State of Mind
Keeping a damaged brain alive may be the greatest act of friendship.
From the November 12, 2008 Philadelphia Weekly.
Daniel Curcio strolls around the bright room decorated in domestic bliss - spice racks on the wall, stainless steel pots and pans dangling from the ceiling, and hanging over the kitchen sink, a simple white ceramic plate that reads, "HOME IS WHERE THE LOVE IS."
He holds the phone to his ear, glances in my direction, and states, "I'll send Yeremiah down to pick up the pizza."
I look at Yeremiah Hardt. He sits at the kitchen table with a smirk on his face.
"Alone?" I ask.
"Yeah," Hardt answers. "It's independence training."
And despite the picture-perfect setting and the facade of normalcy, I slowly begin to understand the difficulties that cloud this unusual relationship: a five-minute trip to the corner pizza shop could be a perilous adventure.
***
When he was 5 years old, Hardt, now 31, tumbled into his family's frozen pool and became trapped under the ice for more than 20 minutes.
Doctors declared him dead. He spent five months in a coma.
When he finally awoke, he could barely talk and his brain failed to function properly.
"My parents refused to believe that I had a disability," Hardt says in his stilted voice, each consonant sounding as if his tongue clings to the top of his mouth for an extra split second.
They forced him to attend public schools, where he struggled, alone, in near silence. He graduated from high school at the age of 21 after years of suffering the abuses of his teenaged peers.
Until he met Curcio, Hardt was practically non-verbal for 20 years.
***
During Equality Forum in 2003, Curcio, a 38-year-old South Philly native and former Marine, scanned the crowd at Kahn Park, at 11th and Pine, and spotted Hardt.
"I thought it was going to be something romantic," Curcio tells me.
He realized that Hardt had a disability of some sort. But because Hardt is so quiet and affable Curcio didn't realize the extent of the damage. The two began dating.
Within a few weeks, Hardt moved into Curcio's apartment near Ninth and Clinton. The intimacy of the small apartment quickly cast a light on the severity of Hardt's neurological damage. His brain had been steadily deteriorating since his near-death experience.
Curcio ended the romantic relationship.
"I thought it was important that he have a friend more than anything else," he says.
They continued to live together. And Curcio's primary focus became tending to his new best friend.
***
Curcio was unemployed, having recently filed a discrimination lawsuit against his former employer, a Collingswood, N.J., high school.
Hardt burned through a string of jobs that never lasted long: stock boy at a hardware store, McDonald's table cleaner, rug shop assistant, grocery store bagger. He would uncontrollably snap and start yelling, then get fired. One time, while bagging groceries, he hit a woman over the head with a bag.
Curcio and Hardt were broke.
"We were five months behind in rent," Curcio remembers.
Caring for Hardt is a full-time job. He forgets things, becomes disoriented, explodes into outbursts and about once a week has seizures that can last up to five minutes.
They finally registered Hardt for Medicare and received financial assistance. Curcio found work. A personal care attendant (PCA) was hired to ensure Hardt's safety while Curcio was at the office.
Things were fine until the attendant called out sick, then quit altogether. Four attendants quit over two years. With each disappearing attendant, Curcio would miss time from his job counseling HIV patients.
"We couldn't find quality help," Curcio recalls. "The money's low, like $9 per hour. There are no benefits."
The unreliable care meant that after Curcio came home from his job, he'd still have to arrange Hardt's medical appointments, establish his diet and develop exercises to keep Hardt's brain functioning.
It was like working two jobs.
***
In 2007 Curcio quit his counseling job, earned his certification and became Hardt's PCA.
"My job is to keep his brain alive," Curcio says proudly.
Anytime Hardt is awake, Curcio is on the job. They work on hand-eye coordination, reading comprehension, memory retention and physical fitness, among other activities.
Curcio starts at 6 a.m. and ends at 10 p.m. He earns $10 per hour, for an eight-hour day, and there's no overtime. He works seven days a week.
"I don't have a salary that's anything equal to what I'm doing as a job," Curcio says.
"He's a one-man army," Hardt interjects.
Curcio receives no benefits. He pays $300 per month for his own health coverage.
***
Last summer, Curcio and Hardt were members of the 26-person steering committee of the Pennsylvania Campaign for a Consumer Workforce Council. The campaign is pushing for a state mandate that would provide seniors and people with disabilities the ability to direct their own care in their own homes. It would also push for better wages and benefits for PCAs.
"If PCAs got benefits and a decent salary, they'd actually want to work," Curcio argues.
The steering committee delivered a proposal to the State Secretary of Labor and Industry in September. The response has not been positive.
***
Their constant connection has strained their relationship at times. Neither dates much, as it takes a certain personality to not be threatened by the intense bond between the two.
Their working relationship, however, is likely to end soon.
Curcio is exhausted.
"I cannot afford the stress of this anymore," he says. "I need help."
He won't leave Hardt in the hands of someone who isn't committed.
"I have to make sure he's always safe," Curcio tells me. "That's why the Consumer Workforce Council is so important."