Category Archives: Lewis Crusade

Manliness and a Perfect Funeral

http://jenniferfitz.com/manliness-and-a-perfect-funeral/

A beautiful tribute to my beloved John.

grayscale photo of wheelchair

Photo by Patrick De Boeck on Pexels.com

Advertisement

“Hey! I know her!”

The Aiken Community Playhouse Youth Wing is putting on Kate Hamill‘s award winning, 2016, off-Broadway adaptation of Jane Austen’s Sense and SensibilityFrom their website, the showings are:

February 16, 17, 23, 24 at 7:30 . February 18 at 3 pm
School show: Feb. 22 at 10 am. Interested schools should contact the Box Office at 803-648-1438

Now, it should be noted in the interest of both journalistic ethics and apparently federal law, my daughter is in the play and I got to see the dress rehearsal for free because of that.
That said, I really did think it was fantastic, and I strongly recommend it.  I considered trying to do the whole “Snarly Judge who everyone loves to despise” thing, as Mr. Lunt puts it,  and try the whole reverse psychology thing, but I really did like it too much to say anything bad.
One of the marks of professionalism in a performance is the ability to go with the flow when things go wrong, and these kids did great.  I got so wrapped up in it I kept forgetting two things: a) that it was a dress rehearsal (in fact, we previously had free tickets to ACP’s adult dress rehearsal of Beauty and the Beast, and that was so good I forgot it was a dress rehearsal) and b) my daughter was in it.  I barely recognized her.
A basic rule of performance is the ability to go with the flow if something goes wrong.
I kept telling my daughter about William Shatner’s “big break” as Christopher Plummer’s understudy in a Toronto production of Henry V.  On the night when the critics wrote their reviews, Plummer was ill and Shatner took his place.  He kept forgetting his lines, but his pauses to remember them were so dramatically effective the critics loved him.
So these kids were consummate professionals: I noticed a couple times where one of them would stammer, and it fit so well with the story it was either really good acting because they stammered intentionally or really good acting because they actually stammered with good timing.
The only other mistake I noticed was a feedback problem near the ending, and it happened when a character was in angst, so again, it was impressive that the young actors just kept going with the scene.
There were some interesting choices for the incidental music, some of which was at times a bit too anachronistic, but it was emotionally effective nonetheless, and had me listening to the Piano Guyseponymous album on repeat for two hours after the show.
Between the superb acting, the effective dramatization of Austen’s classic, and the music, with the added impact of my daughter’s debut (almost 11 years to the day after her unofficial stage debut as a volunteer audience participant in a dinner theater), I spent the next hour after the show in pure Joy/Sennsucht.

The play was so good that I’d go back even if my daughter wasn’t in it.

As for my daughter, Alexandra Hathaway, in the role of Mrs. Dashwood, she has a tendency to be a bit too fast in her delivery, but in this case it was like the opposite of William Shatner’s King Henry.  They all had to speak quickly to deliver the extensive dialogue, and she came off very effectively as a frazzled and desperate widow.  Like Estelle Getty in Golden Girls, she was one of the younger members of the cast, but a little make-up added to her Marfanoid physique, and her eldest sibling “Little Mother”/babysitting skills made her extremely convincing as a 40 year old mother.

5a85d79da7e2a-image

Alexandra “Mrs. Dashwood,” standing (Photo Credit: Christina Cleveland, Aiken Standard)

28058453_10156267423437873_3634099091347710098_n

Photo Credit: Me.

10 years ago, she couldn’t see. Now, she has lens implants that give her vision like her mother’s. 10 years ago, her aorta “enlarged.” It stopped growing and even shrank a bit, such that her cardiologist calls her the “miracle girl.” She is in constant pain from ankles that sublux all the time, yet she’s enduring the pain to do this. Whether this is the first step in an illustrious career in theater or valuable experience that will help her in a future path, we are impressed at what she has accomplished, and she deserves accolades and lots of ticket sales, and Aiken Community Playhouse deserves a lot of ticket sales for giving her this well-earned opportunity.

Update on the vehicle issue

Updated 12/11/2018:  John died suddenly after a seizure on October 11, 2018, in the middle of Hurricane Michael.  We are devastated at the loss of our husband and father.  We were never able to get him the new van he so desperately needed, and I ask his intercession to Almighty God for all those who are in need of one.   If you wish to help me (Mary) and the children, the fundraiser link for our living expenses is here:  https://www.givesendgo.com/GHRS#.W8QNumXt9jQ

Continue reading

On Cult and Culture

The problem with “Culture Wars” is we don’t know what culture *is*.  If we truly want to win back souls to God and the Natural Law, we must do it through redeeming the culture itself.

Chesterton says that the history of Western civilization is a conflict between three worldviews: the Greco-Roman, Judeo-Christian and atheistic-nihilistic. He illustrates this with a parable of a people on an island who worship the sun. They build a round, mathematically perfect, temple. Over time, they come to understand God as transcendent of Nature and nature as corrupt, dangerous and not quite so perfect as they previously thought. So they add a spire to their temple, pointing to the sky, and gargoyles to the outside to show that the world is dark and scary but there is hope in Heaven. Over time, they lose their faith in God completely and create a temple of complete grotesque to demonstrate it: they take away the spire and replace all the gods and saints with more gargoyles.

Chesterton saw 100 years ago what the Twentieth Century was producing and has produced in spades since.

These threads can be seen in smaller amounts in each major historical period and each particular Western civilization’s history.  Generally, though, the Greeks and Romans produced art and literature which saw both nature and the gods as orderly and beautiful.  Their dramas reflected the need to return to order when civil order was disrupted.

The so-called “Dark Ages” produced literature, art, music and architecture focused entirely on God, and human beings who were flawed in an immoral world.  This was the period of Gothic architecture: terrifying and imposing on the outside; uplifting and glorious inside.

The Renaissance saw a general return to the classical worldview.  The visual arts became less stylized by the rules of iconography and more stylized by a desire to reflect human perfection as understood by the ancients.  Music was made a bit more complicated than the simple, utilitarian chant of the Middle Ages, reflecting the Classical understanding of music as a form of mathematics.  Architecture was not directly classical per se but some Greek aspects were returned to architecture.  The greatest Renaissance writers drew from classical mythology or the rules of classical drama.

Then the 17th century brought a Puritan flair to the visual arts, while music focused on God.  Thus, Bach could say everything he wrote was a prayer–because even instrumental music was understood to express a code that, like a Gothic cathedral, raised the soul up towards God.

The 18th century saw the period we call “classical” or neo-Classical: architecture that was mathematical and balanced, per Greek principles as then understood.  The visual arts, like those of the Renaissance, evoked classical norms.  Pagan imagery began to be revisited.  Music was more strongly mathematical and less otherworldly.

Then came the period we call Romantic.  Interestingly, C. S. Lewis considered Jane Austen as the last truly Western author.   The Romantic (i.e., “of Rome”) period in Protestant Europe involved a quest for the “past,” but it was a blend of the “Past” of paganism as well as the “past” as well as a fascination with Catholicism and the purported tendency of people in “Romance” (i.e., Latinate) countries to engage in lots of adultery and fornication, lending to the terms “Romance” and “Romantic” becoming associated with affairs of the heart rather than a group of cultures.  Interestingly, this is the same time the term “Latin America” was coined as a way to unite French, Spanish and Portuguese colonies against the new United States and the remaining British colonies.
Literature evoked the beauty of nature as well as the quest for God.  It also evoked a fascination with the creepy old buildings, the mysterious Catholic past (now thoroughly ensconced in the Protestant imagination as a form of pagan witchcraft, masquerading as “Christianity”) and thus gave us the term “Gothic” as no longer meaning a style of religious art and architecture coming from Germany but now a form of “Romance” focusing on the grotesque and even macabre.

