Emily M. DeArdo

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essays,current projects

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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Weekend Quick Takes!

7 Quick Takes, knitting, current projectsEmily DeArdoComment

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Doing something a little different and giving you weekend quick takes! So enjoy!

We’ll start off with a Patticake photo, per usual….

Taking a nap on her mom’s lap in the yard.

Taking a nap on her mom’s lap in the yard.

(For new folks, Patty is my cousin’s girl and my goddaughter. She is not my child. :) )

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I wrote an essay earlier this week about risk and medicine and…well, things. Sort of COVID related, but it’s more like things I’ve noticed with COVID and….well, thoughts. So take a gander at it if you will. I guess I could call it a “long-form” piece?

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I’ve started working on this Moonwhistle Shawl from Drea Renee Knits and oh my goodness, I adore it.

Ignore all the ends! I’m also fairly sure the bit on wonkiness on the left side will ease up post-blocking.

Ignore all the ends! I’m also fairly sure the bit on wonkiness on the left side will ease up post-blocking.

Here are the yarns I used: Light blue is Wool of the Andes worsted in Whirlpool; Dark blue is Swish Worsted in Marine Heather; and the color change ball is Chroma Worsted in Drawing Room.

This is a pretty easy knit, in that I think I’d great for learning color work, and it’s simple. It’s all knit stitch (garter stitch) and slipped stitches, and one M1L (Make one left), which is explained in the pattern. One of the great things about Andrea’s patterns is that she explains everything, which is so great, and she lists the skills/techniques you need before you buy the pattern, which I WISH all designers did! If you want to check out the pattern for Moonwhistle, here you go.

One of best parts about the design is what she calls the “tweed” sections—where you work with the color change yarn. Oh my gosh this is so fun. So I am addicted to this and am trying to not knit all day, but it’s hard not to when a pattern is this great.

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Reading: The Hour of the Witch, Drums of Autumn, and the last book in Alison Weir’s Tudor Queens series, Katharine Parr: The Sixth Wife, which then led me to go back and re-read the entire series, so I’ve read Katherine of Aragon: The True Queen, and now I’m on Anne Boleyn: A King’s Obsession. The great thing about Weir is she’s a historian first, so her books are all informed on the latest scholarship, which in the case of Katherine of Aragon, Ames it pretty clear that she was not lying to the king about her relationship with Prince Arthur. (Yes, I’m a British history nerd, sorry.)

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I don’t really need a reason to re-read any of the Outlander books, but I’m doing it because I’mw working on my new project! Presenting….

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There is so much good Catholic stuff in the books and even the TV series, and I’ve wanted to do a deep-dive into it for awhile, so I figure now is the time. So I’m re-reading all the books and making notes. I’m also trying to marshal my thoughts on organization—by book, by theme, by….? But anyway, that’s what’s going right now in my research. Very excited for this.

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No movie reviews this week (did you like that? Because I liked doing it), but I’ve been watching some opera. I do love opera. I sort of wish I would’ve loved it more when I was younger, because my voice teacher is an opera singer who now sings with the Lyric Opera of Chicago. But alas. However, I am classically trained! So I love watching opera—I find it much easier to watch than to listen to, if it’s a new work. Once I know it, then I can listen to it. I have quite a few operas on DVD because of that, as opposed to CD recordings. So I pop them in when I’m knitting (or really any time, I don’t need an excuse.) . This week is was La Fancuilla del West.

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And finally, the Ohio bishops have reinstated the Mass obligation, beginning the weekend of June 5/6. Has your diocese re-instated the obligation yet?

Anddd if you’d like to learn more about the basics of Catholicism, check out my ebook, Catholic 101! :)

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.

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.

Billy Love

essays, family, life issuesEmily DeArdo1 Comment
Getting to meet Billy on Sunday

Getting to meet Billy on Sunday

The first post I wrote about Billy is, far and away, the most popular thing I’ve ever written.

I’m so glad that so many people got to know this incredible little boy and his fabulous parents. I’m so glad—and overwhelmed in a good way—by all the comments, prayers, and e-notes I’ve received saying they are praying for Billy and his family.

Sadly, Billy passed away in his father’s arms this morning (Tuesday, March 23).

He was loved, and so cared for, until the end.

