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Monday, May 23, 2016

The Immortal Life of Henrietta Lacks and OK, Let's Talk About this BYU Thing

Hi guys. Kristin teases me that on Facebook I always balance a heavy, serious post with a dumb joke. Well I guess this blog has gotten that way, too. Last week's post was maybe pound for pound the most joke dense thing I've posted. This one is not. Eventually in this post I'm going to mention rape and the BYU thing. I'm not going in depth or anything, but if that's going to bring back bad memories, I don't mind you sitting this one out (let's be honest, I already have your click, so you've done your part).
I’ve tried to imagine how she’d feel knowing that her cells went up in the first space missions to see what would happen to human cells in zero gravity, or that they helped with some of the most important advances in medicine: the polio vaccine, chemotherapy, cloning, gene mapping, in vitro fertilization. I’m pretty sure that she—like most of us—would be shocked to hear that there are trillions more of her cells growing in laboratories now than there ever were in her body.
 -Rebecca Skloot, The Immortal Life of Henrietta Lacks
For the last 12 years of my life or so, I've lived in towns that were considered safe havens from "the world." These are predominately white, predominately Mormon, rural communities. For you non-LDS folks, The World is what we call everyone everywhere who doesn't go to our very specific church. Commonly you'll hear someone say, "The World will tell you that <blank>, but we know that instead it's <blank>."

I'm not really sure what The World means, since outside of our well-landscaped church houses there is essentially the entire breadth of human thinking. The World could mean everything from a fundamentalist Muslim to a wannabe Rastafarian white guy in his 30's surrounded by college freshman girls who think his dreads make him really deep. It could be a wall-street executive or a professional skydiver or a garbage man with a penchant for blasting Stravinsky from his truck who has two daughters, one who is really into soccer, the other who collects Pokemon cards.

At the base of all of this is that worldliness vs. godliness thing we hear about a lot in Christian congregations. Man cannot serve God and Mammon. Which, fine. I get that. But it's a problem when everything bad comes from outside and everything good comes from within. It's like the cool table in high school. Just by being at the table, you're cool, and if you're not, well sorry. But the cool table is just a table. It's not imbued with any special magical table properties. The people who sit at it might think they are especially great, but the entirety of the high school hierarchy is dependent on everyone being on board with there being varying levels of cool based on table location. It depends completely on insiders vs. outsiders, and there's a reason we all hated it.

I was not cool in high school. I mean, I ruled, but I was not popular. I mean, I had a lot of friends, but I didn't have the right friends. Zack Morris was supposed to be the coolest kid at Bayside, but I definitely had more friends than he did, and none of them were Screech. Anyway, I did have one friend who was a cheerleader. I don't remember how this happened, but it did. And one day she invited me to a party with her friends from another high school. So I'm at this party and I'm making jokes and people are laughing and it hits me: these people don't know that I'm not popular.

I'm the same guy. I'm wearing the same clothes. I'm still as way into Super Nintendo and rollerblading. And yet here I am getting the phone number of a girl who in a different circumstance would dismiss me faster than Bill Nye was on So You Think You Can Dance? My uncoolness, I learned, was not hard-wired into my DNA. It sounds so obvious now but it was empowering then to know that the all-important teen hierarchy was as fragile and tenuous as a DC Comics fan's grip on perspective.

Also, these guys weren't really all that special. I mean, they were fine. The house was really nice and maybe the girls wore more makeup, but other than that, I'd been in situations that felt very similar while moving around in various other peer groups. It was both encouraging to know that there wasn't something inherently wrong with me, and discouraging to find that this crowd I'd looked at with envy for so long was not particularly special.
Not being special is a scary thing when you've been taught your whole life that not only are you special, but you are the specialest. I think that's why ten years later, when I went back to visit family in my hometown, I saw all of the "popular" kids still hanging out at the bouncy house place with their kids. If they aren't all still in the same place, who will be around to tell them how great they are?