After the Romantic period there was a general shift towards nihilism, which is what Lewis gets at in “De Descriptione Temporum” when he says the above about Austen.  Someone once said that “music died with Nietzsche’s God.”

Romanticism gave way to “Realism,” which still had a bit of the Gothic hope in its negative portrayal of life, but that quickly gave way to the gargoyles of “Naturalism” in art and literature.  Music came to be atonal and discordant.

This is why simple worldliness of much “contemporary” music, like that of modern art and architecture, is ill-fitting the grandeur of God.  Though the attempt to redeem the modern world has its place, slapping “God” and “morality” onto otherwise postmodern literature and music is like Chesterton’s islanders, after burying their temple in gargoyles, saints and angels on top of the gargoyles rather than getting rid of the gargoyles.

The Proper Weight of Man

January 15, 2000, at about 9 PM at the now-closed Steak & Ale on Forrest Dr. in Columbia, SC, I proposed marriage by reading this passage:

“The weight of these golden rings”, he said, “is not the weight of metal, but the proper weight of man, each of you separately and both together. Ah, man’s own weight, the proper weight of man! Can it be at once heavier, and more intangible? It is the weight of constant gravity, riveted to a short flight. The flight has the shape of a spiral, an ellipse—and the shape of the heart … Ah, the proper weight of man! This rift, this tangle, this ultimate depth— this clinging when it is so hard to unstick heart and thought. And in all this—freedom, a freedom, and sometimes frenzy, the frenzy of freedom trapped in this tangle. And in all this—love, which springs from freedom, as water springs from an oblique rift in the earth. This is man! He is not transparent, not monumental, not simple, in fact he is poor. This is one man—and what about two people, four, a hundred, a million— multiply all this (multiply the greatness by the weakness) and you will have the product of humanity, the product of human life.”
Karol Wojtyla (Pope St. John Paul II), The Jeweler’s Shop, Act 1, scene 4).

Here’s a link to the play:

Letter to the Postulators for the OFM, Regarding Bl. John Duns Scotusk

To the Office of Postulation for the Causes of Saints,
Order of Friars Minor
Dear Brothers,

First, as a Secular Carmelite, I would like to congratulate you on the canonizations of Sts. Louis and Zelie Martin, who have significance to both our Orders. I don’t know how these proceedings work, but I would like to report a potential miracle for the cause of Bl. John Duns Scotus.

I have had a lifelong battle with the Marfan syndrome, a genetic disorder of the connective tissues. I grew up with a dilated aortic root which went aneurysmal and was replaced-with a St. Jude” valve in June 1996, when I was 19 years old (http://www.discovery.org/a/514). Approximately 10 years later, my descending thoracic aorta began dilating. In October 2008, I suffered a spontaneous pneumothorax. That same year, I was diagnosed with a tortuous carotid artery and a brain aneurysm (it’s complicated, but does not need surgery although it causes some neurological deficits). On January 1, 2011, at approximately 1 AM, I suffered an aortic dissection from the middle of my aortic arch to iliac arteries. The blood flow to my right leg was cut off for 24 hours. The only surgery they did at the time was a “femoral-femoral” bypass.

I have a wife and four children, and, though I have always waivered between accepting my cross and praying for healing, I prayed in early 2011 for guidance on which Blessed to pray to for healing, that he or she might be canonized. I have a BA in philosophy, and I have long been fascinated with the figure of Bl. Scotus, particularly given his defense of the Immaculate Conception. In my own speculations, I had considered Bl. Scotus or one of several Carmelite venerables and beati, or a few others, and after praying about it, I felt Our Lord wanted me to devote my prayers for healing to Bl. Scotus.

Surgery on the descending aorta is a high-risk procedure for anyone. For someone with Marfan syndrome who has already had a previous aortic graft and a dissection, it is especially risky: putting various mortality studies and statistics together told me that I’d have a less than 10% chance of surviving the surgery and not having permanent organ damage or paralysis. I have read many stories of people with Marfan syndrome undergoing post-dissection aorta repairs and ending up in comas, having their lungs fill up with fluid, etc.

I was told in May 2012 that I wouldn’t survive the summer without surgery, but I wanted to wait for the right doctor. I prayed about it. In December 2012, I made my final profession as a secular Carmelite and then found the name of a highly ranked vascular surgeon, Dr. John “Jeb” Hallett at Roper-St. Francis Hospital (a Bon Secours hospital that merged with a Protestant nonprofit hospital) in Charleston, SC, 3 hours from where I live. Dr. Hallett and the then-head of cardiothoracic surgery at Roper, Dr. David Peterseim, performed the surgery on March 27, 2013. On March 20, they performed a bypass of my left subclavian artery to my left carotid to prevent a stroke. I was permitted to come home for my daughter’s Confirmation. Then I went back for the main surgery. Though it had been scheduled for that day for months, the doctors told my family that the widest part of my aorta was larger than 6 cm, and that it was so weak that I should have already had a fatal dissection and likely would have if the surgery had been a few days later.

The surgery went relatively smoothly, but there were complications. I ended up in the hospital for 3 months, spending 3 weeks anaesthetized. I had to have surgery to repair a tear in my thoracic duct, a drainage tube for a chyle leak, a trachyostomy, and insertion of a J-peg feeding tube. I was fed intravenously and by feeding tube for 2 months. My stomach was paralyzed, though some of its function has returned. The only long-term complication was a paralyzed vocal cord. Every day until I was well on the road to recovery, my wife posted a prayer to Bl. John Duns Scotus on her and my Facebook pages, asking people to pray for his intercession.

Almost every doctor I’ve talked to has said my survival and recovery are miraculous. Few surgeons would have put the care and dedication into my survival that the people at Roper did, and most patients in my situation would have had their respirators and feeding tubes pulled. I know as postulators you know what does and does not count as miraculous, but I’ve heard of cases being used in canonizations that were far more medically explicable than my own. While it’s easy to say, “You just had the right doctors,” even finding those doctors at the right time was an answer to prayer.
I hope my story will help to get the champion of the Immaculata the canonization he well deserves.

Abortion hurts everyone

Sharon Osbourne and Toni Braxton have both recently spoken out about their pain as post abortive women.

She recounted: “I had an abortion at 17 and it was the worst thing I ever did . . . I went alone. I was terrified. It was full of other young girls, and we were all terrified and looking at each other and nobody was saying a bloody word. I howled my way through it, and it was horrible. I would never recommend it to anyone because it comes back to haunt you. When I tried to have children, I lost three — I think it was because something had happened to my cervix during the abortion.</blockquote<

When Mary was going through the miscarriage, I was very stoic for days. She laid in her parents' bed through the process. Her (adult) brothers thought she was "just sick."

As the "tissue" started coming out, we collected the remains to seek some kind of burial (that's another story).

Shortly after the main body came out, I passed through their living room, where my brother-in-law was watching CNN and some pro-abort sicko was talking, and I just started howling. "What's wrong with John?" He asked.

I ran down the hall and picked up the container that held the remains, and I just screamed for I-don't-know-how-long.

