Sticking to a schedule is important for Bart Goldstein.
His alarm is set each day for 8:15 a.m. He gets up, gets dressed, eats breakfast and takes his medicine.
Two days a week, Goldstein walks to his part-time job at Swifty’s Restaurant and Pub in Delmar. There, he works for five hours each day helping unload the restaurant’s delivery order and stocking it away. Other days he helps with the recycling or light cleaning. After his shift, Goldstein walks home and takes a nap.
On days he doesn’t have work, Goldstein will go out and spend time with a friend. Sometimes they go out to eat at the Four Corners Luncheonette, while other times they go see a movie at Spectrum or do some shopping at Crossgates Mall.
About once a month, Goldstein goes to therapy at the Stram Center for Integrative Medicine in Delmar, and once a week he visits the Structured Day Program at Millview in Latham. He has a cleaning lady that comes occasionally, and on Sundays, his family drives up to spend the day with him.
All of these appointments Goldstein writes down in a large black day planner. He has to in order to remember the structure of his day.
Although many might not suspect it when they first meet Goldstein, he is one of an estimated 5.3 million living with traumatic brain injury. One of the main symptoms of TBI is short-term memory loss.
“I remember loads of stuff from before the accident,” said Goldstein. “I remember being little and going to the airport to pick up my little sister when she was adopted. Current stuff is more difficult.”
The 29-year-old said the best way he can describe the lapse in memory is almost like a CD skipping.
“It jumps around a lot,” he said. “Sometimes I can’t take my memory for its true worth.”
Goldstein remembers nothing about the car accident that left him with traumatic brain injury. When asked, he doesn’t remember the car ride, where exactly they were going or how it happened. He also doesn’t remember the majority of his time in the hospital or his recovery process.
One of the first things he does remember is being in the hospital and his parents bringing him some of his favorite music to listen to, like Led Zeppelin and Pink Floyd. By that time, Goldstein estimates, he’d been in the hospital more than a month.
“It definitely helped me, having that music,” Goldstein said. “I didn’t have much else.”
One who does remember many of the details is Joel Goldstein, Bart’s father.
It was the night of Saturday, Dec. 29, 2001, and most of the family was returning to their home in New Paltz from a late-season Christmas party. Joel Goldstein and his wife, Dayle Groudine, were having a conversation up front, while 11-year-old Cassidy slept on the ride back. Not with them was Bart, who was at a sleepover with friends.
“His friends were supposed to be sleeping over at our house, but when we got home, they weren’t there,” said Joel Goldstein. “What was there was a message from the New Paltz police saying we should immediately call them. I thought maybe the boys had done something stupid and they were in trouble. I was not thinking anything about an accident.”
Bart Goldstein and his friends had decided to go for a joyride around town before heading to the Goldsteins’ house. At 16, some of the boys had only recently received their licenses, and as the car took a severe turn in the Village of New Paltz, they struck a tree.
“They were just clowning around in the car, like teens do,” said Joel Goldstein.
Bart’s parents had trouble finding out what exactly happened to Bart, who had been transported by air to Westchester Medical Center and sent in immediately for brain surgery. They then rushed to the hospital downstate.
“We were told a John Doe was in surgery,” said Joel Goldstein. “When he got out, we couldn’t even recognize him he was so swollen and misshapen. But Bart had been born with hammertoes. It was my wife who thought to lift the sheet and look at his feet.”
Joel Goldstein and his wife were told they might lose Bart within the next 72 hours. They then waited a month for him to come out of a coma. During that time he went through multiple surgeries and scans. As Bart slowly started to show signs of consciousness, a trachea was inserted, and he was transported to Helen Hayes Hospital near Nyack for rehabilitation. There he would face more surgery and three months of therapy and rehab.
Joel Goldstein said Bart began speaking about two or three months into the process. He also began relearning how to walk soon after and was in the hospital for a total of five months. He was then sent home for nine months and went to the hospital during the day to receive speech, occupational, physical and cognitive therapy.
