Emily M. DeArdo

author

Catholic

Lent Week 3: Call Outs, Podcasts, and Book Lists

LentEmily DeArdoComment

We hope Week 3 of Lent has gotten you to a place to recognize the things in your life that have been hindering your relationship with the Lord and you’re now working on how to create discipline in your life. It seems that sometimes we fast one thing and still allow other things to “fill in” that time we were intending to dedicate to the Lord. Don’t beat yourself up when this happens once, but don’t let it keep happening with excuses. Let’s all keep a dedicated mindset of discipline to honor God with our fasting, prayer, and willingness to give of ourselves to others (whether time, volunteering or by monetary means).

Callouts, Podcasts, and Book Lists

Emily really loved to root on her friends in their work and endeavors for the Lord’s Kingdom so this week we wanted to highlight some of them and other resources for Lent.

Image of Jennifer Fitz

First, a good friend of Emily’s, Jennifer Fitz, author of the book Lord, You Know I Love You!: A Discernment Retreat Using the Great Commandment. We believe her book will be a great tool in helping you develop better discernment in your life through helpful instruction and contemplative questions. Her blog can be found here.

Jennifer also did a wonderful write up of Emily’s book as well that can be found here.

Second, another amazing conversation Emily had with Katie Prejean McGrady for a Lent podcast miniseries from a few years ago (presented by Ave Marie Press).

Be sure to check out the other 7 episodes in the miniseries, because each author shares their unique perspectives on different Lenten topics.

Tribute image of Emily DeArdo from Ave Marie Press.

And lastly, Ave Marie sent out a wonderful email tribute to their subscribers about Emily (Image above is taken from that email) and we are so thankful for their partnership with her during the last few years in getting the word out about her book to others. We want to return the favor and let you know that they a wonderful Lent resource book list that we think would be helpful to you in this season.

Pick up a copy of Emily’s book:
Amazon
Ave Marie Press
Seton Shrine

Lent Week 2: Live Life Boldly

Emily DeArdo2 Comments

Bible Verse from 1 Peter 5:10 that says, “And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.”

We are a week into Lent, and we hope it’s been a meaningful time that has already begun to reveal Christ’s goodness and mercy in your life while you dedicate time to Him.

The following tribute, titled “A Life Lived Boldly”, was written by Emily’s friend Fr. Philip Humbert Kilanowski, O.P. We thank him for his willingness to share such a beautiful reflection of Emily’s life through his eyes in light of the Lent that is upon us. We hope that as you read, you’ll consider your own life and ask the Lord how you can deny yourself the tendency to make excuses while feeling self-pity for misfortunes and instead turn your difficulties into praise. Live life boldly!


She was born on Good Friday.  And it was snowing.  How’s that for an entrance?

Emily always lived her life close to the Cross—as if she was chosen for it.  Her sufferings read like a litany: periodic seizures as a young child, cystic fibrosis from age 11, multiple cases of tuberculosis, a rare virus that put her in a coma for two weeks during college, 16 bouts with pancreatitis, diabetes, a heart condition that required surgery—and I haven’t even mentioned the double lung transplant that, no doubt, extended her life, but also left her with permanent hearing loss and a scar the length of her right forearm.

And yet, once you met her, you never would have known that she suffered through any of this.  She never let any of this get the best of her, and remained as joyful and feisty as ever.  She could hold a conversation using just movie quotes and show tune lyrics.  She would fiercely debate all comers not only in religion or politics, but over who was the greatest hockey player of all time, or what constitutes an authentic Italian restaurant.  She would even casually downplay any trip to the emergency room, and called any overnight stay in the hospital a trip to “the Resort.”

So you may wonder, what made all of this possible?  How could she keep so cheerful and lively, and live her life so boldly, in the face of such great suffering?

Grace. Only the grace of God, the grace that comes to us through the Cross of Jesus Christ, by which we are saved, could enable Emily to have carried all her crosses with joy.  This grace is the free gift of God most high, and through the lens of grace, Emily could see that every day of her existence, as weak and fragile as it was, truly was a gift to be cherished and used well, because God Himself, in the Person of His Son, took on all the weakness and fragility of our human condition to save us from our sins and from death itself, coming into the world that we “may have life, and have it more abundantly” (John 10:10).

