Emily M. DeArdo

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essays,CF

Lies, Damn Lies, and Statistics

CF, essays, healthEmily DeArdo1 Comment
Diane and I as pre-schoolers, before my CF diagnosis. (I’m the blonde.)

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.

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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

Catholicism, essaysEmily DeArdo3 Comments

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.

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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!

essays, family, healthEmily DeArdoComment
“At the Millinery Shop”, Degas

“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. :)

Accommodations are not a "perk"

CF, essays, health, hearing lossEmily DeArdo4 Comments
An example of a lung function test result graph

An example of a lung function test result graph

As the talk about masking mandates ramps up again, I want to say something to all schools (high school and up)—where students and faculty can get vaccinated.

If you are requiring masks for all students and faculty, then please provide accommodation for students and staff who are hard of hearing/deaf and/or cannot wear masks.

When I was in high school and college, my lung function took a huge hit. As a sophomore in high school, I contracted non-infectious TB, which really destroyed my lung function. In college (also my sophomore year!), I almost died. I spent two weeks in the ICU battling a bug that only one other person in the world had ever had.

For the rest of my college career, I had between 19-25% lung function. In my senior year, I began transplant workup. I was sick.

I also started to lose my hearing my junior and senior years in college.

If I had been forced to wear a mask, I would not have been able to attend school. I’m not kidding. This isn’t a “psychological reaction” to wearing masks. It’s a fact, based on my heart rate, my rate of exertion, and my breathlessness when I wear masks and attempt to do anything now, when I have 54% lung function!

I could not have carried all my books around my high school building, let alone my small college campus. I would have not been able to breathe. I would not have been able to go up the stairs in my dormitory. I would have had to drop out of school, because there’s just no way I would’ve been able to do anything like get to class or understand what the professor was saying. This is not hysteria or hyperbole. By the end of my senior year I couldn’t get up a flight of stairs without being severely out of breath.

My hearing loss was fairly mild in college. In fact I didn’t get my first set of hearing aids until after transplant. But who knows if it would’ve been more of a problem if I couldn’t have see my professors’ lips?

Please. If you are in a position of authority to set mask mandates in a school or business, please provide accommodation for those of us who need it. We aren’t making it up, we’re not trying to be dramatic, we need to be able to breathe and understand what’s happening in class.

Seven Quick Takes: Links! Health! Patty!

7 Quick Takes, CF, health, transplantEmily DeArdoComment

I know that’s not a sexy title, but….

I’ve been writing about COVID related stuff a bit in the past year. And as we start to talk about masks and lockdowns again, I thought it would make sense to have an index post about COVID-related things.

The reason I feel this way is because I have, not to brag, a lot of hospital experience. I’ve been a patient in a hospital for many years. I know hospitals. I know lung stuff. I know about risk assessment and personal health.

So I feel like I should share my insights with you, for whatever you think they’re worth.

-1-

COVID, antibodies, and transplant life: posted 5/24/21

This one is a bit of an outlier because it deals with transplant a little more specifically, but it also talks about acceptable risk a bit as well.

-2-

Prudence, Acceptable Risk, and Medicine: posted 5/10/21

This was originally going to be a two-parter, but I haven’t written the second part (yet). The first part deals with exactly what the title says—the fact that every medical “intervention” (including taking Tylenol) has risks associated with it, and it’s our job to assess risks for ourselves.

It also talks about how people are in hospitals every single day, in ICUs every single day, and on ventilators every.single.day, because this is totally forgotten in reporting.

-3-

Hospital 101: posted 11/23/20

Basically: “yes you can be in the hospital and not feel terribly crappy.” And, “No, being in the hospital does not mean that you’re going to die.”

-4-

COVID and lung function: posted 7/7/20

Yes, you can recover lung function after being really, really, REALLY sick! If my crappy old CF lungs could do it, yours can too!

-5-

So that’s the listing of the “big” COVID posts. I have some other things scattered in Quick Takes and various places, but these are the long forms, so to speak. I hope you find them helpful.

Here is Patty as reward! :)

She has EIGHT teeth! And can say cheese!"

She has EIGHT teeth! And can say cheese!"

-6-

I went swimming for the first time in two years! YAY! It felt so great to be back in the water!

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-7-

And finally I wrote two posts this week! ICYM them:

An awesome clinic visit

The state of the Writing Wicket

Sixteen

essays, transplantEmily DeArdo2 Comments
D19B5462-83A7-4191-AE6D-D33B6ED7C379.jpeg

I have now had my new lungs for sixteen years. They are old enough to drive. :-P (Actually, my donor was a 50 year old woman named Suzanne. So these lungs are now 66 and still kicking!)

The 16th year was hard. We had COVID. We had my transfer to a new center, which….to be honest is still sort of irritating, because adult hospitals just really do not care about their patients’ time in the same way a children’s hospital does. Kinks are being worked out. The diabetes stuff was….rough, not gonna lie. But also, huge strides have been made which is great.

AND there was Patty!!!!!!

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And getting to meet Patty!

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Even in the midst of worldwide pandemic, there is still joy. There is joy everywhere. Not every day, maybe. I’ve had days that were definitely not joy filled. I’m not a perpetual ball of sunshine. I know that there are days, weeks, months, years, even, that are hard sledding.

But the key is to find the moments that are good (or, less bad).

There isn’t a whole lot of data for post-lung transplant folk like me. the data sets I’ve seen go to 10 years, and there aren’t enough patients to talk about 15 year, or 20 year, data. I’m making data.

I love turning the pages on the calendar. I love having birthdays. I love getting older because I wasn’t supposed to get older. But because of Suzanne, my donor, I did.

And I am grateful and incredibly happy about that.

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Trip to Houston: Day 1, Meeting Patty

essays, family, travelEmily DeArdoComment

I’m going to give you a recap of my Houston trip—not exactly a blow-by-blow, but a sort of recap, since I like to read people’s travel recaps and I figure other people do too. And of course this is the best way to share photos. :)

So I got to Houston on the 29th, the day before Patty’s first birthday! Fortunately my flight was on time for takeoff, but we did have to go around Houston to avoid some rain and ended up flying over the Gulf Coast and then back up

Everyone was on hand to meet me at Carousel 12 and I was excited—and so were they!