These six days they had with him were an incredible gift from God. They were a miracle. I’m sure about that. Billy wasn’t expected to last an hour. Instead, he gave his parents almost a week to rejoice and delight in him—and for us to delight in him as well.

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Tiffany got to nurse him. Bill changed his diapers. They slept with him on their chests, cooed at him, took videos, rocked him, and loved him. Billy grasped their fingers and looked into their eyes. His grandparents and aunts and uncles delighted in him. And so did all of us.

The day they left the hospital, the membrane that covered Billy’s encephelocele began to break down. The neonatologist said this was to be expected. At home, the brain tissue began to bleed. But through it all Billy and his family had the love and support of their family and the wonderful hospice nurses from The Resort. Billy was kept comfortable and was always in someone’s arms. He was unbelievably loved, and only knew love his entire life.

I was so blessed to be able to see him. I was so blessed to see my best friend hold her child, her first-born, to mother him, to see Bill hold his son against his chest and feed him. I stroked his little ear and marveled at his tiny fingers and even tinier nails. I delighted in him.

On Sunday, we heard the gospel that contains my life verse—Jesus healing the man born blind. My verses are taken from the beginning of the gospel’s ninth chapter:

As Jesus passed by, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither this man nor his parents sinned. He was born blind so that God’s works might be revealed in him.”

I don’t know why I was born the way I was—but God does. I don’t know why Billy was born the way he was—but God does.

Maybe we were both born this way so that we can glorify God. I certainly hope so. That’s what gives me comfort, and that’s why I consider this my life verse.

Billy’s short life glorified God. His parents’ faith and love glorified God. The support, community, love, and prayers of all of you for this little family glorified God.

A few weeks ago, Bill and Tiffany’s church had a luncheon for them, to celebrate Billy and to provide support for Tiff and Bill. At the lunch, we made a quilt, where every guest was invited to write something to Tiff and Bill on a square. The quilt was draped over their couch when I went to visit. It is beautiful.

I had brought my Bible with me, and I spent time going through it, wondering what to write. Finally, I settled on one of my favorite verses. It’s the verses that begins the epilogue of my book.

“God himself will be with them;
he will wipe every tear from their eyes.
Death will be no more;
mourning and crying and pain will be no more,
for the first things have passed away.”

 And the one who was seated on the throne said, “See, I am making all things new.” 

—Revelation 21: 4-5


Today’s Mass reading from Isaiah talks about a time when infants will not die after a few days. When I heard that at the streamed Mass this morning, I almost dropped my coffee mug. Billy was dying, and here Isaiah spoke of a new world, where we would all live the lifespan that God appointed us. There would be no more crying, or death, or sadness. We would all live together to old age. Isn’t that what every parent wants for their child?

We all loved Billy. I thank you for all the love that you gave this family, that you continue to give this family. Please pray for them. At this time, the state of Ohio is essentially shut down—I don’t know what’s going to happen with the funeral. Thankfully, their families are local, so they have that support here in town and they can be together. Please continue to pray for them.

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Illness & Piety

Catholicism, current events, essays, health, journal, prayerEmily DeArdo3 Comments
The second station: Jesus Carries His Cross

The second station: Jesus Carries His Cross

A lot of dioceses are dispensing their Catholics from attending Mass; some are shutting their churches completely. It’s a strange time to be Catholic in America—what do we do without Mass?

We know that we are required to attend Mass unless we are sick, find ourselves really far from Mass, or for other big reasons (you’ve got a sick kid and you have to stay home to take care of her). Not attending Mass is a mortal sin, but, like all mortal sins, that means there are three criteria for it: Grave matter, full knowledge, and deliberate consent.

If you live in a diocese where the bishop has dispensed you from attending Mass, you’re not committing a mortal sin if you don’t go. We don’t know a lot about this virus. What we do know is that a person can have zero symptoms and be contagious! That’s scary.

Even before the dispensation came down from Ohio’s Catholic bishops, my transplant team had told me that they didn’t want me going to Mass. Was I super pleased with this idea? No. Am I listening to them? yes.

To me, this is very like life right after my transplant. I didn’t attend Mass for three months, because I was severely compromised. To go would not have been a good thing. (And also, it was an uncomfortable thing. Most Catholic churches have wooden pews. When you weigh 90 pounds, your bones really feel that wood, let me tell ya.)