And Emily certainly lived the life that she had to the fullest, never letting any setback keep her down.  So her weakened hearing prevented her from a singing career?  She lived out her passion for musical theater with a long string of chorus roles in community theater productions.  So she had to quit her job in the state government after missing too many days of work?  She retired early and started a second career as a free-lance writer.  So she wasn’t able to give her life to God in a monastery of cloistered Dominican nuns?  She joined the Dominican Third Order and lived as an exemplary lay member of the Order of Preachers: teaching the basics of the Catholic faith in the classroom, in her writing, and in conversations with her Protestant friends; preaching the truth of God’s grace with her witness on social media, at conferences, and on Jeopardy!; and making known the gift of God in the only book she published in her lifetime: an autobiography arranged, not in chronological order like most memoirs, not in dramatic order like a Christopher Nolan movie, but according to the Stations of the Cross—as only she could.  And so what if she was never married, and was unable to bear any children—something with which she struggled her entire life?  She showed her love and her intense loyalty to her family, to her godchildren, and to her friends—of whom I am blessed to call myself one.

And I remain forever indebted to her for driving me 100 miles to the Dominican novitiate in Cincinnati to begin my religious life and my path toward the priesthood, at a time when I could not trust anyone in my family to bring me there.  (We got a lot better!)  Emily herself was discerning a vocation to religious life at the same time, and we listened to Beethoven’s Ninth Symphony in the car on the way there to celebrate this new beginning.  My novice master, upon seeing her, proclaimed, “You had a woman bring you here?  That’s bold!”

We have remained good friends for nearly fourteen years, even if I had to miss her final promises as a Lay Dominican because I was the godfather at my oldest niece’s baptism, and she had to miss my ordination because she was a bridesmaid at her brother’s wedding.  Her prayers have certainly sustained me throughout my time as a Dominican friar, even as I bore my share of the Cross, and even as I administered the Sacraments to her—and no doubt they will continue, for as both St. Dominic and St. Thérèse of Lisieux have said before her, she will spend her Heaven doing good on Earth.

For one who, as the Psalmist said, was “wretched, close to death from [her] youth” (Ps. 88:16), Emily always sought “the things that are above” (Col. 3:1) and overcame the wretchedness of her condition with anticipation of the joy of eternal life.  She could tell that her time in this life was short, even more so lately.  She made her only overseas trip to one of her ancestral lands, Scotland, just this fall, and wrote a brilliant article on her experience with not only her transplant, but also with how God’s providence has worked in her life, this past year, that reads now like a last will and testament.  Even as she checked into the Resort one last time in the closing days of Advent, she faced it with her signature sense of humor.

And so the woman whom I once described as “a radiant soul trapped in a body held together with duct tape,” who was born on Good Friday, ended up dying at Christmas—but she had to wait until the seventh day, because that’s when it finally snowed.  How’s that for an exit?  Emily met her Maker on the same day on which the Church sings the Te Deum in thanksgiving to God for His benefits at the end of one period of time, and on which the orchestra in Tokyo always plays Beethoven’s Ninth Symphony to celebrate the end of the year and mark a new beginning.

And even in death, Emily carries out her vocation as a Lay Dominican, preaching and teaching the Truth who is Jesus Christ for the salvation of souls.  So what can we learn from her, especially now in this season of Lent?  What has she taught us?

First, do not be afraid of the Cross.  The world often says that all suffering is to be avoided, and that a life full of suffering is not worth living at all, but Emily has proven otherwise with the way that she lived her life and shown how God can work great good even through suffering, just as He wrought our salvation through the suffering and death of His Son.  Following her example, we too can offer the pain and misfortune of this world along with the sacrifice of Christ on the Cross, for as the Lenten hymn says, “For only those who bear the Cross can hope to wear the glorious crown.”

Second, acknowledge your limitations—and then live your fullest life within them.  So often we hear of people trying to ignore their limits, or trying to be someone that they’re not, but while each of us is limited by our own bodies and minds, and our human nature, it is this same shared human nature that gives us our dignity and our capacity for the infinite God.  Emily demonstrated this with her ability to bounce back from setbacks and find a home, a place in the Church, and a task that she carried out with her writing to build up the Kingdom of God—and to enjoy life along the way.  We also can find how God would like to use the gifts that He has given each of us for the common good, and in doing so to live the most fulfilling life we can, by following the words of St. Catherine of Siena: “Be who you are, and you will set the world on fire!”

