Sometimes People Suck

I love participating in WEGO Health’s twitter chats (follow @wegohealth on twitter to check it out). And each time, no matter what the topic that week is, the subject of losing friends seems to always come up. Chronic illness, whether physical or mental, tends to encroach on our social lives and that can bring out the worst in people. We don’t want to cancel plans or spend all of our time talking about our illness, but when we do, it would be nice to be met with understanding. Unfortunately, it can often break a friendship or even a romantic relationship.

Sometimes one too many cancellations causes a friend to give up on hanging out with you. Sometimes one too many suggestions to “think positively” or “try yoga” or “maybe if you just…” causes you to hit the unfriend button. Sometimes, after an awkward encounter with your illness, a friend or loved one “ghosts” you, falling off the face of the earth. Maybe they can’t deal with facing the idea of mortality when they see an incurable illness. Maybe their desire to “fix” you has made you feel unloved or unvalued, because as much as our illnesses don’t define us, they’re still a part of us. Maybe it was simply more baggage than they signed up for when they decided to be your friend/significant other.

It’s harsh. But it’s also true. Sometimes, people just suck.

A while back, I wrote a post on the story of Job, specifically looking at misguided attempts at “comforting” friends in hard times. Job is a bible story I think many people with chronic illness can relate to, and there’s verses that apply to losing friends as well.

Check out these excerpts from Job 19:

“He has alienated my family from me;

my acquaintances are completely estranged from me.

My relatives have gone away;

my closest friends have forgotten me…”

“My breath is offensive to my wife;

I am loathsome to my own family…”

“All my intimate friends detest me;

those I love have turned against me.”

When we go through something really tough, like an illness, sometimes it feels like everyone abandons you right at the moment you need them the most. Loved ones may be visibly drained by your experience, making you feel like a burden. When you stay home ill, it’s easy to feel forgotten. Illness is alienating. Healthy friends don’t know how you feel, and maybe you don’t know how they feel, either.

A more modern quotation that captures this can be found in the song “People Just Ain’t No Good” by Nick Cave.

“It ain’t that in their hearts they’re bad.
They can comfort you, some even try.
They nurse you when you’re ill of health.
They bury you when you go and die.

It ain’t that in their hearts they’re bad.
They’d stick by you if they could.
Aw but that’s just bull, baby.
People just ain’t no good.”

***

I know that it’s not everyone. I often say that, especially when it comes to dating, illness can be a good thing because it weeds out the insincere. At the end of the day, you’re left with people of heartier stock. True friends, true love. But when you care about the ones you lose, you don’t want to hear that.
Sometimes, people just suck.
Listen to some moody music, wallow in it, get mad, get sad, but then remember the true ones. Find them, because they’re out there.
But if you’re reading an article called People Suck, you’re not here for that, so yeah, people do suck. Most people.
But you don’t suck.
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Doing What You Can Even When It Seems Too Small

There’s all kinds of things wrong with the world, and everyone has some issue that they get fired up about. Recently, the Women’s March made waves around the world.

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And lots of women were out there marching for lots of different issues. Pro-choice, Pro-life, women demanding equal pay, women demanding a safer world, women standing with Standing Rock, women who won’t tolerate being talked about they way certain Presidents talk… almost any issue you can think of.

BEN GARVER — THE BERKSHIRE EAGLE  A sign carried in the Washington DC Women's March was delivered by Paul Johansen to the Shire  City Sanctuary for Febuary exhibit of art from the women's marches.

This was a march for like…everything. It seemed like every issue that people get fired up about was represented, even both sides of arguments showed up. Pro-lifers were marching right along with pro-choicers. Yet there were still some who just couldn’t find an issue to cheer for, so they protested protesting!

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But all of these people all over the world with all these views have something in common. They all went through a series of universally human steps:

  1. They felt a fire in their belly about something.
  2. They made up their mind to take action towards real change.
  3. They took whatever action they could think of.

Take me, for instance. I was diagnosed with endometriosis as a high school senior, but it wasn’t until my senior year of college that I started feeling the fire in my belly for health activism. At the time, I didn’t know a word for it, but it was health activism. I saw the discrimination of myself and others who don’t “look” sick, and were written off as liars, party girls, drug addicts, or attention-seekers.

Once the fire in my belly got hot enough, I reached step two: I NEED TO DO SOMETHING.

