Category Archives: worth of the disabled

People understand “cancer”

(John drafted this but never finished it.  His lifelong struggle was getting people to understand that his condition was as terminal as cancer.  It was very hard for me, as his wife, to see that people did not understand this, how delicate his precious earthly life was and every time they beheld my darling husband, they were beholding a wondrous miracle of God.  Humankind cannot bear very much reality.)

They understand “heart disease.”
They understand “diabetes.”
At least as well as they “understand” anything about someone else’s sufferings.
I’ll never “get better.”  I’ll never “recover.”  I have good times and I have bad times, but my “good times” usually lead directly into my “bad times” because my body can’t take it.
I have  a dissected aorta.  If such things can be quantified, articles on pain often mention aortic dissection as the worst possible pain a person can have (though it can also be asymptomatic).
I have 2 aortic grafts, including an artificial valve.
I have a 4.9 cm aneurysm in my gut that will, if it doesn’t burst first, have to be operated on once it hits 6 cm.  Right now, my left kidney and left leg are getting their blood supply. from scar tissue.  The most likely best outcome of my next surgery will be that I lose just one leg or kidney.
In fall 2008, I spent 2 months coughing and taking antibiotics for “pneumonia” and was told I had a nodule on my left lung that looked like a possible tumor, too small to biopsy or operate on yet.  After my dissection in 2011, I found out it wasn’t a nodule or a tumor–it was scar tissue from a lung collapse that wasn’t properly treated–the two months of “pneumonia.”  I spent two months thinking I had some horrible contagious disease and then 2 years after that thinking I had early stage lung cancer (attributed to my frequent CT radiation) because an urgicare doctor didn’t know that hearing no air in my lung (his words) meant it was collapsed and not pneumonia.
My natural lenses sit at the bottoms of my eyes, attached by a few zonules.  If those ever tear completely, my lenses will pose a risk to my retina and have to be removed.  As it is, if I turn or move my head too quickly, or lay flat, my lenses float up, disrupt my vision, disrupt the pressure in my eyes, and give me a headache.
I have, for simplicity’s sake, a brain aneurysm.  It’s in a vein, so they say it’s nonoperable and won’t burst.  But it’s right in one of my motor cortexes, and when it acts up it causes everything from slurred speech and forgetting how to sign my name to migraine to loss of motor control.
I have a tortuous carotid artery.
I *used* to have mitral valve prolapse, but that has apparently been healed by the Lord.
I have a paralyzed vocal cord, the cost of my last aortic graft surgery, which not only limits my speech but my swallowing and breathing.
I have gastroparesis, and eating too much or eating the wrong foods causes unbearable cramping, nausea and occasionally vomiting.
That’s not getting into my chronic joint problems and the side effects of my medicines.

“Pro-life, homeschooling committed Christians who abstain till marriage then stay married to the same person are freaks”

I tolerate a lot, maybe too much, when it comes to TV and movies, but I appreciate seeing the consequences of actions, even if the writers depict those consequences unwittingly.

20 years or so ago, when Ellen Degeneres and her eponymous sitcom came out of the proverbial closet, ABC said that LGBT were about 10% of the population and deserved to be represented on TV.  Now, most studies have said that even if those who have “experimented” to some degree or other are included, LGBT are at most 6% of the population, and really more like 3%.  Interestingly with all the propaganda in recent years, that number has risen a whole half a percent!  Amazing how the number of people who are “born” a certain way increases.

But, fine, 4%.  Yes, there are people who identify that way and yes they should be depicted *honestly*.

But a year or two after the Ellen controversy, when the Catholic League lead a coalition of pro-life, pro-family, Catholic, Protestant and Jewish organizations protesting Nothing Sacred, ABC said, “We can’t have what amounts to 10% of the population dictating to us.”  Yet *that* coalition represented the views of 50% of the population.

Close to 70% of Americans believe abortion should be illegal under at least some circumstances, yet to most TV shows, pro-lifers are a minority and freaks.