Third, and last, while many say to “live each day of your life as if it’s your last,” that kind of saying can often be twisted to encourage unreasonable pleasure-seeking.  Emily would rather say, “Live each day as it it’s the beginning of eternal life.”  For while she was born on Good Friday, she celebrated her last birthday on Easter Sunday, the first and only time in her lifetime that the dates coincided, as if it had to be that way.  She acknowledged all of her life after the transplant as borrowed time, and even compared the event to the Resurrection in her writing, but still acknowledged it as only a shadow of the glory to come, a glory into which, we pray (and for which I have seen signs), she has entered.  But we already have “a pledge of future glory,” in the words of St. Thomas Aquinas, here on Earth: with the Real Presence of Christ in the Eucharist, to which Emily was so devoted, and as God, the Father, Son, and Holy Spirit dwell within our souls by the grace of Baptism and the other Sacraments.  Truly, eternal life begins here and now, and Emily reflected that truth by radiating the light of Christ from within her.  We can do the same, showing the life of God to those we meet in this world, while keeping in mind that we are meant for a life after death, which is the only way that our lives can be fulfilled.  For in her own words, Emily tells us, “Remember you will die—and then get to living.”

So as we learn from Emily, and as we miss her, let us also pray for her—or if we are so bold, pray to her—that we all may be reunited by the grace of Jesus Christ, who, as we sing in the Te Deum, “overcame the sting of death, and opened the Kingdom of Heaven to all believers.”

Fr. Humbert Kilanowski, O.P. is a Dominican friar and priest who teaches mathematics at Providence College in Rhode Island.  He hails from Columbus and met Emily at a Lay Dominican meeting at St. Patrick's Church, the friars' parish in town, in Lent of 2010, and joined the Order that following summer.

Ash Wednesday 2024: Remembering Joy in Suffering

LentEmily DeArdo1 Comment

Hello everyone!

Knowing how much Emily loved Jesus and spent her time serving Him and spreading her faith, we couldn’t let Lent or the time leading up until the Holy Resurrection Easter celebration pass without doing something special. For this Ash Wednesday, we wanted to share some former content from Emily that we think will bring encouragement and the Lord can use to guide you.

First, we wanted to share archived videos from Emily of her book club commentary on each chapter of her book, Living Memento Mori. These would be great if you’re using her book for a book club or for your individual journey through as well. These are housed on Facebook, so please sign in to access them
(Click the image below).

Click the image to access Emily’s archived commentary videos for Living Memento Mori.

“A life that has suffering can still be a life of joy.”

Emily had a great conversation with Kyle Heimann in February 2020 in which she talked about some of the things she was going through and how her book was her life and not just a book. She wrote it with the hopes of it reaching others facing similar trials or needing some hope. Our quote from the interview was, “A life that has suffering can still be a life of joy.”, and we hope you all can take time to meditate on that with the Lord as we go into Lent.

Lastly, we plan to post more helpful content over the next 6 weeks of Lent up until Good Friday. There will be special messages from those who knew Emily, more videos, and content Emily shared previously. Please comment if you have anything specific you’d like to see touched on in the coming weeks.

May whatever you planned to fast be a holy and pleasing offering to the Lord. May He fill you with strength and his protection as you grow closer to Him.

Deo Gratias!

Catholicism, CF, life issues, politicsEmily DeArdo1 Comment

On the Solemnity of the Sacred Heart of Jesus, it is so appropriate that one of the worst SCOTUS decisions in history is overturned, joining Dred Scot and Plessy on the ash heap of history.

Every since I was old enough to know what abortion was, I—and so many others—have prayed and worked for today. This is a victory for the pro-life movement, and I don’t think it’s a bad thing at all to take today and celebrate and give thanks for this.

I am happy on a more personal level as well. If you’ve read my book, you know that I have often had people tell me that people with genetic diseases are not “worthy” of living, because our lives are too hard or we suffer.

Ninety-six percent of babies who are discovered to have CF in utero are aborted.

Today, that number will begin to decrease, and more people like me will have a chance at life.

It’s important to note that Dobbs doesn’t make abortion illegal in the United States. Instead, it throws the matter back to the states (which is where it should have been all the time.). Every state can determine their own abortion laws.