I cannot accept the way things are. I know that people can learn. I want to teach them. I want them to learn the science of these illnesses and health in general! Health education is so, so lacking in America. I can tell you exactly how a plant uses water and sunlight to create energy and grow and what makes a plant healthy or unhealthy, but I graduated without even knowing what all my lady parts are even for and how diet can drastically affect how your body functions. As Trump would say, “SAD!”

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But here’s the kicker. Everyone everywhere has gone through steps one and two, but so many people give up before step three. Why? It’s not because the fire has gone out. It’s because any action we can think to take often seems too small. I’m just one person. I’m not a politician, I can’t control laws. I’m not an educator, I can’t change what people learn in school. I’m not a doctor, I can’t cure people. I’m just one sick person. There’s nothing I can do.

Either that, or we reject the ideas we do have. I could start a fundraiser, but it would annoy my friends and family. I could protest, but what if I’m alone? I could donate money, but where does it go and what does it do? I could write things on the internet, but literally everyone does that and it would be a drop in the ocean.

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I decided to go for it. What could I think to do? Well, I was a creative writing major. I could write something – what? A blog. Because it’s free and (in theory) the whole world could read it. Could. Probably wouldn’t, but it was possible. And what about my school? The discrimination that put a fire in my belly all happened at my university. I needed those students, specifically, to read what I had to say.

How? I decided to make posters. Just black and white, 8 1/2 by 11, self-printed posters.

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Aww look at my old url. Anyway, I posted these all over campus, occasionally getting scolded, and feeling quite sure no one would ever read them or my blog but whatever. Like I said, I had to do something.

I got an email from an anonymous person thanking me for bringing this issue forward, but it was one out of the dozen or so emails I got telling me to please stop so it seemed like not a lot. But then a really crazy thing happened – a girl stopped me on campus and said “I recognize you… you’re on those posters!”

We ended up having a seat on a bench and talking for upwards of thirty minutes. She had a bone marrow disease (I wish I could remember exactly what) and had struggled so much with faculty and other students not believing how sick she was. She was vibrant and full of life and of course, didn’t look sick. She told me that seeing the posters made her feel less alone. And she thanked me.

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So this one little thing that I was sure would make no difference… made a difference. This dumb thing that was the only thing I could think to do actually did something. What I thought would be too small to notice was noticed.

I did what I could and it made a small difference.

I did what I could and it was worth doing.

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Nowadays, I’m still pretty sure everything I do for this fire in my belly is too small. Womens’ healthcare costs remain high (LORDT that is always on my mind) and we have some lawmakers now making things harder. People still post hateful notes on cars parked in the handicapped spot if they’re driven by a healthy-looking individual. This blog has won some awards, but I get about 50 views a day, post super irregularly, and still get a lot of hits from people looking for info on David Bowie.

Most days, this feels too small to be worth doing.

But occasionally I get someone thanking me and telling me how much it’s meant. And I have to think that for every person who says something, there must be more people who don’t speak up, but who glean something from this. And hey, I even had the head of the UNT disability office call me to chat and make sure they were doing all they could for their students.

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So just know that even if it seems too small, do it. Do it for the fire in your belly, do it for yourself, and do it for the world. Think of how much better a place the world would be if everyone did what they could!

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Job 16: On Comforting Friends in Hard Times

I try to read the Bible every night (though this has really fallen through since Baby arrived) ((same with posting here on a regular basis)) (((you might have noticed))). And something in the book of Job really stood out to me.

If you have a chronic illness, physical or mental, you’ve probably had well-meaning friends try to offer advice on how to get better. And you’ve probably heard it at just the wrong moment or in just the wrong way, and felt hurt or annoyed. You, after all, live with this every day. Don’t they know you’ve done research and tried lots of things? Don’t they know you’re trying to get better? Why can’t they just listen and comfort you in these hard times?

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Job did have a sort of illness – he was covered in painful skin sores. But that’s really the least of his many problems. See, Job was a good guy. But Satan argued to God that Job was only good and faithful because he had a comfortable life. So God allowed Satan to rough Job up a bit to prove he would remain faithful. Job lost his children, all his worldly possessions, and his health in one day. And he wasn’t all “God giveth and taketh away” about it either – he was sad, and he was pissed! Most of the book of Job is him cursing the day he was born, yelling at God, and yelling at his friends.

And that brings us back around to where I started – well-meaning friends. What did Job’s friends have to say?

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Well, they tried to figure out what Job did to deserve this. I mean he must have done something bad, right? Clearly this was a punishment. Victim-blaming is as old as the Old Testament. Have you had anyone suggest that you somehow brought your chronic illness on yourself?