I read an article once about the unrealistic depiction of sexual relationships on TV that pointed out for example how many characters known on TV shows as “losers” who can’t find a girlfriend actually have more sexual relationships, particularly in a short time, than even relatively promiscuous people in real life.

How often, outside of sitcoms and a couple reality shows that may be exceptions that prove the rule, do you see couples who are happily married and stay married?

How often do you see people on any fictional TV show who are committed Christians and serious about their faith and love their faith?  Even The Middle and recently cancelled Last Man Standing depict religion as something important but still a kind of chore or ideology (though Mike’s monologues on Last Man Standing sometimes make up for it quoting the Bible and even the saints).  Characters who are in any way serious about religion are, again, freaks and weirdos (which, yes, many people who are serious about religion in real life are also, and should be, but not the way we’re depicted).

How often do you see families on TV with more than 3 kids that aren’t “blended”? (and yes, child labor laws come into play).

I could go on with examples, but if it’s a question of “equal representation,” all the demographics I listed are a higher percentage of the population than LGBT yet they hardly ever show up and are treated as weirdos and bigots when they do.

Meanwhile, in the inverted Natural Law, where Neuhaus’s Law is in full effect, sex is meaningless recreation.  People on TV don’t even wait for a commitment, much less marriage, sex is a “test”–and saying “I love you” is a big “event” that comes after a couple have already engaged in sex not as an act of consummation of love but as a fulfillment of desire.  And, yes it has been this way on television for decades, and in “real life” without the Biblical moral framework, but what strikes me is how, in recent years it hasn’t even been a semblance of concern for decency or depicting any kind of negative view of sexual promiscuity, but an overt sense of saying, “This is perfectly normal, and it’s Judeo-Christian morality that’s aberrant and bizarre.”gs5x4j0

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

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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