“He was like a zombie, like the walking dead,” said Joel Goldstein. “You couldn’t have a conversation with him.”
The doctors advised against sending Bart back to school, but Joel and his wife were adamant. He’d taken advanced classes before and played three sports. He was also something of the class clown, and Bart’s parents felt school was important.
Bart started going back to school slowly. He had an aide and took classes for two hours each day. But his condition caused him to grow tired easily. Bart was falling asleep every 20 or 30 minutes.
Faced with the choice of Bart passing very limited academic benchmarks or leaving and going into an institutionalized setting, the family shifted focus. They realized the conventional medical approach was only going so far for Bart, and they needed to investigate alternative therapies.
Joel and his wife began doing research on their own. They felt that Bart’s doctors did everything they could, but it wasn’t enough. That’s when a friend told them about hyperbaric oxygen therapy and how it was being used to help with traumatic brain injury.
The process is believed to help by greatly improving the brain’s oxygen supply. The patient is placed in an airtight vessel and administered 100 percent oxygen. A doctor from Helen Hayes called the Goldstein family to discourage it and told them they were being taken advantage of and the procedure most likely would not work. After hearing both sides, they decided to try it anyway.
“It’s been used for about 200 years with divers for treating the bends,” said Joel Goldstein. “After four sessions, he didn’t need the map to get around school. He did 120 sessions over 2.5 years. Rapidly he began to be able to walk better. He was still getting regular therapy, but he began to be able to speak sensibly. Before, he could not figure out simple sayings; he would just stare at you.”
Joel and Dayle then began to look into other alternative therapies for Bart. Some of them didn’t work, and it took a lot of time and money. The ones that worked best were the hyperbaric oxygen therapy, known as HBOT, craniosacral therapy, which uses light touching to elicit body response, BOYLES sensory learning therapy and vision restoration therapy.
“We didn’t want our son’s recovery defined by not being covered by insurance or a standard of practice,” said Joel Goldstein.
Bart also takes an extremely high dose of omega 3 fish oil, which Joel believes has greatly improved his memory.
“I call my dad the vitamin guru,” joked Bart.
Brain injury awareness
Joel Goldstein said once the accident happened, he knew he would spend the rest of his life advocating for Bart.
March is Brain Injury Awareness Month. The father and son now work with the Brain Injury Association of New York to share their story and help others who may be facing similar circumstances. Joel Goldstein also wrote a book about the family’s experiences called “No Stone Unturned.”
“I think a lot of people are coming back from the wars in Iraq and Afghanistan with brain injuries, and it’s hard for them to cope,” said Bart. “I think a lot of people might not understand what’s it’s like, and it could be a big problem for our country.”
Judith Avner, executive director of the Brain Injury Association of New York, agreed. She said, in general, people don’t really know or understand what a brain injury is or what living with one is like.
These days, here are more discussions taking place and information out there because of the research done on sports concussions and the significant numbers of men and women wounded in the wars who are now coming home.
Avner said she doesn’t know if that awareness has translated to understanding.
Someone might look like everyone else on the surface, but it might be hard for the person on the outside to understand what someone with TBI is going through. Many suffer from forgetfulness, behavioral issues or have trouble completing tasks.
“We in society tend to label those behaviors as negative, and call the person ‘non-compliant’ or ‘resistant.’ Sometimes that turns into those with TBI being labeled as people we do not want to be with,” said Avner. “Being lethargic can be labeled as lazy. All of that makes it very difficult for individuals to live independently.”
And living an independent life is not only what Bart Goldstein wants, it’s what his parents want for their son.
“In terms of Bart, the goal has always been, and will always be, independence,” said Joel Goldstein. “We hope he continues to recover, and with that live a normal, happy life. That would be the goal.”
Avner said building relationships can be difficult for those with TBI. Isolation is often a problem from both ends. Survivors can sometimes feel different and isolate themselves, while, more often, those suffering from TBI lose former friends and have trouble making new ones.
Bart Goldstein said he hasn’t stayed in touch with many of his old friends because they have gone on with their lives while he needed to take extra time to recover. Most also still live in New Paltz or have moved away, and he now lives in Delmar.
