Emily M. DeArdo

writer

current events

Charlie's Dignity

current events, healthEmily DeArdoComment

I love my parents. They've done yeomen's work the past 35 years, helping to keep me alive. I know parents who do not do a good job with their children's illnesses--my parents have been rockstars on every level. 

I love my doctors. They are also rockstars. They are the people who continually keep me alive, even when other doctors have told them that it was a waste of time and/or effort. I have a doctor who got an international pager (back in the day) so we could always contact her. I have nurses who will answer my emails at any time. I've worked with incredible medical professionals of all stripes. (And some that suck. But we're not talking about them today. We're talking about the awesome people.) 

Most of the time, the two groups of awesome are in agreement about what should be done. But not always. When I was in the ICU in 2001, and no one knew what was wrong with me, several of the ICU doctors were ready just to write me off. My parents weren't, and neither was my doctor, or the head of the ICU, who worked insanely hard to figure out what was wrong with me--eventually, they did. And I'm writing to you today. 

Doctors are awesome. But doctors can be wrong. And parents are awesome. But parents can be blinded by love. 

Which is why we need moral and ethical guidelines in place, in cases where the two groups of Awesome cannot agree on what is the proper course of action.  Except...what do we do when doctors want to embrace a course of action that will kill their patient, and the parents are vehemently opposed? 

If you aren't familiar with the case of little Charlie Gard, here's the nutshell: Charlie has a very, very, very, VERY rare disease--so rare that maybe 17 other people in the world have it. Since birth, Charlie has been treated at London's Great Ormond Street Hospital (GOSH). Because of Charlie's disease, he cannot breathe on his own, and he cannot see or hear. 

GOSH wants to take Charlie off life support so he can die, because they feel he's not going to get any better, so it's time to embrace the inevitable. His parents, obviously, are against this, because Charlie is alive with the help of ventilators--like many other people, in ICUs the world over, or people who have tracheostomies. They are alive because of machines, but they are alive. A ventilator or breathing support really isn't an extraordinary measure, these days, on its own. 

The parents would like to take Charlie to the United States to try another treatment--GOSH won't let them. This case went all the way to the European Court of Human Rights, which sided with the hospital.  (Isn't that just dripping with irony?) 

What's the hospital's argument? That the treatment the parents want to try will cause Charlie pain and suffering and it won't work, so they refuse to let Charlie's parents try it

I find the hospital's "reasoning", on multiple levels, insane. One because doctors are supposed to help patients--not kill them, which is what would happen if Charlie was taken off the ventilator. It's no different than removing a breathing tube for a quadriplegic. Now, Charlie's condition, as it stands now (and as I understand it), won't get better. He's going to die. But that doesn't mean the parents don't have every right to try another treatment, in another country, that the parents are going to pay for. The money's already been raised. Hospitals in the US, as well as Gesu Bambino hospital in Rome (which is run by the Vatican), have offered to take Charlie as a patient. But GOSH will not release Charlie to his parents' care. 

Just because Charlie cannot breathe on his own, cannot hear, and cannot see doesn't mean his life has no value. OK? I can't hear without my CI, really. So does my life have no value? I've been on ventilators before. Did my life have no value then? Does Stephen Hawking's life have no value, because he has a tracheostomy? Or people in wheelchairs, or quadriplegics, who also need help to breathe and do just about anything on their own? Since when is the value of a person determined by what they can do? 

When a person is dead, then yes, it's time to let the child go. But Charlie isn't dead. This isn't the case of parents fighting a hospital over a brain death certification. Charlie is alive, and the hospital wants to stop that--because he might be suffering. And he's not going to get any better (they think. They might be right. But we don't know that.). 

I talk about this sort of thing a lot here, because people need to realize that life isn't about what you can do. Life has value because a person has value, no matter what. Pain and suffering are inevitable parts of life. 

But apparently no one told the folks at GOSH, or the European Court of Human Rights, this. Because Charlie's life, to them, isn't really all that important. They've kept him alive long enough. Now it's time to just shut of the machines and kill a little boy. And if we're going to talk about pain and suffering, they will basically suffocate Charlie by removing his ventilator. Is that going to cause pain and suffering? I think so.  

I'm not going to say the hospital doesn't care. I'm sure the nurses and doctors who care for Charlie care very much. But the state has clearly overstepped its bounds. 

Charlie can't make a decision on his own about his care. His parents have to do it for him. They would like to, at the very least, take him home to say good-bye to him, and let him die with them, in real dignity, not the fake dignity the state is suggesting.   If Charlie's parents decided that they wanted to pursue hospice care for their son, that should be their decision, and the hospital should give them the resources they need to make sure that Charlie can have a peaceful passing. 