This is not the end of the pro-life movement. In the words of Winston Churchill, “It is the end of the beginning.”

We know that there is work to do to change perceptions. We know that more pro-family legislation is needed, and we need to continue to support the work of maternity/crisis pregnancy homes, pro-life charities, and other supportive networks.

If you want to contact your state legislators about this, be sure to do it politely (always, please, especially if you’re calling them).Let them know that you support legislation that helps the vulnerable. See what your state already has and then work to support it, financially, materially, or with your time. I’ll be compiling a list of resources later, but you can always start with the Sisters of Life, who do such great work in the US and Canada.

And let’s stop talking about how children are barriers to our lives, OK? Let’s stop talking about how women have “fewer rights” then men. Women, it’s time for us to stop believing the lies that the sexual revolution taught us. Sex is not free. Having sex with multiple partners is not liberating. Let’s reject this mindset for the lie it is. Let’s teach our daughters that. Let’s not continue to perpetuate a lie—which is really a malicious, twisted lie—that sexual freedom is a good thing, that we are “entitled” to do whatever we want, when we want it. That’s a perversion of our freedom.

There are certainly times when women find themselves in situations that they didn’t expect. The pro-life movement is there for them. We need to champion life in all its stages, and Dobbs gives us the framework to start doing that legislatively—but it also gives us the freedom to start doing more outside of the statehouses, to step up our advocacy and demonstrate that it’s truth that sets us free.

Women deserve better than abortion. Children deserve better than abortion. We all deserve better than a culture that takes innocent lives and treats them like garbage, and cloaks its satanic mission in words like “care” or “health decisions” or “choice”.

Today is a victory for life.

Let’s celebrate it, and then continue our work.

(NOTE: normally, I let the combox be totally open. But I will delete any comments that have bad language on this post, OK? I would do that anyway, but….just a reminder.)

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.

For Lent: Hosanna

Take Up and Read, Lent, prayerEmily DeArdo1 Comment
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Hosanna is the new Take Up & Read offering for Lent, and she is so lovely!

I know I say that about all our books, but guys, she really is.

ESSENTIALS:

Hosanna covers the Gospel of Matthew
It runs from Ash Wednesday (ahem, next week!) to Easter Monday, so it’s the entire season of Lent!
Extra deep dives on the Beatitudes (photo below), and special Scripture for the triduum!

A variety of contributors, as always, and gorgeous art by Kristin Foss.
Plenty of space for journaling!

Available on Amazon

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SCRIPTURE MEMORY every week.

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Here are the deep dive into the Beatitudes pages!

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Daily Scripture written out, with plenty of room for lectio divina on the next page.

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On Saturday, we give you a selah day , meaning time to relax and go back and do pages you may have missed, or just check in with yourself, your spiritual life, and how the week went for you.

All of these books are a true labor of love—we love writing them and making them for you, but we really love sharing God’s Word with you! Come join us this Lent!

A Friday surprise--quick takes!

books, behind the scenes, current projects, Seven Quick Takes, travelEmily DeArdo2 Comments

I haven't done one of these in forever, so maybe it's time to do them again? :) Linking up with Kelly! :) 

1. 

Dad just got back from his trip to London for a DevOps conference (DevOps is IT related stuff, for you non tech geeks out there). I was a just a little jealous, especially since he got to go to Westminster Cathedral for Mass and see Buckingham Palace and just be in London, which is really the greatest city in the world. 

Westminster Cathedral 

Westminster Cathedral 

2. 

He also brought me back the papers, which delight me to no end. I love getting papers from other countries. The first thing I noticed is how big they are? No American paper is this big anymore. It's amazing!

IMG_7374.JPG

 

So yeah, I'm slowly savoring the reading of the papers. Because it's just fun, and that probably makes me a nerd. But a nice nerd. :) 

3. 

I always knew that London was fairly far north, but in checking the weather for my dad's visit, I noticed that it's a LOT farther north than I thought--the sun was rising at 4:30 AM! That's just amazing. But also, in the winter, London has to get dark pretty quickly. Sort of sobering. But I do think it would be cool to see one of the white nights, or even a sunrise at 4:30 (provided I could go back to sleep after seeing it. :-) 

4. 