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

Measuring One’s Life in Coffee Spoons: About Spoon Theory

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The “Spoon Theory” is an increasingly popular way for people with chronic health problems to explain how we live our lives.  With no apparent reference to T. S. Eliot intended, it was developed by Christine Miserandino of ButYouDon’tLookSick.com to answer the question, posited by her best friend, of what it was like to have Lupus.  Here is the article in which she tells the story.
She was asked by her best friend to explain what it’s like for her to have lupus–a question she found puzzling given that her friend had been with her through the diagnosis, etc.–until she realized her friend meant experientially. So, after a pause for thought, she grabbed every spoon she could reach. She handed the stack of spoons to her friend and said, “You have lupus.”
She then went on to say that the spoons represented the ability to “get things done.” Most people think of themselves as having limitless “spoons,” but people with chronic ailments are keenly aware of their “spoons”: sometimes there may be more; sometimes there may be less, but when the spoons for the day run out, you’re done. Sometimes, you have to “save up” spoons for a big event or in case of illness. Sometimes, a particularly bad day creates a deficit. Then she went on to explain how it’s not just “jump out of bed and get ready for work”: getting out of bed alone is a huge achievement that costs a spoon or two, then getting breakfast, taking medicine, taking a shower, etc.–what we now refer to in my house as ADL’s–Activities of Daily Living–the key goal in my recent stint in Rehab following my surgery on my descending aorta.
Reading Miserando’s account pretty much describes my experience living with Marfan syndrome, except that for me it’s been a lifelong thing. Even many others with Marfan do not have as severe a manifestation as I do: they were diagnosed as adults and have a lot of problems they’ve encountered in adulthood but weren’t severely effected as children the way I was. Then there’s my aortic root replacement in 1996 which temporarily gave the illusion of “health” (it’s amazing how many health care professionals I’ve encountered in the past few months who are confused by the fact that I’ve had *two* surgeries for aortic aneurysms and/or don’t understand what an “aortic root” is). That was quite a difference from my recent surgery, after which, experientially, I really feel a lot *worse* than I did before it.
People say things like, “Glad to know you’re doing better,” and it’s hard to know what to say. Even the first time around, I was technically “doing better” and just aware of the long term risks I’ve since lived through. This time, I’m not only facing the risks to my remaining “natural” aorta, the two grafts themselves, my valves, and my cerebral aneurysms, but on a day to day basis, I feel worse than I did even in the two years between the dissection and the surgery.
How do you explain that to people who are so optimistic after praying so hard?
When people ask, “How are you doing?” I say, “Let’s put it this way: I’m here.”
My left shoulder was dislocated or frozen or something–I have a week and a half till I see an orthopedic surgeon to find out exactly how badly–but it’s hurt me constantly since April, in a degree that no joint has hurt me before. My left rib cage still hasn’t healed; it constantly hurt and is still swollen.
I have no voice beyond a whisper and occasionally sounding like I’m hoarse, due to a paralyzed vocal cord. A temporary injection that was supposed to last 3 months lasted about a month and a half. It gave me enough sound to hold a conversation, but I still couldn’t sing or speak loudly, and my voice used to be one of my biggest assets (I was a teacher; it was literally my livelihood). Every other person I’ve “talked to” who has Marfan syndrome, had vocal cords paralyzed, and had the repair surgery, said it gave minimal benefit at best. The only person whose seen improvement was a fellow who had his surgery a month before I did, is a paraplegic because of it, and had his vocal cord come back “miraculously” without intervention. So I decided against surgery. Even with surgery, I’m never going to be able to sing or engage in public speaking. The main advantage I’d get is the ability to speak on the phone, for which I don’t have enough “spoons,” anyway.
That’s not getting into the tachycardia, the distinct pain that I know is my aorta–both the throbbing in my remaining arch and abdominal aorta, as well as the “stitch pain” around my grafts–I’m 90% sure there will be at least a few millimeters of growth in both the next time I have a CT scan.
I was very grateful to my attending physician and my physical therapist in Rehab. They actually listened to me, and did their own research on Marfan syndrome. My physical therapist told me that what physical therapists use is the “Borg Rating of Perceived Exertion”, a scale from 6-20, where 6 is “No exertion at all,” and 20 is “Maximal exertion.” 10 is “Light,” and that’s where he told me to stop. It’s a subjective scalle that emphasizes the patient’s perception, but it was nice to have a professional telling me what I already knew, versus pushing me past my limits. In fact, the physical and occupational therapists repeatedly told me that it was nice to have a patient they had to tell to *stop*, since I was so eager to get through my exercises (so I could get home to my family). I saw this in some of the other patients, who would sit there and cuss out their therapists over minimal activities while I was tearing through and saying, “What’s next?”
Most of the time, my sessions would get cut short, and I’d be sent back to bed because my vitals were too high–again, they knew as I already knew that a pulse of 100 is too high for a Marfan, but in ICU they couldn’t get it lower than that.
So I exceeded all the goals they set for me in time for my pre-arranged, insurance-mandated discharge date. Then for the first month, I needed extensive help from my wife and kids for my ADLs. I’ve gotten a bit more independent, but I still have a lot less “spoons” than before, and it’s not likely I’ll get them back.
The thing people don’t understand about a condition like mine is that it doesn’t get better. Even ignoring the aorta, there will always be new problems (like my shoulder) to come along. That doesn’t mean I’m pessimistic or “giving up,” but I just face the facts: it’s what I mean by “36 with a life expectancy of 20.” As I noted earlier, “I’m here.”

11 “Hollywood” Films (and a PBS Cartoon) with Pro-Life Themes

PersonhoodUSA has posted a great piece on BuzzFeed called “10 Hollywood Movies that Accidentally Affirm Life.”
As some commentors have said, many of these are pretty intentionally pro-life (except _Horton_, given that “Dr. Seuss’s” widow sued pro-life groups for quoting the book), and I have blogged previously about _Knocked Up_, _Juno_, and _Waitress_.  However, one that is not on the list and is definitely unintentional is _Finding Nemo_, which includes the title character witnessing the deaths of his mother and “brothers and sisters” while he (along with his siblings) is still inside an egg.  Nemo is, of course, born disabled, and acceptance of his disability is a major theme of the movie.
Another good cartoon (though not a “movie”) that I’ve blogged about before is the _Magic School Bus_ episode “Cracks a Yolk,” starring pro-choice feminist Lily Tomlin. 

