by bam

patrick and mary jo

it all came rushing back to me this week. how, over the years and years, i’ve stumbled on the deepest meanings of this glory called life when i’ve had a notebook in my hands, a reporter’s notebook, and when that notebook served as front-line ticket to the most extraordinary unfoldings of human character. of life at its most unimaginable, and the human capacity to thread the needle, not merely survive but triumph. not merely endure but discover laughter. wipe away tears, hold trembling hands, feel my own soul up and catapulted. i’ve walked away a million times asking, “could i do that? could i be so brave? so profoundly capable of discovering the beautiful beneath the devastating?”

all week i’ve been immersed in reporting a story about a 20-year-old kid with locked-in syndrome. what that means, he says, is that it feels like — for the past three years, ever since an aneurysm in his brainstem ruptured during surgery — he’s “locked inside a freezer.”

what it means is that this kid, named patrick, the captain of his high school’s swimming and water polo teams, woke up in the early morning hours of 10-10-10 with a killer headache after his senior-year homecoming dance. and, somehow, he got dressed and made it to his mother’s bedside where he told her it was a 9 out of 10 on the pain scale, and they needed to get to the ER.

what it means is that that headache turned out to be a bulge in the artery that flowed blood into his brain; he’d had an earlier aneurysm — that’s what the bulge was — when he was 10. he’d had surgery back then, and except for a ban on “collision sports,” he’d gone on as ever. a red-haired eddie haskell of a kid, one who’d charm the pants off all the grownups in the room, but soon as no one was looking, launch one of the antics for which he remains legendary (the six moving violations he managed to accumulate on his first solo driving expedition; the time he locked his junior high teacher out of the classroom; the night he snuck out of the house at 3 a.m. to work out at the gym, ignoring the fact that his mother had forbidden it since he had a final exam that morning in a class he was just barely passing).

what it means is that 15 hours into the 22-hour brain surgery to repair the aneurysm, just after the surgeons had stepped away from the operating table to study an image on a screen, to try to figure out how to untangle this tangled mess, the darn thing blew, meaning it bled for 45 minutes into his brain stem — the control tower of the brain — and his lower brain.

what it means is that when patrick woke up from that life-or-death surgery, he was, as his father puts it, “in between,” a place no one had ever considered. it means he was wholly paralyzed except for the blink of his eyes, and the capacity to move his eyeballs up or down.

and within the week of his waking up, everyone realized he had full cognitive powers — even though he couldn’t utter a sound, or even swallow. he could still make you laugh, he still wielded his full armament of four-letter expletives, and eventually, he would be able to write 1,000-word college papers, some of them funny enough to take to the stand-up comedy stage (which his beloved nurse, mary jo, has done).

patrick is “locked-in,” a rare syndrome most poignantly and poetically described in the book, “the diving bell and the butterfly,” (also a movie of the same title) by jean-dominique bauby, who before he suffered a massive stroke in 1995 had been editor-in-chief of french elle, and who composed his memoir one blink at a time, the very same way patrick now communicates. using a color-coded “spell board,” in which the lines of the alphabet are arranged in five different-colored blocks, each beginning with a vowel, letters are recited until patrick shifts his left eye up, meaning “that’s the letter i want,” and the letter is recorded, a string of blinked spellings that make even a four-letter word an exercise in slow-mo determination.

anyway, that’s what i’ve been immersed in this week, and the thought that washes over me — as i consider that i have a boy the exact same age, who on 10-9-06 suffered a broken neck that by the grace of God did not leave him locked-in — is how blessed every tiny blessing is: the gift of getting out of bed, or brushing our teeth, and tiptoeing down the stairs into a waking-up kitchen. the gift of making a sound. the gift of taking a bite out of a sandwich.

i’m on deadline this morning writing the story of patrick and a filmmaker putting voice to his story, and someone i love just walked in to say she needed to talk, so i am suddenly utterly distracted, and my heart is pounding through my chest: i think i am about to remember all over again, what a blessing it is to be wholly alive….sometimes i have no notebook in hand when what matters most hits me.


that’s patrick way up above, under the blanket, with his beloved and glorious nurse, mary jo, and the filmmaker. colleen, and yet another caregiver. and just above is the spell board, patrick’s sole link to utterance of any sort. here’s how it works: someone recites the colors, “red, blue, yellow, green, gold,” and when you get to the color of the line that holds the letter, patrick looks up; then you begin reciting the litany of alphabet letters in that particular line. again, when you hit the letter patrick wants you to add to the spelling-in-progress, he looks up. over and over it goes till the word, the sentence, the paragraph is spelled out

consider your blessings. every little one. that’s the profound simple message this week