Daily Archives: September 28, 2013

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

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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.”