Is it inevitable that Charlie will die? Yes, because we all will. But there is absolutely no need to hasten it, the way GOSH wants to, because The Almighty Doctors have decided that it's time for Charlie to die. 

 

Daybook No. 112

behind the scenes, books, Catholicism, current events, current projects, Daybook, Dominicans, fiction, knitting, links, Tidying Up, writingEmily DeArdoComment

Outside my window::

Cloudy, a marked contrast from yesterday's blue skies and sun, but since It's going to be in the 60s, I'll take it. Especially since....gulp.....snow might in the future! 

Wearing::

My PJs--I just got up (it's 8 AM as I'm writing this) 

Reading::

North and South, Mockingjay, Rising Strong,  and The Betrothed. I really like North and South--Margaret Hale is a great character. I'm late to the Rising Strong party, but better late than never, and I also have Daring Greatly to read.

In the CD player::

Fun Home and Hamilton. No Christmas music until at least after Thanksgiving!

Living the Liturgy::

Today is Lucy Pevensie's feast day! And since she's my Dominican patron, I get to party all day. 

 

Around the House::

Doing the deep cleaning to get ready for decorating> I don't have much to do--the tree, a few baubles, and my Fontanini creche (one of the best Christmas gifts I have ever received, ever). The Baby Jesus doesn't go in the creche until Christmas Eve, and the Magi make their way into the set proper by Epiphany. If you're looking for a Nativity set, I highly recommend this one. The figures are made of a type of plastic that means kids can chew on them, play with them, etc., and they won't break!

Speaking of Catholic households, this is a good article from Our Sunday Visitor that's worth a ponder. 

I'm also in the last stages of Tidying Up. I took three bags of books to Half Price books yesterday, so I'm still looking for the book/CD/DVD "click point" that Kondo talks about. I'm sure I'll find it--eventually. :) Until then, I just keep taking books to HPB. 


Creativity::

I have "won" NaNo--but the book's not done. Oh no. I'm going to write a sequel. (I can't believe it either!) Nothing about this book has gone the way I thought it would, but it's been in a great way. My friend Andrea says the "muse has inhabited me", and while that may or may not be true, it sure is fun. I will officially "win" NaNo on the 20th, when you can start verifying word counts. 

So I have to put an ending on this guy (a cliff-hanger, of course), and then start the new document for book two, maybe do some outlining--and then touch nothing until January. This is what usually happens with my NaNo books--I finish them in November and then don't touch them until January. That gives them, and me, a nice break before I begin revising/editing. 

And I can purl! You'll see the proof tomorrow in the Yarn Along. 

 

Pondering::

In light of the attacks on Paris, this is an excellent read. It's long, but it's well-worth the time it takes. 

There are so many problems in our world that are new, and all colliding at once--fighting a war against an enemy we can't see (as Judi Dench said in Skyfall), the Syrian refugees, elections, earthquakes in Mexico and Japan....

The only solution I can see to it is to pray more intensely. 

 

Plans for the week::

Not much, which is nice. CCD on Sunday, when we'll talk about Jesus' birthday (we talked about Advent last week). And then it's Thanksgiving week, and then we're into December! Holy cow!

 

This Week's Question: How do you celebrate Thanksgiving in your family? 

 

 

 

 

 

Daybook No. 105

Daybook, books, fiction, Real Housekeeping, writing, Catholicism, current events, travelEmily DeArdoComment

Outside my window::

Partly cloudy and warm. I'm ready for fall.....I've got a candle burning to helpfully spur my "fall feelings" inside. :) I am, however, wearing jeans! 

Reading::

Early Warning, Middlemarch, The Mark of Athena, A Year of Pleasures

In the CD player::

Sarah McLachlan's Shine On

Remembering::

A dear colleague/friend of mine, Cheri Mitchell. She was the former director of BalletMet, who had just retired, and I met her during my work with the Young Professionals board. She was so dedicated to her work and the arts in Columbus, but she was also incredibly supportive in my own writing and theatrical endeavors, often leaving kind notes or comments on my Facebook page whenever I wrote about theater project or writing updates. I will miss her. 

She was hit by a car when she was out running this morning. It's so crazy to think that she woke up this morning and was fine....and now she's gone. 

I will be keeping her soul and her family in my prayers. Can I ask y'all to do the same thing? 

However, Cheri would've been pleased with this next bit....

Writing::
The book, as we know, is done. And it will be mailed out tomorrow! I have to scribble out a cover letter tonight, but soon it will be on its way to San Francisco....and then I wait!

My newest Real Housekeeping piece is up, as well! It's a little different but I think you'll like it.