The greatest pain is knowing that your baby died, a human life was created and ended-as all must do-and wondering what happened to that young soul (that's another discussion), not being able to really know him or her at all or know if you ever will.

The second greatest pain is knowing that society says "It's just a blob of tissue. You're grieving for a life that was cut short before most people realized there was one there, and while 1 in 6 pregnancies end by natural miscarriage, the grief is secret.

To protect the so-called "right to choose," we suppress parents' right to grieve. That fundamental principle was the original reason for the "Lewis Crusade," originally intended as an Apostolate, not simply a blog.

Personhood Now.

I still cry sometimes.

A funny thing happened on the way to Confession . . .

I had made a point of trying to get my family to Confession in the midst of other Saturday plans.
Then I was in bed with chest pain, so we were running late but got there around 4:45. The Confessional was dark; no sign of a priest. I noticed my wife hadn’t followed us in, and we were leaving anyway, when I found her standing by the van, the rear gate still open. There was oily fluid all over the ground, and she showed me how the fluid streamed out when she opened and closed the wheelchair lift:
Hydraulic fluid, leaking out of the pistons.
Great.
We’d “just” had them replaced, four years ago. Seems like just yesterday but forever. That was right after the second engine (for us, third for it) in our handicapped adapted 2000 Chevy Express 3500. Turns out, 4 years is about as long as those pistons last. Now I know, but while we have started budgeting for repairs, we just put a bunch of money into “regular” repairs, and she’s had to pay cash for some graduate courses. We were just starting to work on tightening the budget a bit more to save for emergencies and hopefully a down payment on a house in a year or two. We’d like to finally live in a house big enough for 4 kids sometime before they’re adults.

So, here we are, looking at another repair that could reach into the thousands. We tried Modest Needs 4 or 5 years ago, but that’s “All or Nothing.” This time, we went with GoFundMe, which takes a fee but sends the money as it’s donated.

Since Saturday night when I set it up, we’ve already raised about $470. In the morning, I will take it to a repair place and get a more exact estimate. Please pray, donate or at least share the link.
my GoFundMe Campaign

20140609-003136-1896230.jpg

Interesting quote from the _Compendium_

I was drafting a comment, and possibly a blog post, on the notion of “living wage” and while searching the Compendium of the Social Doctrine of the Church for what it says about “wages,” I found the following:

The rights of persons with disabilities need to be promoted with effective and appropriate measures: “It would be radically unworthy of man, and a denial of our common humanity, to admit to the life of the community, and thus admit to work, only those who are fully functional. To do so would be to practise a serious form of discrimination, that of the strong and healthy against the weak and sick”[292]. Great attention must be paid not only to the physical and psychological work conditions, to a just wage, to the possibility of promotion and the elimination of obstacles, but also to the affective and sexual dimensions of persons with disabilities: “They too need to love and to be loved, they need tenderness, closeness and intimacy”[293], according to their capacities and with respect for the moral order, which is the same for the non-handicapped and the handicapped alike.

Why Kenny Rogers and John Lennon were wrong

“The best that you can hope for is to die in your sleep,” said one.
“Imagine all the people living for today,” said the other.

Our neighbors like to have bonfires on the weekends and play the radio.  Usually, they do it in fall and our relatively mild winters, but, given the bad winter we’ve had, coupled with yard debris, they’ve been having them the last several weekends.  When we were leaving for Mass, the repulsive “Imagine” started playing on the radio at the neighbors’.  I quickly started the car engine, knowing it was on Casting Crowns.  I thought about switching to Fr. Antonio Vivaldi’s _Four Seasons_, but figured I’d rather hear content to get Lennon’s book of Marx out of my head (so to speak; “Imagine” came out nearly a year after “American Pie”).  I didn’t, and it fit in with the weekend’s meditations.

“Imagine all the people living for today”??
That’s exactly why we’re in the mess we’re in.  That’s what Thomas Hobbes famously describes as the state of nature: the war of “all against all” because everyone is “living for the moment,” and “the life of man [is] solitary, poor, nasty, brutish, and short.”

"YOLO? No, bro"

Living for today is a good thing if you’re focused on the eternal “today” that is our destiny.

In his address at the 1998 Seattle C. S. Lewis Institute, Peter Kreeft quoted Voltaire saying that too many people had their minds on Heaven and Hell and not on France.  “I don’t know where Voltaire is now,” said Kreeft, “but, wherever he is, he’s not in France.”

Me with Peter Kreeft and Tom Howard

Me with Peter Kreeft and Tom Howard

Liturgically, this weekend’s theme of course was resurrection in anticipation of the upcoming Easter.  Saturday, we also celebrated the Memorial of St. Vincent Ferrer, known for his preaching on the Last Things, for promoting the following:

Prayer of St. Vincent Ferrer to be Sinless at the Hour of Death

Lord Jesus Christ, who willest that no man should perish, and to whom supplication is never made without the hope of mercy, for Thou saidst with Thine own holy and blessed lips: “All things whatsoever ye shall ask in My name, shall be done unto you”; I ask of Thee, O Lord, for Thy holy name’s sake, to grant me at the hour of my death full consciousness and the power of speech, sincere contrition for my sins, true faith, firm hope and perfect charity, that I may be able to say unto Thee with a clean heart: Into Thy hands, O Lord, I commend my spirit: Thou hast redeemed me, O God of truth, who art blessed forever and ever. Amen. 

As we usually do, ironically, when I actually make it to Mass with my family, we went to the “last chance” college Mass, with a very kindly priest of the Holy Father’s generation who tends to overemphasize, as it were, “Niceness.”  He gives pleasant, uplifting homilies but never really challenges people.   He has a lot of good qualities, but I found his homily a bit lacking in the caution that should come with these themes.

“I am one of those who believe this life isn’t all there is.”
I should hope so.
He emphasized, “But if Christ is in you,
although the body is dead because of sin,
the spirit is alive because of righteousness.” (Rom 8:10).

He kind of left out the conditions “if” and “because of righteousness” and went with, “Christ is in all of us, so we’re all going to be together.”  He phrased it in that “ambiguous” manner that typifies his era, but he definitely promoted presumption.
I don’t know if it was posted because of St. Vincent, or the Sunday liturgy, or just an act of Divine Inspiration, but a blogger who goes by Tantamergo at “Dallas Area Catholics” posted a great piece on praying for a Happy Death, particularly praying for the opportunity to be conscious, as St. Vincent recommends above, so we can invoke Our Lady in our dying days, with various examples from Saints to that effect.
Thus, it was dismaying coming into Mass with those things in mind to hear Father say how most of his family were dead, and they’d all died of cancer, and he hoped to be fortunate enough to die in his sleep or suddenly!
No, the best we can hope for is not to die in our sleep; it is to die fully aware so that we’re not further punished for putting off our repentance.

Reports claim that Yellowstone is getting closer to eruption, and the animals are fleeing.   Others say that the supervolcano theory hasn’t been proven, that the animals are just engaging in normal migration, etc.  I say that, obviously, if they knew it was going to happen, they wouldn’t want to trigger mass chaos by saying that a mass extinction event is coming.  Either way, whether it’s Yellowstone, cancer, a heart attack, a gang playing the “knock out game,” or the proverbial bus, we must all heed Our Lord’s warning to store up treasure in Heaven, not on Earth.  Whether we die tomorrow or 90 years from now, we’ll still face the same personal judgement and the same two options for Eternity.  We worry so much about preparing for “retirement,” or how to survive various disasters, but do we worry about what will happen if we die a sudden and unprovided death?