I am being obedient to my doctors, and not going. My health is important and I know they want what is best for us.

I’ve seen some people talking about how our physical health isn’t more important than our spiritual health. This is true—but, that doesn’t mean that we should be reckless. There are saints who were told not to do so many penances, that they were being too hard on their bodies. It’s a balance.

I am NOT suggesting that we skip Mass just for the fun of it. I am saying that at this time it’s important to think about other people at Mass. (And really, all the time…)

People like me aren’t going. But that doesn’t mean that there won’t be people at Mass who take care of immunocompromised people, or work with them. If they get sick, that’s a big problem. So let’s remember basic good practices.

If you’re sick, don’t shake hands at the sign of peace! Use hand sanitizer. Cover your cough. Leave some space between yourself and other parishioners, so you don’t run the risk of getting them sick. If you have the flu, stay home!

The criteria I use to determine how sick I am is thus: If I would miss work, then it’s fine for me to stay home. If someone said, let’s go to Chuy’s, and I wouldn’t go because I feel awful, then I’m sick enough to not go to Mass.

I can see why some bishops are closing churches—because people aren’t doing what is right and prudent. They’re going to Mass and spreading germs everywhere, in flu season, all the time. This is not cool, folks. Use the best practices I outlined above all the time, not just now!

Also, Masses still happen with out a congregation. Carthusian monks, for example, say Mass everyday without a congregation. I imagine that priests will still say Mass, even if the church is empty.

So, what can you do if your dioceses has shut your churches, or if you are staying home from Mass?

In this time, you might want to check on your neighbors who are sick or older, and see if you can do anything for them to help them out. Maybe you could pick up their groceries for them or something, or put gas in their car.

Just because we can’t get to Mass doesn’t mean that we can’t still practice our faith. Yes, the Mass is the source and summit of our lives. Yes, it’s vital.

But sometimes life intervenes and we can’t worship the way we’d like to. I’ve experienced that a lot in my life.

St. Teresa of Avila once received instructions from God to build her convent somewhere. Her bishop then told her to build her convent somewhere else. Teresa obeyed the bishop, because she knew she owed obedience to him. She said later, when God asked her about this, that she knew her bishop was telling her what to do and she owed him obedience; she might have imagined what God told her to do. (This story was in the book Be Holy. I’m paraphrasing here.)

Keep calm, guys, and carry on—and PRAY. Don’t rage against your bishop and take offense. Pray. If you can go to Mass, weigh if it’s prudent for you and your family. If you go, act responsibly—don’t crowd pews, cover your cough, don’t shake hands at the sign of peace, etc.

The important thing is to pray, even if you can’t get to Mass.

Virus Lent

essays, journal, LentEmily DeArdo2 Comments
My porch, enjoying some nice late winter sun!

My porch, enjoying some nice late winter sun!

OK, NO, I AM NOT SICK.

So if you were worried about that, relax. :)

However, my team is being abundantly cautious, so I am essentially living like I did immediately post-transplant, which means I”m not really going anywhere and no one sick can come to me. Which is actually the general rule, but now it’s just more….heightened. Fortunately my family members who are local work from home and don’t travel much, except my sister in law, but her travel is domestic and so far she’s fine (thankfully!).

So, for me, no Mass. No My Fair Lady on Saturday (sadness!). No doctor appointments like my diabetes education class. And I’m fine: I mean I’ve got the things I need here to keep the house going and clean, to keep myself fed and medicated.

Which brings me to—-

If you have any burning issues that you want me to write about, let me know because now I have time! :) I think my long-thought-about Outlander and Catholicism series might finally take flight!

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I am hoping to keep my adoration hour. I chose it because I am the only one there at the time, and if I’m not going to Mass then I want to be at adoration. Also there are enough seats in there that we don’t have to be cheek and jowl, so there’s plenty of SPACE, and I can wipe down chairs and such with wipes if I want to/have to.

My diocese hasn’t—as of this writing (3/12 at 12:31 PM) cancelled Masses. So Masses are still going on.The governor is limiting big events with crowds and I think he’ll probably come out with an order about that today, banning big gatherings and such to prevent the spread. So far in Ohio we’ve got four cases—three in Cleveland and one in Summit County, which is near Cleveland. I don’t blame the governor for wanting to be cautious.