And I also think I've solved the problem of my 2014 NaNoWriMo novel. Basically, I started writing this novel, and it just didn't want to write--I was missing something. But I think, with some thinking on it, I have a new idea an possibly a new format for it (multiple narrators). Now that THE BOOK is done, I have time to go back to some of my fiction projects that are in various stages of completion. 

Health::

I had a clinic appointment yesterday, and everything is stable, so that's good, and I got my flu shot. Oh joy! I had a dentist appointment today, and I've got my first cavity in like, 20 years, so I guess that's something....going back to have that fixed after the Boston trip. It's super tiny so it's not a huge deal but I was sad to break the streak of Awesome Teeth. :-P 

Pondering::

The Pope's visit and the Synod on the Family. Both of these things sort of give me the heebie jeebies. I miss John Paul and Benedict. I know we've had "average" popes before, but the majority of my life was spent under two amazing popes, one of whom is a saint. 

Pope Francis makes my head hurt. When I read Laudatio Si', I spent a lot of time going "what? What does that mean?" I know he's Argentinian, so he's coming to things from that perspective. I know he's South American. I know he doesn't speak English. But I just can't get a good read on him, or really understand what's important to him. He just seems so all over the place. I don't really like it when the pope is all over the place. 

I'm listening to Fr. Robert Barron talk at the World Meeting of Families right now, which is the precursor to the Synod, I think. The Synod also makes me nervous. I don't like changing things to be "modern" or "hip." I like things that are true. I'm a Dominican. I don't like to see things change that are contravene truth and what we believe. I'm hoping that doesn't happen. I'm also hoping the pope doesn't say something inexplicably crazy in front of the UN or Congress. 

Maybe I'm worrying too much, and maybe I just need to "let go and let God." But I still worry. And it's not that I feel "challenged" by him--it's that a lot of the stuff he says is so dang confusing!

Around the house::

Took five more bags to Half Price books today--CDs and books, mostly. Yes, I skipped ahead a bit and did my CDs today. The CDs are supposed to be done after paper. I did the downstairs paper, which is stuff like my lease, tax returns, etc. and tossed the stuff I didn't need anymore, and managed to combine what I do need into one vertical file. There are also the papers in the office, which will probably just be summarily trashed, because it's stuff that Kondo calls "seminar notes"--things I printed out, meaning to read them.....and then never did. Out they'll go. 

From the kitchen: 

I loved Jamie Oliver's chicken fajitas so much when I made them a few weeks ago that I'm making them again. I serve them with his really easy homemade salsa and some cheddar cheese, and no tortilla, to reduce the carb load. And let me tell you, it's amazing. I think next week we're going to have another Food Stories post up about Mexican Food. I'm also thinking about making my first kedgeree this week, which excites me greatly, because it's fish and cheese and other awesome things. :) 

Planning for Boston::

We've made two reservations--one at La Summa, in Boston's North End, and one at Legal Seafood by the New England Aquarium. The Jeopardy test is at 9:00 on Sunday morning, and let me tell you, I'm going to be HUNGRY after that test, so we'll be heading to the Faneuil Hall area of downtown first, so we can eat!

Catholicism in the Culture: Sin, Crime, and the Duggars

Catholicism, current events, linksEmily DeArdoComment

Catholicism in the culture: Sin and Crime @emily_m_deardo Earlier this week, I read this article in the Washington Post about Josh Duggar's inappropriate (and quite frankly, gross) actions against several of his sisters and another family friend. That alone isn't worth blogging about, though. What is worth writing about are are similarities and difference between sin and crime--something that the author of this piece doesn't seem to understand. The author seems to think that "repentance" is equal to getting off scot-free, and that there isn't any sort of price to be paid for committing sin, whereas with a crime, there is a cost--jail, usually, or a fine of some sort.

When you treat this as a sin instead of a crime, you let everyone down...The behavior alleged was a crime, not a sin.

Actually, it's both. If I commit murder, I have sinned and committed a crime. Same with theft, abuse, using illegal drugs, etc. There are some things that are sins but aren't crimes, like adultery. You can't go to jail for sleeping with your co-worker's wife. No one's going to lock me up for not observing the sabbath or for taking God's name in vain (at least in the United States).

Let's look at a few terms, here, because the author didn't, and that's a big problem.

First off, what is sin? Here's how the Catechism defines it:

1849 Sin is an offense against reason, truth, and right conscience; it is failure in genuine love for God and neighbor caused by a perverse attachment to certain goods. It wounds the nature of man and injures human solidarity. It has been defined as "an utterance, a deed, or a desire contrary to the eternal law."121

1850 Sin is an offense against God: "Against you, you alone, have I sinned, and done that which is evil in your sight."122 Sin sets itself against God's love for us and turns our hearts away from it. Like the first sin, it is disobedience, a revolt against God through the will to become "like gods,"123 knowing and determining good and evil. Sin is thus "love of oneself even to contempt of God."124 In this proud self- exaltation, sin is diametrically opposed to the obedience of Jesus, which achieves our salvation

There are also different types of sin. 

