Lori Blanco wanted her hair pulled back, off her face and neck.
Her husband, John Blanco, rose from his seat at a downtown hotel restaurant, stood behind Lori and gently combed her hair, smoothing out the tangles, making Lori feel cooler. He asked if she wanted a “high ponytail or a low ponytail?”
She chose high. And she got one, too.
“I have learned the fine art of ponytailing,” said John, a plate of virtually untouched scrambled eggs in front of him on the table. “I had a crash-course in grooming the past four months.”
That’s when the symptoms began, before Lori, 56, was diagnosed in July with ALS, a neurological disorder that stops cells from signaling muscles for voluntary movement.
It’s fatal and there’s no cure, which is why John and Lori were at the hotel in the first place. John attended high school in Contoocook. They had moved to Florida in 2013, but now, with Lori desperate for treatment to slow this monster down, they’re selling their home down there and moving back here.
They’ll seek the emotional boost offered by a support group of family and friends who are staging a fundraiser on Oct. 19 from 7 to 10 p.m. at American Legion Post 81 in Contoocook.
The $10 fee will help defray the cost of food, travel and lodging expenses while they travel to Massachusetts General Hospital in the coming months to determine if Lori is a candidate for a clinical trial.
I met them the day after the first of four appointments during this screening process. Lori is not yet in a wheelchair and she can breathe on her own, two factors that might help her meet the strict standards necessary to qualify, as the medical community tries to incorporate stem-cell transplants to fight back, lead to a longer, less restrictive life.
Sometimes it’s hard to understand Lori, as the disease weakens muscles used for talking. She says she’s “uncomfortable, and it takes me two hours to fall asleep. I’m hoping I get cured.”
Meanwhile, her illness has left John with his own battle. The one about staying strong for his wife of 23 years, transforming into her caregiver and interpreter, making sure that every possible treatment that might add to her quality of life is explored to the fullest.
But when John sees Lori put on her brave face, struggling to be understood because of her slurred speech, knowing she might soon need a wheelchair to replace her walker, he tries to keep his emotions in check.
“ALS is called the long goodbye,” John told me. “That’s a good way to describe it. I’m pretty strong. During the day I’m okay, but at night, when my wife is in bed and I have nothing to do, the thoughts come into my head and I start looking down the road about what could happen. I put up a good front for her.”
Sometimes, though, this tough guy with broad shoulders, whose father was an ironworker, whose family members included police detectives and firefighters, who grew up in Southie, Boston’s bad-boy neighborhood, before moving to Contoocook in 1977, can’t help himself.
During the hour-long meeting, John warned Lori, “Don’t make me weepy.” But as the interview progressed and we dug deeper into her emotions and the disease, John became weepy, before quickly regrouping and moving back into interview mode.
He wanted me to know the courage Lori has shown since this nightmare began.
“She’s the most positive person in the world,” he told me. “Every day a smile, the first thing in the morning. She is the superhero of my life.”
Their life included lots of happiness, a seemingly endless honeymoon. They moved to Florida six years ago to be closer to Lori’s aging parents. Before they left their jobs to deal with Lori’s illness, he was a mental health worker and a patients rights investigator. She was a psychiatric nurse specialist.
They bought a camper in Plymouth, excited to return here during the summer months, be closer to John’s parents and all those people he knew as a teen.
One was Sue Strickford, a former town clerk and tax collector who lived across the street from John. He called her his second mother. She called him “her boy.”
Strickford said the wife of Gene Connolly, the Concord High principal who died from ALS last year, was a teacher in her town. She said she read about the Connollys’ four-year struggle, documented closely by the Monitor.
And that gave her a sense of what Lori and John were enduring.
“Their insurance has run out,” Strickford said by phone, “and they have thousands of dollars of bills.”
People like Strickford and Lisa Marzoli, who’s close friends with Lori, helped organize next month’s fundraiser. They’re a shining example of why Lori and John feel it’s time to move back to the Granite State. They need the community spirit attached to the Hopkinton area.
They also need to be near Mass General for that screening process that, they hope, will end with her admission into this clinical trial by the end of the year.
Their hope is to slow the disease’s progression. Maybe a cure is on the horizon. ALS is so cruel in its effects that last summer at the Mayo Clinic in Minnesota, during the long process to nail down the proper diagnoses, John and Lori – mindful what the pain in her hand, arm and jaw, the flu-like symptoms and the loss of balance could mean – actually hoped she was suffering from an autoimmune disease.
Even multiple sclerosis, they said, would have been a relief.
“(The doctor) said he was sorry to tell us that he believed she had ALS,” John said. “We didn’t break down. We got through it.”
At that moment, Lori bowed her head and began sobbing, her high-pitched wailing signifying immeasurable sorrow.
She wiped her eyes with a napkin.
“Now I have to do your hair again,” John said, smiling.
Lori’s tears mixed with laughter as John moved behind her and gently combed her hair.
“A high ponytail,” she said.