You might also want to check out

Have a Heart: Blues Singer Robert Johnson

Robert Johnson, a legendary blues singer who died before his time, is another of the most credible “historical Marfan” diagnoses.

According to this site, he had long arms, legs and figures; hyperflexibility; lazy eye and “cataract”; and died a sudden death in a manner often described with aortic dissection. 

Another link

Wikipedia

I most feel like a parent when the kids are sick

Most of my fondest memories of my parents come from when I was sick-sick, or in the hospital, or the doctor’s office.

I mean, Dad did that “typical father” stuff, like teaching me Shakespeare at 8 and preparing me for the SAT at 9.

Mom and I had great conversations in the car going to school or running errands. And she used to buy writing journals back in PA, and we would sit at Presque Isle State Park or just in our house and write, and sometimes if I was lucky, she’d share her poems with me.

Yet the first thing that comes to mind of my childhood in general, and certainly with my parents, was doctors’ offices, tests, hospitals, or just in bed with a cold or flu. After all, that was the time when it was just me with Mom and/or Dad: nothing and no one else in the way.

I have a collection of “Mary Pictures.” I keep it on my phone, my laptop, and all the desktops. I made a video of it. One of my favorite pictures was taken at my nephew’s birthday when we were engaged, and I was having chestpain, and Mary was still in the “this is all new to me, so I’m gonna panic every time he has pain” stage. I was laying there on the sofa having chest pain.

It’s something that, prior to Mary, I did quite often, but it was always one of my deep emotional pains that my body kept me from participating in so much of the “basics” of life, and I spent so much time alone in the other room. So Mary was sitting there next to me on the couch, holding my hand, and someone took a picture, and I love that picture.

So, as a husband and a father, I feel like it’s my chance to “give back” when someone’s sick. Sadly, especially in the past couple years, I’m not much use to Mary when she’s sick, especially if I’m sick at the same time. But she also might not even know about certain underlying health conditions she has if we weren’t so aware of those matters because of me.

Her POTS, mitral valve prolapse and afibrillation would still be “just laziness” or “just fatigue” if she didn’t have me to confirm, “Yeah, that pain you’re having sounds cardiological. Go to the hospital.” Ironically, just a month before she went to the hospital and found out about her heart condition 2 years ago, I had been laying my head on her chest and thinking how nice it was to hear a “normal” heart beat. I felt like I cursed her.

Allie picked up very quickly on what a bonding experience the doctor’s office is, especially since I presented it to her that way.

She had her first echocardiogram (discounting one when she was a newborn) a month or so before Mary’s first sonogram with Gianna. They let her sit in on the sonogram since she’d already had an echo (for those who don’t know; it’s the same machine; just pointed in a different spot), and she already knew how to behave at a doctor’s office. After watching her sister’s sonograms, it also made her more comfortable with her echo.

She often accompanies me when I take her siblings to the doctor or the hospital and, with one exception, she’s always been a big help, and she’s always impressed the doctors.

Then there’s Gianna, the little nurse. She’s not as adamant about her life plans as she used to be, but we still tell her she’d be a great nurse if that’s what she chooses to do.

I will always remember Allie’s first major stomach bug when she was a one year old, which was I think the first time I took her to the pediatrician for a “sick visit.” I will always remember having to give the pediatrician a detailed description of what was in her diaper–never in a million years thought I’d be able to tackle that task. When she was born, the nurse laughed at me for wearing a mask and gloves while learning how to change a diaper (of course, in addition to the whole “grossed out” thing, I was also extremely paranoid at the time about my valve and infection).

