Category Archives: Disability

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.

To Hipster Dad and Trad Dad

A few days ago, Aleteia started the latest round of parents-at-mass wars by reprinting a CatholicMom.com column from last June, by one Thomas Tighe, a self-described “hipster dad,” who writes about one of those incidents I’ve blogged about before where people come up and say rude comments to parents trying their best to teach their kids how to behave at Mass.  Now, whether Mr. Tighe’s description of his attempts really qualifies as “his best” is a matter for debate but of prudential judgement.  I know, though, that when our kids were little, one of the major reasons we shunned the cry room as often as possible was to avoid the bad example of parents who brought snacks and non-relevant toys (we would always try to get the kids to bring religious books and sometimes religious toys).

Sometimes, a cry room is necessary.  Sometimes, a vestibule or a trip outside church is necessary.  Indeed, I got so used to taking my autistic son out of church that I realized at one point last year I preferred being outside, listening on the speaker.

I like the anecdote about Ven. Fulton Sheen, when a lady took a crying baby out of Mass during his homily: “Madame, you needn’t take the baby out on my account.  He isn’t bothering me.”
“No,” the lady replied, “but you’re  bothering the baby!”

Yes, parents of young or disabled children have no Mass obligation, but that is precisely why attending at all is an act of heroic virtue.

Nevertheless, I’m inclined to agree with Tighe, especially given the absolute vitriol that people were spewing in response to his column.  For example, Steve Skojec weighed in with the perspective of a “certain kind of traditionalist.”

Skojec takes the “absolute silence” perspective, including suggesting that it’s a sin to drop a book.  I’m sure he’d be deeply offended by the sound of my wheelchair or the number of times I drop things at Mass!

I wish I could get people like you to stop quoting Mark 10 as a justification for irresponsible parenting. I have always brought my children to Mass, letting the little children come unto Him…but I’ve also always reminded them that the Mass is a supreme act of worship of Our Lord on the Cross, not a friendly gathering where Jesus told the little guys cute parables. . . .

Yes, when the Apostles were complaining about children, they were mad that the children were being perfectly well behaved and wearing their blue blazers with brass buttons.  And when Jesus said you can’t get into Heaven unless you learn to be like children, He meant perfectly silent and well-dressed.

When people have offered actual help, or talked to our kids helpfully, I’ve welcomed it.  Once, when my kids got distracted by the Christmas Tree at the Christmas Eve vigil, the pastor gently said, “I realize you’re excited because it’s Christmas, but please wait till after Mass to look at the tree.” Another time, as my eldest daughter loudly proclaimed her responses at our parish, a lady behind us kept whispering in her ear.  I braced myself when the lady approached me after Mass.
“How old is she?” she asked.
“Five,” I said.
“You must have taken her to Mass since she was a baby.  I kept leaning over and telling her how impressed I was that she knew her responses.  I have a daughter who’s a nun now, and she knew her responses when she was 5, too.”
A few times, we went to Sunday evening Mass at my alma mater’s campus chapel.  We were flabbergasted when the young priest pointed to our kids as an example of how to behave at Mass!   “Those little children know how to behave at Mass better than you college students!” Then when the baby woke up and started crying, he said, “Now, see?  You’ve woken up the baby!”
I went to daily Mass there once with my son, when he was 2 or 3 but not yet diagnosed autistic.  Father asked if I wanted to lector.  I said, “What about him?”  “He’ll be fine!”   I shrugged my shoulders, got up to read, and my son started following.  I gestured to return to the seat, and he did.
My eldest daughter once got up and laid prostrate in front of the altar after a homily about kids at Mass.
She had grown up attending a monthly “Reform of the Reform” Latin Ordinary Form liturgy in Northern Virginia, and the occasional High Mass Extraordinary Form in Richmond.  When she was 2, she sang her Latin Mass parts well enough to impress a Juilliard-trained composer and choral director.
After we moved to SC, there was a monthly EF low Mass we would try to attend.  Once, when she was 5 or 6, confused by everyone being silent during the liturgy of the Eucharist, she began singing the “Salve Regina,” perfectly.  She was sitting a few rows behind me, with her godfather.  I turned to shush her, but almost everyone smiled and gestured as if to say, “she’s fine.”

A few years later, at another parish, I was sitting up front with the younger two, and an elderly couple behind us kept leaning over and whispering what I sensed were gentle admonitions to my son.  After Mass, they asked, “He’s autistic, right?”  I said, “Yes.  They both are.”  They said, “We have an autistic grandson.  We know how it is!”

But we’ve had enough nasty comments to know some people will never be satisfied.
One of the times I tried to bring my son to the low Mass, he whispered some questions but was relatively well-behaved.  Nevertheless, this older gentleman came up and yelled at me, saying, “I raised nine children, and I taught them to behave themselves at Mass!”  I really got the impression that he was as mad about my daughter’s devotion as about my son’s curiosity.  Two other ladies followed him and said, “Don’t listen to him, you’re doing great!”

