's a $1000 donation per passenger. Finding 3000 people who are invested enough in rare childhood disease that they will randomly donate $1000 can't possibly be that easy. Especially for a fundraiser that's only three years old.
When they quieted, the doctor continued. “I was going to speak on Batten disease today, but we had an unexpected guest from the United States, who by coincidence, came on board the cruise just for leisure. I managed to talk her into speaking today about her clinic in Saint Paul, Minnesota. Many of you may recall the article she wrote, Why We Are Concerned About Rare Childhood Diseases. Ladies and gentlemen, please welcome, Dr. Tammy Hamilton.”
There's that awesomely academic journal article again. "Why We Are Concerned About Rare Childhood Diseases." I love that Doctor Layland Leontiou is forgoing an actual lecture on an actual specific disease to instead introduce someone whose biggest professional credit is that she co-authored a paper indicating that rare childhood diseases are bad. Presumably this crowd knows this already, as they've each given $1000 to the cause already. Maybe she'll convince them all to give TWO THOUSAND tonight!
“If you’d asked me last week what I would be doing on the third day of this cruise, I certainly would not have predicted that I’d be speaking to a hundred of the greatest medical minds in the world.”

There's only a hundred of them?

Every single person at this convention has already donated thirty thousand dollars to the cause??

Clearly I am in the wrong field. I should have been a rare childhood disease specialist and found another one to marry. Then together we'd go on cruises and be able to give $60,000 to a charity and still have enough spending money that we'd be expected to give more.
“Each of us wants to find a cure for the horrible childhood diseases that plague the most helpless victims— our children.”
"If you're looking for the cruise for horrible childhood diseases that plague adults who can take care of themselves, that was the four-week cruise through Niagara Falls."

Tammy goes on to tell the story of a seven-year-old patient she diagnosed with Batten disease. (This is a real disease, BTW, and I suspect Skye will soon be revealed as having it.) The child died three months after the diagnosis, which, according to the website, is not terribly typical, as symptoms appearing in seven-year-olds are usually very early ones, and they would most likely live until their teens or early twenties.

She then explains what Batten disease is and how it works, despite the fact that "[t]his morning, we touched on the scientific facts about Batten disease," so THEY ALREADY KNOW ALL THIS. As she describes it, it actually sounds like an off-shoot of Batten disease, specifically late infantile NCL (LINCL) - or Jansky-Bielschowsky disease, which begins manifesting in children when they are 2-4 years old and is usually fatal by the age of ten or eleven. That fits the earlier child's symptoms as well. So we will assume that even though they just call it "Batten disease" in the book, they are referring to this specific type.

The disease really is a very sad one, with symptoms including seizures, loss of motor skills, and eventual mental impairment. By the time the disease takes their lives, children with NCL are blind, bedridden, and demented.

So Tammy finishes explaining this, and then this happens:
A hand quickly rose. “I’m Doctor Everest from the Clavin Medical Clinic in Great Britain. I’m really at a loss for words. Why is this disease so important? Why not put our efforts toward more common childhood diseases like Leukemia, Multiple Sclerosis, or Muscular Dystrophy? We could save more lives.”
In other words: "Why should we be concerned about rare childhood diseases?"


Well, it's a good thing Tammy is uniquely prepared to speak on that fact, what with that paper she wrote once. Also, it's a good thing they already got that guy's $30,000 before he figured out they were giving it all away to rare childhood diseases. Honestly, what is he even doing here if this is how he feels about it? What, did he think this rare childhood disease convention was a common childhood disease convention in disguise?
“I would suspect Dr. Everest, that if this were your child you would be doing everything in your power to find a cure, or pushing your government to put more money towards that cause.”

Tammy's uber persuasive argument boils down to, "Well, everyone is someone's child," and that convinces all the skeptics. Good thing we had her here to explain that!

A second doctor asks her where she sees herself in five years. (What the HECK kind of question is this? That's not even remotely relevant to the topic at hand, unless he's casually asking her about where she sees her research going. But I choose to think he's subtly trying to ask her out.) She says she'd like to still be a doctor. Well, that's good. Glad to know she's not randomly giving up her job after she spent all that time researching and writing about why people should care about her job.

The focus then shifts to Morgan, who is deep in thought on the van bus, and Skye, who falls asleep. I'd assume several of the other passengers are silently thanking God for a little peace and quiet after her loud, incessant chatter all the way up, but Rothdiener insists, nope, there are no introverts here: "It was obvious her chatter and playfulness were missed."