Let’s keep each other in prayer and let’s be smart, OK? Don’t go to Mass if you’re sick at all. Don’t shake hands at the sign of peace! Don’t crowd people at Mass—let’s give each other room, if at all possible.

I hope we all come through this OK. Praying for all of you—pray for me too? :)

How to be your own health care advocate

CF, essays, health, how to, transplantEmily DeArdoComment
doctor patient.jpeg

Today I’m going to share some hard won wisdom with you!

A friend of mine who also has CF said that we’re the “marines of health care.” And that’s true. We’ve had decades of experience working closely with doctors, hospitals, and medication regimens. And what we think of as obvious is not so obvious to the rest of humanity.

So I’m going to share some tips with you today to help you have better health!

I’m going to start with what is probably the most important tip:

Know your baseline.

What I mean by that is know yourself. How do you normally feel? What’s your general energy level? How much sleep do you normally need—and get—and what do you feel best with? (For me, it’s about nine hours.) How does caffeine affect you? (Or doesn’t it?)

All these things are your baseline—how you normally feel when you’re healthy and everything is chugging along just fine. This even includes stuff like how many times you normally go to the bathroom. (I’m not kidding. For a diabetic, this is important to know—and same with CF.)

You might not have thought about this before, but when you feel “off”, it’s because you’re unconsciously comparing your state to how you normally feel—aka, your baseline.

For example, my right hip tends to bother me on and off. It’s not a big deal, I’m aware of it, it’s been checked out. But if it suddenly became really painful, that would be an anomaly.

I knew that my blood glucose was really high, without even testing it, when I was dropping weight really easily and going to the bathroom more often, and carrying water around with me. Those are all not normal feelings for me.

Knowing how you feel—both physically and emotionally and mentally-is key to judging if something is wrong with you.

I knew that the type of insulin I was on over the summer was wrong for me—on a lot of levels—because I became a really awful person! I was snappy and lost my temper at everything and just hated everything, and this is not me!

So you have to know how you feel normally, so you know how you feel when you’re sick, or when something is off.

All drugs have side effects

The questions are: will you get side effects, and if you do, how bad are they?

People are generally shocked to hear that meds can cause problems. Yes, they can. Heck, water can cause problems if you drink too much of it. If you take too much Tylenol, your kidneys are not gonna be happy with you!

Every medication has side effects. Not every person will experience any, or all, of them.

But a side effect alone is not enough to not take the med.

For example: I used to take cipro for infections. People were always shocked. “Don’t you know that class of meds can cause tendon issues?!” they would cry.

Well, yes, I did (do) know that. But the thing is, I didn’t have a choice. This was what I had to take so, to be honest, I didn’t die.

I lost my hearing because of ototoxic meds. That was a choice we made, so I would not die.

Now, I can’t take cipro or any drugs in its class anymore, because my tendons are starting to get weird with it. I can’t tolerate it anymore. So that means I have fewer options for when I get sick.

I take prednisone daily. I have taken it for 15 years and I will take it until I die. It’s what’s causing all my blood glucose issues. But I can’t not take the pred. I tried to go off it. My body hated it. My joints, in particular, were not really happy. I take nexium, a proton pump inhibitor, even though I know it might cause bone issues and all sorts of other things, but reflux can lead to cancer and rejection, so, again—balancing act. I take immunosuppression meds, because I have to to stay alive, even though it ups my cancer risk by about a factor of ten, especially skin cancer.

Sometimes you start a med, have a rough few days, and then your body adjusts. Pre-transplant, I was on bactrim and cipro and a million other meds every day. At first, this was rough. Eventually, I got used to it.

The lesson here is, if you’re having side effect from a med, and it’s severe, then you need to talk to your doctor about it—especially if you’re having any sort of depression, anxiety, or suicidal ideation. Then, you must call your doctor IMMEDIATELY. This isn’t something to mess around with. Stop the med, talk to the doctor, figure out another plan! There are lots of meds out there! Find what works for you!

You have to be aware of how a med affects you. That goes back to knowing your baseline.

But yes, when you are taking a medication, your body might not like it. That doesn’t mean that it’s a bad drug. It just isn’t working for you, and that’s fine.

