A bond that doesn't paralyse

Patrick Stein, left, a 20-year-old former water polo player at Loyola Academy now immobilized by Locked In Syndrome, has his arms stretched by his nurse, Ira Guenther in his Northfield, Illinois home, August 13, 2013. (Carolyn Van Houten/Chicago Tribune/MCT)

A young man with locked-in syndrome copes with the help of a wisecracking, no-nonsense nurse.

THERE wouldn’t seem to be anything funny about Patrick Stein’s situation.

The 20-year-old from Northfield, Illinois, former captain of the Loyola Academy swim and water polo 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 humour, however, are intact. Which gives him one thing in common with Mary Jo Harte.

Harte became Patrick’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 wise-cracking buddies, joking in person and by texts, his dictated using the spell board.

Harte talks to Patrick in his home in Northfield, Illinois. The paralysed 20-year-old and the no-nonsense nurse have developed a close bond.

The gay woman often plays the straight man. Like the time Harte was repeating some advice about rehabilitation that Patrick 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 Patrick looking up every time she got to the one he wanted.

F. U.

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 Patrick’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 Patrick in a performance at a Glenview comedy club last year before a crowd that included Patrick 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 cell phone 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 Patrick is fiercely positive and brooks no pity, there is no avoiding the reality of his situation.

With his mother Colleen reading out letters from the board, he spelled it out.

IT SUX.

“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 paralysed 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 was no longer considered technology-dependent enough to be eligible for the Medicaid waiver programme 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 was no 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.

Patrick’s plight prompted Governor 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 Patrick’s nursing even after he turns 21 in December. A class action suit settled last month established that the state can no longer reduce funding to medically-fragile children when they turn 21 and age out of the children’s waiver programme. Payments are to be based on medical necessity, not age.

The family withdrew its lawsuit.

Patrick’s relationship with Harte is special. When they’re together, “he laughs harder than you can imagine,” said Colleen, a real estate broker.

“They laugh together; they cry together; they tease each other,” said Patrick’s doctor, 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, Dr Sheridan said Patrick’s condition has improved a little. “He is able to do some gestures; he can partially smile.”

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,” Dr Sheridan said. “That’s why he, his family, everyone that supports him, and especially Patrick himself, wants to do anything and everything they can. He’s not one to give up.”

“There are people who come out of this,” said Colleen. “We still have hope.”

And Patrick and Harte have their friendship, and their schtick. – Chicago Tribune/McClatchy-Tribune Information Services