Daily examination of conscience
Daily devotion to Our Lady and to Our Lord’s Passion
Self-sacrifice and almsgiving
Frequent recourse to the Sacraments
and, most of all
Praying daily that we and our loved ones will experience a “Happy Death,” with complete Confession, the Anointing, Viaticum, and the Apostolic Blessing (collectively, “Last Rites”).

These must be everyone’s priorities.

Check this out

David Alexander, aka “The Man with the Black Hat,” has done me the honor of quoting me in his piece on the first anniversary of His Holiness Pope Francis.  When he asked me if he could quote a reply I made to one of hsi Facebook posts (basically a summary of my entire “take” on Francis), I agreed, assuming he was assembling a bunch of quotes from different people.  I was honored when he quoted me as extensively as he did and as basically the only such quotation he used.  Please return the favor by reading his piece, but basically I was saying, which David elaborates on, that people either criticize or praise Francis for supposedly not being as academic as his immediate predecessors, but the problem, to my mind, is the opposite: when I read Bl. John Paul II and Benedict XVI, I feel like I’m reading teachers–really smart teachers who use big words, but teachers nonetheless–when I read Francis, I feel like I’m reading a scholar: someone who knows his stuff and assumes you do, too.  Put another way, as people like to treat them like The Only Three  Popes Who Have Ever Existed, and find “common themes,” and using Francis’s “field hospital” metaphor, JPII was our Bachelor’s advisor; B16 was our doctoral advisor; Francis is the hospital director managing our residency.  He expects us, rightly or wrongly, to know everything the others tried to teach us and is talking about application.

What if you could go back in time and kill Hitler?

A powerful speech.  Even if you don’t usually watch videos online, you really should listen to this one.  It speaks for itself, especially regarding judging others.  It’s a talk by genetics pioneer, Down syndrome researcher and outspoken pro-life leader Dr. Jerome Lejeune, whose Cause is being initiated, telling a powerful story about the dangers of judging based upon appearances, and the problem of eugenics:

One of the best analyses of the “Disney Issue” I’ve ever read

This review of Frozen by one Brian Brown is one of the best articles on the topic of children’s movie themes in general I’ve ever read.

Brown talks about people’s obsession over superficial things like magic (even G. K. Chesterton addressed Christians who censored superficial stuff) and yet disregarded the more substantive themes of Disney movies, like the New Agey “follow your heart,” “believe in yourself” nonsense, which Frozen completely undermines.  Says Brown:

The cumulative effect is a story with moral complexity and truth that destroys anything Disney has ever done, but is very much in the Pixar tradition (if, even there, above average). There are people out there (though they don’t seem to be writing reviews) who let the film speak for itself outside of the context of an anti-Disney bias—and I suspect they saw something like what I saw: a film that made them think, for 100 glorious minutes, that maybe great fairy tales aren’t dead.

So often people get worried about the epiphenomena and not the underlying subtext. As kids go, it can of course work both ways. Sometimes, adults wrongly assume that subtext goes above kids’ heads, and sometimes wrongly expect them to see it: it all depends upon the kid and the material in question, which is why our basic rule is usually that anything new has to be watched with us or by us first. In this case, we made a huge exception to that rule. I had seen enough positive reviews of Frozen that I felt it was OK to let my kids go to it with their uncles and aunt after Christmas.

When they became addicted to “Let it Go,” I read the lyrics and began to worry. However, they all, from 6 to 12, did a fantastic job of articulating why the song was not talking about morality per se and was, in the context, about superficial rules.

Indeed, since the movie does not explain where Elsa’s powers come from–the Troll King asks and her father says she was born with them–it could be seen as an allegory for genetic disorders.  As it is, I kept thinking of “corporate synergy” not in terms of Disney-Pixar but Disney-Marvel.  Elsa could be seen as almost a cognate to Loki, a Jotun raised in Asgard or Rogue, the “X-Men” mutant who kills people (and in some cases, steals their superpowers) if she touches them.  Barring fictional superpowers, the rift between Elsa and Anna, caused by Elsa’s “genetic disorder,” if you will, being a risk to Anna, could be easily inverted.  Take, for example, someone with ostogenesis imperfecta or hemophilia being raised in a totally protected environment and cut off from others for her or his own protection.  Or consider someone with a mental or neurological disorder who can’t control his rage or who has violent seizures.

This, by the way, gets to the problem with some who have tried to see the movie as having “homosexual subtext” because of its rejection of the sheltered princess falls in love with the first guy she sees” archetype, Elsa’s enforced celibacy and the behavior of the living snowmen in the movie.  The homosexualist movement has pushed the notion that gays have a monopoly on “being oppressed” to such an extent that anyone depicted as “different” in Hollywood “must” be “gay.”  This is true on both sides.  Christians only play into their argument when they assume that a genderless snow monster named “Marshmallow” is “gay” because of a credits-shot showing it dancing in a tiara–or, in real life, when they freak out about a boy having a My Little Pony lunchbox.

Apparently, Walt Disney himself began trying to develop Hans Christian Andersen’s “The Snow Queen” in the 1940s.  One of the big issues was how to approach the title character, who is arguably either morally neutral (literally a force of nature) or evil in Andersen’s story (usually even in most adaptations I’ve seen).  What made _Frozen_ was the notion of taking out Andersen’s boy character Kai and making his story elements part of Elsa and Anna.

If, as in the works of Whedon, Rice, Carpenter, and others who use vampirism and witchcraft as symbols of homosexuality, or as in previous Disney movies like _Pocahontas_ and _The Hunchback of Notre Dame_, the “bad guys” in the movie were ostensibly Christian, I could maybe see the argument, but here, all the superficial signs are that the characters are themselves Christian:

1.  Unlike “Aurora,” “Belle,” “Ariel,” “Prince Charming,” etc., the characters  have saints’ names: Elsa (Elizabeth), Anna, Kristoff, Hans (short for “Johann”), Sven (Stephen), and even the snowman Olaf (Patron Saint of Norway, probably most commonly known today because of The Golden Girls).
2.  Early in the film, when we’re seeing the girls grow up on separate sides of the castle, Elsa refers to her only friends being the paintings, and she says, to a painting of St. Joan of Arc, “Hang in there, Joan.”
3.  Many have commented on the choral music in the film, which is based upon a Norwegian hymn:

Sweet is the earth,
glorious is God’s heaven,
Beautiful is the souls’ pilgrim song!
Through the fair
kingdoms of Earth
We go to paradise with song.

Are you being Saved?

The person or persons who write “Coffee With Jesus,” the popular webcomic, hit another one out of the ballpark (much like Casting Crowns, they’re pretty Catholic in their thought, even though they insist they’re non-denominational).

I “got saved” almost every week in sixth grade at “Chapel” at Thomas Sumter. Almost every week, some speaker or Christian rock group or something would come with often truly inspiring and sometimes superficial cheesy, “testimonies” (or performances, as the case may be) and finish by saying, “Now, I want you all to bow your heads and give your life to Jesus,” and they would always have us recite the same words in unison, and my thought was always, “And these people would take issue with liturgical prayer. . . .”