Yes, my "desk"--my kitchen table--is a mess. I've got SO many things going on right now. I've started writing a new book (YES! Wheee! Let's hope someone wants it!) about churches and accessibility. I've been getting new library books like every day since the library actually has books I want to read, and they can be delivered to my local library so I don't have to drive all over creation to get them (our library system is huge).  I've been working more on my sketching, and I've been packing because we're going to Pittsburgh later today. So yes, it's nuts, and my table is crazy. 

5. 

Also, Catholic 101 is currently on sale for FIVE BUCKS! If you don't have it, you can grab it here. This is the cheapest it will be all year! 

6. 

I've been knitting, too, even though the hand thing took a bite out of that, but I finally got some more yarn for my scarf project so I'm back at that. I promise a Yarn Along next week!

7. 

And I also promise to do a reading round-up soon. I've been reading so many books that I need to talk about them. Soon, I promise!

 

Daybook No. 120: Our Lady of Guadalupe

Catholicism, DaybookEmily DeArdo1 Comment
The Our Lady of Guadalupe mural at the National Basilica 

The Our Lady of Guadalupe mural at the National Basilica 

Outside my window::

It's raining. It was snowing earlier and my car was covered this morning.  It's also been pretty cold but at the moment it's warm enough to rain and not ice, which is a blessing. Really. 

I'm wearing::

leggings and a blue t-shirt

In the CD player::

the Christmas playlist. 

Listening to::

Outlander Season two, episode one. Watching the series again. :) 

Reading::

Fire Within (more on that below),  O Jerusalem (A Russel-Holmes book--it's book 5 in the series); The Best Yes by Lysa Tekurst, for bible study, and I Believe In Love, which is the Well Read Mom book pick this month. (No, I'm not a mom, but I love this group.) 

Living the Liturgy::

Today is the Feast of Our Lady of Guadalupe, which I've talked about here. Here's a little bit from that piece: 

Mary appeared to Juan Diego four times, beginning December 9, 1531, at Tepeyac. She spoke in Juan Diego's native language and asked that a church be built on that site in her honor. When he went to the local bishop, he (like most bishops and priests in these accounts) asked for a sign. On December 12, Juan Diego saw Castellian roses at the foot of Tepeyac, which weren't indigenous to the region. He filled his cloak (ilma) with the roses, and presented them to the bishop. However, the roses weren't the only miraculous thing--the interior of the tilma was imprinted with a picture of the Lady as she appeared to Juan Diego. (For technical information about the image on the tilma, see this Wikipedia article.) 

She is also the patroness of Mexico, the Americas, the Philippines, and the unborn. 

So if you want to eat Mexican food today in honor of Our Lady, I won't stop you. ;-) Or Mexican Hot Chocolate! :) 

Tuesday: St. Lucy. Who doesn't love St. Lucy/ St. Lucia? Have some St. Lucia buns! If you're a woman of a certain age (ahem, my compatriots), dig out your old copy of Kristen's Surprise and find your Kirsten doll. (I may or may not have a Kirsten doll. I may or may not have her St. Lucia outfit. I ADMIT NOTHING. :-P)

On Wednesday, it's the feast of St. John of the Cross, who wrote the "Dark Night of the Soul", and many other spiritual classics. He was a contemporary of St. Teresa of Avila, and at one point was her confessor and spiritual director. I'm reading Fire Within right now, about both of them, so my spiritual reading is timely! (It's a great book. You need to read it slowly. It's long. But it's great.) Since I've given you food recommendations for every other day, I'd go with something appropriately Spanish here. Or, you know. Tacos again. 

And then on Saturday, it's time to get excited, people. It's the beginning of the O Antiphons, and it's a week until Christmas Eve! 

Around the house::

Getting ready for Christmas with the rest of the housekeeping. Wheeee, right? :) And my dishwasher is broken, so I'm hoping the guy will be out to fix it today. 

Fitness and Creativity::

I've been trying to do a sketch every day this month, and I've been keeping up with it pretty well. My goal is to finish my current sketchbook by the end of the month. I've got about 13 pages to go, so it's definitely doable. 

Fun Links:: 

A Christmas song for you!

 

(Or, as it was fondly renamed in high school choir, "Do you know what I hear".....yes, it's very easy to mix up all the "hears" and "sees" and "says".....) 