If you want to know the side effects of a med, they are easily google-able, or you can ask your pharmacist or your doctor. Every time I go to pick up meds, I get asked if I want to talk to the pharmacist about it. EVERY TIME. So, if you want to know, do that!

You have to know your medical history

You—as in, you yourself—must know your medical history. You must know what drugs you take and why. You must know the dosages. You must know what drugs you cannot take (if any). You have to know what is contraindicated for you.

For example: I can’t have MRIs. I can’t have PICC lines (it’s PICC, not PIC. Peripherally Inserted Central Catheter, folks.), because there aren’t any more spots for them! I can’t have zofran because it makes me vomit. These are all things I have learned and I often have to tell medical professionals these things. Because, they don’t know. Or they haven’t read my chart. (grumble grumble.)

My parents know these things as well. I have my med list and issue list on my phone so I can just whip it out in an ER or a new doctor’s office. It is a good idea to have someone else know your medical history so if you have to go somewhere in an emergency, that person can either say, yes, here’s the deal, or, “here it is on her phone.” (Now, for me, anyone who has read the book knows basically all of my medical history, ha!) I don’t expect people to be able to spout off all of it—except my parents, and they can do it—but I do have friends who know, OK, this is the deal. Especially when I travel with people, I have to tell them things that are relevant, like, me and the sun are not friends. I might have to stay inside for certain hours. I have to check my blood sugar. I might need you to get me juice. Etc.

But you have to be your own advocate. You have to say, I’m sorry, I can’t do that—and why. You have to say, I cannot take that med, or have that procedure, or whatever. (For Catholics, this also includes why you’re not taking birth control pills for contraceptive purposes! Not that you need to go all Humane Vitae on the doctor!)

Sometimes you have to talk doctors off ledges. Sometimes I get a new doctor who doesn’t realize I’m genetically anemic (I have thalassemia minor.) He’ll freak out when he sees my iron counts. But I’ve always been anemic, and we don’t do anything about it. It just is. I’m used to it!

And finally….

Be aware of change

Sometimes you’ll be on a med for awhile and you’ll be fine, and then you’ll notice…issues. That can happen. Sometimes a med builds up in your system and then it causes issues that were not apparent in the beginning. (Ototoxic meds, looking at you!) So if you have a chronic condition, you do need to evaluate. Again, know your baseline. Know what you’re being treated for. Sometimes I have to say, guys, this med isn’t working anymore. And we figure out something else.

Essentially, we all have to be aware of how we normally feel, what we’re taking, why we’re taking it, and our own health history. This enables you to be your own best advocate, which is vitally important.

A Little Retrospective: A Decade Past

fun, essays, journalEmily DeArdoComment
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After reading Erin Napier’s journal post on a decade in the rearview, I felt inspired to do my own, and honestly, these last ten years of my life have been pretty nuts, and thus worthy of a retrospective!

Here we go….

2010: Five Years Into It

In 2010, I hit my five year transplant anniversary, which I celebrated by doing the show Oliver! I went to Duck for the second time with my parents and my sister and enjoyed it just as much as I had the first time I went with Tiffany and her family in 2008. I was blogging but I didn’t have this site yet. I knew I wanted to write a book , but at the time it was sort of an ephemeral idea with me writing a few things here and there.

2011: Unbreak my heart

The year began with The Importance of Being earnest, and heart issues. I had Afib/SVT—we never really figured out which—which led to an admit in January and a second ablation at OSU in April, but I was released before my birthday, continuing my streak of not being in the hospital for my birthday. I did Ragtime that summer, we went to Williamsburg, VA, for family vacation and I loved it. I also moved into Barton Cottage (the townhouse) that year.

2012: New Job

I moved to the Clerk’s office after the 2012 elections, was in The House of Bernarda Alba, and was still writing. I turned 30! :)

2013: So much travel

I went to NYC for my first Jeopardy! audition and saw Once with my cousin Jack. We had a lot of fun that trip. I went to Disney World with my dad and was in Les Miserables that summer and And Then There Were None in the fall.

2014: The last working year

I began the process of taking disability retirement from the Senate, because working full-time was just not working with what my body needed. March 14 was my last day, and I saw The Phantom of the Opera that night with my friend Mary. I went back to Disney World with Dad , was in The Music Man and Hello, Dolly! and made life promises as a Lay Dominican.