They also hypothesize that Job’s dead children probably brought their deaths upon themselves, and say that Job’s lucky his punishment wasn’t worse because he probably deserved something much harsher. Thanks guys! Very helpful.

So here’s the verse that stood out to me:

“I also could speak like you,
    if you were in my place;
I could make fine speeches against you
    and shake my head at you.
But my mouth would encourage you;
    comfort from my lips would bring you relief.

Yet if I speak, my pain is not relieved;
    and if I refrain, it does not go away.

Surely, God, you have worn me out.”

-Job 16:4-7

I’m sure we’ve all wondered what we would say to someone with our illness if we were healthy and had never experienced it. We all hope we’d refrain from offering that well-meaning advice about what they should or should not have done to get themselves into that situation. We hope we wouldn’t “make fine speeches” or “shake our heads.” We hope we would encourage them and comfort them. But there’s no way to know.

And I’m sure there have been many times when you thought “if I speak, my pain is not relieved, and if I refrain, it does not go away.” Blogging feels that way sometimes. Here, I try to offer comfort, encouragement, and catharsis. But does it make me better? Does it matter at all?

You Make Me Tired

“God, you have worn me out!”

Well, back to Job’s story. After arguing with his pals for a while, yet another well-meaning friend arrives with even more tsk tsks and unhelpful advice. And Job is wondering out loud about life, the universe, and everything between occasional outbursts and his freaking annoying friends. But he never says “God, I hate you!” or “There must not be a God!” or anything accusatory. He cries out to God about how hurt he is, how angry, and how sad. But he passes Satan’s test.

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And while he’s tearing his clothes and crying and yelling and his friends are still trying to explain how he kind of deserves all this, God literally parts the sky and goes “SHUT UP, YOU GUYS ARE THE ACTUAL WORST.” Then he takes Job aside and asks him some rhetorical questions, using them like a kind father to explain how little Job understands about life, the universe, and everything. Job agrees, and again, never says anything like “well if I were God…” or “I don’t think the universe should be this way!” He simply acknowledges that he is small and knows little.

The God goes back to Job’s well-meaning friends and is about to really let them have it, but Job jumps in and says hey, they’re also dumb little humans. And he can’t hold that against them, and he asks God not to hold it against them either.

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So here’s two things to take from this:

If you have well-meaning friends who have tried to tell you you’re not working hard enough to get better, or that you wouldn’t be sick if you hadn’t x, y, or z, remember that they’re just dumb little humans. Think of life, the universe, and everything that you don’t understand, and empathize with their stupidity and ignorance.

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And also remember that God empathizes with you. Any moment he might be ready to open the sky and really tell those well-meaning people off. He feels your feels.

And if you’re not of the Christian disposition, I hope you take something from this story as well. You’re not alone. These well-meaners are as old as the mountains, and generations upon generations have had to deal with this crap. You don’t understand everything either, and all us humans just have to muddle through life, the universe, and everything together.

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I’m going to end this with the benediction my church ends each service with, because I think it’s a beautiful blessing to send someone off with.

“May the Lord bless you and keep you, the Lord make his face to shine upon you and be gracious unto you. May the Lord look upon you with His favor, and give you His peace.”

Linus Without His Blanket is All Of Us

Few things in this world capture the struggle of life with chronic illness as well as the dynamic of Linus Van Pelt and his blanket. Most days, Linus is just like the rest of the gang – he just happens to need a blanket at all times.

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And when he has to be without his blanket, he kind of falls apart. Occasionally he can go without it (“Look! I don’t need my blanket anymore! I’ve gone four whole minutes without it!”) but for the most part Linus without his blanket is a much different boy.

And Linus without his blanket so captures me without medication, or me in a flare, or me without access to a doctor. Sometimes I calmly mope by the dryer like Linus up there, but more often I’m like Linus in the special “A Boy Called Charlie Brown.” See, Charlie Brown is going to represent his school in the regional spelling bee, and Linus gives him his blanket to take as a “good luck” charm.

Of course, Charlie Brown hasn’t been gone long before Linus needs to go and get his blanket back. CLICK HERE to watch starting at 53:47, or check out the embedded video if you want to watch the entire special.

Linus is in a state similar to one I am in when I’m in a flare. Let’s see how his sister, Lucy, reacts.

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Linus explains his predicament and ends with “now I keep passing out!” Been there, buddy. And Lucy, after much eye-rolling, suggests he step outside for some fresh air. Points for listening and even suggesting something that could be moderately helpful, but it’s pretty obvious she’s more annoyed than concerned. Frankly, I’ve had swirls and dots around my head and had my family act as though I was a child without a security blanket – in other words, someone who is overreacting to a stupid problem.