 

Holy Week 2016

CatholicismEmily DeArdoComment

All's pretty quiet over here, for Holy Week and the Triduum. Time is being spent contemplating so, in the Dominican fashion, I can "share the fruits of contemplation." 

In a special way, let's pray for Belgium, another country added to the sad role of those affected by terrorist acts. Let us pray that terrorism will cease, and that the Prince of Peace can bring us peace. 

See, my servant shall prosper, 

he shall be raised high and greatly exalted. / Even as many were amazed at him--/so marred was his look beyond human semblance/ and his appearance beyond that of the sons of man--/so shall he startle many nations, / because of him kings shall stand speechless; / for those who have not been told shall see,/ those who have not heard shall ponder it. 

Who would believe what we have heard? / To whom has the arm of the Lord been revealed?/ He grew up like a sapling before him, / like a shoot from the parched earth; / there was in him no stately bearing to make us look at him,/ nor appearance that would attract us to him./ He was spurned and avoided by the people,/ a man of suffering, accustomed to infirmity,/ one of those from whom people hide their faces,/ spurned, and we held him in no esteem. 

Yet it was our infirmities that he bore,/ our sufferings that he endured,/ while we thought of him as stricken/ as one smitten by God and afflicted./ But he was pierced for our offenses,/ crushed for our sins;/ upon him was the chastisement that makes us whole,/ by his stripes we were healed./ We had alone gone astray like sheep,/ each following his own way;/ but the Lord laid upon him the guilt of us all.

Though he was harshly treated, he submitted/ and opened not his mouth;/ like a lamb led to the slaughter/ or a sheep before the shearers,/ he was silent and opened not his mouth./ Oppressed and condemned, he was taken away,/ and who would have thought anymore of his destiny?/ When he was cut off from the land of the living,/ and smitten for the sin of his people,/ a burial place was assigned him among the wicked/ and a burial place with evildoers,/ though he had done no wrong/ nor spoken and falsehood./ But the Lord was pleased/ to crush him in infirmity. 

If he gives his life as an offering for sin,/ he shall see his descendants in a long life,/ and the will of the Lord will be accomplished through him.

Because of his affliction/ he shall see the light in fullness of days;/ through his suffering, my servant shall justify many,/ and their guilt he shall bear./ Therefore I will give him his portion among the great,/ and he shall divide the spoils with the might,/ because he surrendered himself to death/ and was counted among the wicked;/ and he shall take away the sins of many,/ and win pardon for their offenses. 

Isaiah 52:13-53:12

 

Making the Country Accessible: Thoughts on the Americans With Disability Act

transplantEmily DeArdo1 Comment
President George H.W. Bush signs the Americans with Disabilities Act in 1990. 

President George H.W. Bush signs the Americans with Disabilities Act in 1990. 

Although I don't generally call myself this, I'm a disabled American. (And no, I don't use a wheelchair.) The Americans with Disabilities Act (ADA) made my life a lot easier before transplant--but post-transplant, I see a lot of places where it needs some work.  The Act is 25 years old, so it's a good time to think about this. 

I'm inspired to write about this because most people, when they think about the ADA, think about people who are mobility-impaired--mostly, people in wheelchairs, or who use crutches or canes, or people who are blind. But let's think about people who are Deaf or hard-of-hearing, and people who have respiratory or heart problems. Let's broaden our scope. 

Pre-transplant, I used a handicapped placard for my car. I came upon it rightfully, because the amount of distances I could walk, especially after my stint in the ICU my sophomore year of college, was very limited. Walking around my college campus could be difficult, especially with my backpack full of books. But if you looked at me, I didn't "look" handicapped. I looked fine. I also had about 20-25% lung function. 

Lesson 1: Don't judge someone's handicapped status by the way they look

I was very grateful for elevators in my lecture halls, and in other places. There was no way I was going to be climbing lots of stairs (just ask my friend Chris, who had to carry me up the last few flights of the Empire State Building when we visited NYC during Christmas break our senior year. Yeah. Let's all be glad I only weighed about 95 pounds at that time.). My high school also had an elevator--which I never used, but it was good that it was there for students who broke legs or ankles. My elementary school wasn't accessible at all, and students who couldn't go up and down stairs had to be carried by their parents to their classrooms. Not great. 