2015: Getting it all on paper

I began the process of writing The Book by getting my entire story on paper, thus creating the very first complete draft. Edel 2015 was awesome—I spent my 10th anniversary there and was interviewed by Hallie Lord and Jen Fulwiler for Jen’s radio show. It was a great experience! I had my second Jeopardy! audition in Boston. Dad and I ate at Legal Seafood, Cheers, and a great Italian Restaurant in the North End. I also set up this website! So it’s five years old this year!

2016: Jeopardy!

I was in the hospital in January with pneumonia (booo!) but went to SoCal in April (yay!) to be on Jeopardy!

2017: Digging into my writing

I attended the Making Things Happen Conference and made great progress in my writing from that. I started writing and editing for Take Up & Read. We went to Williamsburg and Duck for vacation!

2018: Working

I started sending out book proposals….and more proposals….and more proposals…..My brother got married!

2019: Gold, Jerry, Gold!

I got my contact with Ave Maria Press, wrote the book in about three months, and my sister got married in Colorado. I was in the hospital when my book cover was revealed and pre-orders opened! And I moved to Orchard House! Oh, and Dad and I went to a Blue Jackets playoff game—another thing I could check off my bucket list! :)

2020: The book!!

The book was published. I’m going to New York in April. And it’s my 15 year anniversary in July.

Also coming up: Seeing My Fair Lady with Dad in March!

Woooooo!

Plan A, Plan B, Plan C....

essaysEmily DeArdo2 Comments
Two sisters on a terrace…..waiting for a guy…..

Two sisters on a terrace…..waiting for a guy…..

If you’re on Twitter, and you follow me (Or really, follow Catholic Twitter), you’ve probably noticed the ongoing debate about women and college. There are people who think that, if a girl wants to be a stay at home mom (SAHM), that she doesn’t need to go to college. She doesn’t need the degree, she doesn’t need debt, she just needs a husband! Then all her problems will be solved!

Guys. (Ladies?) Let Auntie Em tell you some things.

Number 1: You can go to college without debt

You can. Really. It’s true! I did it! Part of that was because my parents had saved money for me (and my siblings). Part of that was that I chose a college we could afford—and by afford, I mean that my parents told me, very early on (like, freshman year of high school) that if I wanted to go there, I had to get scholarships, because we couldn’t afford it without them.

I got said scholarships. With scholarships, and my parents’ savings, and the savings bonds I had been given as gifts since I was a wee bairn, I went to college without debt.

So, yes, it can be done. (I realize it cannot be done for everyone. I know I had good parents.)

But that’s not really the point here.

The point is, girls—you need a plan.

Number 2: The man might not show up

I was engaged in college. Yes I was.

I am not married now.

We didn’t get married. Which was a good decision, on the whole (that’s not a smear on the guy. It’s a fact based on where I was at the time, and that we were incompatible, and we were engaged for the wrong reasons. But not going into that here!).

But, my goal, as a 19 year old, was to get married, have kids, and be a SAHM. That’s what I’d always wanted to do with my life.

Honestly, it’s still what I want to do with my life.

But….I’m 37. I can’t have kids. (Naturally, anyway. I’d adopt!) And I’m not married.

Some people—and yes, these people exist—would say that I shouldn’t have left my parents’ house, that my father should still be “in charge” of me, and that I am doing everything wrong by having an independent life. Because, apparently we all live in a Jane Austen novel where unmarried ladies are supported by their fathers or brothers forever.


If you want to see how awesome that was….remember the scene in the 1995 Sense and Sensibility, where John is talking about how much he’ll “give” his mother and his sisters to live on, and his wife keeps wanting it reduced? Yeah. That. Fun times!

So, look, ladies.

The man might not show up, no matter how much you want him to. Or he might show up really late in the game!

And until then….you have to be able to support yourself. That doesn’t necessarily mean college, but it does mean a skill set that you can use to feed, clothe, and house yourself!

Number 3: The kids might not show up!

Do we really need to say this? I mean, I think everyone knows someone who has trouble getting pregnant, or can’t have kids. So if you want to be a SAHM…..the “mom” part might be an issue.