Me, circa sixth grade

Almost every week, that is, except the two times my dad, the school’s first Catholic teacher, had his turn (each week a different faculty member would plan the program for Chapel). The first time, he had Fr. Anthony Rigoli, OMI, come, and the second time, he had a panel of students, myself included, speak about treating each other with love and respect (and speaking against bullying). This was inspired by one of his students unwittingly writing a paper about me. She wrote of this thin boy in sixth grade with glasses who was always being picked on and never seemed to notice when everyone laughed at him in the halls (I did), knocked his books out of his hands (I thought I was just clumsy), etc., and yet always seemed happy.

Interestingly, our headmaster once made the same comment.  He passed me in the hall and said, “That’s what I admire about you, John: you’re always smiling.”

I was honored that Mr. Owens, known for his very strict personality, took the time to say that–though at the time I was actually squinting.   This gets to any interesting side note about body language, Asperger syndrome and Marfan syndrome, since a) I have a hard time understanding other people’s expressions, and b) people have a hard time understanding mine.  Even after 14 years, Mary can’t read most of my expressions since they rarely indicate emotion and usually indicate some sort of pain, eye strain, trying to see, etc., though I do try to make a point of smiling.

Anyway, it’s interesting to me how people constantly want to engage in “institutional reform” of things that are just human nature.  As Joe Sobran put it regarding attempts to legislate against “hate,” “some people are just jerks.”  The Reformation supposedly started about “sale of indulgences” and yet many Protestant denominations require their members to tithe.   They criticize Catholics who seem to live a superficial religion but aren’t “Christians,” and yet so many Protestants seem to live the same way.

Salvation is always a process.  The greatest Saints refused to say they had achieved spiritual perfection, even if they had.  The only times in the Bible when Jesus makes definitive statements about people’s salvation are a) to Dismas on the Cross and b) to Zacchaeus at his house, when Zacchaeus promises to give just about everything away (and even then He doesn’t say “You are saved,” just “salvation has come to this house,” which is still an indication of process).

“Work out your salvation in fear and trembling” (Philippians 2:12).

Being Where Terri Was: Part 1–How I Got There

Since late May, I have debated in my mind about what or whether to write about my experiences in April. Like most such autobiographical topics, I’ve fretted about such quibbles as whether to write it here first or save for some formal publication opportunity, whether to go with a fiction or nonfiction approach, how much to share, etc. So I’ve ended up squandering the time I’ve been given to share it by hindering myself, and I decided I’d better just post it here and trust God’s will.

So, here goes: on March 27, as my few regular readers are aware, I had my aorta repaired from the middle of the arch to the middle of the abdomen. I knew going in that it was a risky procedure. I’d spent 2 years reading medical abstracts, studying statistics, talking to surgeons, emailing surgeons, etc., not to mention having spent my entire life *up* to that point studying for the inevitable. For an otherwise “healthy” person, surgery on the descending aorta carries, depending on whose stats you read, something like a 40% chance of mortality within the first two years, and I forget the exact numbers I started with, but when I added them all up, I came up with a 90% chance of some kind of “permanent complication,” be it death, paralysis and/or organ damage. The likelihood of those complications occurring, and the need for surgery ASAP, increased if one was a) A Marfan (check), b) had previous surgery on the aortic root (check), c) had already suffered dissection (check) and/or d) had an aneurysm greater than 6 cm in diameter (check).

Since my dissection in January 2011, I’d been debating whether and where to have surgery. My longtime cardiologist agreed with me that my odds weren’t good and it was better, if I did anything at all, to find someone relatively local who was competent enough rather than do it long-distance. i had already ruled out Johns Hopkins, Emory and UNC, and while I’d been seeing a local surgeon who was competent and confident enough to do it, he needed at least one more team member and told Tme that he literally asked every cardiothoracic and vascular surgeon in the Augusta area, with no one willing to “touch me.” The last time I saw him was in May 2012, when he told me that, recommended I see his mentor at UNC, and told me I wouldn’t live through the end of the summer without surgery (this was based upon CT scans done in November of 2011 and January 2012).

After ruling out UNC, I put the whole thing in God’s Hands. I happened to see a trailer on my Facebook feed about a new movie of _Les Miserables_. I thought, “Oh, not another one,” thinking it was going to be another adaptation of the novel. Then I clicked play, and heard Anne Hathaway’s amazing performance of “I Dreamed a Dream,” and I was ecstatic: THEY MADE A MOVIE OF THE MUSICAL?! I ran to my wife and kids. I called my parents and my in-laws. My wife said, “That’s it: no doctors, no surgery, no activity. Total bed rest for six months. I want you to live long enough to see that movie!” That was the “goal,” and in the mean time we got to go on a Make-a-Wish trip to Florida, and I was able to make my definitive promises as a Secular Carmelite. At my Community’s Day of Recollection, after making my Promises, last December, one of my friends not only knew what I was talking about about when I explained about the surgical options I was considering (and trying to get someone to do, since I was hoping to find someone willing to do a stent operation rather than “traditional” open surgery) but knew one of the top vascular surgeons in the country and had another friend who’d had an iliac aneurysm repaired by that surgeon–I believe he was at Shands in Florida. So he immediately got his cell phone out and called the surgeon’s registration nurse, with whom I spoke for a few minutes that Saturday morning. She gave me a few more names. I started researching.

In early January, having done all that and seen _Les Miserables_ twice, I started looking these names up. I stumbled on the _US News_ list of top surgeons and, since their database of “top vascular surgeons” was nowhere near as long as other categories, I just started scrolling through it after having specifically searched for the other names. Of course, most of the people on the list were from NYC, Boston, Philadelphia, etc. Surprising, few of the names I’d been given were on the list. The one doctor, Dr. Svensson, I believe, at Cleveland Clinic was named by _US News_ as the top cardiac surgeon in the country. I contacted his office and explained how the only reason I was going to travel that far for surgery was for stents because I knew I couldn’t physically handle the travel or financially or emotionally handle the consequences of being stuck 10 hours from home should complications arise. She said, “No way, no how would we ever do stents on a Marfan.” I thanked her for her time.

So, after knocking off everyone else from my list, I finally hit someone within my 3-hour ideal radius that wasn’t Emory: Dr. Jeb Hallett at Roper St. Francis Health Care in Charleston. Plus, he had a little star indicating that he was in the “top 10%.” I Googled his name, and I found this video:

I called his office and scheduled an appointment. When I saw him, it was the most amazing medical appointment I’d ever had. I can honestly say that in all my experience with doctors, now as a patient and a parent, and having known some very excellent physicians, I have never known a doctor quite like Dr. Hallett. He knew everyone whose names I mentioned either as previous surgeons or as surgeons I’d considered. He even agreed with my reasons for ruling out some of the others. He spent a good 2 hours with us. He pulled the CT up on the computer and went over it with us. When his colleague, whose name I can never quite spell correctly for some reason, came for the cardiothoracic consult, Dr. Hallett stayed in the room. They talked right there with us. Our two eldest daughters were with us, and rather than insisting that they leave the room, as we feared, he included them in the conversation.
Afterwards, Mary asked me to talk to the girls about how they felt about it, as Gianna seemed a bit taken aback (as Mary and I both were) by seeing my aorta on the computer screen, and how shockingly huge it was. I said, “What do you girls think?”
Allie said she wanted them to do her surgery when the time comes, and said, “I think it’s a miracle!”
I later told Dr. Hallett on the phone what Allie said, and she said, “She may be right.”