We see, in this definition of sin, that no sin only hurts one person. Sin is an offense against God. It is opposed to grace. Sin removes grace from your soul, and places you farther from God.

Now, what is crime? According to Merriam-Webster, crime is:

: an illegal act for which someone can be punished by the government

: activity that is against the law : illegal acts in general

: an act that is foolish or wrong

So both sin and crime are about doing things that are wrong, whether by God's law, the law of the state/country/county, or by Natural Moral Law.  Essentially, Natural Moral Law states that even if you never met a Christian, read the Bible, or ever heard of Jesus Christ, there are some things that humans know are intuitively wrong. As Catholicism for Dummies puts it:

Moral law is natural because it’s known by reason — not written in stone or on paper, like the Commandments or the Bible. It’s moral because it applies only to moral acts — actions of human beings that involve a free act of the will. (It doesn’t apply to animals, because they don’t have the use of reason.)

What Josh Duggar did (and he confessed to doing it, so this isn't alleged behavior) is both a sin and a crime. He committed a sin by violating one of God's commandments--sexual acts outside of marriage are wrong. (While the Duggars have some pretty extreme courtship measures, the general message of "no sexual activity until you're married" is a tenant of Catholicism, as well. But full-frontal hugs are allowed, and I never dated with my siblings as a chaperone, etc. The Duggars embrace a pretty hard-core version of purity, which the article discusses.) So that's sin. However, it's also illegal to perform sexual activities on others without their consent, so that's the crime portion of the situation. Both require confession and punishment/penance, but they go about it differently.

If the Duggars were Catholic, they would have strongly suggested that Josh confess this sin (you can't compel a confession. The penitent has to come to it of his own free will and with a proper spirit of contrition), and he would have received a penance.  After the penance was completed, Josh would have been fully absolved from the sin, thus returning to a state of grace and a state of friendship with God. The Catechism says (my emphases)

1468 "The whole power of the sacrament of Penance consists in restoring us to God's grace and joining us with him in an intimate friendship."73 Reconciliation with God is thus the purpose and effect of this sacrament. For those who receive the sacrament of Penance with contrite heart and religious disposition, reconciliation "is usually followed by peace and serenity of conscience with strong spiritual consolation."74 Indeed the sacrament of Reconciliation with God brings about a true "spiritual resurrection," restoration of the dignity and blessings of the life of the children of God, of which the most precious is friendship with God.75

1469 This sacrament reconciles us with the Church. Sin damages or even breaks fraternal communion. The sacrament of Penance repairs or restores it. In this sense it does not simply heal the one restored to ecclesial communion, but has also a revitalizing effect on the life of the Church which suffered from the sin of one of her members.76 Re-established or strengthened in the communion of saints, the sinner is made stronger by the exchange of spiritual goods among all the living members of the Body of Christ, whether still on pilgrimage or already in the heavenly homeland:77

It must be recalled that . . . this reconciliation with God leads, as it were, to other reconciliations, which repair the other breaches caused by sin. The forgiven penitent is reconciled with himself in his inmost being, where he regains his innermost truth. He is reconciled with his brethren whom he has in some way offended and wounded. He is reconciled with the Church. He is reconciled with all creation.78

(The entire section on confession is worth a read, if you're interested, or this post)

So, not only would Josh's sins have been forgiven after confession, but he also would've received grace to strengthen him against committing sin again. (as I tell my first graders--GRACE IS AWESOME.)

Now, that being said--confession heals the person's relationship with God. When criminal activity occurs, the Church believes that the process of law and due process has to happen for the common good of society. For example, if a murderer comes and confesses his sin, the priest will strongly urge that person to confess to the authorities, as well. It's part and parcel of justice, which is a virtue. If you steal, you not only confess it--you have to pay back what you stole.

So, yes, Josh's parents would've had to turn him in to the authorities. What happens after the crime has been admitted is a different thing in different localities, and thus outside the realm of this discussion.

However, the thing to remember is that sin hurts everyone. When you sin, you don't just confess and get off scot free. There has to be penance, there has to be contrition and yes, you have to do your penance. The author of this piece is wrong when she suggests that sin and crime are different things, and that one is more or less serious than the other. Sin and crime are both offenses against other people, and both must be dealt with accordingly, whether sacramentally or judicially.