And I’ve been there. I am there. I understand how sucky that is, trust me.

So if the kids don’t show up, what are you going to do?

Think about it. You might be perfectly find staying home and taking care of the house and husband and yourself sans kids. It’s an option. But….think about it.

I’ve always cringed when I watch shows like the Duggars or something, where everyone assumes they’re going to get married.

That’s not true, guys.

Or, they assume kids will come.

Also not true, guys!

I fully, fully support SAHM life. I am the daughter and granddaughter of SAHMs. I love them. I wanted to be one. My mom is amazing—she worked before I was born, she worked before she met my dad, and boy howdy she “worked” after, just without a pay check…..she can give (and constitute) IV meds, she can do burn dressing changes, she accesses and flushes my port every month, she is awesome. There are times when she seriously knows more than some nurses do. (My sister is a nurse, so no shame being cast here, guys.) Without her, I know I wouldn’t have been as healthy as I was. So when I say I love SAHMs, I do—I wanted to be one.

But ladies. We have to think about other things. We have to have Plan B. We can’t sit around singing “Someday My Prince Will Come” and waltzing with brooms. I mean, we can, but that’s a leeeeetle weird!


So, ladies—I am here to tell you.

Have a plan that doesn’t involve getting married. Because you might need it.

edited to add:

Even if you do get married, it’s good to have skills.
Your husband could die! He could get hurt or sick! He could become disabled!

And then you’d have to be the one providing for the family.

So, think about it!

Greetings From the Resort

essays, healthEmily DeArdo3 Comments
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Yes, I’m back in the Resort.

For new readers, I started calling Children’s Hospital “The Resort” once I started working, because all my vacation days ended up being spent here, and the name stuck.

On Thursday I started having a lot of abdominal pain. After I talked to the nurses at clinic, they mentioned that I had gall stones on my last CT scan that I had when I had the Awful, Nasty Stomach Bug. So back I went to the local ER (It’s run by a local hospital, so it’s a good one, not like some tiny little thing), where they ran tests and determined that I had….pancreatitis.

My old friend!

I haven’t had a bout of this in years, but once that diagnosis came in, I knew what I was in for. So Mom and I went back to my place, I packed a bag, and dad drove me to Children’s, where I am currently writing this.

The treatment for pancreatitis is: IV fluids, anti-nausea meds, and pain meds. That’s in. Blood is drawn daily to see how the lipase (a pancreatic enzyme) is doing—with pancreatitis this number is high. We want it to be around 50 or so, and today mine was 480 sometimes, which is still better than the 1600 it was when I was first admitted!

Giselle the Unicorn.

Giselle the Unicorn.

So, all in all, not too bad, except for being in a hospital, but even that’s not bad, because I don’t really get bothered. There’s no fancy treatment for this, just meds through an IV line. At some point I’ll try eating “clears” (broth, jello, etc.) and if that stays down then we’ll try more substantial foods.

So, that’s where I am right now. But big news coming later this week! (If you already subscribe to the blog, you know what the news is….)


Endocrinology (Or: Not Personal Failure!)

essays, healthEmily DeArdo1 Comment
Stacks of Wheat (End of Summer).jpeg


So the past two weeks have been sort of nuts, and hence why I haven’t written. So I’ll bring you up to speed and explain the title.


After my last post, I got a killer stomach bug, and I ended up in the ER. When you’re me—meaning, you take a lot of meds, you have blood sugar level issues, and you need to be able to keep things down—you don’t really “wait out” a stomach bug. (In fact, I learned today I get to give myself four hours before going to an ER for treatment.)

So after a day of nausea and 12 hours of vomiting (WHAT JOY) and abdominal pain, I took myself to the local free-standing ER, which is excellent. My mom met me there, Dad drove my car home, and four hours later I’d had IV fluids, anti-emetics (anti-vomiting meds), and pain meds, I felt a lot better, everything calmed down, and I got to go home. I spend Tuesday sort of out of it. Wednesday had a ton of energy and did laundry and some taking out of trash. Thursday, pretty back to normal—but I needed to take my car to the service place to get a tire patched. Friday, normalcy! Saturday, Harry Potter tea with my writers ‘ group (post on that coming), and I went to Mass for the first time in two weeks. Hallelujah!



