Seven Quick Takes--Sinuses & Stats

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Hey everyone! Welcome to fall. (AKA, the return of hockey season!)

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On the blog this past week, I wrote a piece that I think is pretty important, and if you haven’t read it, here it is: Lies, Damn Lies, and Statistics.

If you’ve been a reader here for any length of time, you know that I take the idea that “everyone has worth” seriously. This is because I have been frequently told that because my genetic code is messed up, my life is “too hard”.

Life is hard for everyone. Everyone will suffer. Everyone will die. I wrote a book about this, for Pete’s sake.

Yet some people think we can control suffering. We can control unhappiness.

We can’t.

So whenever the ugly head of eugenics rears its face, I try to play whack-a-mole with it and beat it down into the dust where it belongs. This piece is my latest Whack-A-Mole entry, but with the caveat of a really, really grim statistics at the beginning.

95% of children with CF are aborted in utero.

Anyway, read the piece to get all the sad facts and see exactly how I feel about this. :)

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Happy news, yes? :) How about some Patty?

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Also in HUGE news, I’m an auntie to a little girl! I have a niece coming! Her name is Madeleine Grace and she will arrive in the world in January and I am so excitedddd. (She is my sister and her husband’s little girl)

This is the first grandchild for my parents, so obviously we are all really excited.

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I’m having sinus surgery in December! My ENT had a CT of my sinuses taken and apparently there is lots of “mucus and junk” hanging out in my ethmoid sinuses (which are really cool, btw), so he’s going to go in, get the crap out, and then flush in lots of antibiotic stuff to keep things happy!

This is all part of CF. The mucus that’s really think and causes so many issues in my lungs also causes issues in other places, mostly the sinuses, the pancreas, and the reproductive tract (most men with CF are sterile—not sure if it’s all, but most are.) For me, my transplant took care of about 98% of my CF issues—but not my sinuses. Fortunately I have really good sinuses (I had a friend who needed sinus surgery every nine months) but it’s been about 10 years since I had a clean out and that means I’m overdue. So, December! Surgery! Yay!

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Dad and I are reading the Cormorant Strike series and we love them. I just started watching the TV series. Have you read these? I’m not super into mysteries/crime, but I love these. And I mean it helps that they’re ghost written—it’s actually JK Rowling who write them. :) So as a massive Harry fan, that helps. (I didn’t like her first adult novel, btw. So that’s why I was slow to pick these up. But these are good.)

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Knitting? I finished the Beatrice Shawl, and I’ve got four colors for a mystery KAL.

Beatrice shawl on the mats

The KAL is a 6 week thing, and I have five of the clues so far, so I joined late, but I’m really chomping at the bit to get started. I just needed some more size 4 needles, so once those arrive I can dive in!

Lies, Damn Lies, and Statistics

Diane and I as pre-schoolers, before my CF diagnosis. (I’m the blonde.)

I’ve never really liked statistics.

First off, they used to not work in my favor. 4% of the CF world gets something? That means I’m getting it. Get a bug that only one other person in the world has had? SURE WHY NOT (says Emily’s body).

Also, I’m pretty sure that my stats professor pity passed me, because I was a senior and needed a math credit to graduate (although I can figure out the number of possible combinations of license plates and combo meals, so….not totally wasted?).

Post-transplant, I tend to make statistics in a good direction—being 16 years post-transplant, for one. That’s a good way to end up a statistic.

However. The following, from an article I read last week, is not a good statistic.

Ninety-five percent of unborn children found to have CF are murdered.

(I will put the link to the article at the bottom of this post, if you want to read it for yourself and check out those links.)

I was first told that I shouldn’t exist when I was 15—a story I tell in my book. But since then, we’ve made amazing strides in CF research. There’s Trikafta and Kalydeco, for starters, which are huge breakthroughs in gene therapy that don’t just help CF—this technology helps people with dementia, as well as other genetic diseases. People with CF are living into their 40s and 50s, instead of their 30s. This is all huge.