Patty, fortunately, did not cry when she met me (great relief). Instead she studied me very intently. You could see the wheels turning in her little head, but then it clicked (Oh wait, I’ve seen this person on the phone….I know this voice….) and she smiled and giggled for me.

Dinner was at Matt (Patty’s dad)’s parents house that night—pizza and garlic knots for all!

Susie, with Patty and Frankie, in their grandparents’ kitchen.

Susie, with Patty and Frankie, in their grandparents’ kitchen.

Here’s a cast of characters for the trip:

Diane—my cousin, who is 6 months younger than me and shares a birthday with my sister and one other cousin of ours, Jill. Her father (John) is my mom’s older brother. (he’s number 2 out of the 8 kids).

Matt—her husband, whom she met at Notre Dame. He’s a CPA and a member of the Texas State Guard.

Susie—oldest of the 5 kids. She’s 12.

Bridget—second kid, age 9

Bridget and her AG doll, Catherine, in matching PJs.

Bridget and her AG doll, Catherine, in matching PJs.

Frankie—third kid, age 6 (he’ll be 7 next month)

Johnny—fourth kid, age 3

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Patty—fifth kid, just turned one (we know Patty, right?)

Beppo and Wilma—the cats



Letters to my 14 YO and 23 YO selves

Catholicism, essaysEmily DeArdo2 Comments
Me at 14, right after eighth grade graduation.

Me at 14, right after eighth grade graduation.

We’re doing things a little differently today! Instead of normal quick takes, I’m giving you two letters that I wrote to myself at different ages.

Emily Stimpson Chapman is running a contest on Instagram to promote her new book, Letters To Myself at the End of the World. To enter, you write “letters” to your younger selves about four topics—so far, they’ve been on The Church and holiness.

I’ve really loved doing this and I thought I’d share my letters with those of you who might not be on Instagram!

I’m posting them in “age” order, so the one to 14 year old me, on the Church, is first.


Dear Emily, 

You just graduated from eighth grade. You’ve spent your entire life surrounded by Catholics, by people who believe what you believe, and live how you live. When you go to high school, that will change. 

Within your first month, you’ll be asked if you’re “saved” at the lunch table. You’ll answer that you’re Catholic, and everyone will look at you “like you have lobsters crawling out of [your] ears.” You’ll be told that you’re going to Hell because you’re Catholic. (Don’t worry. In the midst of all of this you’ll make wonderful, lifelong friends!) 

You’ve never heard any of this before. You’ve never been told that your Church is wrong, that what you believe is false or silly. 

You have two choices—you can be embarrassed by your faith and hide it, or try to change it. Or, you can delve into its richness and find out what you believe, and why you believe it. 

You’ll choose the second option. You’ll get the family bible out from under the glass-topped coffee table, and you’ll read it, and the big beige Catechism. You’ll stick post-it notes inside to mark pages (the start of a life long habit that will set you up well for majoring in the liberal arts). And in all of this reading and debating at the lunch table, you’ll fall more deeply in love with the Church. 

The Church is not perfect. You know this. You’ll meet plenty of imperfect people, even criminals, in the church. You’re not perfect yourself. ;-) But you will never leave it, because where else would you go? 

You love Mary and the rosary; the rosary, in fact, will become your life line (Literally, at times. Seriously). You love the Eucharist so much it can make you breathless at Mass. You love the saints, the sacraments (even confession, which you’ll learn to like more!), and the liturgy. You cannot image giving up any of this, or thinking that any of it isn’t true. 

Most of the people in your life will not be Catholic. You will be, in some places, the only Catholic they’ve ever met. You will have to talk about the church over taco salad at your office (it’s always over lunch!). 

The Church is your home. It’s your family’s home—generations and generations of Heilmanns and Dorrians and Ireardis and Corrados, back and back and back, to Ireland and Germany and Italy and Scotland. It’s *you*. You are welded to its body, grafted into it—and it will feed you forever. In every moment of your life, it is home. You will weep in pews. You will rail against God’s designs there. You will rejoice. You will cry from happiness. You will be filled with thanksgiving. You will ask why. 

Everything, everything is laid bare at the altar. It’s your strength. Never lose it. 


Love, 

Emily

To 23 year old me, about holiness:

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Prudence, Acceptable Risk, and Medicine

essays, health, hearing lossEmily DeArdo1 Comment
1925.3245 - Under the Wave off Kanagawa (Kanagawa oki nami....jpg

I’ve been debating this post for awhile, but I think the time has come for me to just write and get on with it. Also, this is gonna be long so settle in.

This is not about the COVID vaccine, really. The COVID vaccine, to me, is just the tip of the iceberg when it comes to the deeper problem, which is that we, as a people, do not know how to make prudent choices, or define acceptable risk for ourselves and our families.

This will be in two parts: This one, and then a piece about the moral/religious side of things.

(Some of these stories y’all have heard before, but they’re illustrative, so they’re coming up again.)


The first thing we need to talk about is the fact that hospitals are busy every single day of the world.

With COVID, people seemed to be shocked that people were living and dying in hospitals every day. People were in ICUs! (insert running around screaming gif here)

Folks. Yes. People are in ICUs every day. People are in hospitals every day. Hospitals, like all other things, have cycles—there were times when I was on the floor and it was pretty empty, and there were times where almost every single room was full. But yes, there are people in ICUs every day. There are nurses and doctors who work specifically in ICUs. These folks have jobs because ICU specialists are needed on a regular basis. (1)

I understand that many of you do not have the intimacy with hospitals that I have. But a lot of insanity was caused by the breathless reporting about ICU statistics and “people are on ventilators!”

Folks, I was on a ventilator for almost two weeks. Yes. It happens. Some people are one them for a lot longer. But this is not new. This is medicine. This is life. This is—often—death. People die in hospitals every day. In fact, whenever I drive by the former Resort, I think about that, and I pray for the people inside. It’s not just COVID that kills people, although you’d be hard pressed not to think that these days.

(We’ll come back to media coverage in a bit.)

This leads me to my second point, which is that….