I’ve always said my real “parental boot camp” came when Allie was a little over a year old. We all slept in the same room, and we kept the baby gate up in case she woke up. She knew how to walk, and she had just learned how to take off her own diaper. I woke up to discover that she had already woken up, taken off her diaper, and made a big mess with what was inside it. I had to clean the bed, the bedclothes, the carpet and the kid.

I was also used to being able to call the cavalry in such situations. I called Mary’s aunt. I called her parents. No one answered. When I finally got in touch with someone, it was her sister: “I can’t come over; I’m at the hospital because Mom’s had a heart attack.–But dad says not to tell Mary at school.” So now I had to clean all that stuff up on my own without Allie getting into further trouble *and* get her dressed so we could go to the hospital and find out what was happening with my mother in law.

Somehow, I did it, and I felt like I’d “arrived.”

Then Gianna and Joe came along with their severe food sensitivities. . . . Another permanent memory is the time when Gianna had some kind of accident on Allie’s favorite doll, “Gillian”–which she had received from my sister the previous Christmas. Mary was like, “The doll is ruined. Throw it out!” Allie was crying. I put it in the bathroom, cleaned up the rest of the mess, threw stuff in the wash, then went back to the bathroom and used shampoo, baking soda, Oxy-Clean and elbow grease till Gillian looked like a bright new doll.

Then there was her first stomach bug as a preschooler. I was working my job in Springfield at the time, and I had to go in on Saturday morning. They’d said it was OK to bring your kids on those Saturdays, and Allie had been looking forward to it.

So Friday night, woke up in the middle of the night, throwing up. I slept on the couch; she slept on the recliner. Mary and the other two at the time stayed upstairs. Next day, she went with me to work and mostly hid under my desk. Late in the morning, she was hungry, so I got her some crackers and pretzels from the vending machine, but I insisted she try ginger ale. “I’ve already drank water,” she said. “When did you do that?” I asked. “I got up in the middle of the night and got myself a glass of water, and I held it down OK.” That’s Allie.

Three eye surgeries for Allie. A broken arm for Gianna. Another broken arm for Joe. The common cold, influenza, bronchitis, allergies, etc. Gianna’s gastroenterological tests. Allie’s various physicians. Helping Allie through her “Marfan milestones”: her first knee dislocation, her first chest pain, . . . And the thing she has that I don’t have, that worries her mother and me to death, her pectus excavatum. Every year, they test it and tell us it’s “fine” (meaning they don’t want to operate yet). Yet when you put your arms around the kid, you can feel how frail her little ribs are. She doesn’t like being hugged because it hurts. Sometimes, I lay my hand on her chest, and I feel that indentation so deep I can put my fist through it, and I wonder how there’s any room in her chest at all, and I just want to cry for her.

Then there was the time Mary called me in a panic. Allie had said, matter of factly, as she so often does these things, that she couldn’t see anything in her right eye. I came rushing home, fearing retinal detachment. I did some informal tests. I called her cardiologist and her ophthalmologist. I ruled out retinal detachment, but I got her an emergency visit to the ophthalmologist, and he said the zonules on her right lens were so loose that, while the lens wasn’t dislocated, it wasn’t focusing at all anymore, so it was completely obscuring her vision. It took three surgeries and two years to get that lens out of the way, and by then it was almost too late.

I have a problem where Allie’s care is concerned: I’m the first to want to get whatever the best things for her I can get. Technology has improved a lot in the last 20 years, and I want her to have the opportunities I didn’t for care that didn’t exist then. However, I also know what it’s like to be a “guinea pig,” and I know what it’s like to suffer side effects and complications that are sometimes worse than the problem. And I know what the stress of all this stuff is like, and how all the different things going inside the Marfan body come together to drive one crazy.

Being a Marfan is like being a patient on “House”. They give you a drug for your heart, and the drug, in conjunction with the Marfan, screws up your intestines and lungs. They give you a physical therapy method for your hips, and it makes your knees dislocate. They give you at therapy for your knees, and it makes your back hurt. They give you a therapy for your back, and it makes your hips hurt. . . .