But people don’t see that. They see problems. They see suffering. They see imperfection. They see a life that isn’t worth it. A life like mine is not worth it.

This is what I wrote on instagram about this:

I used to be pretty private about having CF. Not because I was ashamed of it, but because I didn’t want people making judgements about my capabilities based on that. I didn’t want their pity and I didn’t want their fear. 

But after my transplant, I became much more vocal, because I had to be. Because people “like me”—people with messed up chromosomes—are seen, more and more, as “defective.” As “unwanted”. As “wrongfully born.” 

This hit home yesterday, the 28th anniversary of my CF diagnosis. I read the statistic you see up there—that 95% of children diagnosed with CF in utero are aborted. 

Ninety-five percent of people like me are killed on a regular basis. 

I am a survivor, in more ways than one. 

I used to think that I was supposed to be a contemplative nun. In fact, this [9/15] is the anniversary of being told that I wasn’t going to be going on to the next discernment phase with a monastery. 

Now I know differently. Now I know that I am supposed to be in the world, telling my story, so that people can see that an imperfect, messed up, “defective” body can still give you a life that is joyful and worth living. 

I can become a saint with a messed up chromosome 7. 

I am here to show that life is worthwhile, but also, to deeply pray for those who do not see this. People who think that I am disposable—that children like me are disposable. 

I want to soften their hearts. 

I do want to soften their hearts. But I also want to bring this to light.

There are at least 2,000 CF mutations on chromosome 7. They can’t all be checked for in an amniocentesis. So there are children with CF who are bon, and then we have wrongful birth suits.

The argument behind these suits is that these children shouldn’t have been born, because, they will suffer. They will die.

NEWS FLASH: all of us will suffer. All of us will die. I understand wanting to protect your child. I understand feeling that this is your fault. (Although I’ve never thought it was my parents’ fault. It is what it is. The same genes that gave me my voice, my beautiful eyes, my mind, and sense of humor also gave me CF. It’s the shakes. It’s how it works.)

I cannot imagine how this child will feel, when he is old enough to search the internet, and see that his mother writes about how she doesn’t think that his life is worth living because he suffers.

What it comes down to, really, is this. That we think that suffering is somethign we shouldn’t have to do.

I was talking to someone on twitter about this, and his argument was that we should be able to “select” embryos that don’t have CF or CP or Down Syndrome or whatever, so that we can increase health and happiness. It was sort of like talking to Dr. Jekyll before he consumed his formula.

Health and happiness do not always go together. I’m definitely happier than some healthy people I know. In fact, the strange situation is that having CF has made me more sensitive to happiness, to good moments, to things that deserve to be celebrated. I didn’t get upset over not being class valedictorian (as I remember one girl in my class being). I didn’t get upset about a B-. I had perspective—and still have a perspective—that a lot of people lack, what my dad calls the “macro” view of life. That doesn’t mean that I still don’t get upset about micro (ie, small) things. I do. But it’s not something that’s going to destroy my life or make me question the existence of God, because I’ve learned too many things along the way and seen too much of God’s providence to dismiss that.

But all some people see is the bad side. The treatments. The hospitalizations, the IV courses, the PICC lines. I know that world. I’ve experienced it brutally, and I continue to experience it.

But to wish I didn’t have CF would be to wish I wasn’t me. It would be to wish myself away.

So many people see only what is wrong. They don’t see what is right. Statistics will never tell you that.

Article: “The Moral Panic About Eugenics Poses a Threat to Abortion Rights”.

What I'm learning through the Bible In A Year Podcast

OK so it’s confession time.

I am really, really bad about reading the Bible.

Given that I love to read, this is even worse, I think. I love to read—and I neglect the Bible?

(That’s not precisely true. I love the New Testament. I love certain parts of the old, especially Isaiah, Esther, the Psalms, and the Song of Songs, and Lamentations during Lent. And when I say the Office, I am getting quite a bit of Scripture in!)

Every time I’ve tried to read the Bible “straight through”, I’d get bogged down in Leviticus and that would be it. Ugh.