Every single medical intervention has risks associated with it.

This includes the Tylenol you take for your headache, the Motrin for your PMS cramps, as well as interventions like being on a ventilator. Every single thing you put in your body can cause an adverse reaction, as anyone who has ever had food poisoning knows.

Life has risks. Driving to work has risks. Getting out of bed is a risk! Taking a shower is a risk! Everyday, we do something that might cause our demise, and most of the time we’re OK with that, because, life. (Drinking too much water has risks!) But when it comes to medicine, all of sudden we lose the sense of acceptable risk.

An example from my life: I lost my hearing because of ototoxic meds (Meds that are toxic to the ear’s hair cells). The choice was, destroy lung infections and stay alive, or not destroy lung infections and hasten death, but then have my hearing be fine. Now, at the time these medicines began to be given to me IV, we didn’t know about the ototoxic nature of them, and now doctors are more sensitive to that. (Yes, once again I pave the way for others!) But all that being said, the choice is—do you want to fight infection, or have great hearing. In my case, it was fight infection—even after my hearing had begun to deteriorate. (2)

Now, the other thing to do, if we know that certain meds or treatments are not good for us (or just cause bad outcomes) is to ask if there’s anything else that can be substituted. I have also done this, because there are some meds that just mess up my body. I have a gimpy right knee now because I walked too far on it when I was on a particular med. So now when I have a sinus infection we use something else, but it has the same risks associated with it, and now I’m just insanely careful when I’m on it (like, I sit on the couch for two weeks careful). But to not treat the sinus infection could—and probably would—lead to lots of other issues down the road, requiring stronger meds, and possible surgeries and hospital stays. no fun thank you.

When the idea of transplant first came up, I was scared at the idea of such a big surgery because I’d never had surgery before. My transplant ended up being my third surgery ever. (3) A lot can go wrong during surgery. I could’ve rejected my lungs immediately. I could’ve died on the table. But at the same time, the only way I was going to survive was to get the surgery (and this was assuming a donor was found).

So, there were risks to transplant, and there were risks to life without it. I made the choice to accept the risks and go forward. Not everyone does that. It’s their choice.

But with transplant comes other risks, mainly the one that I have a compromised immune system and am more susceptible to things (like, um, COVID!). But even within that, we have to look at choices.

Some people post transplant are afraid to open their windows if the grass is being cut. (I’m not kidding) They never go back to work because they’re afraid of infection. Etc. etc. I was never like that, because the point of a transplant is to live your life, while not being stupid (like, tanning—big no no for us, or drinking a lot).

What I’m seeing with the COVID vaccine is people saying, “But there are side effects!”

Yes. There are. They may happen to you. This is the case for everything. single. thing. Read a box of Tylenol some time. Heck, ladies, check a box of tampons—see all the Toxic Shock warnings on them? Yeah. Everything has side effects. Too much sun? You burn. Drink too much? Hangover. Etc. It’s the circle of life. When people just say SIDE EFFECTS! it doesn’t resonate, and it doesn’t come across as a good argument because everything does. (4)

For example: anti-emetics (aka, anti-nausea drugs). One of the most popular anti-nausea drugs is Zofran. Lots of people like it. It’s great. It is not great for me because it makes me throw up; ie, it causes the exact thing it’s supposed to prevent. This also happens with my mom and my sister. So we cannot take zofran.

But that doesn’t mean that I go around saying Zofran is terrible no one should take it there are SIDE EFFECTS!

Zofran is bad for me, but apparently it is great for many other people.

Now, yes, you might get the vaccine, and you might have side effects. It may even be prudent for many people, who are not as an especially high risk of COVID, to delay taking the vaccine. I can see that.

But to say a la Chicken Little that you won’t take it because SIDE EFECTS, and that’s your only argument, is not…a great one. If you say, “I won't take it right now because I might get pregnant and we aren’t sure of the side effects of the medication on pregnancies,” that’s prudent and valid. But if you just say “side effects!!!!!!!!!!!” it doesn’t come across as a reasoned argument.

Sometimes side effects are just going to happen as a part of the acceptance of risk thing. See, losing my hearing. See, chemo side effects. See, “I’m on prednisone for the rest of my life because I need to be and that leads to many things that are not great but I’d rather be alive.” For me, getting the COVID vaccine made sense because if I get COVID, that’s not good at all.

(Now, obviously, sometimes a side effect becomes not a side effect—like thalidomide in pregnancy—and it becomes a “feature not a bug”. That’s completely different than what I’m talking about here. And even that drug has good uses! Just not in pregnant people!)

For you, it might make sense not to get the COVID vaccine, or any other vaccine (like my sister can’t get the regular flu vaccine because she’s allergic to eggs). And that’s fine. But what’s happened is that everything surrounding COVID has become political. So we’re not really working from a clear choice here—we’re working from one that’s clouded by politics and all sorts of other things.

And this is what is lost: the idea that we can make prudent, acceptable risk choices for ourselves without being screamed at or told that we’re being idiots or saying that others are idiots for doing x, y, or z.

I make acceptable risk choices all the time, without even thinking about it, because after 16 years of transplant life, I know. That includes hugging my parents even before I got vaccinated, because hugs are good. (And yes, my parents mostly stayed at home before getting vaccinated—dad works from home). I’ve spent time with my friends in their houses! Because my friends know that if they’re sick, they shouldn’t invite me over, COVID or no COVID!

I have friends that don’t get flu shots. So in the winter, I tell them that if they’re sick, I will not be around them. It’s pretty simple. I don’t yell at them. I just state that if they’re sick, we’re not going to be hanging out. This is a choice they have made, and in turn, it affects a choice that I make. We both do risk assessment for ourselves.

But for some reasons we can’t do that with COVID.

People look at COVID and they see the death tolls and the case numbers every day and they think that it’s the worst thing ever. But there’s no context to this. It’s like if all you did was watch the news, you’d think that we’re all going to be eaten by sharks, or shot up outside the gas station, or kidnapped, or die in a plane crash. This is because the news reports the newsworthy, which is not, you know “1,000,000 in the metro area got home safely from work today!”

(NOTE: this is not to diminish the death toll from COVID. Most definitely not.)