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So, that was last week. This week, the tire repair didn’t hold, so I had to call AAA to put the spare on on Monday, get the tire checked out Tuesday, to find out I need a new tire, which will be on my car tomorrow, which meant that I had to borrow my mom’s car to get to my endocrinology appointment today.

Honestly, I was really freaked about this appointment. I had visions of insulin shots multiple times a day and constant finger sticks and food restrictions and all sorts of evil things conjured by the word “diabetes.” I really, really, really didn’t want a heavy-duty diagnosis. I was freaked out.

I had a long appointment today (2 hours), where I met with great, wonderful, smart people, who went over my history and all my labs with a fine-tooth comb. They looked at everything. They asked about family history. The fact that my mom has five sisters, and that my grandma is almost 90 and in pretty darn good health, is great for my doctors because there’s a lot of female family history to look at when we’re talking about health indicators.

My endocrinologist thinks that what I have is a type of CF related diabetes (CFRD), which is not Type 1 diabetes, even though insulin is involved, and it’s not type 2 diabetes. It’s its own special thing. But what this did for me was release a big burden I’d been carrying around—the idea that I had done this to myself. That if I had done more or tried harder or whatever, that I wouldn’t have been in that office.

That’s not the case. Dr. W (the new doc) said that just about every CF person will get CFRD at some point, because we’re living longer. The severity will vary, but it’s probably going to happen. Throw in the fact that I’m on three drugs that mess around with blood sugar production and regulation, and, yeah. This was, most likely, going to happen.

We don’t exactly have a plan yet, because we need data, which will be provided by two things:

Me checking my blood glucose level at various times a day

Me wearing a continuous glucose monitor (CGM) for a week. This little do-dad checks your blood sugar every five minutes with a little sensor. So we’ll get tons of data, cascades of data! And with that data, we can make a plan.

The other great thing as that this doctor asked me if I was OK with this plan. That’s so important to me. I want to be OK with what we’re doing. And with this doctor, I do. I feel secure and I trust her to do the right thing to get things under control.

So even though I’m going to be doing a lot of finger sticks over the next few days/weeks, I don’t really mind. Because I don’t feel like a total failure, like I brought this upon myself. I didn’t. This is the result of being 37 with CF and a double-lung transplant. It’s the way it goes.

We get the data, we make a plan, and we move on.



Going on Retreat Part Three: Sunday Morning

essays, CatholicismEmily DeArdoComment
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Part One is here

Part Two is here

My alarm went off at seven the next morning, and I sort of hustled, because breakfast on this day is continental, served in the lounge; it’s mostly cinnamon rolls and bakery things, and if you’re slow, the good stuff is gone. :) (Good stuff meaning danish, in my world). So I hurried, dressed in my Sunday Mass clothes and got a cherry danish (win!).

After that, I went to the chapel to pray lauds before the closing of adoration at 8:15 by Fr. Stephen. (Even if you can’t make a retreat, consider going to adoration? Even if it’s five minutes! Go stop by and say hello to Jesus! Get to Mass five minutes early, if there’s no adoration chapel where you live.)

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After the close of exposition and benediction, we had the last conference of the retreat, on Confirmation. This was followed by a bit of Q&A, and then the last Mass of the retreat.

After Mass was over, we could talk—silence was lifted. So brunch was a noisy, happy affair of everyone chatting over quiche and apple pie bars. I enjoyed talking to the women at my table (especially Olivia) and getting to know them better.

When you spend a weekend in silence praying with people, a closeness forms, but it’s a weird closeness, because you feel close to people you don’t know anything about! So it’s nice to learn a little more about them.

After brunch we cleaned out our rooms and left. “Cleaning out your room” means putting the trash bag outside your door, stripping the bed and stuffing the sheets and towels inside the pillowcases to be picked up, and making sure you didn’t leave anything behind.

I was home a little before noon, and I spent the rest of the day taking a nap, unwinding, and getting mad at the Ravens during the Ravens-Steelers game.

(Me to my mom: I hate the Ravens.
Mom: You just got back from retreat, you can’t hate anybody!)

So, that’s what I did on my retreat.

There are things I could share—how I pack, what I bring, etc.—I could share notes with you….or I could answer your questions! If you have any questions about retreats, let me know in the comment box and I’ll answer them!