So this year, my spiritual director said, “You need to do the Bible in A Year Podcast.”

And, being obedient, I did. I started in May.

The first thing about this is—it does cover the entire Bible in a year. But each day doesn’t take terribly long. Each podcast is about a half hour or so (sometimes less than that!). You can listen in your car! The podcast will also remain up permanently, so even if you start today, you’ll still have access to the podcast next year!

Second, Fr. Mike explains things. (I’ll get to my two big revelations in a second). This is so helpful. Everything is explained through a Catholic lens, which can be hard to find! There are a lot of “study bibles”, but they can be….yeah. Dense. Let’s just put it that way. He also has special episodes with Jeff Cavins, a bible scholar, before every new reading “period”. (There are 15 periods that make up the plan.)

The podcast uses the Great Adventure Catholic Bible (published by Ascension), but if you want to use your own bible, that’s cool too. I use the Great Adventure Bible tabs to mark up my bibles and I love them.

I’m on Day 126 now, so I’m more than 1/3 of the way through the Bible, which is amazing to me. So far I’ve read: Genesis, Exodus, Leviticus, Numbers, Deuteronomy, Joshua, Judges, Ruth, 1 Samuel, and the book of Job, as well as parts of Psalms and the book of Proverbs (those last two are sprinkled throughout the entire year) . Right now I’m in 2 Samuel and 1 Chronicles (the “Royal kingdom” period in the plan.)

Here are the two biggest takeaways I’ve had so far:

1) God cares about worship—and particularly about the Sabbath

Leviticus is actually all about the worship of God (as is a lot of Numbers). It’s not just names and rules. It’s God telling his people how he wants to be worshipped. He’s taking these people who don’t know him and forming them into his people. And that means they need to know what God loves and what he hates, and how to worship him, because they couldn’t in Egypt!

A lot of how we worship today is reflected in this readings! The Eucharist is even prefigured, when talking about the bread of the presence! Moses anoints Aaron, the same way priests are anointed today during the Sacrament of Holy Orders. Altars are also anointed when new churches are constructed—same as in the book of Leviticus. The sanctuary lamp that you see in every Catholic Church? Leviticus 24:2!

He also cares about how the Church is constructed. God actually cares about these little things! (Which was sort of amazing to me, that he cared about the types of wood!)

God also really cares about the Sabbath. Hoooo boy does he care about it. He says it over and over again “you shall keep my sabbaths” (Lev. 25:3, Lev. 26:2, for example). He promises blessings to those who keep the sabbath. (Lev 26:6). He doesn’t just mention it once on Mt. Sinai. He says it over and over and over again. Keep the sabbath. It’s important to him!

You shall keep my sabbaths and reverence my sanctuary: I am the LORD.

—Leviticus 26:2

Now, the Christian sabbath is different from the Jewish sabbath—but it’s still important.

How are we keeping the sabbath day holy? Are we resting from work—including things like laundry and dishes? (I mean sometimes it needs done—but if it can wait until Monday, is it?) Are we enjoying leisure and relaxation? Are we spending time with God in church, and in additional prayer?

God is serious about this and I didn’t realize how much so until I read these chapters.

(If you want to read more about this, I suggest: Leisure: The Basis of Culture and Souls at Rest)

2) God is serious about tithing

Tithing is another thing God is serious about. He mentions it in Leviticus with offerings, especially the offerings of first fruits (Lev. 23: 9-13), and the priest’s portion was the people’s tithed offerings (Numbers 18).

Tithing is something that we do talk about, but do we talk about it enough? It’s one of the precepts of the church that we are to “provide for the needs of the church.”

But it’s also clearly biblical, and it’s also in the New Testament, where Jesus tells us to give our extra cloak to a person who doesn’t have one. The Epistle of James tells us that, and we heard it this past week at Mass:

If a brother or sister is poorly clothed and lacks in daily food, and one of you says to them, “Go in peace, be warmed and filled,” without giving them the things needed for the body, what does it profit? So faith by itself, if it has no works, is dead.