But at the same time, with COVID especially, it’s giving us a twisted picture. We’re seeing “a patient left the hospital after a month today and everyone clapped!” “A person was on a ventilator for two weeks and came off of it and went home!”

This happens every day and it ties back to point one. Yes, it’s a great day to get the ventilator out, trust me. :) It’s a great day to go home after a month long hospitalization, of which I have had a few, because, you want to go home and take a real bath! (And, yes, I was also on the local news after my transplant because I was the first one at my center. You can actually find this on Youtube. No, I will not link to it. :))

But when that stuff is being covered daily, it gives the impression that this is the rarity, and it’s not, if you look at case numbers versus deaths. (Again, see note above.) Most people who get it will go home, or not be hospitalized at all. That doesn’t mean that the losses aren’t sad, because they are. But it does mean that by this sort of coverage, we’re skewing people’s perceptions of real risk. Again, it would be like if the news were doing stories about a person who came home from work safely every night for a week. It would make us think, gee, it must be really dangerous to drive to and from work!

You can only make an acceptable risk evaluation when you have the information in front of you without '“passion or prejudice”, as someone once said in a movie.

And you also have to trust your doctors. This is the final point:

a lot of people do not trust their doctors or the medical establishment.

I, for one, do trust them because my life depends on it. The very few doctors I have had in my life that I did not trust were overruled, thankfully, by doctors I did trust—or I had a come to Jesus meeting with them and said, hey look. (Or I went behind their backs and got information from the Pulmonology department, who is the apex doctor in my situation). I’ve had shitty doctors. My parents can tell you all the stories of the shitty nurses and doctors we’ve encountered.

But my “team”—my transplant pulmonologist, my transplant nurses, and etc.—I trust inherently. I’ve had the same therapist since I was 17—that’s 22 years! With these folks, I can get good information and decide what to do next.

If you do not trust your doctors, then…you’re sort of screwed, honestly. You need to find one you do trust, who also isn’t a charlatan who just tells you whatever you want to hear, because that’s not useful either. (ie, one who says that you can treat T1 diabetes with essential oils—no, you really can’t.)

Without trustworthy people, you can’t make good decisions because you don’t have all the information.

I don’t think that COVID is helping us trust the medical establishment more, as a whole, because we’re getting crazy messaging from the CDC and others in government that seem to contradict themselves many times a day. But at the same time, it’s a little bit like Congressional popularity: most of the time, people have a really low opinion of Congress as a whole, but they love their local guy.

We need to “love” a local doctor. We need to find medical people we trust, and can help us make appropriate decisions for our health and the health of our families. That’s one reason my parents got the COVID vaccine—because of me!

People die every day, COVID or not—and that you should realize that (memento mori, folks!) and use it as a catalyst to live your one life well. You are going to die of something. Let that knowledge encourage you to live well, make good decisions, and be prudent.

Footnotes:

(1) Yes, I’m aware that one of the big things at the beginning of COVID was worries about hospitals being overwhelmed. It was probably prudent to have shut downs in that time period, when we didn't have the information we have now, and when the risk of hospital overwhelm was real—and happening in some places. However, my point here is that there was breathless coverage of the fact that hospitals have full ICUs or have people on ventilators, which happens every single day, everywhere in the world. There was a clear exhibition of the fact that most people do not understand how hospitals actually work, and that people go in and out of them all the time without any fanfare.

(2) This is not a given. Anna Pavlova, the famous ballerina, contracted pneumonia, and was given a choice to have an operation that would remove her ability to dance, or die. She chose death, saying “If I can’t dance, I’d rather be dead.” She died of pleurisy a few days before her fiftieth birthday.

(3) The first one was a combo sinus clean-out and wisdom teeth removal, and the second was to place my port.

(4) Same thing happens when people toss around the words “toxins” or “chemicals” to just refer to every day stuff. There are chemicals in every single thing we eat, drink, inhale, and are. We are made up of chemicals. Same with “toxins”. Water can be toxic if you have too much of it.














Home

essays, CatholicismEmily DeArdoComment
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Oh, Jesus, I have missed you.

The last Mass I attended was March 1, 2020. I went to confession and then heard Mass.

I have never gone a year without Mass, and I’ve definitely never gone this long without The Eucharist. During my longest hospitalizations, I still had the Eucharist almost every week (except for the time I was in the ICU and, you know, not able to swallow things). Right before my transplant I was able to receive a sip of the Precious Blood. After transplant, extraordinary ministers of Holy Communion came to our house to give me the sacrament.

I haven’t had the Eucharist since July, when my good friend Fr. H came to hear my confession, give me communion, and have lunch with me.

That’s so long without Jesus.

I was so excited to go to Mass that I couldn’t sleep last night. The idea of wearing nice “church” clothes, of getting all my prayer books together from their disparate places around my house, and actually attending Mass and not listening to a podcast homily, was…really exciting. I’m not going to lie.

Entering the pew and being in the presence of God was a thrill, and I’m not lying. Usually I come to Mass “prepared”. I have a list of who I’m going to pray for and what I’m offering Mass for.

This Mass? Nothing but pure thanksgiving.

The closest thing I can compare it to is when I was in the ICU in college. I was flat on my back or two weeks. My muscles had completely lost the knack of doing things like sitting up, or standing, or going to the bathroom. I was amazed at how my body just took those things for granted.

That’s how I felt today. Receiving Jesus in the Eucharist, being filled with that grace—it was like, “I got this every week?” It felt completely new and I was so grateful for it.

Discover & share this Disney GIF with everyone you know. GIPHY is how you search, share, discover, and create GIFs.

Catholics, let’s talk for a second.

I am totally vaccinated. You might not be. You might still be wary of going back.

Please go back soon. Jesus misses you!

One of my goals was to get to Mass for Holy Week. The idea of celebrating Holy Week, going to the Masses, going to confession, having real holy hours again…I’m a bit verklempt thinking about it.

I wrote in the back of my prayer journal that “Jesus is essential.” I had missed Mass but I didn’t realize how much I had missed it until I was back in the parking lot and getting out of the car.

It really was like coming home.