I'm being hard on these guys. After that post-high school time when we've all been dumped into a big pit and sorted out randomly by the great game of life (get yourself a blue peg, match it with a pink peg, and fill your car with little pegs. Unless you want to match your blue with a blue or your pink with a pink. Heck if you started out with a blue peg and want to switch it to pink I'm on board), I tend get along just fine with people who were in all groups in their high school. Obviously none of it was as big of a deal as it seemed at the time. The more we found out about The World outside, the less we cared about who was or wasn't inside.

Up until recently, this was my biggest problem with this Us Vs. The World mentality. I think there's lots of good stuff to learn from The World. And if we think we have a monopoly on an understanding of the human condition, and our only remaining job is to get everyone to see it that way, well I'll be honest. I have a big problem with that.

That was before I started volunteering. Now I'm starting to see backstage. Like the secret hallways you don't see in a hotel, there are back rooms in these little slices of heaven everyone thinks they live in, and you guys, they are messy. You watch the news and worry that the world outside your little community is falling apart but you're confident that it doesn't happen here. That it certainly couldn't happen to us.

That's why we are so despicable to victims of crimes. We can't imagine a world in which something bad can happen to us for no reason. It must be their fault, our reptile brains tell us, otherwise we can be a victim someday through no fault of our own and that's not the world we want to live in. We think that if we don't talk about it, and we pretend it doesn't happen, then we're safe. Like babies covering our eyes, we think it disappears if we don't look at it.

When we send our children to BYU, for example, we expect them to be safe. And not just safe from someone telling them that evolution is a thing. We want them to be physically safe. And when they aren't safe, we expect them to be treated fairly. We don't know a lot about things like federal funding. Or Title IX. And we think an honor code is like the honor rule at the small-town gas station, where you are trusted to pay for your gas even though the attendant is in the bathroom. I mean, it says "honor" right in the name. What we don't think is that your daughter could be assaulted and then reported and expelled for doing the same thing half her friends have done, except none of her friends had to report a rape.

So instead we say, "that can't happen at BYU." And then I guess it does. We then have to say, "well, it must have been something she did" or, "maybe this is an anomaly." And then many, many women come out and say, "It happened to me and they treated me like this too," and then I guess we say nothing because our mouths are so full of the sand we're hiding our heads in.

I know we want to be safe, you guys. We want to feel like we have some control over our lives. We want to believe that when someone you know smiles and says "fine" when you ask how they're doing, that they are actually doing fine. And this probably works for all of us until it's our turn. When we're not doing fine, and it's not one of the established ways in which we can be not fine that people are comfortable with handling. It becomes pretty rough watching everyone else convince themselves that you don't exist or that it's your fault or that you're overreacting.

Meet Henrietta Lacks:
Henrietta died in 1951 from a vicious case of cervical cancer, he told us. But before she died, a surgeon took samples of her tumor and put them in a petri dish. Scientists had been trying to keep human cells alive in culture for decades, but they all eventually died. Henrietta’s were different: they reproduced an entire generation every twenty-four hours, and they never stopped. They became the first immortal human cells ever grown in a laboratory.
Henrietta's cells, or HeLa for short, have been vitally important in virtually every scientific field involving human cells ever since. They've been credited with helping create the polio vaccine, the AIDS cure, and many more. They've been blown up in nuclear bombs, and sent to space. If we want to know how a human cell will react to some kind of stimuli (like measuring the destructive quality of Disturbed's new "Sound of Silence" cover), chances are they are using HeLa cells.

Yet they were taken without permission and her family hasn't seen a penny of the billions of dollars in revenue these cells have created. They can't even pay their medical bills.
“Hopkins say they gave them cells away,” Lawrence yelled, “but they made millions! It’s not fair! She’s the most important person in the world and her family living in poverty. If our mother so important to science, why can’t we get health insurance?”
In Rebecca Skloot's The Immortal Life of Henrietta Lacks, what starts out as an interesting science book about an amazing phenomenon becomes this intimate portrait of a family who had no idea the extent of their mother's contribution to the world. It's often beautiful. Skloot befriends Henrietta's daughter Deborah, a grandma now, but a survivor of violence and poverty. Deborah's life story is worth telling even without HeLa. Her family should have a good life because they are human beings, not just because of their famous lineage.