But still, Linus does try going outside. But it isn’t enough. So he enlists help from Snoopy. He says he needs to find Charlie Brown and get his blanket back! And Snoopy agrees to accompany him. With much eye-rolling but at least he’s kinder than Lucy was. Good on ya, Snoopy. Way to help a friend in need!

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Also, this is the most accurate representation of my face on the way to doctor or medicine when panic has set in. Doesn’t matter if I’m in physical pain or having a mental anxiety attack. This is me:

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And my healthy friend is just lookin out the window like “Is that a pokestop?” (YES I’M ON POKEMON GO- we can gush about how amazing it is later).

Meanwhile, Charlie Brown isn’t feeling so great either. He’s been studying spelling all night! He even exclaims that this is too much! He needs to put his health first and take a break! Which of course he doesn’t, because the spelling bee is too important (as an apparition of an angry Lucy reminds him). Surely he will be able to relate to Linus and sympathize…

Except no! Because just like every healthy person who thinks they “get” chronic illness, he might think that feeling sick or stressed from overworking himself gives him insight. But it doesn’t. Do you know what the main difference is between chronic illness and acute illness? Watch this– CHARLIE BROWN JUMPS RIGHT UP WHEN HE SEES THEM. When he sees his friends he’s suddenly lit with sprightly enthusiasm! Huzzah for you and all your spoons Charlie Brown!

Meanwhile poor Linus passes out waiting while Charlie Brown and Snoopy exchange pleasantries.

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This scene is actually comedic genius. Snoopy runs to the bathroom to get a glass of water – which he comes back to drink himself while he watches Linus come to and explain that he needs his blanket back. Damnit Snoopy.

And after all this, Charlie Brown really doesn’t know what happened to the blanket. He’s been so busy with his own problems you see. The language here is great. Charlie Brown calmly says “Gee I’m sorry Linus” with almost no emotion while Linus is panting and yelling “FORGOT?!?!??! FORGOT ABOUT MY BLANKET?!?!?” Because it’s his entire freaking world.

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Screw you, Charlie Brown. Maybe it’s in the lobby? If not, it’s between here and the library?! I’M LITERALLY DYING. I DON’T HAVE TIME FOR YOUR MAYBES.

Now Linus is getting mad. Because everyone around him is horrible so he has every right to be. “He THINKS it’s at the Library!” yup, he even gets a little Gollumy. Nasty hobbitses… they lost the precious…

Then he snaps. He turns around and yells “CHARLIE BROWN I OUGHTTA KICK YOU.” But then he passes out because flares tend to keep you from fulfilling promises of violence.

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DAMNIT SNOOPY.

Then Charlie Brown makes him leave, noting aging how IMPORTANT it is that he keep studying. Yeah no problem buddy, it’s just MY LIFE. But it’s no SPELLING BEE so I understand! Asshat.

So now Linus has to go walk all over town looking for the light of his life that his “best friend” just “forgot about.” And Snoopy tags along, which probably makes him feel good about himself even though he’s not actually helping AT ALL.

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And WTF is this Snoopy? You’re going to wander off and have an ENTIRE FREAKING ICE SKATING MONTAGE while I SLOWLY DIE ALONE? It’s not even just ice skating, it turns into an entire imaginary hockey game. DAMNIT SNOOPY THIS IS IMPORTANT.

And then the blanket isn’t even at the library. All that for nothing! Linus snaps. All hope is lost and Snoopy’s down there making faces at statues, that’s IT. YOU’VE BEEN NO HELP AT ALL, SNOOPY!

But it doesn’t make him feel any better. Snapping at people when you’re suffering rarely does. But it made me, the audience, feel better.

Damnit Snoopy.

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“THE WORLD IS ENDING AND HE CAN’T EVEN HELP FIND A BLANKET.”

I feel you Linus. I feel you.

And after vowing to never forgive Charlie Brown for being a self-absorbed idiot who looses blankets, he returns to find IT WAS IN CHARLIE BROWN’S STUPID ROOM THE WHOLE TIME. AND HE’S USING IT TO SHINE HIS SHOES FOR HIS F%#!$)*@ SPELLING BEE.

DAMNIT CHARLIE BROWN.

YOU’RE THE LITERAL WORST.

But, much like when the cold find warmth or the hangry get fed, once Linus is reunited with his blanket and stabilized, all is forgiven. He even goes on to support Charlie Brown as he faces the spelling bee.

