'It's beyond a nurse/patient relationship. It's a friendship.'
August 17, 2013|By Barbara Brotman, Chicago Tribune reporter
There wouldn't seem to be anything funny about Patrick Stein's situation.
The 20-year-old from Northfield, former captain of the Loyola Academy swim and waterpolo teams, suffered a brain aneurysm in 2010 that ruptured during surgery to repair it. The bleeding caused a massive stroke at his brain stem, and left him with locked-in syndrome — a near-total paralysis.
He needs full-time nursing care, and had to fight to keep state payments to cover it.
He can't speak or swallow. All he can move are his eyeballs and eyelids, and to a small extent one finger and one side of his face. He communicates by spelling out words with his eyes, moving them up to confirm letters read out loud from a specially designed alphabet board.
His mental faculties and his sardonic sense of humor, however, are intact. Which gives him one thing in common with Mary Jo Harte.
Harte became Stein's nurse three years ago. They make an unlikely pair.
He is a college-age North Shore jock, albeit a sidelined one; she is a middle-aged nurse, a gay woman with a brash manner who struggles with her weight.
But they both like a good laugh. And they have become wisecracking buddies, joking in person and by texts, his dictated using the spell board.
The gay woman often plays straight man. Like the time Harte was repeating some advice about rehabilitation that Stein had been refusing to take. She thought she was finally making headway. To her delight, he started blinking, indicating that he wanted to talk.
She took out the spell board and starting reading out letters, with Stein looking up every time she got to the one he wanted.
By the time he got to "C," she got the picture. She laughed, even though "like an idiot, I'm writing it all down."
And all the times she has accidentally bumped her chest into Stein's face?
That has become one of their running jokes and comedic material for Harte, who performed stand-up comedy when she lived in California. She used her adventures caring for Stein in a performance at a Glenview comedy club last year before a crowd that included Stein and his friends and family.
She told of one of his joking emails asking her to send him a photo of her cleavage, and ended her act by taking out a cellphone and pointing it at her chest.
"There you go, precious," she told him as the audience cheered.
But even with a really funny nurse, and though Stein is fiercely positive and brooks no pity, there is no avoiding the reality of his situation.
With his mother, Colleen Stein, reading out letters from the board, he spelled it out.
"That's not how you spell 'sucks,'" his mother objected.
Ignoring her, he continued.
BUT I PUT UP WITH IT.
He is the same person inside his head, he said, but being paralyzed is like being trapped inside a freezer.
Last December, the Steins were told that because Patrick's tracheotomy tube had been removed in October, he no longer was considered technology-dependent enough to be eligible for the Medicaid waiver program that covers in-home nursing care for medically fragile children regardless of their parents' income.
The Steins filed suit challenging the decision, arguing that although the tube had been removed, Patrick still had the tracheotomy — the hole into his trachea — and so should still be eligible.
Harte, who segued from nurse to friend and advocate in September because she no was longer able to manage the physical demands of his care, started an online petition drive at change.org that garnered more than 105,000 signatures.
Stein's plight prompted Gov. Pat Quinn, who learned about it from a TV news report, to reverse the decision in July.
"Clearly it was a unique situation, and the governor directed his staff immediately to get to work reviewing the facts of the case and seeing what could be done to help him," said Quinn spokeswoman Brooke Anderson.
The reversal ensured that the state will continue to pay for Stein's nursing even after he turns 21 in December. A class-action suit settled last month established that the state no longer can reduce funding to medically fragile children when they turn 21 and age out of the children's waiver program. Payments are to be based on medical necessity, not age.
The family withdrew its lawsuit.
On Aug. 25, Harte will participate — she thinks "compete" is overstating the case for a 262-pound woman who hates exercise — in the Life Time Tri Chicago triathlon as a fundraiser for Stein, as she did last year. She will do the sprint, which covers half the distances of theinternational event. Last year, she came in next to last.
She pokes fun at herself in her blog, and Stein has joined in.
But he was the one who inspired her to do it. She was complaining to him about being unable to lose weight, and he was having none of it.
There are so many things you can do, he spelled.
Compared to him, she asked?
He looked up, meaning, "Yes."
She signed up for the triathlon.
"If you didn't laugh, you'd cry," said Nick Stein, a builder.
"Almost everyone laughs when they're around Pat, or he gets them to," said Patrick Stein's friend Charlie Dowdle, 19, who grew up on the same block.
"They laugh together; they cry together; they tease each other," said Patrick Stein'sdoctor, Dr. Philip Sheridan, a pulmonary and critical care specialist with NorthShore University HealthSystem. "It's beyond a nurse/patient relationship. It's a friendship, a bond of trust and honesty that's developed between the two of them."
Through two years of intensive therapy and great effort, Sheridan said, Stein's condition has improved a little. "He is able to do some gestures; he can partially smile," the doctor said.
Still, "the prognosis for total neurologic recovery is not good. And the further you go out with any neurological injury and not make a recovery, the more difficult it becomes.
"I don't have a crystal ball," Sheridan said. "That's why he, his family, everyone thatsupports him, and especially Patrick himself, want to do anything and everything they can. ... He's not one to give up."
"There are people who come out of this," Colleen Stein said. "We still have hope."
And Stein and Harte have their friendship, and their shtick.
Stein plans to be at the triathlon finish line and is sure Harte will cross it. But that hasn't stopped him from continuing to rib her about her athletic ability.
When she texted him recently that she was heading over to his house on her bike, he responded that he would be watching for the ambulance.