Annunciation

essays, CatholicismEmily DeArdoComment
Fra Angelico, “Annunciation” (one of many he did! More of them are below.)

Fra Angelico, “Annunciation” (one of many he did! More of them are below.)

Hail, Mary!

The Annunciation is a solemnity on the Church calendar—meaning that it’s treated like a Sunday. During Lent, when it usually falls, you can relax your penances because it’s a day that we are meant to REJOICE.

A few years ago the Annunciation fell on Good Friday and it was transferred to my birthday, which was pretty cool. The Church wants us to celebrate with her, so the feast was moved so that we could celebrate it.

Botticelli, “Annunciation”

Botticelli, “Annunciation”

There’s a lot of baggage associated with the word “handmaid” these days. But let’s remember that it’s Biblical—in the Annunciation account, Mary said, “I am the handmaid of the Lord"! And that’s what we’re all called to be, man or woman—handmaids of God. Let’s follow Mary’s instructions and “Do whatever He tells you.” (John 2:5)

We’re afraid to do whatever God tells us, aren’t we? We don’t think that God really wants our ultimate good. But He does. He wants it so much that “the Word became flesh and dwelt among us.” (John 1: 14)

Mary shows us how to do whatever God asks of us—with trust and confidence, a confidence and trust that carries her even to the foot of the cross where she watched her son die. She pondered these things in her heart (Luke 2:19). She might not have always understood, because Mary isn’t God. She’s not omnipotent. But she knew that God’s plan, “crazy” as it might be, lead to her good, and the good of her son.

1942.249 - The Annunciation.jpg

Here’s a poem about the annunciation that I really like, so I’ll leave you with it:

The Annunciation

Edwin Muir

The angel and the girl are met.
Earth was the only meeting place.
For the embodied never yet
Travelled beyond the shore of space.

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The eternal spirits in freedom go
See, they have come together, see,
While the destroying minutes flow,
Each reflects the other’s face
Till heaven in hers and earth in his
Shine steady there. He’s come to her
From far beyond the farthest star,
Feathered through time. Immediacy
Of strangest strangeness is the bliss
That from their limbs all movement takes.
Yet the increasing rapture brings
So great a wonder that it makes
Each feather tremble on his wings.

El Greco, “The Annunciation”

El Greco, “The Annunciation”

Outside the window footsteps fall
Into the ordinary day
And with the sun along the wall
Pursue their unreturning way.
Sound’s perpetual roundabout
Rolls its numbered octaves out
And hoarsely grinds its battered tune.

Fra Angelico, “The Annunciation”

Fra Angelico, “The Annunciation”

But through the endless afternoon
These neither speak nor movement make,
But stare into their deepening trance
As if their gaze would never break.

Leonardo da Vinci, “The Annunciation”, 1472.

Leonardo da Vinci, “The Annunciation”, 1472.

Seven Quick Takes--Giveaway Winners!!!!

give aways, CF, food, recipesEmily DeArdo1 Comment
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It has been BUSY here this week! First there was the book giveaway—and the winners are….

Christy Thomas and Rachel Anna!

Congratulations!! I hope you love the book! I I have emailed you to get your information. :)

Thanks to EVERYONE who entered! If you’d like your own signed copy, email me—they are $20 and include a bookmark and prayer card! (And shipping!)

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I also wrote this: No, you cannot cure ALL THE THINGS with diet….

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Speaking of health stuff….this vaccine rollout has been sort of nuts.

First, the state decided that my group of people—people with “congenital” issues, which CF is, but it’s weird to call it that—can begin getting the vaccine on Monday. Ok. Fine.

I talked to my transplant clinic (OSUMC) and they said, well check with the Department of Health.

Oooookay.

So I register with my county’s health department. Fine.

Then I hear that OSUMC is doing a big vaccination clinic for their patients, even turning the basketball arena into a vaccine clinic. Yay!

Oh wait. I’m not eligible for that, because…….health departments are taking care of me? Huh? OSUMC is only doing their elderly patients? (Which makes zero sense given that I am a transplant patient and they see adult CF patients?!)

This makes no sense to me. OSU is doing elderly people, which, OK, obviously they need it. But health departments aren’t getting a ton of vaccines, especially in a county like mine which has a smaller population and is mostly rural. They’re getting a few hundred doses and they have thousands of people signed up.

So. I have no idea when I’m getting the vaccine or where, but I’m really annoyed that the place where I get my healthcare isn’t making an effort to put its patients in their clinic.

This sort of dovetails into something else I’ve been wanting to talk about….

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Adult hospitals really don’t care about making your life easier. They don’t. Children’s hospitals do.

The Resort had everything there. Radiology. Labs. Clinics. ER. Hospital. EVERYTHING. All under one roof. I drove, I parked once, I got everything done. It was easy.

At OSUMC, nope. I have to drive to one building to get my tests done before clinic. Because we can’t use the radiology department in the hospital. And there’s no pulmonary function testing lab at the hospital. REALLY? They do lung transplants. And there isn’t a PFT lab at the hospital itself?

So I have to go to this place, register twice, and then drive to the hospital itself for my appointment.

At the hospital, they do not take you early. They did at the Resort. At the Resort, my day started with an 8:0 lab draw in infusion. I was often out the door by 11 am. I’d seen everyone.

Here? NOPE. I’ve got labs at 9, then PFTs, then X-ray, then I have hours to wait before my 2:00 appt., because they won’t take me early. Seriously?

So I have to find ways to amuse myself between these two things, and I waste an entire day. This annoys the crap out of me.

Ad finally, the free parking is only good for a few hours. So there’s that.

Adult hospitals, quite frankly, suck at this stuff. They’re so awful. And if it wasn’t COVID-tide this would be somewhat better because I could go to cute cafes nearby, or go shopping or something. With COVID, this all becomes a massive pain in the butt because places are either closed to indoor seating, or I’m sitting around wearing a mask in all these places for hours, which is annoying.

ADULT HOSPITALS! DO BETTER.

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OK after that you deserve some Patty. Here you go

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She just had her six month check-up and she has gotten taller and heavier so yayyy! And then she got her six month shots, poor bebe. :(

That’s one reason I want the vaccine NOW—I want to see Patty!!!!!!!!! I want to travel!

