Good. Calm. Nervous. Joyful and excited. Hopeful. A good day.
These were positive affirmations expressed by the survivors of traumatic brain injury on an unseasonably balmy Saturday last month at Sweetbriar Nature Center in Smithtown.
As a pair of tame deer fearlessly explored the grounds, members of The Social Brain, an organization that helps people who have experienced traumatic brain injury and their caregivers make social connections, gathered with occupational therapy assistant students from Suffolk County Community College to learn from one another, picnic and soak in the day.
"We were very active until this happened," said Vince Constanzo, of his wife’s traumatic brain injury, adding that they used to travel abroad a couple of times a year and take frequent weekend trips.
"It sucks," said Ursula Constanzo, 58, of Mount Sinai, who had an arteriovenous malformation that ruptured, causing her brain to bleed, then a stroke.
Since that day in May five years ago, Ursula, who was in a coma for a week, has had to learn to do everything again, from walking to talking to eating.
"It’s a very, very slow recovery," noted Vince, 60, who works at Brookhaven National Laboratory. "Excruciatingly slow when it comes to the brain."
"I thought I’d be jumping and dancing like I used to," said Ursula, who uses a wheelchair to get around.
Besides the staggering challenges of managing their daily life, Vince lamented how everything changed in an instant. "I anticipated physical deficits, but we lost many of our friends," he said, adding, "Now we have new friends through this and other organizations. It completely turned our life around."
The lack of friends is also a challenge for Brandon Bowen and Susan Burns, his mom and caregiver.
Bowen, 27, of Selden, fell headfirst — without a helmet — seven years ago while zooming down one of the steep hills on Adirondack Drive in Selden on his skateboard. He had to relearn how to speak and cannot use his arms or legs.
"I was a hot mess," Bowen said.
Burns, 54, said she helps her son with the activities of daily living, including feeding and bathing.
"I’m the picture of health otherwise," Bowen said. Humor, he explained, helps buoy his spirits. "Better to have a good outlook and laugh than to dwell on the past and the cards that I was dealt," Bowen added. "If I don’t laugh, I cry."
Traumatic brain injury, TBI for short, can be isolating for both the patient and the caregiver, Burns noted.
TBI is considered a major cause of death and disability in the United States, according to the Centers for Disease Control and Prevention. Those who survive TBI can face effects lasting from a few days to the rest of their lives, from cognitive to motor, sensation and emotional impairment. In 2014, about 2.87 million TBI emergency department visits, hospitalizations and deaths occurred in the United States, including more than 837,000 among children.
"Anytime anyone sustains a head injury — that’s a TBI. And it ranges from very mild, like a concussion, to very severe coma and death," explained Dr. Jonathan Brisman, an attending neurosurgeon and senior partner of Neurological Surgery P.C., which has eight offices on Long Island. "TBI is an extremely broad category."
Only a small fraction of traumatic brain injuries get operated on, Brisman noted. "Some of the more common ones are people who are on blood thinners who either are in a high-speed motor vehicle accident or they just fall."
Individuals who sustain a TBI frequently experience a sense of isolation and an emotional void that can’t be filled by programs that treat overall functioning, said Lisa Liberatore, director of Greenlawn-based North Shore TBI Services.
"The Social Brain succeeds in offering events and activities that are sensitive to individual needs," she said. "They take into account and try to overcome barriers that often impede participation, such as mobility issues, transportation difficulties and need for personal assistants to be in attendance."
"In the beginning, everyone’s around — family and friends — then slowly, almost everybody disappears. I think they can’t handle it," Burns said, adding that her son has a handful of friends who’ve stayed with him. "But, he was the center of his friend group," she mused.
It was the isolation faced by TBI survivors he worked with that inspired Ira Dunne to start The Social Brain in early 2019. Dunne has worked as a recreational specialist for the past 10 years, helping TBI patients relearn an array of skills, from cognitive to social to motor.
"Everyone’s life returns and now this person with a brain injury is sitting home by themselves or with the immediate family," said Dunne, 42, of Selden.
Over the years, Dunne started taking his patients out for coffee or to the park — and he took note of how they benefited from those outings.
In October 2018, he and family and future board members came up with an organization name, The Social Brain, and mission, to organize activities for TBI survivors and their caregivers and family, from bowling, to a day at the aquarium, picnics, barbecues and an end-of-year dance.
The Social Brain runs on monetary and medical supply donations, has 11 board members, including Dunne, Burns and Bowen, and depends largely on help from volunteers.
People living with traumatic brain injury "need socialization and friendships" to improve their recovery and lives, Dunne said. Those living with traumatic brain injury may have physical, speech and occupational therapy five or six times a week, he explained, "but if they have nowhere to use it, out in the community and to socialize with people, it’s just skills that they’re going to learn in that hour and go home."
For Kristy Homan, who moved back to her mother’s Eastport home to help care for Marie Homan, 77, who has had a stroke, the day at the nature center was also a welcome respite.
"It’s been a tough couple years, but it’s great to be with groups like this," said Homan, 42. ‘If you don’t live it, you don’t get it."
As a parent, Nora Facey has often felt frustrated for her daughter, Kassandra, 26, who has felt ostracized because of her special needs caused by the TBI.