—James 2:15-17

Generally we talk about giving 10% of our income. I’ve seen some Catholics talk about giving 5% to the parish, and 5% to other good charities, like pro-life organizations. (I think St. Pope John Paul II once mentioned dividing it up that way, but I’m not entirely sure.)

As you all know, I do not have a lot of money. But after reading so much about tithing, I figured out what 10% of my income would be, and I subtracted the number I already tithe. The final number is the amount I need to up my tithing to hit 10%. I am slowly working towards that goal. It’ll take time, but that’s OK.

Some people aren’t in a position to give much, and Jesus talks about that when he talks about the widow’s mite:

He looked up and saw rich people putting their gifts into the treasury; he also saw a poor widow put in two small copper coins. He said, “Truly I tell you, this poor widow has put in more than all of them; for all of them have contributed out of their abundance, but she out of her poverty has put in all she had to live on.”

—Luke 21: 1-4

We really do need to take this seriously. We have to give to the poor and the those who need our help. You might want to support pro-life charities, or adopt a child from an organization like World Vision. You might want to give to a charity that helps provide clean water around the world. Whatever it is that touches your heart, even if we only have a little—giving a little is still giving.

These are the two things that have really impressed themselves strongly upon my heart. As I continue through the next 2/3 of the Bible, I hope I’ll find other things that I want to share with you!

I get knocked down, but I get up again!

“At the Millinery Shop”, Degas

If you weren’t a 90s kid/teen, you might not know this song:

(Yes, I just dated myself. And no, I’ve never seen the video, so I hope it’s not questionable. :-P)

(Also for some reason “Danny Boy” is involved. Never was sure why.)

Anyway, that’s a lot of what my life is like, and my dad said this to me yesterday.

“It’s like you start to exercise and have plans and then….you get sick! And you can’t do those things!”

“Welcome to my life,” I said.

And it’s true. It’s sort of frustrating, but it happens a lot. It happens in the hospital when I was 19 and had to learn how to…..sit up again. Or go to the bathroom unassisted. The body is durable, but it’s also surprisingly forgetful. “Huh? We used to ….sit up? All day? Nah.”

So that’s what’s going on right now. The Cipro caused my Achilles’ tendons, especially on my right foot, to get unhappy. Not so unhappy that something actually snapped or swelled, but enough that I went, “OK, we can’t use that foot.” I spent Sunday not putting weight on it, and most of yesterday was the same. It’s feeling OK today. I’m waiting on word from clinic to see if I should stop the Cipro early or if they want me to finish it and damn the torpedoes.

But….that means that my house was sort of a wreck. To put it kindly. Because I was sick most of the month of August, and then I got on the Cipro, which limited my movement, and even with limited movement, I still ended up with issues.

Fortunately my parents are a big help here and will help me dig out from under the avalanche of…stuff. But the other thing means that since I can’t stand for too long, I can’t really cook, which is detrimental both to health and to me, because I like to cook. I have lots of recipes I want to try out. But it’s hard because I can’t stand over something and stir or chop or slice. There is one recipe I have that I love and is really non labor intensive, so I’m making that tonight for dinner, but….I like to cook!

I am very thankful for my parents’ help (and my brother’s, when needed.). It can be hard to feel like a bump on a log and I hate having people clean up after me because I feel like the world’s biggest slacker. But…allowing people to help you in a part of growing in humility. So I’m growing, I guess.

The hope is that I’ve kicked this infection and I can resume regularly scheduled programming soon. I see my ENT next week and I’m going to see if we can do some antibiotic rinse in my sinuses to keep them happier long term, because I’ve been getting a lot of sinus things lately and I don’t really want that to continue (especially if my body can’t tolerate the antibiotics anymore….fingers crossed we can still do them.). So we will investigate some long-term solutions, if there are any.

