Category Archives: worth of the disabled

Please help us get a new van.

In 2008, I got my first motorized wheelchair, and we were blessed with an opportunity to buy a twice used 2000 Chevrolet Express 3500 wheelchair van, which was first a prison van and then a medical taxi (I call it our “Paddy Wagon,” since the expression came from stereotypical Irish cops collecting groups of stereotypical Irish drunks in police vans).
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The van has served us well for almost 9 years as our primary vehicle.  “We’ve” had to put some money into it to keep it going, but when it all adds up, it was less than we’d have paid even for a regular van in payments, much less for a handicapped van that can fit our family.

Me and kids at Roper

Me and my kids in 2013, after my aortic graft surgery

Our economic situation simple: we make a little less than enough to get by in modern America.  Unless I should obtain the time and inspiration to write a best-selling book, we strike the lottery or get a really good  investment, we’ll never make much more than we do now.
So when a major expense arises, we need help.
Every few months, something malfunctions in the van.
We had to purchase a second vehicle, using up the small amount of room we had in our budget to add another monthly payment, so we only have to use the van when we need the power chair and so we have a backup when it fails.  The very day we went to pick up the “new” car, the lift stopped working.  When my abdominal aneurysm ruptures or requires surgery, if I survive, I will most likely lose my ability to walk completely.  In the meantime, I need to be able to keep strain off my aorta to delay that surgery as long as possible.
It won’t be long before our eldest daughter has to use a scooter or power chair–technically she already should because she subluxes her ankles every time she walks very far, but we can’t get insurance to pay for one.
As communities, Muslims, Mormons and Evangelicals seem to be very good at rallying around their members.  We Catholics, as a community, need to show the same generosity with ourselves as we do with strangers, to provide the “safety net” that keeps people from falling completely into destitution.  On an individual basis, we have many wonderful Catholic friends who have helped us more than we can ever thank them for.  We know someone out there can afford to help us.
We’re hoping to get a used, 2015 or 2016 Ford Transit Wagon XLT 350, medium height, for around $25,000.  I figure we can modify it ourselves for around $3000-5000.
So accounting for fundraising fees, taxes, etc., we’re trying to raise about $30,000-35000 just for that, though if a generous benefactor wants to help with about $80000 in other expenses we expect to face in the near future, we’d be very grateful.  If someone out there reading this happens to own a car dealership or know a car dealer (I recently heard a rumor that a major Catholic donor in our state owns a dealership), I’m going to be bold and ask if, in the name of Our Lord, you could please donate a van directly?
Please share this post. Please share the link to our fundraiser.  Most of all, please pray that God opens people’s hearts to share, and that He profoundly blesses all those who have helped us.

Please click here to donate.

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Yes! Here, at last, is my understanding of Suffering

For the past couple days, I’ve been listening to the audiobook of Brother Lawrence of the Resurrection, OCD’s Practice of the Presence of God.

A forerunner of St. Therese’s Little Way, whose short collection of letters is often identified as a perfect example of Discalced Carmelite spirituality, Br. Lawrence has never been able to be elevated to the altar even as a Servant of God because we know so little of his life.  Like Thomas a Kempis, and the housewife in C. S. Lewis’s Great Divorce, I think his obscurity even in the eyes of the Church is ironically a sign of his great Sanctity.  Br. Lawrence’s 11th letter summarizes exactly my view on the meaning of illness, and what I pray for when asked to pray for someone who is ill:

Eleventh Letter: I do not pray that you may be delivered from your pains; but I pray earnestly that God gives you strength and patience to bear them as long as He pleases. Comfort yourself with Him who holds you fastened to the cross. He will loose you when He thinks fit. Happy are those who suffer with Him. Accustom yourself to suffer in that manner, and seek from Him the strength to endure as much, and as long, as He judges necessary for you.
Worldly people do not comprehend these truths. It is not surprising though, since they suffer like what they are and not like Christians. They see sickness as a pain against nature and not as a favor from God. Seeing it only in that light, they find nothing in it but grief and distress. But those who consider sickness as coming from the hand of God, out of His mercy and as the means He uses for their salvation, commonly find sweetness and consolation in it.
I pray that you see that God is often nearer to us and present within us in sickness than in health. Do not rely completely on another physician because He reserves your cure to Himself. Put all your trust in God. You will soon find the effects in your recovery, which we often delay by putting greater faith in medicine than in God. Whatever remedies you use, they will succeed only so far as He permits. When pains come from God, only He can ultimately cure them. He often sends sickness to the body to cure diseases of the soul. Comfort yourself with the Sovereign Physician of both soul and body.
I expect you will say that I am very much at ease, and that I eat and drink at the table of the Lord. You have reason. But think how painful it would be to the greatest criminal in the world to eat at the king’s table and be served by him, yet have no assurance of pardon? I believe he would feel an anxiety that nothing could calm except his trust in the goodness of his sovereign. So I assure you, that whatever pleasures I taste at the table of my King, my sins, ever present before my eyes, as well as the uncertainty of my pardon, torment me. Though I accept that torment as something pleasing to God.
Be satisfied with the condition in which God places you. However happy you may think me, I envy you. Pain and suffering would be a paradise to me, if I could suffer with my God. The greatest pleasures would be hell if I relished them without Him. My only consolation would be to suffer something for His sake.
I must, in a little time, go to God. What comforts me in this life is that I now see Him by faith. I see Him in such a manner that I sometimes say, I believe no more, but I see. I feel what faith teaches us, and, in that assurance and that practice of faith, I live and die with Him.
Stay with God always for He is the only support and comfort for your affliction. I shall beseech Him to be with you. I present my service.

What is truly a “slap in the face”?

We’ve all heard by now of the suicide of Brittany Maynard, a 29 year old brain cancer victim who decided to become the poster woman for so called “death with dignity,” and then got mad when people criticized her “personal choice.”  The Pontifical Academy for Life issued a statement condemning assisted suicide, and calling her death “reprehensible.”  Maynard’s mother has now posted an article on some site called “Compassion and Choices“, saying that PAV statement is “immoral” and “a slap in the face.”  The Culture of Death is now calling it “the Pope’s sin.”  I submitted the following to “Compassion and Choices.”  Re-posting here:

You posted an article by Brittany Maynard’s mother, claiming that the Pontifical Academy for Life’s statement on her daughter’s suicide is a “slap in the face” and “immoral.” No, Brittany Maynard’s suicide, and your entire “death without dignity” movement is immoral and a slap in the face to every one of us who deals with debilitating, life threatening illnesses. I have Marfan syndrome. I have suffered horrible pain every day of my life. I have dealt every day with the knowledge it could be my last. I have also dealt quite regularly with the temptation to “end my suffering” in this life–but a death with *true* dignity, the death of a Saint, is far more appealing to me. The risk of eternal suffering in Hell, and the knowledge that Jesus died undeservingly for my sins, and continues to suffer that infinite pain of the Passion for me, make it worth it to me to share His sufferings now for love of Him. Leon Bloy said the only tragedy is not to be a Saint.
What is reprehensible is the notion that people with terminal illnesses should be killed or pressured to kill ourselves because we are a “burden” to others. What is reprehensible is saying that it is dignified and courageous to die the death of a coward.
I pray that Brittany Maynard was not culpable for her decision, or that she repented in her last seconds, but what she did was neither moral nor compassionate, for herself or others.

Sincerely,
John C. Hathaway, OCDS

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).

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