Even post-transplant, I still used my placard. When I went back to work four months post-transplant, I was still working only half days. I still looked sort of sick--my skin was very pale, I was extremely thin, and my hair hadn't developed the healthy sheen it has now. If you cared to look at me closely, you'd have noticed that I was either sick with something, or recovering from something. Since I worked at the Statehouse, we had Highway Patrol officers that provided security for us, including patrolling the garage. I never paid them much attention to them until one stopped me as I went to my car, shortly after I had returned to work.

"Is this your car?" 

"Yes."

"Why is it parked in a handicapped spot? Are you handicapped?" The tone in the officer's voice indicated that he didn't think I was.

"I just had a double lung transplant."

There are few things more satisfying than watching people realize they've just had a major Foot in Mouth Moment. 

Now, I don't have one anymore. Now I walk across the parking lot with all the rest of you. But let's please remember that there are many invisible disabilities. Arthritis? Check. CF? Check. Autoimmune disease in general? Check. Epilepsy? Check. Diabetes? Check. Etc. 

(also, little side note: CF can cause arthritis. Yeah. That's a fun little holiday treat, as they say in Family Man. One of my friends has terrible CF related arthritis. Mine was not as bad as hers, and there were still days when my joints were so tender and so painful that the thought of putting any pressure on them--the though of even standing--was out of the question.) 

Let's talk about my life now. 

I have a cochlear implant.[ It is only by sheer dumb luck, or God prompting, that I took two years of American Sign Language in high school. I can use it if I have to. Normally, I don't. But I can.] There are so few accommodations for Deaf and hard-of-hearing people! 

Marcus Theatres is the only cinema chain around here--and I live in one of the largest cities in the U.S.--that provides captioning for every movie it shows. AMC doesn't (AMC is our other big local chain). When I want to see a movie, it has to be at the local theater, and if it's not showing there, I can't go, because I won't understand it. Apparently, AMC doesn't think that Deaf people or people like me might like movies. 

The system I use at Marcus is called Captiview. Marcus has about five of these systems and all I have to do is ask for one at the box office. It's easy to use and it's not distracting to others. They can't see the light from the captions (My friends and family have tried to read the captions when we're at the movies, and it's only if I turn it to face them that they can). Sure, it's a bit unwieldily to carry around in the multiplex, but it works. I love movies, and now I can go out and watch them in the cinema like everyone else. I get to see movies, movie theaters get my money! Yay! But if all movie theaters provided captioning, I could see a broader range of movies--and I'm lucky that the theater that is closest to me provides this service. And they're not a nationwide chain. They're Midwest-based and only in states like Ohio, Wisconsin, Illinois, and Indiana. So if you live somewhere else, then I hope your local theater has something similar, or you're out of luck. 

Some cable channels aren't captioned. YouTube videos, or online videos? No captions except "automatic" ones, which are about as useful as captions in Swahili to me. Warner Brothers, especially, incurs my wrath, because they do (Pardon my French, here) half-assed captioning. When I watch The Wizard of Oz and the captioning automatically comes on, it doesn't translate word-for-word. It gives a summary of what the character is saying. 

Lesson 2: Deaf and Hard of Hearing People Like TV and Movies. Please caption things for us--COMPLETELY! 

Seriously--the next time you watch anything from Warner Brothers, turn on the captioning, and you'll see what I mean. I know they're leaving words out, because I can hear the dialogue. (Not understand all the dialogue. There's a difference.) 

Some DVDs don't even have functioning captions. What is that about, guys?

Captioning like this isn't covered by the ADA. The only thing that must be captioned are channels that receive federal funding. Well, thanks. 

Normally, I'm a small government person. But this is ridiculous. Provide a basic service that is inexpensive (see the Captiview site I linked to--that's one of the selling points for their technology), easy to use, and not at all inconvenient to other patrons. 

Another area that needs work? The phone. People, not everyone who is Deaf or hard of hearing has a TTY. I don't have one. I don't know how to work one. But if a website provides chat services, I'm fine. We can communicate just great. I use email most of the time because if you call and talk to me, you will sound like Charlie Brown's teacher, unless I know your voice really well. (Meaning, you're my parent. And even then....)

AAA, for example: when I got a flat tire a few years back, I couldn't call them. I had to text my Dad to have HIM call them to come help me. It was ridiculous. Can't we come up with an app that will allow texting to contact services? This is the 21st century. We have apps for everything. Or not even an app--a number that could be reached via text message. 

