By Barbara Mahany, Nurs ’79
Colleen Shaw uses her camera to do what no doctors or medical miracles have been able to do. ... Let Patrick Stein tell us about living with locked-in syndrome.
Holed up in the editing nook of her New York apartment, fueled on endless glugs of stain-your-lips-red Powerade Zero and countless chunklets of Orbit gum, Colleen Shaw, Comm ’11, unspools frame after frame of the locked-in life of a 20-year-old kid who for the past three years hasn’t uttered a word, is just learning to swallow and likens his existence to “spending a long time in a freezer” “minus the cold,” he is quick to add.
But the worst part, he says, is that “no one listens” to what he can’t say aloud anymore. Shaw, a filmmaker, is giving the kid his voice again, making him the narrator of his own story.
If all goes according to script, the world will hear Patrick Stein, a redhead Eddie Haskell of a kid now strapped in a wheelchair, spell out words with the blinks of his eyes loudly, clearly and unmistakably in All in My Head: The Patrick Stein Story, Shaw’s 30-minute documentary of his triumph over tragedy.
Life suddenly changes
Patrick was once the high-energy, hijinks-happy captain of his high school swim and water polo teams. That changed on 10-10-10, a date indelibly etched into the telling of his story. In the wee hours of that October Sunday, soon after returning home from his senior year homecoming dance, Patrick woke with a killer headache. He made it to his mother’s bedside and told her they needed to get to the hospital.
There, doctors pinpointed an aneurysm, a bulge that threatened to burst in the artery flowing through his brainstem. Fifteen hours into a 22-hour surgery, just after the surgeons stepped away from the operating table to study an image on a screen and figure out how to untangle the tangled mess, the aneurysm ruptured. It bled for 45 minutes.
When Patrick woke from that life-or-death surgery, he was, as his father, Nick Stein, puts it, “in between,” a place no one had ever considered.
Patrick was and still is paralyzed except for the ability to blink and shift his eyes up or down. (After three years of intensive physical therapy, he can wiggle a few fingers on his right hand and, with determined concentration, can lift his right forearm a few inches off the armrest of his wheelchair.)
It was within the week of his waking that everyone realized Patrick had full cognitive powers though he couldn’t utter a sound, swallow or nod his head. In time, everyone realized he could still make them laugh. Soon, he could blink a full armament of four-letter expletives. Eventually, he would be able to dictate 1,000-word college papers. Some of them were funny enough to take to the stand-up comedy stage, which his beloved nurse, Mary Jo Harte, did to standing ovations.
Living locked in
It’s called locked-in syndrome, and Patrick is its second-youngest known victim. The condition was most poignantly and poetically described in the book and movie The Diving Bell and the Butterfly by Jean-Dominique Bauby. Before Bauby suffered a massive stroke in 1995 that left him “locked in,” he was editor-in-chief of French Elle magazine. Bauby composed his memoir one blink at a time, which is how Patrick now communicates.
Patrick uses a color-coded SpellBoard on which the alphabet is arranged in five colored rows, each row beginning with a vowel. Letters are recited until Patrick shifts his left eye up to indicate “that’s the letter I want.” The letter is recorded. Assembling a string of blinked letters makes spelling even a four-letter word an exercise in slow-motion determination.
Shaw was halfway through a yearlong filmmaking boot camp at the New York Film Academy when she focused her lens on Patrick. Casting him as the narrator of the documentary was a profession of Shaw’s faith and a measure of her capacity to zoom in on her lead character’s essence.
She was not willing to surrender to the greatest production challenge. “I want it to be his voice,” she stresses. “People are always talking about him. I was determined to get his voice into the film.”
She did it with a filmmaker’s tool kit that is a curious mix of the cinematic and the futuristic. A GoPro camera, the tool skateboarders, ski bums and skydivers don to show off their daredevil stunts, is strapped to Patrick’s head. A DynaVox provides the speech-making wizardry that follows Patrick’s gaze across a word-generating computer screen to put sound to his silence. The heart of the documentary script flows from journal entries Patrick blinked to his trusted nurse during the past two years.
“I’m a big fan of the inspirational and motivational story,” Shaw admits.
She heard about Patrick’s aneurysm from her brother, Charlie, who was a water polo teammate and member of the tight inner circle of “Steiner” friends.
Shaw’s broad-shouldered brother was among the kids frantically texting updates in those early awful hours that melted into a blur of days and weeks and months before Patrick was strong enough to leave the hospital and return to his suburban Chicago home, nearly a year after waking with the horrible headache.
It was in spring 2012 that Shaw went to her and Patrick’s high school, Loyola Academy in Wilmette, a North Shore suburb of Chicago, to watch a Senior Night water polo match. There, she spotted the former team captain strapped in his wheelchair, parked on the swimming pool deck.