"I am eternally grateful to God for both of these men."  -- my wife

“I am eternally grateful to God for both of these men.” — my wife

A House Divided Against Itself Cannot Stand: TBN sues itself, and shows how it compares negatively to EWTN

Paul and Jan Crouch, founders of Trinity Broadcast Network (TBN), are being sued by their own granddaughter for financial misdeeds. The granddaughter, in turn, is being sued by them on the allegation that *she* is the one who embezzled. What strikes me most about the article is learning the network’s operating budget, given that it’s already known how the Crouches live an extravagant lifestyle, and how it’s very clear they’ve never read the Gospel (a spokesman cites some verse about not owing anyone anything, but I guess he missed the part about “Let him who has two coats share with the one who has none”).

People often compare EWTN to televangelism (in the negative sense) and TBN in particular, especially since they both claim, for different reasons, to be the largest religious broadcaster in the world. I think that TBN takes the cake on that one, and not in a good way. Even granting their claim that the “private jet, multiple mansions and $100,000 mobile home for their dogs” are truly about security and housing network facilities, EWTN manages to do the same thing with just a few modest facilities: and, until relatively recently, just one.

Some people have been trying to say that EWTN’s lay staff are “in it for the money,” reaping huge benefits from donors’ money, etc., because they collect middle class salaries, while the Crouches really *do* that, and it’s proven in the difference between their operating budgets. According to the original article I linked above, TBN’s maximum known budget one year was $170 million. EWTN has a budget of about $24 million a year. Both networks broadcast worldwide. What’s the difference?

The Cockroaches–I mean Crouches

Mother Angelica, criticized for wearing a habit.

Some people, of all backgrounds compare the superficial similarities of the sets. Yet the criicisms of EWTN’s sets and studios are inconsistent: on the one hand is the claim that they don’t deserve donors’ money, overspend, etc., and that their sets are opulent and gaudy; on the other is the more accurate claim that their studios are still like a local TV station from the 1980’s. A Facebook friend pointed out that she visited EWTN’s studio at the JPII Center in DC a few years ago, and the cameras were being held together with duct tape.

Mary with Marcus Grodi

Mary with Marcus Grodi

When we visited there in 2000, we saw all the shows, but only attended 2 tapings of _Mother Angelica Live_. Why? Because the sets are all on wheeled platforms like sets in a play. There are, as you can see from the live shows, just a few rows of seats. Compare that to the “Mega Church” stadium on TBN. I’m sure that TBN would attribute that to the “success” of their “prosperity Gospel,” and I’d say, “in a worldly sense, yes, that’s very sucessful,” but the claim that EWTN’s people are secretly like the Crouches (or even the Medjugorje visionaries, who also have their summer homes and private jets) is ludicrous at best and calumnious at worst.

ACLU Suing Catholic Hospital

Doctor tries to “force his opinion” regarding abortion on patient. Patient complains. ACLU sues Catholic hospital. Sounds predictable, right?

Not this time.

This time, they’re suing on behalf of the *doctor*.

You see, if a patient goes to a doctor or pharmacy, even one that’s openly Catholic, and demands contraception or abortion, then it’s “The doctor/hospital doesn’t have the right to force their moral views on the patient.”

However, if a patient goes to a Catholic facility expecting it will follow Catholic moral teachings, then it’s “the patient doesn’t have the right to force her moral views on the doctor”

If you want to put your own blood pressure at risk, you can see the typical hate-filled account and commentary at “Reproductive Health Reality Check” (aka, “Reproductive Poisoning Delusion Check”).

What makes this case hit close to home, and the exact kind of situation this blog was created for, is that the patient in question was suspected of having Marfan syndrome. And much like the cases of so many people who’ve been advised to abort their babies for eugenicist purposes only to find out later the babies didn’t have the genetic disorder in question, the woman doesn’t even have Marfan.

So much for “pro-choice.” If a person with same sex attraction disorder wants therapy for that problem, New Jersey’s “Catholic” “Republican” governor has made it a crime to provide that person with such therapy. Now, the ACLU is trying to say that it’s illegal for those of us who put our moral views first in making medical decisions to seek out providers who agree with us.

The unnamed woman had an unspecified “family history” and was sent to the cardiologist by her Ob/Gyn because she got pregnant. If she had been going for an evaluation for school sports, we know darn well she’d be told, “there’s very little risk, go for it,” even though if you go by the pre-1990s statistics, sports are far more dangerous than childbirth (given the mortality rate for untreated women is much higher). If a person *were* diagnosed with Marfan, and chose to play sports anyway, that would be considered “courageous,” but a woman who chooses life is considered “foolish” and “throwing her life away for a blob of tissue” (better than throwing her life away for a blob of rubber).

At least one of the articles thankfully specifies “severe cases may be fatal,” but a “severe case of Marfan syndrome” would have been obvious before she was pregnant, especially if she had a family history and knew to look out for it. Media are about as accurate in reporting on Marfan syndrome as they are about reporting on Catholicism, and the reports on this case illustrate both areas of gaping ignorance. Typically, “Marfan syndrome” is referred to as synonymous with “aortic root aneurysm,” and while that, in conjunction with ectopia lentis, has become the distinguishing characteristic from other connective tissue disorders, if she truly had a “severe case,” with a family history, other signs would have manifested themselves. If she did not have any existing aortic enlargement, there would have been no more risk from childbirth than any other strenuous activity she’d likely engage in.

As for the Catholic hospital side, commentbox feminazis (noting that the definition of “feminazi” is “a person who uses feminism as an excuse to ensure there are as many abortions as possible”) are making all sorts of false claims about “women’s health care,” saying that Catholic hospitals don’t treat ectopic pregnancy, give “emergency contraception,” etc. Treating an ectopic pregnancy is not the same thing as an abortion; the death of the child is a matter of double effect, and in many cases the child is already dead. The Church allows for necessary medical care which may endanger the baby, so long as there is not a direct abortion. It’s why St. Gianna Molla demonstrated heroic virtue; she went above and beyond the call of duty, opting not to have life saving medical care the Church would have permitted. Similarly, while the question of contraception in the case of rape is a matter of debate in Catholic circles, most Catholic ethical guidelines state that “emergency contraception” is permissible within 24 hours of a rape, so long as conception has not yet occurred.

I have never understood, “Don’t get pregnant, or have an abortion, because your child might me killed by your medical treatment,” any more than I’ve ever understood, “Kill your child now so you don’t have to watch him or her die later.”

Also, she went to a cardiologist because she was pregnant and had a family history. This could be taken either way, but anybody with a modicum of experience knows that’s one of the first things the “experts” say about Marfan syndrome: that it can be fatal for pregnant women (I’m not sure what the statistics are, but again, best I can tell it’s no more dangerous than any other strenuous activity one engages in while trying to actually have a “life”).

I’m sure that this woman heard this “advice” already and specifically went to a Catholic hospital to avoid being pressured into an abortion.

Want to go to a doctor for advice on Natural Family Planning? That’s illegal now, because according to the reasoning of the the ACLU, the likes of Chris Christie and the Obama Administration, since contraception is legal, that makes NFP illegal. If it’s illegal to provide “gay conversion therapy” or to provide a 100% pro-life medical practice to people who want it, then should Weight Watchers be illegal? How about vaccinations, regardless of your reason for objecting? “Don’t force your religious views on your doctor.” Don’t want to benefit from embryonic stem cell research, fetal tissue research, etc.? “You can’t put your religious views ahead of your health care.” What about “alternative medicine”? How many of those people who insist on polluting their bodies with birth control pills yet won’t eat at McDonald’s or take antibiotics would like it if people suddenly started suing them and saying, “McDonald’s is legal, so you *must* eat there”?