Morgan muses about faith for awhile. He decides he needs to accept that God has a plan, but he can't actually accept this, so he gives up. They arrive back at the ship and Morgan wakes Skye up.
She woke with a smile and outstretched arms. “This has been the funnest time I ever had. I’m glad I shared it with you.”
"You mean so much more to me than that dumb dad of mine."

After they get off the bus, everyone just waits around for Skye. I'm not even kidding. The entire world revolves around her, it seems. It's not until she finally gets off the bus that everyone else heads onto the ship, following her. Clearly she is in the process of creating a cult. Morgan mentally remarks that now everyone is kinder to each other, thanks to Skye being The Magical Kindest of All.

They go back and sneak into the convention, where Doctor Layland Leontiou is leading a Q&A session, but for some reason people are only asking Tammy questions, despite the fact that, judging by her earlier "lecture," she's not said anything scientifically new. She shared a personal story and then recapped everything they were told earlier. Who on earth wants to ask her questions instead of the people who, well, know stuff? Well, it helps that the questions aren't actually even vaguely scientific. They're all personal interest stuff like in a talk show interview:
“Dr. Hamilton, what’s the most challenging problem you face at your clinic?”
"Oh, I'd say the rare childhood diseases."

Kidding, her real answer is telling families when their children are going to die. She gives another impassioned speech about how every life matters and everyone is someone's child. (I hope the attendees have invented a game where they drink every time she gives this speech.)

Finally, she tells them not to give up fighting for disease cures and then decides it's time for the Q&A to be done. Seriously. She just announces it's done and leaves, despite the fact that she's not the moderator. In my mind, this is how that plays out: She says thank you and leaves as Doctor Layland Leontiou looks at his watch and tries to signal to her, no, come back, they still have like fifteen minutes left, where is she going, how else are these people going to be convinced that we should be concerned about rare childhood diseases?

Morgan, Tammy, Skye, and Doctor Layland Leontiou all reconvene outside the convention room, because apparently they're all done now.
Just then, Dr. Gosset stepped up. “Dr. Hamilton,” he said, extending his hand to Tammy. “What you said touched my heart. I’d never thought of it like that, and when I get back from this holiday, I’ll be implementing new orders to my staff. We’ll be putting more emphasis on the people.”
Good thing she gave that speech umpteen times. She may only have one thing to say to the medical profession, but she sure says it the best! He'd never even thought of children being people until her speech!

Dr. Gosset then randomly offers Tammy a $280,000 donation to her clinic. (Whew! If you include the $30,000 he statistically gave earlier, he's racking up quite a list of donations.) He gives it to her to "assist in her research," which is confusing, because she's barely mentioned her research. He has no idea if her research is making any difference at all or if it's scientifically founded or if it's already been done and rejected by a medical school in Sweden or anything about it, because literally all she has said about it is a vague reference to lab experiments.

I don't know about you, but if I were going to donate $280,000 to a clinic researching cures for a rare childhood disease, I'd want to hear just a little bit about the dang science.

Thus ends Rothdiener's approximation of what happens at a medical convention. Everyone throws money around, an impromptu speaker shares a tearjerker story and deliberately re-explains stuff that's already been said, then everybody asks personal questions of that speaker. It's not like they have the knowledge and ability to discuss, say, actual science or actual research. Nope, that couldn't possibly interest anyone. Better just keep trying to convince people they should care about rare childhood diseases. Oh, and also, everyone is someone's child. Don't forget that part.

(Chapter 11.)


  1. Everyone is someone's child and rare childhood diseases are bad? My brain esploded.

    So they've raised $3 million in three days from a fundraiser in its third year? I'm disappointed he didn't say they'd raised $3,333,333.33.

    It was nice to take a break from worshiping Skye for a chapter, and it was also nice to see Rothdiener's expertise expand to include "Knowledge of fundraisers and donations". Dude continues to impress!

    Is it too late to start a betting pool that Skye doesn't survive the book? Sub-question: How awful will it be when she dies and I don't care?

    1. It *was* nice to have a break from worshiping Skye. I was getting very tired of it.

      And you will not be the only one who doesn't care. I can't wait for that girl to be gone from this story. At least then their incessant fawning can be chalked up to fond memories for someone no longer with them, and I won't have to see them swooning with awe at perfectly banal interactions.

    2. The scary part is that if they're all mesmerized by a kid who holds a camera, just imagine how incapable of functioning they'll be when she's not there to hold a camera anymore. Oh, the "Isn't she amazing!" stuff will expand exponentially when it becomes "Wasn't she amazing?" nostalgia.