Shaw, who played water polo in high school and college, couldn’t shake her gaze. She locked in on one unanswerable question: What would it be like to be trapped after being so physically capable?
The moment she saw him at the side of that pool where both of them swam so many miles, “it opened my eyes to how incredible this kid is,” Shaw says. “We both spent hundreds if not thousands of hours in that pool, swimming and training and working hard and goofing off and getting in trouble and growing up, basically. To be young, to have felt on top of the world, going on recruiting trips as a college-bound athlete, and to have that taken away in a blink of the eye, literally. ...”
Her voice trails off. It’s utterly unfathomable. You hear the unspoken truth in her silence.
Taking on Patrick’s story
Shaw studied exercise science and advertising at Marquette before heading to film school. She had to plumb the depths of this drama and frame it with her lens. She’s a triathlete who has lugged around a video camera since she was in fifth grade, making music videos alone or with her gaggle of girlfriends.
“Once I got my camera,” Shaw says, “I couldn’t put it down. I really liked capturing moments that wouldn’t be captured otherwise.”
Shaw discovered another thing along the way. “The camera is almost a shield for me,” she says. “It’s almost like I’m not there. It’s a layer of protection when what’s in front of you is so extreme.”
And, so, she was ready to take on Patrick’s story.
She raised $15,858 in 30 days through a Kickstarter online crowd-funding campaign to cover film-production costs. She is now raising more funds to continue filming an extended version of the story. She dreams of airing the film on ESPN and HBO to klieg light Patrick’s story and inspire a worldwide audience.
“I was prepared to be sad, but that changed the minute I walked through the door,” Shaw says of her first visit to the Stein family home. Soon, she and Patrick were bantering back and forth like brother and sister, which is hardly surprising after capturing so many up-close and breath-taking moments with her camera.
“The Stein family is rock solid,” she says.
At the Stein house, Shaw says, you can count on a laugh every few seconds. She has the film to prove it. She, camerman Sami Salmenkivi, and a sound and production assistant all students from the film academy taped more than 75 hours of cinema veritι with Patrick, rolling the camera from sunup to well past sundown for a week last summer. She returned to Patrick’s home in the fall to fill a few narrative holes, adding 20 hours to the film log. Then, she flew to New York, to her East Village apartment and a production lab in Battery Park, to dive into editing mode cutting and splicing 30 extraordinary minutes of live footage.
The frames tell the story: Patrick relearning to swallow, practicing with droplets of water. Patrick taking his first bite of food in three years, an Armenian diner sandwich he craved called “the Loretta,” with bacon, cheese and mayo slathered on a half loaf of grilled French bread. Patrick breathily uttering “Hi,” a single triumphant syllable. Patrick going to school. Patrick being slid into a swimming pool. Patrick visiting with friends who come and go to college. Patrick wisecracking. Patrick telling the unedited truth of how it feels to exist locked inside a floppy-limbed body that once powered through life.
It’s that voice, most of all, that is the hallelujah thread of All in My Head: The Patrick Stein Story, the film that dares to put words back in Patrick’s soundtrack. Loud and clear spelled out or spoken the film is pure Patrick. Just the way he and his filmmaker dreamed it could be.
Be among the first people to see Shaw’s documentary at allinmyhead.com.
Colleen Shaw talks about meeting Patrick Stein, and then see Patrick with love and assistance from family and friends tackle the challenge of living with locked-in syndrome. See that and more at marquette.edu/magazine/locked-in.
Understanding an aneurysm
“An aneurysm is the result of weakening of the wall of an arterial blood vessel,” explains Dr. William Cullinan, dean of the College of Health Sciences.
Cullinan teaches residents in the Medical College of Wisconsin neurosurgery program and covers stroke syndromes, including the type that cause locked-in syndrome. “The weakened state of the vessel results in ballooning of the vessel wall,” he says. “While many times the process goes no further, some aneurysms rupture or burst. If the blood vessel containing the ruptured aneurysm is one that supplies brain tissue, the resultant bleeding deprives that brain region of oxygen and nutrients required for tissue survival. This is a type of hemorrhagic stroke that can cause massive damage (or very little) depending upon location, vessel size and extent.”
Cullinan says the critical issue is location. “The stroke that causes locked-in syndrome occurs at a critical place in the brainstem called the ventral pons in such a way that it destroys all descending motor axons, including those that stimulate the cranial nerves that allow speech, as well as the sixth cranial nerve, which allows an individual to move eyes laterally. Victims communicate solely by moving their eyes in the vertical plane.”
Aneurysms can be treated if detected. Treatment, Cullinan says, can involve clipping or coiling, two very different procedures that try to prevent aneurysm rupture.
The Patrick Stein Foundation is being established now to help others tell their stories of triumph over personal tragedy.