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This weeknight bolognese recipe is EPIC and you need to make it….I didn’t use ground sirloin, I used regular old ground beef. :) Also left out the cream. But SO GOOD.

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And finally, I read The Lost Man this week and really liked it. If you like mysteries, this is a really good one!

No, You Cannot Cure CF with "Diet"

CF, health, transplantEmily DeArdo4 Comments

(I’m doing a book giveaway this week! Enter here!)

I see a lot of crazy things on the Internet.

One of my favorites (sarcasm mode) is that you can “cure” every chronic disease with diet.

Um….


No, you can’t.

No diet is going to make chromosome 7 magically work in me.

No diet will fix the fact that I have CFRD (CF Related Diabetes). It will not make my pancreas magically make insulin.

I am really, really tired of this crap. Stop it.

When I visited the CF dietician back in the day (I don’t need a specific CF dietician anymore) the rule was “eat as much of anything as you want” as long as it’s not diet, low-fat, or fat free. EAT EAT EAT. We were always trying to find ways to pour more calories into my body. Milkshakes. Ice cream. There was calorie powder!!! (I am not kidding.)

That’s because when you have CF, your body burns an incredible amount of calories just trying to maintain your baseline. Coughing takes a lot of energy. EVERYTHING takes a lot of energy. Oh, and salt? You want a LOT OF THAT. Popcorn. Peanuts. Potato chips. Because your body loses a lot more salt that everyone else’s. So in the summer, I’m all about the sallllt.

When you see things that say “diabetes can be reversed with diet” they are (I hope) talking about type two, and yes, in type 2, what you eat does matter. It matter a lot. You can try to fix it with what you eat. But if you are a T1 person, you cannot. It’s not possible.

And also, if you have T1, you actually need sugar sometimes. There are times when I am commanded to eat candy and pizza and drink orange juice! (hopefully not at the same time!)

While I’m fixing health lies, let’s fix another one: You do not just “get a transplant.”

If you need one, you might not get one. If you smoke, you must stop smoking. You are tested for cigarette usage in your labs. If you drink and you need a liver transplant, you need to stop drinking.

Do some people do stupid things post-transplant? heck yes. And these are people who get kicked out of their center’s program and are not eligible for another transplant, should they need one.

But the vast majority of the time, centers are hard core about making this sort of behavior STOP before, because there are so many people that need transplants. If you’re not going to take care of the organ, then you’re most likely not going to get one!

And it’s hard work to qualify for a transplant. It’s days of tests and evaluations by multiple people on a multidisciplinary team. The idea of “just getting a transplant” is laughable to me.

2020 taught me a lot about how little the average American knows about hospitals, illness, and ICUs. (And germs.) But in 2021 I’m seeing a lot of misinformation about what a “good” diet can do for your body.

homemade bolognese. YUM.

homemade bolognese. YUM.

Good food can help you in a lot of ways. So can exercise. But it does not cure everything and people who say it does are charlatans, up there with the “essential oils cure ebola” crowd.

So, now you know! Go and use your knowledge. :)



Meal Trains Rollin' (or: why don't more churches do this?)

essaysEmily DeArdo2 Comments
“The Basket of Apples”, Cezanne

“The Basket of Apples”, Cezanne

So a friend of mine, who is going through a lot right now, told me that people from her church had recently dropped off some meals for them.

She was really glad that they did this.

And this got me thinking. Why don’t we do this more often? Why are meal trains a thing that churches don’t do?

(At least, no parish I’ve ever belonged to has ‘done’ this, except for things like funeral luncheons.)

So I asked people on Twitter.

Most people would be interested in doing this—but their parish doesn’t currently do it.

Some reasons why?

LEGAL issues, amazingly. I hadn’t even thought of that. The idea that the parish had to have a clean kitchen that was up to code and all sorts of stuff.

And then this led me into another tangent: Why do we think it has to be “parish approved”?

I think one of the problems we run into these days is that everything has to be done by committee. We have to have plans and expenditures and charts and resolutions and PLANS.

Now I like a good plan. But for me, this seems like one of the simplest things ever.

1) Get a group of people together (via email/Facebook/whatever) that wants to serve the people in the community by providing meals. It can be for new parents, sick people in the family, deaths, whatever.

2) Publicize the idea. Put it in the bulletin or tell people that it exists. If your parish is anything like the ones I’ve belonged to, the parish information chain is a magical thing and people will just know who needs what—but get a contact email out there for people who are new!

3) People request meals, noting any allergies, of course.

4) People provide meals.

5) Repeat

Why does this have to be hard?

The parish doesn’t need to be involved at all—the people would make the meals in their own homes. It’s not under parish auspices. It’s just something that the people of the parish decide to do. There’s no money from the parish. Etc.

This seems like an easy way to “feed the hungry” in a way that I think gets missed. A lot of times people don ‘t need a food pantry. They need help, but it’s things like a few meals. Or maybe gift cards to groceries stories. They aren’t in the position to need long term help, but right now, they could use some help filling in the cracks.

I know in this time of COVID the idea of dropping off food and such can be….fraught.

But let’s make this happen. Let’s get together and provide this service to people who need it. If you think this is a good idea and you have the time, set it up in your parish.

Let’s be those hands and feet of Christ!

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"Comparisons are odious"

essaysEmily DeArdoComment
“Smelling a rose”, Waterhouse

“Smelling a rose”, Waterhouse

Have you read Madeleine L’Engle’s Austin family series? If not, get to it.

One of the things the characters say to each other frequently is, “Comparisons are odious.”

And they are.

I remember before my transplant how I used to talk to my therapist and say things like, “Oh, all my friends are going off to get their masters or going to law school and getting apartments and I’m just stuck at my parents’!”

I felt so stuck. I was angry that I was stuck waiting. I wasn’t happy about it.

But.

In hindsight, I have seen that things worked out the best way they could. The best way possible, really. I have no college debt. I have my own place now that I love. As usual, God knew what He was about, but I, er usual, didn’t, because I can’t see what He sees.