I’m very cautious about giving her cures that may be worse than disease, or putting her through therapies that might give her undue stress, because, on the one hand, I know exactly what she’s going through. On the other, unlike her father, the kid never complains . She only complains when she’s about ready for the hospital, and if she’s not feeling well, the only way she ever shows it is by lashing out.

We used to have a regular thing. We get into the habit and then somehow get out of it. It’s called, “If a kid’s being exceptionally crabby, give ’em some Tylenol.” Allie has headaches all the time, because of her vision, and everything else, and she doesn’t stop to say, “Hey, Mom and Dad. I have a headache.” She just gets crabby and uncooperative. When we’re smart, and we think, “Maybe she has a headache,” we offer her a Tylenol, she accepts it, and after a little while, she’s sweet and cooperative again.

Over the three years we lived in Columbia, I got to know several of the ER nurses, between my own visits, and the fact that I was always the designated parent for taking the kids. And nurses shift duties and hospitals. So, one time we have a nurse in triage who’s the room nurse the next time. Or we’re at a different hospital, and a nurse says, “Don’t I know you from somewhere! Oh, yeah! You’re the Marfan dad!” Or a nurse will say, “How’s Gianna’s arm?” “How’s Allie?”

I bring all this up because Joe fell this evening. It was pretty scary. We had gotten home from running errands. I was getting the grocery bags together. Mary and the kids ran in the house because the kids had to go to the bathroom (they sit all day and go hours on end between potty breaks; as soon as we leave the house, though, they need to go every 10 minutes). For some reason, Joe and Clara decided to run outside and play “Scooby Doo” in the dark. From inside the car, I heard them come running out, saw them run towards the front yard, and was just about to yell at them to go back in the house or get over to the car when
I saw and heard Joe take a bad fall.
He was crying. “Are you all right?” “No!” I came running over, and he was already on his feet. He toddled himself into the house and laid down on the futon. While everyone crowded around him, I unloaded the groceries. Then I knelt down beside him, cleaned his wounds, put on band aids, stroked his head, and talked to him gently. At first, all he said was that his arm hurt all over–and it was the arm he broke last year.

It didn’t look broken, and after talking to him about it, I got him to explain that his hand and wrist hurt, and he had fallen on his hand. I put ice on it for a while, and Mary took him to the ER, and she said they were great, and they said it’s probably not even a sprain but just a bruise.

But there was something special in that time. As terrifying as it was, it was also a special bonding moment for me, to kneel there in the den and tend to my little guy, stroking his head and talking to him. English 101 textbooks like to include an essay that E. B. White wrote about taking his son to the cabin that he used to go to with his father, and how the time seemed to blend and invert.

Something like that happens when I’m tending to my kids in their infirmities, especially the most drastic ones. It’s like I channel my mother. As I comfort my own child, I find myself a child again, being comforted by my Mom.

On “Doing Fine,” “Being OK” and “Feeling Better.”

No, I’m not.

Never have.

Never will.

And “never will” doesn’t mean I don’t believe God may give me a miracle. He has given me many miracles, which is why I’m still alive today. However, I consider everything a miracle. I consider my aortic dissection itself a miracle.

Thank You, Father.

Forgive my ingratitude.

But as for “doing fine”? “Being OK”? “Feeling Better”?

Those are abstract concepts that have more to do with the questioner’s peace of mind than the respondant’s situation.

People want you to tell them you’re “fine” so *they* can stop worrying.

Problem is: the problems are here. Some of them have always been here.

I took a gamble. 14.5 years ago, I had a surgery that I didn’t really want to go through with. I had prayed for many years for God to miraculously intervene and prove His power before the doctors could do anything. I worried that, if I went through with the surgery, I might be denying God’s power to heal me. I just wanted to go to Heaven, though I also knew that I wasn’t spiritually ready yet, but I had to keep up appearances.

After the surgery, they told me I’d “be fine.” They told me I could stop living the way I’d always done and start exercising, and enjoying life a bit.