"These kids are trying to find out where they fit in the world," said Facey, 57, of Holbrook.
Through SILO (Suffolk Independent Living Organization), Facey learned about The Social Brain. That’s where Kassandra, who was born with hydrocephalus, started having seizures at 16 and has had 10 surgeries since birth, began to meet new friends.
Facey said that through The Social Brain, "They got a chance to meet each other, they got a chance to talk. They got a chance to exchange numbers and then they had a connection."
When the COVID-19 pandemic was raging on this past spring, Dunne and his organization soon recognized another need for those in the TBI community: medical and hygiene supplies, from diapers and wipes to feeding tubes and more.
"There was a shortage to the medical industry itself because almost all of the supplies were heading to hospitals and the home care families were forgotten about," Dunne said, adding that insurance companies often don’t reimburse for supplies like adult diapers, which could cost a family $300 to $400 each month.
Through Facebook, Social Brain got the word out about which supplies were needed, and donations came pouring in, mostly from people who no longer needed them. These days, Dunne opens the organization’s medical closet, which operates much like a food pantry, every Tuesday evening at its Port Jefferson Station headquarters.
A single mom, Jody Sommer, 44, of Lake Grove, makes good use of Social Brain’s medical closet. Sommer lives with and takes care of her dad, Walter, 76, who has Parkinson’s disease and may have had an undetected stroke. He can’t walk, feed or dress himself.
Before the pandemic, Sommer was able to get supplies not covered by Medicare through Brookhaven Town’s Henrietta Acampora Recreation Center in Blue Point. Her father, she noted, goes through about one $22 package of adult diapers every three days. She visits the medical closet every other week to replenish her supply of diapers, wipes and protective pads.
In return, Sommer has donated items to the closet that include a wheelchair, hospital bed, air mattress and bed rails that her father no longer needed.
"This closet is a help to so many," Sommer said. "It’s helping hands: Everybody just helps everybody."
Caring for the caregivers
Those living with traumatic brain injury generally require full-time care, whether provided by paid help or family. In some cases, family members may quit full-time jobs to care for their loved ones.
In Burns’ case, Medicaid reimburses her family 60 hours a week for paid help, of which Burns is compensated for 40 and her daughter for the remaining 20 hours. "Each family has their own situation, based on the TBI survivor’s needs as well," Dunne said. "Those caretakers will do whatever they can do to make sure that their loved ones are taken care of, whether it’s the daily care or it’s the advocating for them.
"And, also being there just for the everyday things of good laughter," she said.
Last November, Social Brain hosted a brunch at Panera Bread in Port Jefferson Station just for caregivers to celebrate National Family Caregivers Month, and let them know they’re appreciated and not alone.
There, Nora Facey met Joanne Hayes, another nurse who also cares for a daughter in her 20s. They talked for a long time, became friends and have gotten together regularly.
"Not only is she a nurse also, but she’s telling me how she felt and the professional decisions that she had to make about her life and her job," Facey said.
"People try, and they’re very understanding, but don’t truly understand because unless you live with it, it’s hard to know the pressure, sometimes the isolation," said Hayes, 57, of Farmingdale, whose daughter Tara, 20, was injured four years ago when she was hit by a car.
"To have somebody that truly understands the position is very nice, because I have great family and friends, but people just don’t understand the whole impact of everything," added Hayes. "And, it’s good for the girls, too … To have another person that’s similar to you, really does make all the difference in the world."
Learning from one another
Through physical activities, occupational therapy effects behavioral changes, improves cognitive abilities and is key to a patient’s recovery, noted Heidi MacAlpine, a fieldwork educator and adjunct professor Suffolk County Community College who was at Social Brain’s Sweetbriar event to mentor her occupational therapy assistant students. Occupational therapy assists TBI survivors in relearning skills, including interpersonal ones, to help them reintegrate into the community.
"Occupational therapy students help people do the things they want and need to do despite any challenge they may have," said MacAlpine, 58, of Manorville.
One student, Amber Brewer, 25, of Riverhead, who works as a patient transporter at Peconic Bay Medical Center, simply loves the work.
"I get to build a connection with them because they stay [at the hospital] for weeks at a time and I get to see how they progress over time," Brewer explained. "Some people come in not being able to walk and they leave walking. It’s nice to be able to help them get to a functional way of life."
Another OTA student, Kerri Maier, 32, of Long Beach, was inspired by her brother who has special needs. She said she would often sit in on his OT sessions. "I love helping people," Maier said. "I love being there for people who are forgotten."
Over the years, Maier has watched Conner, now 24, learn to cook, write and draw — things he loves to do — through the occupational therapy he’s done.
"Being here today, I chose the right thing," Maier said. "It’s where I’m meant to be and it’s what I’m good at."
The Social Brain is a not-for-profit, 501(c)(3) organization that helps people with traumatic brain injuries connect with others. To learn more, volunteer or donate, visit thesocialbrain.org. Social Brain’s medical closet is open from 4:30 to 6:30 p.m. Tuesdays at 5225 Nesconset Hwy., Building 3, Unit 12, Port Jefferson Station. November is National Family Caregivers Month. For more information, visit the National Alliance for Caregiving, caregiving.org.