One of the things I am glad has not happened to me is that I have not become bitter. We can “rage against the dying of the light”, but bitterness is poison that ruins your life. Comparison is a great way to let bitterness into your veins.

Your life is your life. It’s not anyone else’s. You have no idea what God is going to do with your life. There have been many times when I have been frustrated or angry, but those moments pass, and I realize that God knows the plan, even if I don’t. (Sometimes it takes a LONG TIME for those moments to pass!)

I wanted very much to be married and to have my own children. That has not happened, and I will never be able to have children. At least, biologically. This has been a cross. I talk about it in my book.

But if I allowed this to become bitterness and envy, that would poison me. It would make me less Christ-like and a worse Christian.

There are losses we have that should be grieved. There are things that happen that we cannot change, and we wish we could. It’s healthy to say, I wanted this, and it is good, and it will not happen.

BUT

To look at other people’s lives and say, I want what THEY have….is looking a book you know nothing about and not reading it. You don’t know what their marriage is like, what their kids are like, what their finances are like, etc. You only see the outside.

And you also have no idea what God has planned for either of you.

We will all suffer losses. We will all suffer pain. It’s life.

But God created you, and your circumstances, particularly to fulfill a special place on this planet. No one else can do what you can uniquely do.

I have seen a lot of bitter CF folk. They hate CF. They curse it. They wish their lives were different.

But to have a different life is….to not be you.

And I would never wish myself out of existence.

Even in the hard places, your life was created by God to do something specific in His plan.

As Galadriel said in Lord of the Rings, “This task was appointed to you, Frodo of the Shire. And if you do not find a way, no one will.”

I a vision, Galadriel helps Frodo while in Shelob’s cave.

In a vision, Galadriel helps Frodo while in Shelob’s cave.


Your tasks are appointed to you. No one else.

It’s fine to be angry and upset—but only for awhile. Otherwise, bitterness will eat away at you and poison you and those around you.

Envy is a deadly sin for a reason.

Remember that you can’t see everything. When I’m knitting and I start on a pattern, I don’t see the end. When I’ve been working on my cardigan there are times I’ve gone, this cannot be right.

But as the pieces come together, I see. I see what the designer saw.

Why do we trust knitwear designers more than God?

If there’s one thing I want people to get out of reading my book, it’s that darkness does not last, and even in it, Jesus is with you.

Don’t give in to darkness, to envy, to despair.

Have courage. And remember St. Thomas More, who wrote this to his daughter Meg shortly before he was beheaded on Tower Green:

Thomas More.png



Glorious Scars

Catholicism, essays, the bookEmily DeArdoComment

For my spiritual reading, I’m re-reading Fulton Sheen’s Life of Christ. And as I was reading yesterday, I came across this great bit:

Satan never has and never will appear with scars.

And this struck me so deeply, and I’ll tell you why.

I talk about this in my book (in the epilogue)—the idea that Christ has glorious scars, that we see, in His glory, the scars of His crucifixion and the things he has endured. The hymn “Lo, He Comes With Clouds Descending” talks about this:

With what rapture

With what rapture

With what rapture

Gaze we on those glorious scars!


But we don’t like scars, right? We try to cover them up or remove them or have them lasered away, because they’re imperfect, they’re ugly, they’re not pretty.

But they’re also signs that we survived. Chris Cleave, in his novel Little Bee, writes that scars don’t form on dead people. Scars are signs of life. And they are.

I have a lot of scars, in a lot of places. But they’re signs of life. Just like Christ’s are, they’re signs of triumph in battle, of overcoming, of survival and glory.

Satan doesn’t have scars, because he doesn’t fight the battle. He causes the battle.

Christ fought the battle and won. Thomas poked his fingers into the scars and saw them and believed.

To me, scars aren’t ugly. They’re glorious. And they’re glorious for Jesus, too.


(Here’s my favorite version of “Lo He Comes”—by the Dominican student brothers of the Province of St. Joseph. You can get the CD here. )


Heart note

essaysEmily DeArdo2 Comments
women at tea.jpeg

(There have been a few—very few—times in my life when I’ve internally felt that God wanted me to write something. This is one of those times. I’ve lightly edited the post, to remove typos. )

As I write this, it’s 8:00 on Sunday evening. The sun is going down and turning leaves to gold. Sunsets in my part of the world are beautiful. The herb garden on my porch is in shadow. I’m listening to piano music and I’ve just gotten out of the tub, so I’m in my pajamas and a deep pine colored robe that my sister got all the bridesmaids for her wedding last June.

I think everyone has hard months in their year. I know for one friend of mine, it’s February. TS Elliot said that April was the cruelest month. For me—and it’s taken me a few years to realize this—it’s June.

I didn’t really notice this until about three or four years ago, but I was always tetchy in June. I was angry, sad, depressed—I just wanted to be away from everyone. I felt sad for no reason. June was—and is—hard.

But now that I’ve thought about it, I think it’s because it was the month before my transplant. It was a month I spent in the hospital, on the knife edge of death. My body was so worn out that I slept most of the time, and the nurses and doctors didn’t even tell me to eat or schedule PT. Looking back, that was a huge red flag. It was like everyone really knew what was going on but me. I had just finished working my first state budget in the Senate. I thought I was just tired. But really, I was very close to dying.

So June has seared itself on my brain and in my body as a rough month. It was a very prolonged near-death experience and I don’t think I’m being dramatic to say that. I had the daily energy to brush my teeth and maybe get dressed. That was it, most days.

June is a lovely month, with a lot of celebration in it—both my parents’ birthdays, my grandmother’s birthday, my sister’s wedding anniversary, and my parents’ wedding anniversary.

But it’s also really hard for me.

And right now, it seems to be extra hard for all of us.

A former priest from my parish wrote this letter in his parish’s bulletin, and as I read it, I kept thinking, yes. Yes. This is what I’ve been wanting to say and had no idea how to say it.

Normally in this month I ask for—and get—a lot of grace from my people. I usually up my dose of anti-anxiety medication in June. I give myself lots of grace. By the time July rolls around, I feel better.

What I’m suggesting is that we all give each other, right now, lots of grace.

