Henri Alphonse Laurent-Desrousseaux, “The Sick Child”
Jason Blake, a friend who teaches at the University of Ljubljana and who has written several guest posts for this blog, just went through the traumatic experience of watching his daughter undergo major brain surgery. I invited Jason to contribute a post to Better Living through Beowulf and he sent the following. In addition to hearing Jason describe his experience, I am struck by how his knowledge of literature helped him anticipate certain developments and also how it shaped his responses. Conscious that he was performing different literary roles as he cared for his daughter, he looked to a passage from Don DeLillo’s Underworld to understand what was happening. He discovered that (in DeLillo’s words) “it’s not that you’re pretending to be something else. You’re pretending to be exactly who you are. That’s the curious thing.”
By Jason Blake, Dept. of English, University of Ljubljana
“The plot thickens. You may be referring to yet another form of EEG monitoring, with electrodes placed directly on the brain itself. We do this a fair amount where I work. Basically, an electrode array is placed, the skull flap replaced and the patient wakes up with an electrode assembly exiting his or her skull. (Sounds worse than it is.)” (D. John Doyle, MD, PhD; private e-mail message)
About a week after we received the diagnosis in early July, I consoled my wife. I said, “This will make us better people.” That was a dumb thing to say and even if my prediction turns out to be true, it remains a smug pat-phrase. I don’t want to divulge too many medical details, but if something similar happens to your child, do not say what I said.
Now, with the wisdom of several months of seizures and seizure diaries, CT scans, EEGs, MRIs, drug regimens and side effects (side effects which may include, but are not limited to decimated concentration, the occasional inability to produce normal sentences, sudden weight gain, then sudden weight loss – “One pill makes you larger / And one pill makes you smaller…”), a trip to Tübingen for an operation, and a much happier return trip to Slovenia, I have no idea whether I’m a better person. I think I’m a changed person, but, again, it’s too soon to say. Give me a few decades.
In the above two paragraphs I have written “I” eight times. That is arrogant and self-centered and truthful. I know that this thickening plot is primarily about an eight-year-old girl and her ear-to-ear scar that a properly-aligned half-inch hairband can now cover, not about her father, and I know that most people in the world with a similar problem could only dream of the medical treatment she received in Slovenia and in Germany, but the temptation to focus on me is there and I might as well admit it.
For the first week of teaching in Winter Semester, 2013, I would rise at five, take the 6:35 train from my daughter’s hometown of Celje to Ljubljana, get to her hospital room in time for breakfast, spend a few hours with her, head off to teach my literature classes, sprint back to the hospital, and generally feel good and useful, maybe even a little proud of my performance as the Good and Helpful Father. It felt like I was actually doing something. And if that’s not egotism, I don’t know what is.
I felt those feelings of usefulness back in October, back in the blurry realm of pre-operation cluelessness, half a dozen or so MRIs ago. Post-op, post-Tübingen, my daughter’s seizures appear to be a thing of the past. She no longer has to gulp down quite as many pills, she is steadily regaining the use of her left hand (it’s a brain thing; too complicated to explain here) and, perhaps, perhaps, in a few months she will be able to walk the two hundred yards to school by herself. Just like when she was seven. She will, I hope, regress into her normal, old life.
And my prediction about becoming a better person? No idea. My fear is that I will not improve and that, with the passing of time, I will slip back into my self-satisfied life of teaching, reading and translating, when I should be spending the rest of my days saying “THANK YOU! THANK YOU!” to the German-based Brazilian surgeon and his team of other MDs, to humanity and to the Cosmos, donating every extra euro-cent to charity, giving students fifth and sixth and seventh chances, never, ever yelling at my daughter, and never looking at another human being with lust, loathing or even lack of enthusiasm.
Robin’s blog is about books and books have been a great comfort to me these past few months. I’ve read more than ever, mostly non-fiction and poetry. Hospitals, like airports, give you plenty of time for reading, but it tends to come in ten-minute snatches, which is not great for reading novels. (As it happens, my Kindle Paperwhite was delivered just as I was heading to the Celje hospital to check on my daughter. Roy MacGregor’s warmly insightful Canadians: A Portrait of a Country and Its People was my first e-book, and though someday I may forget its contents, I will never forget the midnight reading of it in a darkened children’s ward. A risqué Kindle ad could show parents reading by Paperwhite-light as their children sleep in their side-railed, adjustable hospital beds.)