This is especially true in health care. Oh my gosh. When I have a call with a case manager, my mom or dad has to sit and translate for me, because the case manager can't email me. It HAS TO BE over the phone. What? What sort of sense does that make? If you don't want to email, then set up a chat window on a website, like my bank has, or like many shopping sites have. If Bobbi Brown Cosmetics and the Disney Store can have a chat interface, then medical and insurance companies can, too.  Don't they ever think they might be working with a person who has a hearing disability? 

The law did a lot of good things, but there are plenty of things that still need work, especially in the realm of hearing, as I hope I've shown you. 

Tomorrow I'm going to write about accommodation in a place where you'd think it should be second nature--churches. 

 

 

Punching Satan in the Face: Edel '15

EdelEmily DeArdo6 Comments

Describing last weekend requires a lot of superlatives. Awesome. Epic. Fantastic. Amazing. You know, all those words that teenage girls like to use in squealing tones of voice. But in this case, they'd be well-deserved. It really was all those things.

Edel 15 @emily_m_deardo

My family and I arrived in Charleston on Thursday, and the conference kicked off on Friday evening. On Friday morning, I received an email from Jen Fulwiler asking me if I'd be a guest on her radio show that night. Now, I'd sort of hoped I'd be a guest, but I didn't think I actually would be, because those sort of things don't happen to me. I don't win the lottery or even the church raffle. I'm not lucky that way. But today, I was.

I did a little happy dance and replied that I'd love to. I do love to talk, after all. And I wasn't nervous, because I'd be talking about--well, OK--me, not nuclear policy or sanctuary cities. If I don't know about my life, who does?

I was worried that I wouldn't talk to anyone else all weekend--that people would think I was a weird blog fan girl and think "danger, Will Robinson!" But the women were all welcoming, funny, and friendly. As the weekend progressed, I realized that a lot of us often felt the same way--that people wouldn't like us, or would think we're "weird". But Edel is a great example of CS Lewis' definition of friendship: "You too? I thought I was the only one!" There was a lot of that at Edel.

But back to the radio show. Mary Lenaburg (pictured above with the fantastically funny Kelly Mantoan, one of our speakers) was first, and she talked about her sweet Courtney. There was a need for tissues after she was done talking. Fortunately, I didn't have to follow that. ;-) I was on in the six o'clock hour (we were on from 5-7) and to be honest, I have no idea how long I was interviewed, and I have a vague idea of what I said--adrenaline just totally took over.

Being interviewed by Jen Fulwiler and  Hallie Lord was a bucket list item I didn't know I even HAD. @emily_m_deardo

Edel 2015 @emily_m_deardo

I do know I said it's OK to get mad at God, because he can take it--this was tweeted a lot, apparently. (It's so weird to have things you said be tweeted. This happens to other people. Not me.) But I had a blast talking to these amazing ladies.

And when I say amazing, I mean they were all, really, amazing. Every one of us is fighting the good fight at home, moving toward holiness one load of dishes at a time. It was so refreshing to be with like-minded women!

In self-care, one of the things that gets talked about is "filling your well". Edel did that for me. Not only did I get to meet women whom I've admired for a long time (Mary, Kelly, Jen, Hallie, and Ginny, for starters), but I got to meet new friends. And we really felt like friends who'd known each other a long time. It was easy to open up to these women.

Edel 2015 @emily_m_deardo

edel 2015 @emily_m_deardo

edel 2015! @emily_m_deardo

Hugs and laughs were shared in equal measure. Let's not even talk about the spectacle of lots of Catholic women dancing and doing karaoke after imbibing cocktails.

But the biggest thing I took away was that none of us are alone in what we're doing. And we might be scattered all over the world, but we are united in what matters. And that might include shrimp and grits and karaoke, as well as more serious things.

In the gospels, Peter doesn't want to leave the site of the Transfiguration. He wants to stay up there always with Jesus, Elijah, and Moses. But he can't; Jesus leads them back down the mountain. Things like Edel are the moments of the transfiguration. As much as we might want to stay on the mountain, we have to bring what we've seen there back into our daily lives, and transfigure them, based on what we know now.

And the title of this post? That's from Kelly Mantoan's talk: "Every time you bless yourself, it's like punching Satan in the face."

A lot of us left Charleston ready to do just that.