Actually, after the surgery, the surgeon told my parents that, now that the aorta had been grafted once, I could have a dissection at any time. I had already known this from my reading and paying attention at all those NMF conferences my parents took me to, and it was one of the reasons I didn’t want the surgery.

However, I bought the life of “You’re fine.” I got an apartment on campus for my senior year. I began walking for an hour a day. I really was enjoying it.

Then I developed some tearing around the stitches of my valve, and was back to sedentary.

Then those tears scarred over, and I sought out equilibrium. Still doctors, and my parents, encouraged me to walk, to try things, to not use the wheelchair, etc.

I met Mary.

We had kids.

In those early years of our marriage and parenthood, I was the healthiest I’ve ever been. I still had chest pain and stuff, but everything was remarkably stable, and I had more stamina than I had ever had previously or since.

I even made it to full time employment, and Mary got to be a stay at home mom for over a year.

I pushed myself too hard. Icarus flew too close to the sun.

At first, even before that full time job, I started having really bad headaches, with numbness in my face and legs. There are neurological problems associated with Marfan syndrome, so I went up to Hopkins to see a neurologist and a spine expert. They said my problems were not consistent with dural ectasia, and my tests did not show any evidence of it.

As time went on, and the headaches and spells became more acute, I realized they were TIAs–transitory ischemic attacks. I tried to get checked for those, and had a brain CT which showed nothing. I was told “It’s just stress. Get better sleep.” Eventually, I found out that TIAs which recur daily like I had them were more indicative of a brain aneurysm, but I also knew brain aneurysms were hard to detect. My cardiologist agreed and suggested we start medicating as if I had one.

Throughout this process, in 2006, I also developed a new aneurysm in my thoracic aorta.

When an angiogram in 2009 finally found the brain aneurysm, it also found a tortuous and redundant carotid artery and a “venous ectasia” (kind of like an aneurysm, only in a vein and not an artery). The more I researched these, I figured out my TIAs were actually caused when my BP was high, and blood was trying to force itself through the maze of my right carotid artery (like water through a hose with a kink in it).

And, after about 5 years of being relatively healthy, I had declined a bit more quickly than I’d ever anticipated.

Our prayer had always been for me to find full time work, so Mary could stay home with the kids and we could hire some kind of assistant, whether someone to assist with the housekeeping,the kids, our household management, or our medical concerns.

I worked and worked at various part time jobs to try and make ends meet. I overworked myself. I lost jobs either because of my health or working too many jobs at once or both.

We constantly struggled. We accumulated debt. We accumulated debt because I wasn’t strong enough, especially in a townhouse, to take care of the kids and the housekeeping and cooking and work all these jobs. So we ate out far too much. We accumulated debt because, while our income was sufficient to pay the monthly bills (including any eating out), life is more than monthly bills. Cars needed repaired. Medical bills needed paid. Relatives wanted us to visit. Job interviews would present themselves. Car taxes.

Then I would not get enough classes, or I’d lose a job, or whatever, and our income would drop. Each of the last 3 years, I’ve ended up without any classes in January, and the tax return money–intended to get ahead on our debts–ended up going towards living expenses.

But we kept trusting things would work out. I finally had an interview for a potential full time job. They loved me. They told me I’d start in October. We found a fantastic handicapped one story ranch to rent and moved so I’d be ready for the job. The job didn’t materialize. They froze the position.

So here we were, in a new home that solved a lot of our problems in itself, yet we had several others to deal with.

Financial security had been in our grasp, and we lost it. That was OK, we said, because my current jobs were bringing in enough money. Then I didn’t get assigned as many classes because of restructuring. So I applied for two more adjunct jobs and got them, just before Christmas, one of them on campus.

Then my aorta dissected.

So, how am I doing?
1) My aorta is stabilized, but that doesn’t mean I’m fine. It means I have to do everything I can to avoid stress and avoid raising my blood pressure so my aorta doesn’t dissect again. It means I’m going to be on heavy blood pressure medicines and pain killers. Now, instead of 8 diagnosed potential causes of sudden death, I now have 11.