Two books that inspired and comforted me were Mark Edmundson’s Why Teach?: In Defense of a Real Education and Why Read? There I felt a kinship I’ve rarely felt with non-fiction; it was as if a more fluent, insightful, committed version of me was doing much of the writing. Edmundson is a firm believer in literature as a provider of “live options” or “vital options,” and the litmus test for a work, he feels, should be its “application to life,” not merely to “sharpen our analytical faculties” or for myth-debunking.
Here’s Edmundson on a possible benefit of reading Shakespearean tragedy:
[P]erhaps in the foreknowledge of [Hamlet-like] sorrows there is some consolation; at least one will not be taken entirely by surprise.
Though these have been months of surprise, I was not “taken entirely by surprise” by (most of) the big things because the arts had given me an inkling of how to behave. We’ve all seen movies and plays and read scenes in books suggesting what we can or should do when the diagnosis lands. There’s a battery of specific routines we can pilfer. We can do doubt or denial, shock, horror, stiff-upper-lipness, put-it-in-perspectiveness, at-least-it-isn’t-X-ness, or—a favorite among patients and patients’ parents, I’ve learned—bitch about the doctors’ own performance. “Did you hear how he delivered the news?”
To be clear: performing is not the same as faking it. It’s not a matter of either-or but of audience. The outraged lover can ham it up in that role and still be the outraged lover; the suffering mother is and plays the suffering mother.
Perhaps these lines from Don DeLillo’s Underworld capture the sense of this doubling:
I noticed how people played at being executives while actually holding executive positions. Did I do this myself? You maintain a shifting distance between yourself and your job. There’s a self-conscious space, a sense of formal play that is a sort of arrested panic, and maybe you show it in a forced gesture or a ritual clearing of the throat. Something out of childhood whistles through this space, a sense of games and half-made selves, but it’s not that you’re pretending to be something else. You’re pretending to be exactly who you are. That’s the curious thing.
Back to Edmundson’s Why Read? and what he says about feeling out of place, ignorant:
The best beginning reader is often the one with the wherewithal to admit that, living in the midst of what appears to be a confident, energetic culture, he among all the rest is lost. This is a particularly difficult thing to do. For our culture at large prizes knowingness. On television, in movies, in politics, at school, in the press, the student encounters authoritative figures, speaking in self-assured, worldly tones. Their knowingness is intimidating. They seem to be in full command of themselves. They appear to have answered all the questions that matter in life and now to be left musing on the finer points.
I was a beginning reader of my own life in that I was learning things about myself. Some events of summer-fall 2013 had no ready literary pre-text, no routine to filch.
For example, how do you react when your daughter says, proudly, “I took all four of the pills in one gulp!”? Or, when she, hearing a disturbing buzz from the DVD player, says, “That’s it! That’s the sound I heard when I was inside that thing… the MRI.” How long should I pause over the German-language forms indicating that I am aware of and agree to the risks involved with Intubation and Narkose before signing? (German was my other major at university. How’s that for use-value in the liberal arts?)
Toughest of all, how was I supposed to act when, arriving at the residence for parents and other hospital hangers-on—walking on air because my daughter’s operation appeared to have been a smashing success—I saw two bags of groceries on the counter in the communal kitchen, marked “für alle” because at least one other child hadn’t had such a fine day at the Uni-Klinik and had been advised by the doctor to enjoy the next week or so in more familial, comfortable surroundings back in their home country.
If—and this is the biggest if of my life—things turn out well for my daughter, we’ll have gotten off easy. Half a year of horror because of a genetic fluke is minor and brief compared to other tales I heard, sights I saw.
It’s soothing these days to see everything as a learning experience, as a forum for personal growth. I’ll do my best: When you’re outside of the intensive care unit waiting to be let in, all else falls into irrelevance and frivolity, and your life is leant a rare focus. The pain of choosing between equal options is gone, there’s a concentrated sting instead of a dull existential ache. You know, for once you know, what you really want.