The hypocrisy of the ACLU and the “pro-choice” euphemism is that liberty is a two-way street. Even if we take a bare modicum standard of “liberty,” setting aside Natural Law, medical ethics, etc., a free market needs to operate both ways.

Part 2: Reflections on The Memorial of St. Wenceslas

I realized that yesterday was the feast of St. Wenceslaus. When my Dad played for daily Mass, the last three days in September were an opportunity to break out some Christmas music: “Good King Wenceslaus,” and then the angel songs for Michaelmas and the Guardian Angels. It’s become a tradition for one of us to call the other on September 28 and for us to sing it together. In 2011 and 2012, I didn’t quite have the energy to sing the duet, but we tried. This year, it didn’t happen. So, here it is:

Good King Wenceslas; click for a Youtube of the Irish Rovers rendition (happened to be my first hit on YouTube, and since my Dad likes them, it fit)

The hardest part of this last 6 months for me (Thursday having been the sixth mensiversary of my surgery–another day that went by in a blur) has been my inability to sing. Not only can I not carry a tune, but I can barely sustain a sentence speaking. I’ve already explained in my previous post why I opted not to get surgery, and even if I got it, I wouldn’t be able to sing.

I cry almost daily about it. I first mentioned it the day I “got my voice back” after my “temporary injection.” I was watching the 2004 _Phantom_ movie with the kids and couldn’t help but burst out with “Angel of Music,” only to croak like Carlotta in “Poor Fool He Makes Me Laugh.” I keep dreaming that suddenly I try and, even though I still can’t talk, I can sing like I did before.

Once in Fifth Grade, my friend’s father followed me to the car leaned down when my Mom rolled down the window, touched me on the shoulder, and said, “I know what happiness is! Teach this kid a new song!”

The late Laurie Beechman (1953-1998), Broadway’s longest-running Grizabella. Click here for an amateur recording of one of her performances. Everything comes to a halt when the audience applauds.

When I was in high school, and my great ambition was to return to St. Jude (now closed) as a teacher or principal, another friend, Jeff, my future best man, would joke that “twenty years from now” (which is now), I’d still be walking down the hall singing Andrew Lloyd Webber shows (all parts, all the way through), come into teacher’s lounge, and Mr. Z would still be sitting there, saying, “John, shut up!” Or the time his dad was preparing a sample interim for a demonstration of how to write them in the “new” gradebook software, and wrote, “John Hathaway is a terrible student. He’s in my Trig/Pre-Calc class. He sings in the halls, falls asleep in class, tells jokes, and has a 110 average.”

Side story: the latest I ever went into the pool was in mid-October (I think the 15th), when their family came over for dinner, and Jeff convinced me to go swimming. The next day, at lunch, a girl who graduated the year before sat at our table. We were talking about swimming the night before, and she said, “You were at his house?” (Our parents were friends through church and Cursillo). “Yeah, his mom and my mom are friends,” he said. “And my dad and his dad,” I replied. “And my dad and him,” Jeff retorted, referring to the amount of time his dad I and would spend talking about computers. A few years later, during my parents’ annual Christmas party, which had a particularly big guest list that year, Jeff went to get a regular cup from the cabinet instead of a disposable. His sister scolded him and said that was impolite: “That’s for family.” “But I’m like family, aren’t I, John?” he replied, and I validated. When Mary met Jeff, he asked her, “Do you like Barry Manilow?” She said, “I don’t know yet.” He said, “Well, you’re going to have to.”

Here Comes the Night (no link)

_Evita_ got me through the Clinton years, and Eva’s poignant prayer at the end of “Waltz for Eva and Che” has always been a catharsis for me: “Oh, what I’d give for a hundred years, but the physical interferes–every day more, O my creator! What is the good of the strongest heart in a body that’s falling apart? . . .”

Back in VA, when I’d see a sign for Dumfries, or Mary would talk about her friend who used to live in Carlisle, PA, or just being on the VRE or Metro, would evoke “Skimbleshanks.”

“They were sleeping all the while I was busy at Carlisle Where I met the stationmaster with elation! They might see me at Dumfries if I summoned the police If there was anything they ought to know about.”

Allie (who, after her most recent growth spurt and personality growth, is starting more to fit her full name, Alexandra) has always preferred Provolone. One time, I bought her some when we had gone to Wal-Mart for one specific reason, and she said, in the car, “Well, are you gonna sing it?” Whenever we’d pick some up at the grocery store, or go to Subway, I’d sing the verse from the Italian mouse in “There Are No Cats in America” from _An American Tail_:

“The Times were harrd in Sic-cily; we hada no provolonay! The Don, he wa-as a tabby wi-ith a taste for my brother Tony! When Mama went to pleada for him, the Don said he would see her. We found her Rosary on the ground. Poor Mama Mia! BUT–“

During our first two years here, when I was doing my gardening, I would see my sunflowers, think of “Like a sunflower, I yearn to turn my face to the dawn,” and start singing “Memory,” or just doing labor which always leads to “Look Down” or “It’s a Hard Knock Life,” and thus everything that follows. I’d sing “Mungojerrie and Rumpleteazer” when I was in a joking mood about Josef & Clara’s mischief and bickering.

In the ICU and rehab, I kept playing songs in my head, like Peter Cetera’s “Glory of Love” or the Four Seasons’ “Working My Way Back to You.”

Now, I just keep thinking of the best song from _Love Never Dies_: “Till I Hear You Sing”

Love Never Dies

Part 1: “We only read you when you write”

I truly thank God for Facebook and for the technology that both keeps me alive and compensates for each new problem that comes along. It can be tough sometimes to tell if I’m staying up because of FB or because of the pain, but I only have to think of the many nights before the Internet (and, thus, before Mary) when I would lie awake in pain and have nothing to do except read if I felt well enough, no one to talk to, etc. And now, with my vocal cord paralysis, it has been quite a living Purgatory as someone who “loves to talk.”

In July, I had a window of opportunity when my “temporary injection” gave me a voice that just sounded like laryngitis, which, when you think about it, it technically *was*. They inflated my vocal cords with a substance (the doctor kept referring to it as “gel,” but the nurse said it was Botox) to see how well it worked. People asked me to say something profound for my “first words,” and I quipped, “It will probably be something like, ‘[N], stop that!'” As it happened my first words, two days after the injection, were, “Let’s see if this works.” Then I began to recite the Gettysburg Address, which I have mostly memorized because of a great lesson on critical reading I built around it. When I started calling family members, the joke was, “I never thought the day would come I’d be glad to hear John talk.” When I called Mary’s parents, and got disconnected, her dad called back and said, “Mary, some guy just called impersonating your husband!”

When it wore off much sooner than expected, and the scope showed no change in my paralyzed cord, the doctor jumped to the most advanced procedure, reenervation, when they bypass a nerve (he didn’t say where they get the nerve from to restore nerve activity in the paralyzed muscle. He even said that he was reluctant to do the procedure on a Marfan and that it was probably too late (as I later read, the procedure works best 3 months after the paralysis, and this was already 5 months). Everyone with Marfan synrome who had vocal cord paralysis after an aortic repair told me that the laryngoplasty (the standard surgical method) didn’t make much difference, and a couple said they lost their voices entirely. Given the risks of the two surgeries, and the minimal benefit I got from the injection (since I still couldn’t sing–more on that later), I decided to leave well enough alone. If God wants me to have it fixed, or He wants to heal me miraculously, He’ll do it just like He did with my aorta (both times).