*

The reason I chose the art at the top of this post is because when I write here, I write like I talk. I write to you like I would talk to you if you were here at Orchard House and we were sitting at my table having tea or coffee or cocoa. I’m not trying to impress you with my words and logic. I’m just talking, sharing myself with you. That’s what I’m doing now. I’m sharing these thoughts that have been in my heart for the past eight days, and longer.

It is OK to be quiet, to think, to withdraw and not know what to do or what is going on. Jesus did this, often, in the Gospels. I know that’s a somewhat controversial point right now. And I don’t say it to mean stick your head in the sand and pretend everything is fine. Because, Lord knows, all of us have had a really rocky last three months or so. A lot of things aren’t fine.

Give yourself grace. Give your friends and family and neighbors grace. Give space. Take your own space. We do not have to have every answer to every problem right now. If you’re feeling compassion fatigue, I gotcha.

If you’ve ever read The Secret Life of Bees, you might remember the character of May, who felt things so deeply that she had to write the horrors she saw or heard about on a piece of paper and put them in her wailing wall in the backyard. And one night, she felt so much, and was so lost in the pain, that she went into a river and drowned herself.

I don’t want you to drown yourself. I don’t want to drown my own self.

Feeling things is good. Working to change things is good and necessary. As Christians, we are called to be light to the world and salt of the earth. We are called to love. St. Teresa of Avila said that Christ has no body now but yours, and that’s true. We are his body, his millions of bodies, in the world.

But—If you feel yourself being a meaner, harder version of yourself, you might need some quiet.

It’s all too easy in our world to get caught up in the 24 hour news cycle, in social media, in constant alerts. Lord knows I’ve been there, and I do use social media. But I always try to use it intentionally.

One of the things I always want to do, in anything I write or post, is show you that even in hard times, in darkness, God is with us. He doesn’t abandon us. An imperfect life can still have joy.

We have to fight for joy. And we have to trust God, that His promises hold, and that He is going to taken care of us, the way he takes care of the sparrows. We are made in his image—all of us—and we are inestimably valuable to him.

Have you seen Jesus of Nazareth? It’s one of my family’s favorite movies. There’s a scene where someone has asked Jesus some question—I forget what it was—and Jesus rounds on the man, his eyes flashing, and he says “Everyone! Everyone is welcome at my father’s table!”

That’s the truth, y’all. EVERYONE IS WELCOME. EVERYONE IS ALLOWED. EVERYONE IS LOVED AND CHERISHED AND OF INESTIMABLE WORTH.

So, we remember that. We know that. And if we don’t know it, we need to learn it quick.

So, what do we do with this?

What did Gandalf say? “All we can do is decide what to do with the time that is given us”?

Light drives out darkness. Love drives out hate.

Only God can save any of us.

What does God what you to do? What is His call for you, reader? How do you spread light and love into your own little corner of the world?

If the world is “too much with [you], late and soon”, it is OK to step back. Sometimes that’s even necessary. I remember after a really bad clinic appointment, the social worker once told me to go to a bookshop, get a coffee, and then drive home and read.

This isn’t the same as saying, “Ignore what bugs you! IGNORE IGNORE LA LA LA IGNORANCE!”

It’s, “Right now, you are wounded. You are broken. You are sad. You need to do something to stop the bleeding—physical or metaphorical-and heal yourself. Then, and only then, can you go out and face the dragons you need to face.” Someone who is bleeding out in an ER cannot serve anyone, because he is close to death. He needs others to serve him, so that he can live.

Mother Teresa had this written on her “business cards”:

mother-teresa-quote-300x224.jpg

To serve, we have to have all the other steps. We have to be able to serve. We don’t have to be perfect people to serve. But we do have to be able to give, and we can’t give if we aren’t full ourselves.

Nothing can be done without prayer, which happens in silence. “In quietness and confidence shall be your strength.” (Isaiah 30:15) Our actions must always be rooted in Christ. That’s why even active orders have hours of prayer before they go into the world to serve every day. The Nashville Dominicans of St. Cecilia start their day with meditation, lauds, and Mass—they give ninety minutes to God before breakfast and the work of teaching.

“In the world you will have trouble, but take courage—I have overcome the world,” is one of my favorite quotes from the Gospel of John (16:33). I think that right now, in your “June”, you might need this. Tuck it into your heart. Remember that you have to root yourself in Christ, we have to draw everything we do from Him.

Whatever our trouble is, whatever injustice is happening, whatever scourge we’re trying to eradicate—we do it with Christ. We do it with our hearts firm and strong. We follow a Man who often went away by Himself to pray, to get strength and courage. We have to do the same.

If someone doesn’t respond the way you do, that’s OK. God calls us to many different ways. Right now, in this month, I am personally very emotionally fragile. Normally I will get in there and do my bit with gusto and fearlessness. But right now, I don’t have the resources for that, and that’s okay.

Build yourself up. Ask God what His plan is for you. Care about the people in front of you, around you. Change your corner of the world. Do it with God, and do it with the support of other Christians. Let’s build each other up.

Let’s give grace, encouragement, and prayer to each other. Let’s be the church that was known, in the early days, by its love.

Jesus lives. Jesus reigns. Jesus conquers.

That’s what we need to remember.

Wherever you go into battle, take Jesus with you. Root yourself deeply in him. And then do his will.



A Little Bit Stuck?

essaysEmily DeArdoComment
Woman Bathing Her Feet in a Brook.jpeg

Are you feeling like your energy and motivation varies wildly from day to day?
I asked this on twitter the other day, and from the responses I got, I think I’m not alone.

Self-isolation or “stay at home” orders, or whatever you want to call it….it can be hard to drudge up motivation to do things, right?

comfort knitting!

comfort knitting!

So here’s what I’m telling myself—I do the bare minimum every day, and anything else is extra. I have a list of things I want to do, and if I feel energetic and focused, I can knock out things on the list. If I don’t, then maybe I do one little thing, like a load of laundry or clearing off part of the counter. Whatever.

I think we really need to give ourselves grace and space during this time. It’s a really different way to live, and there’s stress about unknown things. Even the basics, like church and school, aren’t happening, and that can throw us off in deep ways.

Right now, I think giving ourselves grace, space, and flexibility are all good gifts.