2) I am giving up driving. That is going to considerably cripple my family, but we’ll get rid of our second car, which will reduce our monthly bills by over $500.

3) I am going to appreciate life a bit more and stop putting off important stuff. I’m going to stop hoping for something better and make do. I’m going to trust God to help us with the bills.

4) I’ve always needed help with the kids, but hopefully, if people don’t buy into “I’m OK,” they’ll be willing to give it. This drastic change in the situation has us considering Catholic school–if we can get some kind of charitable scholarship. Otherwise, I’m going to need volunteer help with the kids, at least a few hours a day. In the meantime, the grandparents are helping out.

5) After we find some ways to seriously cut corners, I’m going to try to keep teaching a minimum number of classes, and I’m going to start applying SSDI. In the meantime, I’m going to apply for South Carolina’s Working Disabled Medicaid program, since my dissection qualifies me for both programs.

6) Sometime in the next 3 years, I will need a replacement of my entire aorta. It may be in 6 months; it may be in 3 years; it may be next week.

7) I’m happy and content and at peace with God and my family. Other than my parental concerns about money and my children’s education and care, I have no worries.

Have a Heart: Actor Vincent Schiavelli

Vincent Schiavelli was not only one of our most noted “celebrity Marfans,” but in the Marfan community he’s known for his generosity in reaching out to other Marfans, particularly children, and giving them his time and attention.

May he rest in peace.

Have a Heart: NMF Statement to SSA, updated

Back in the mid-1990s, the Marfan community was excited that Marfan syndrome finally made it into the Social Security Administration’s official list of disabling conditions.

However, the listing was for untreated aortic dissection. In other words, your aorta dissects, and you’re eligible for Supplemental Security Income (SSI) or Social Security disability for the day or so before you die or have it operated on. OK, there are some people who have dissections that they have to live with for indefinite periods of time, for various reasons.

However, the point is that it’s a very limiting criteria. This is a written statement to the SSA, dated, November 28, 2007, by one Dr. Josephine Grima, representing the National Marfan Foundation, asking the SSA to take into account the systematic effects of Marfan.

The following two sentences sum up my life:

Each major “incident” translates into non-productive years, disrupted or discarded careers, lost wages and assets, and an emotional and psychological disconnect and alienation from society. Couple this with the specter of early death and the resulting angst and pervasive depression that ensues further
debilitates the patient.

I most firmly believe that the worth of a person has nothing to do with how much money he or she can make, or with utilitarian contributions to society. When it comes to my personal life and spiritual life, I am quite happy. “You’re rich in the economy of grace,” as a friend recently said to me.

However, when it comes to survival in this cutthroat world, it’s a different story. I’ve worked hard all my life to always come just short, always not having quite as many qualifications as other candidates for scholarships, awards and jobs, always getting high praise for my intelligence and work ethic but never quite able to advance beyond a basic level job when I do have work, and always getting the riot act when my disability invariably gets in the way of my work.

A year ago, I began working on the _Hide Me In Your Wounds_ CD in the hopes of taking my career into my own hands. Self-marketing has proven challenging as a I have to work so many hours as an adjunct college instructor to make ends meet, and I thought I could have success with the “guerilla”/”buzz” marketing approach through my blog and Facebook.

Please download Hide Me In Your Wounds today.  The more copies I can sell through direct marketing, the more money and time I can spend on advertising, publicity and working on getting some of my other works published.

Have a Heart: Paganini Could do amazing things with the violin because he was a Marfan

Have a Heart: Allie again

More pictures of a girl who, according to the experts, should have been sacrificed to IVF, a Petri Dish and dissection for ESCR purposes to “save her from suffering”:


Age 6, an old fashioned phone booth at the Museum with Gianna and Joe.


Also Age 6, with Gianna and Joe

Age 7, MOVES class recital (dance class for disabled kids at Columbia College–great program!)

Age 7, self-portrait


Age 3 (close to 4) , holding Josef

Pray with Allie on Hide Me In Your Wounds.