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You da real MVP Linus.

Madeline and Childlike Pride Amid Illness

In an old house in Paris that’s covered with vines

lived twelve little girls in two straight lines.

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When I think of Madeline,  I think of my sister. All three of us loved the Madeline books, cartoons, and dolls, but most of our Madeline books and dolls belonged officially to my middle sister. I was 7 years old during her Madeline phase. She was 5. And she also happened to be in the hospital. She had a brain tumor, two surgeries, and spent over a year in the children’s hospital. She’s now a happy, healthy adult.

Being that I was 7, my memories of that time are trivial, and as I’ve grown older, I’ve gained more and more insight into the gravity of the things that happened then. Being diagnosed with a chronic pain condition as an adult has also given some of those memories new meaning – like Madeline. Because now I feel more deeply connected to Madeline, and I wonder if the people giving my sister Madeline dolls and books did so with these same thoughts in mind.

Madeline is, on the surface, a series of stories about an impish girl who, as the stand-out scrappy runt of an orphanage run by a fretting nun, gets into heartwarming shinanigans in gay old Paris. But there’s a bit more there.

The Madeline book that I remember most vividly and that, I believe, is the most famous, is one in which Madeline has appendicitis. Miss Clavel, the nun, wakes in the night because “something is not right” and instead of finding Madeline making her usual trouble she finds her in bed with a burning fever. Madeline is rushed to the ER and undergoes emergency surgery.

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Everything turns out alright. And Madeline is thrilled by the whole thing. The iconic moment from that story is when she proudly shows off her scar.

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And that stuck with me because that’s exactly what my experience with my sister was. Her room was full of the most wonderful toys and snacks and very interesting hospital things, and across her head was a scar, just like a headband would be across her head. I honestly don’t know how she felt about it– if she was self-conscious or if perhaps Madeline helped her feel proud of it. I thought it was cool. I didn’t have very interesting thoughts. I was told repeatedly not to touch it so I spent most of my time thinking about touching it.

Sister of the year right here.

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Anyway.

So that’s probably why Madeline books are a good present for kids in the hospital. I don’t know. But what’s really interesting to me now is the Madeline dolls my sister had.

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Pretty run-of-the-mill dolls. Some stood on the shelf, others were floppy rag-dolls for cuddling. But they all had something in common.

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You could be sure that whether she was a doll, in a book, or on the screen, she had her scar. Why? Because it’s a part of her character. You can’t have Madeline without her scar. You can’t have Madeline without her story.

And dolls get such a bad rep for promoting unrealistic standards of beauty. And now we have these companies working hard to make more “realistic” dolls to teach better values. But twenty-odd years ago, Madeline was waaaay ahead of you.

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Every time we saw a Madeline doll, we pulled up her dress to point out her scar. Was that an intentional outcome that the adults in our lives hoped for when they gave us Madeline? Maybe. Probably. I don’t know.

But now I’m all grown up, and I’ve got three scars on my tummy. And sometimes when I look at them, I think of Madeline.

When we’re kids and we get hurt or sick, we’re so freaking excited to tell people about it. We show off our band-aids, we tell the exciting story, we make you sign our cast, we brag about getting shots or taking medicine. Why? Probably because grown-ups are constantly praising us through any medical adventure. The doctor gives you stickers and lollipops for a reason. Your parents coo to you that you’re so brave and so good. A team of doctors and nurses work tirelessly over you while your main job is to sit still, and you’re the one who gets told “good job!”

Illness is universal. Everyone winds up on a medical adventure at some point. But the older you get, the more autonomous you want to be. Illness is like crying: it’s private. But humans evolved to cry when they need help, and keeping it behind closed doors is completely counter-intuitive. Same with illness. Illness should be something people come together over. You need praise and encouragement and pride to get through it.

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I should be wearing my bikini and pointing at my stomach proudly, saying “look at me! Look what I did! I was very brave and good! You’ll never believe what happened!” When you’re drugged up at the hospital, you get that child-like pride back. You never really see shy drugged-up people do you? Without inhibitions, most people recovering from a severe injury or illness act like it’s an exciting story to share. And it is!

Why do you think Madeline is so popular?

If, for any reason, there’s ever dolls made of me, I hope they all have scars. Madeline is doing a lot of good out there. I never felt like dolls were shaping my view of beauty and self worth… but 7-year-old me would be quick to tell you that her Madeline doll has a scar, and it’s really really cool.

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And that had to be good for my sister.

And it has to be good for me now.

Thanks Madeline.