There's also the uncomfortable stuff. Remember the good old days? When between 1932 and 1974, 600 poor black men with syphilis were told that they were being treated for the disease but actually weren't because "scientists" wanted to know what it looked like if left unchecked?

Maybe you weren't paying attention when this happened:
And in the late nineties, two women sued Hopkins, claiming that its researchers had knowingly exposed their children to lead, and hadn’t promptly informed them when blood tests revealed that their children had elevated lead levels—even when one developed lead poisoning. The research was part of a study examining lead abatement methods, and all families involved were black. The researchers had treated several homes to varying degrees, then encouraged landlords to rent those homes to families with children so they could then monitor the children’s lead levels. 
"We didn't know it was happening" is a pretty easy excuse. It's also not a good one. As Donny Miller said, "In an age of information, ignorance is a choice."

Ok, you guys. This one is the worst. This one is so terrible.
I later learned that while Elsie was at Crownsville, scientists often conducted research on patients there without consent, including one study titled "Pneumoencephalographic and skull X-ray studies in 100 epileptics." Pneumoencephalography was a technique developed in 1919 for taking images of the brain, which floats in a sea of liquid. That fluid protects the brain from damage, but makes it very difficult to X-ray, since images taken through fluid are cloudy. Pneumoencephalography involved drilling holes into the skulls of research subjects, draining the fluid surrounding their brains, and pumping air or helium into the skull in place of the fluid to allow crisp X-rays of the brain through the skull. the side effects--crippling headaches, dizziness, seizures, vomiting--lasted until the body naturally refilled the skull with spinal fluid, which usually took two to three months. Because pneumoencephalography could cause permanent brain damage and paralysis, it was abandoned in the 1970s.

"There is no evidence that the scientists who did research on patients at Crownsville got consent from either the patients of their parents. Bases on the number of patients listed in the pneumoencephalography studyand the years it was conducted, Lurz told me later, it most likely involved every epileptic child in the hospital including Elsie. The same is likely true of at lest on other study called "The Use of Deep Temporal Leads in the Study of Psychomotor Epilepsy," which involved inserting metal probes into patients' brains.
The good old days are a myth; we know that because every generation talks about their own. If the 27-year-old singer of Twenty One Pilots can write an anthem to "the good old days" that resonates with frickin teenagers, what even is that? The good old days have nothing to do with what's going on in the world and everything to do with how we relate to it. The harder we cling to that ignorant innocence of youth, the greater the toll to society.

I firmly believe that we can be optimistic about the future and informed about the present's problems. I have to. We all have to. Rapes on college campuses are not new. One in five female college students experience some kind of sexual assault during their college career. But there are good people shining a bright light on these secrets, and because of that, it's getting harder and harder to sweep under the rug. It feels like the world is ending, but it's only because we're confronting pain. Like a toothache we've felt for months but put off and put off until it's unbearable, there's a fix here and we are going to fix it. It's going to hurt and it's going to be uncomfortable, but we'll be glad it's done.

I'm not going to say that racism is fixed. I've got thousands of words written at this point saying that I emphatically believe that we have a long way to go. But I don't think anyone would get away with the things American doctors have tried in the past. That's progress. But here's the trick. We need to help. Martin Luther King, Jr. said, "Human progress never rolls in on the wheels of inevitability; it comes through the tireless efforts of [people] willing to be co-workers with God."

Those people are out there. Either be one of them or get out of the way. Maybe there is an either/or dichotomy after all. Are we going to be, as King put it, "co-workers with God?" Or are we going to answer to him for our ignorance?

Wow, that was inspiring. Pretty good for a post that started with a Pokemon picture.