In the meantime, I constantly think the way I used to, gathering ideas I’d like to share with Mary, the kids, my parents or her parents in conversation, and then remembering I can’t. Somehow, it’s very difficult, though, to “keep in touch” with family online. My mom’s the only one who seems to use email much. My siblings have always been less “into” technology than I am.

Online, I can still share my thoughts. Fittingly, since we met online, chat has become the most effective means of communication for Mary and me. Skype was literally a life saver for me in the hospital, and my future sister-in-law suggested we keep in touch that way, but I just figured out how to get my account working on “my” laptop. I also just finally fixed a glitch on our web mail with Comcast. Even when I had a pretty clear speaking voice after my injection, I still had to wait for times when it was quiet to call. I was sharing all these frustrations with Mary last Sunday afternoon and she said, “Hey! Your voice actually sounds pretty good right now!” I realized it did, and, though I missed my OCDS meeting yet again we sampled a re-entry to the social scene by arriving late to a gathering we’d been invited to, and the next day I called my parents. Even so, ironically, I just don’t know what to say anymore. Thoughts I just want to share for the sake of sharing I do on Facebook and on here and consider them “shared.” Writing this long two-part piece has taken me about 2 or 3 hours so far, and I’m not even finished editing from the versions I posted on Facebook. So I really don’t know what my family members have or have not read on Facebook or my blog, and emailing seems redundant: so much I wish I could say and yet I’m at a loss for words or motivation.

I don’t know which part of my ICU experience I look back on with greater dread: the time period where I was mostly anesthetized and dreaming/hallucinating, or the few weeks where I was fully aware but unable to communicate except by tapping on letters on a board. My hands weren’t steady enough to write and, honestly, I haven’t really tried to write other than signing my name since I’ve been home.

I was essentially “locked in,” having the trach in my throat keeping me from speaking at all. Once I got over the paranoia and the shakes enough to trust the computer, everything changed, and everyone noticed it, but prior to that, although I did get some reading done, I spent most of my time praying the Jesus Prayer. It was very effective spiritually, but I don’t think I’m quite up to that level of hermitage yet.

I’ve blogged before about the greater significance of “Ships” (written by Ian Hunter; popularized by Barry Manilow), always one of my favorite songs, now that I’m an adult, how I always dreamt of acting it out with my dad or with my kids, and having one of them sing it for me when I’m gone. Now, the lyrics are all the more poignant. While searching for an image to go with the song, I found this Henry Wadsworth Longfellow poem:

“He said, ‘It’s harder now, we’re far away. We only read you when you write.”

Give Kids The World: Ice Cream for Breakfast

Give Kids the World Village is having a special fundraiser/awareness campaign called “Ice Cream for Breakfast.”

Ice Cream For Breakfast is a grass-roots awareness and fundraising campaign inspired by one of the more unique traditions of our thousands of visiting wish families. At Give Kids The World, families are treated to complimentary, all-you-can-eat ice cream in the Village’s Ice Cream Palace from morning until night- even for breakfast!

We hope you will help support the Village by setting a goal, creating a mini-campaign online and asking your friends and family to join you in your efforts. Once you meet your goal we encourage you to host your own ice cream social or just meet your supporters for a scoop at your neighborhood ice cream parlor.

You can read more and either make a donation or start a mini-campaign by clicking here.
Give Kids the World Village is an amazing entity: an all-inclusive, self-contained resort for “Wish families” in Orlando, FL. The resort itself has enough to fill a week, especially for families with disabilities. While we were there last November, we encountered families who ended up spending most of their vacations in the hospital, although we were all blessed with relatively stable help. Families are supposed to come through sponsoring “Wish” programs like Make a Wish, though I’ve read of at least one family that raised their own funds independently. It’s a “once in a lifetime” vacation, and a particular child can only be sponsored once, but families with multiple children with severe illnesses have been known to come back for other children.
In any case, the wish child and immediate family are always welcome to return and visit the resort for “day use,” play miniature golf, ride the carousel, etc., and eat at the restaurants (below) for a nominal fee. The child gets a “star” in the Castle of Miracles:

Allie's Star is somewhere in this "constellation"

Allie’s Star is somewhere in this “constellation”


Many of the volunteers we encountered were relatives of past wish children. They say that the staff is like over 90% volunteers, and they ranged from teenagers to college students to working adults to retirees.
The Make a Wish process is a lot simpler than one might think. The child no longer has to be terminally ill: just a diagnosis of a condition that may likely cause death before age 18. Indeed, I saw on my Facebook news feed the other day an article from Make a Wish about how “Wish children” tend to have better prognoses. We applied for Allie, got a letter from our primary care physician, and within 2 weeks got a letter that she was approved. This was about a year ago. Two local volunteers met with us, talked in detail with me and with Allie about her wishes, her interests, etc., and with me about our family’s overall situation. I explained that while it was Allie’s “wish”, the urgency pertained to my health, and they put us on a fast track to get in for November.
I hadn’t blogged much about it because I’d intended, and still intend, to write a book about our experience, based around selections from the literally thousands of digital photos we took.
Anyway, a week at GKTW includes 3 days at Disney World, 1 day at Sea World and 2 days at Universal/Islands of Adventure. It includes all the Make-a-Wish amenities (like cutting in line and free professional photos), plus things that are specific to GKTW: every morning and evening at the resort has an “event.” The family gets a food card for 3 meals a day at one of the restaurants (the Ginger Bread House, all you can eat buffet, sponsored by Perkins, a sandwich shop sponsored by Boston Market, or an “Express breakfast” at the Ice Cream Palace). Then there’s all you can eat Ice cream from early in the morning till like 11 at night, and the possibility of having pizza delivered to the villa: an option we used one evening just for the sake of trying it, but they feed you so much you don’t need to.
In addition to the “cutting in line” and free photos at the amusement parks, GKTW has characters representing the various parks almost every morning. There is some sort of party almost every evening, and the family gets copies of all photos taken by GKTW photographers, along with options in the going away package to get different albums, posters, etc. We have a nice poster hanging on our wall of our family with “Belle.”
"Tale as old as time . . ."

“Tale as old as time . . .”


The founder of GKTW, is Henri Landwirth, arguably one of the most amazing “unsung heroes” of the world. A Holocaust survivor, Landwirth got his US citizenship and was immediately drafted to the Korean War, later using the GI Bill to get a degree in hotel management. He worked his way up in the hotel field and got into the hotel business in Florida right when NASA and Disney World were getting started. He also made friends with some of the astronauts. Eventually, he started a number of charities, including an astronaut scholarship, a charity to provide clothes for homeless and abused children, and, of course, Give Kids the World. He had been involved with Make-a-Wish since the seventies, serving as one of the main providers of hotels for wish families. When he learned that a little girl passed away before her arrangements could be made, he started GKTW to expedite travel arrangements. Over the years, it grew from free hotel rooms to the villas to the full resort it is today.
We made ample use of the unlimited ice cream, stopping every day right before we left for the parks to get shakes and/or sundaes “to go,” and having “ice cream for breakfast” on our second to last day. However, we didn’t many pictures there.
Our last meal at the Ice Cream Palace

Our last meal at the Ice Cream Palace