All this to say that, yes, in life we have setbacks, sometimes huge setbacks, an it can seem like we’re not going to recover from them. But most of the time, we get knocked down and we get up again. :)

Seven Quick Takes Labor Day Edition

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Hi! Happy Long Weekend, US readers! :)

If you’re a subscriber, this post just landed in your inbox. If you’re not (and why not may I ask?), then: Ave Maria Press is having a Labor Day Sale! 10% off everything with the code LABORDAY21 at checkout!

So be sure to get your copy of Living Memento Mori (for yourself or friends!).

In the post I also talk about Ave’s new note taking bible. It’s great! And it’s also included in the sale! So you can check out my notes on that.

The sale runs through 9/6 (Monday). Hop to it!

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OK so in the last quick takes I said I was feeling better. Hahah I LIED. By the 26th I felt so crappy that I didn’t have the energy to make coffee. So I called clinic (called=emailed) and got a script for Cipro which is making me feel better.

However, Cipro is a strong (as in, it’s used for plague and anthrax) antibiotic and can mess with tendons. I don’t really like that, but I like that cipro works. I’m on antibiotics all the time as a matter of course so there’s not a whole lot to pick from when I do get sick that’s in pill form. It’s basically Cipro. So I’m used to it, but I don’t really like it. I mean I like feeling better but it’s still a nasty bit of work.

I have less than a week to go on it so that makes me happy, because then I can stop freaking out about my tendons!

And yes, I am getting back to normal energy, which is great.

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Since I want to not mess up my tendons, I’ve been doing a lot of sitting, which means reading and knitting mostly. Fortunately my Aunt Mary (who is also a bookworm of the first degree) sent me a box of books so I can have something to do while I sit! She sent me We Are the Brennans, Klara and the Sun, and A Swim In A Pond In The Rain.

So far I’ve read Brennans and really liked it. I’m reading Klara now, and I’m looking forward to Swim because I like Russian literature. (Mostly. I still need to read War & Peace which is in my library, mocking me for not reading it yet.)

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In Knitting, I have a lot going on but there was a Great Knitting Mystery Adventure this week.

I got a lot of yarn….

And then wound the pretty champagne colored yarn (Quince and Co Crane) for a project.

I was confused on said project. I posted it on Facebook to numerous excellent knitters. WE WERE ALL SO CONFUSED.

Finally, we figured out what to do. It was insane, my friends. Many minds were flabbergasted about this pattern.

But WE DID IT.

BEHOLD.

Anyway now it’s chugging along and is going to be a gorgeous shawl but man, figuring out this pattern was ROUGH!

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The rest of the yarn will be used for two shawls (I LOVE SHAWLS, OK? I really do. They’re so fun.) and a cowl. And yes, I am going to start my sweater soon!

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What are your weekend plans? Mine involve two dinners, lecturing at Mass, and…that’s it. :) But one of the dinners is for Tiffany’s 40th birthday!

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You know Tiff as the mom of Billy, most likely. Well, she’s pregnant again (with a little girl this time) and today is her 40th birthday!

Here she is with Billy…

And this is one of my favorite pictures of us. :)

Labor Day Sale at Ave Maria Press!

Happy Friday everyone!

There will be quick takes later but I wanted to post this first—Ave Maria Press is having a Labor Day Sale! You can get Living Memento Mori for 10% off through Monday! (As well as everything else they sell.)

Enter LABORDAY21 at checkout and there you go!

Another great resource is Ave Maria Press’s Notetaking Bible. I’m using it for my Bible In A Year studies. I’m ridiculously picky about Bibles and especially paper—I use fountain pens, sharpies, all sorts of markers, and I want them to work and not make a mess. That doesn’t happen with this bible—seriously. I can use fountain pens to make notes and there aren’t issues with feathering. (Sometimes, depending on the ink, it can bleed through a bit, but it’s not a big problem and it hasn’t happened often to me.)

It’s also a one-column Bible, which I like because it’s a lot easier to read!

There’s the hardcover or the imitation leather (which is the one I have). Take your pick!

So go shop! :) Enjoy!