I often tell the story of taking all four kids to a “Holy Hour” by myself. They’d been to Benediction many times, and knew some of Evening Prayer from my saying it at home.  I was holding the baby.  The then 6 and 4 year old were focusing on the prayers. My son was walking up and down the pews, but being quiet, as he’d done at the aforementioned college mass, which was a huge improvement for him.
They used illicit, barely recognizable, texts for Vespers and Benediction, politically correct, Charismatic and “interfaith friendly.”  At Benediction, they “voted” on which hymn to sing instead of “Tantum Ergo,” and sang “Amazing Grace.”
At the Magnificat, Divine Praises and other points, my kids said the correct translation with me.  Afterwards, the deacon who led it came up and told me how distracting my family was, and children shouldn’t be present at such a “solemn event.”

The last time we had a direct encounter, my wife was in the back with the younger two, who were both sleepy, as they often are, from their meds.  These two old ladies told my wife that our kids were distracting them by sleeping!

So, whether they’re actually being bad, or they’re actually participating, or they’re being quiet but sleeping, we’ve gotten both positive and negative feedback from strangers and clergy.

Yes, there are some people who are blessed with peaceful, well-behaved children, and like other people blessed with particular virtues, they shouldn’t lord it over others.  But there are also some whose kids’ perfect behavior can be a bit scary to the rest of us.

For the past several months, we’ve been regularly attending a Byzantine church that we have visited from time to time over the past 5 years, and I always found the kids seemed to be better behaved and attentive there.  In Advent, I suggested going to the OF Vigil Mass (it didn’t work out because we all got sick), and the kids said, “Do we have to?!”  They find the chanting both soothing and easy to participate in. They love having the icons to pray with. Like me, they find incense bothers them allergy-wise, but they also find it calming (even when they were smaller, they seemed to settle a bit at Vespers as soon as the Censer passed).  They like the community meal after Liturgy.  When there are a lot of children, the DRE gathers them and brings them up to sit in front of Father during the homily.

On Sunday, we were a bit late as usual.  It was Theophany, so there was an especially long liturgy.  I brought three because our middle daughter was sick, and my wife stayed home since I’m the one who usually does.

We stood/sat in the back.  In the second to last row, there was a visiting family–very obviously Latin Rite traditionalists.  The father and sons were all in suits.  The wife and daughters, all in dresses and veils (while veiling is traditional in the East, it’s not an “obligation,” and from my research veiling is usually avoided in the Melkite Church to avoid confusion with Muslims).   My two youngest ended up right behind them.  I was across the aisle.  My teenager was at the other end.  We’d been told to take empty holy water bottles when we came in.  So my son kept playing with his holy water bottle.  After a while, he came over and told me that he realized we had forgotten to get his morning pills before we left the house! I thanked him for holding it together so well, and took him out to the car to take his pills.  I was happy he was holding it together so well, but still trying to keep him in control.  He kept bugging his younger sister, and she kept shushing him.  The lady in the veil in front of her kept turning around and admonishing *her*.

Later in the afternoon, since I didn’t recognize the family, my wife asked our daughter if she recognized the lady.
“Which lady?”
“The lady who kept turning around and correcting you,” I said.
“Oh, *that* lady,” she sighed.  I should note that, of our four children, she’s the most resistant in matters of faith and has already developed the impression that God is a dictator Who just has a bunch of rules and wants to “get” people, in spite of our efforts to teach a balanced view of the faith.  If she grew up in one of these, “children should be seen and not heard” families, what would her faith be like?

On Melancholy: the Physiological aspects of depression and bi-polar

Last night, I posted a semi-defense of certain controversial comments made in the wake of Robin Williams’ suicide and a general suggestion of how Matt Walsh, Rush Limbaugh, Bryan Kemper and others might have done better.

Part of Matt Walsh’s appeal is that, like the early Limbaugh, he uses sensationalistic packaging to get people’s attention to pieces that are usually very thoughtful. In this case, which backfires horribly because his piece isn’t as thoughtful as he thinks, he emphasized the notion that “Robin Williams didn’t die of a disease; he died of a choice.” At one point, he says, “First, suicide does not claim anyone against their will.”

He anticipates this response a few paragraphs above, but that is precisely the problem. Mental health issues, addiction, etc., reduce or remove culpability. Now, the mentally ill person may remain culpable for what is done while sane, but the question–which none of us can answer in this life–is whether the person who commits suicide truly has control of his or her will.

People like causes. They like to have someone or something to blame, especially if it isn’t themselves. “He was depressed because his career was in the tank” is an easy target versus “He was depressed because he had a genetic condition that made it difficult to control his emotions.” That gets into a mess of problems about free will versus determinism. Then there’s the controversial, “He was post-abortive,” which I want to discuss in a separate post, but while guilt, financial troubles, or frightening medical diagnoses may contribute to mental health issues, we cannot deny that there are physiological components. Matt Walsh is right that there are spiritual components, but wrong to dismiss “chemical imbalances” as modernist mumbo jumbo. Physiological understandings of depressive disorders are nothing new at all.

It is precisely “He was depressed because of XYZ” that is “modernist mumbo jumbo,” originating with Freud’s era.  Back in the old days, instead of “chemical imbalances,” people talked about “humors.” Melancholy is usually associated with depression, though the “melancholic temperament” would be what we now call “bipolar” and possibly include even autism. The melancholic is concerned about the troubles of the world, prone to mood swings, etc. Literature’s most notorious melancholic is perhaps Prince Hamlet from Shakespeare’s eponymous play. Three major movies made of the play within a decade demonstrate different psychological interpretations of the character:

The Zeffirelli/Gibson film (1990) depicts Hamlet as bipolar, mostly manic or “rapid cycling.”  
The Branagh/Branagh (1996) version depicts Hamlet as almost sociopathic (choleric), with the melancholy a complete facade.
The Almereyda/Hawke (2000) version depicts Hamlet as straight-up clinically depressed.  

Either way, all effective writers are natural psychologists and write their characters so well that they can be readily diagnosed (always baffles me that people insist you can’t “diagnose” fictional characters because a particular health problem or mental health issue wasn’t named: people still had problems).  Shakespeare drew from the psychology of his day and also left the character open to interpretation because he was aware of the debates that existed even then.

One of the concerns Walsh, and many others raise in critiquing a biological interpretation of mental health, is the spiritual component.  Fr. John Corapi would compare it to any physical disease: you might have a genetic predisposition to something. Then you add in the component of an actual physical trauma, poor nutrition, etc. Then bacteria come into the wound and infect it.

With mental health, you may have a genetic predisposition to bi-polar, depression, schizophrenia, autism spectrum, etc. You experience traumas that other experience but they hurt you more because of your predispositions. Things that might cause a brief situational depression for anybody are devastating (or, conversely, one thrives in a crisis). Then the demons, like bacteria in a wound, come along and whisper “You’re unworthy.” They infect the emotional wound and refuse to leave.  That certainly needs to be dealt with, and most treatment programs acknowledge it.  

“Madame has moments of melancholy,” says Max in Billy Wilder’s Sunset Boulevard (1950).  Norma Desmond, also clearly bipolar (mania demonstrated by her literally insane, rambling “script” that she’s been working on for years), has made several attempts on her life, and Max has removed all the doorknobs in the house, as well as all knives and razors (“Madame got the razor from your room, and she cut her wrists!”)

If Robin Williams had shot himself, certain people would be calling for restricting the ability of mentally ill people to own guns. They cite statistics on gun deaths in America, more than half of which are suicides.  It is noteworthy that these same people objected to “politicization” of his death when some pro-lifers pointed to his status as a post-abortive father (post-abortion syndrome contributing to many suicides), or when Rush Limbaugh, ironically or inadvertently “politicized” his death by complaining about the media politicizing it.  Yet the same people would have readily “politicized” it if it had been a gun suicide.

That’s another easy cause, though, that  people look for.  They try to say, “It’s guns,” except when it’s not guns.  Nobody is talking about legal action to restrict ownership of ropes, or belts, or plastic bags, or knives or razors by mentally ill people.  The real issue there is why people must rely on the government for everything. 

A desperate person will find a means.

One last observation under this topic is the question of medication.  Some people will say, “See?  This proves meds don’t work!” or “This proves meds make things worse!”  One of the reasons it’s important to nail down the right diagnosis is that the wrong medicine really can be disastrous.  Someone with bipolar needs to be on bipolar meds, not necessarily anti-depressants or anti-anxiety meds, which can cause a horrible mania and, in turn, drastic behavior.  

Accurate diagnosis is so very important, as are accurate treatment methods.  

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

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

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

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

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Interesting quote from the _Compendium_

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

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

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:

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.”

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

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: 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: A Marfan Love Story

UPDATE: I had previously linked our story from the Ave Maria Singles website, but they have recently apparently taken down their “Success Stories” page.

Here’s where you can order the We Met Online Ave Maria singles book (we’re in it).

Here’s the issue of Canticle Magazine where Mary published our story.

Have a Heart: Flo Hyman

I met her sister.

Wikipedia bio

The Flo Hyman Award

Volleyball Hall of Fame

Have a Heart: Brent Collins–Actor, Marfan, and Dwarf

Brent Collins was an actor who had the strange genetic admixture of Marfan syndrome and dwarfism. A sudden growth spurt in mid adulthood led to his death in 1988. He starred on As The World Turns (1982-1983) and Another World (1984-1987), and was very prominent on the latter series. He had a few guest starring roles, most notably on an episode of _The Golden Girls_.

On _Another World_:

May he rest in peace.

“Have a Heart”: “Rachmaninoff Had Big Hands” (Because he was a Marfan?)

Christy Dermer: pro-life Marfan martyr

Christy Dermer, pregnant at age 28 and suffering from Marfan syndrome, chose to carry her child to term despite warnings that it might kill her. She died during childbirth in October 2007.

Her family live in Michigan, but were interviewed by the Toledo Free Press for an article on Toledo Hospital’s new Aortic Center.