“For a few months after, my friends were pretty cool, but nowadays I don’t even talk to them,” he said. “They have their own prerogatives in life, and you know what, if I’m going to slow them down, then screw them. I don’t need to talk to them anymore.”
Avner said adjusting to life with TBI can be more difficult for adolescents.
“The last thing people want to do is be different from their peer group, and friends just want their old friend back,” Avner said. “Many (with TBI) can’t drive, and in this state, if you don’t have a car, it’s very difficult just to get the basics or entertainment. Public transportation is not convenient, and dealing with all that can also harm how easy it is fitting into the fabric of society.”
Bart Goldstein said he believes location is key for someone with TBI. He likes living in Delmar because it’s a walkable town, and he has a full support system around him.
For some time, Bart was living in Rotterdam at a residence connected with a local agency that specializes in working with adults who have TBI. But the 20-something felt the living situation was very close to feeling like an institution. He also felt constrained by his surroundings and his inability to get around town.
“There was nothing to do there,” said Goldstein. “I needed to be somewhere different.”
He has now been living in Delmar nearly four years and is much happier. Goldstein said one of his greatest joys is his job at Swifty’s. It’s not only his place of work, but also his favorite place to hang out.
Dave Swift, the owner of Swifty’s, said it was Joel Goldstein who first approached him about hiring Bart.
“He thought it would be good for him,” said Swift. “He was a customer already so we gave him some hours.”
Swift said he loves having Goldstein at the bar. He has a light and positive disposition, and he knows how to cheer up the other employees when they’re having a bad day. He also thinks the job has been good for Goldstein.
“I think it’s a great social outlet for him and everyone here knows him,” said Swift. “It‘s great for his confidence and makes him feel good. He has a lot of friends at Swifty’s.”
On days off, Goldstein heads out once or twice a week with his friend Bryan Roman, who is also an employee of the assisted living residence and agency where Goldstein used to live. The two go to a movie, lunch or shopping.
Roman said he thinks Goldstein is thriving in Delmar. The residents have been friendly to him, and he has a much better social life.
“I think the community means everything to him,” said Roman. “It’s the difference between living a normal life and being a miserable person. If he was removed from the situation, it would be terrible.”
Goldstein said he is now working on taking up new hobbies. About six months ago, he began taking guitar lessons at Blue Sky Music Studios with instructor Mitch Elrod. His goal is to learn to play some of his favorite rock songs, but the process takes longer than it would for the average person.
“I’m terrible right now,” he said.
Elrod said Goldstein is doing well for someone with a brain injury.
“Teaching has taught me that one of the most interesting parts of this endeavor is seeing how other people learn, and I love that aspect of it,” said Elrod. “I think people a lot of times see the music or hear it, and thinks it’s hard. My job is to convince them it is hard, but that’s just because they haven’t learned yet.”
Elrod said it might sound cliché, but playing music or creating any form of art can be therapeutic.
“Bart has such a great love of music. I think that will carry him forward as he continues to learn,” he said. “He’s such a happy guy, with a great sense of humor. He’s really a joy to work with.”
Joel Goldstein said he would eventually like to see his son settle down and get married one day. Goldstein’s parents continue to work with him about being more self-sufficient, but they believe his life will be better if he can find someone to share it with.
“I think he’s probably best off being with another survivor,” said Joel Goldstein. “He wouldn’t have to explain a lot, and his partner would understand the things he is going though. We want a full life for him.”
Advocacy and moving on
Bart Goldstein said he owes a lot to his family.
He doesn’t know what he would have done without their care and support. Goldstein also credits his Christian faith and having a good sense of humor as the main reasons he kept going.
“If you really want something, you have to go get it and practice, practice, practice,” said Bart.
The accident was hard not just on him, but his entire family. Joel Goldstein said his wife has a sort of post-traumatic stress that she suffers when she rides in the car. His sister, Cassidy, threw herself into school and work.
“That’s something that’s very hard for an 11-year-old to deal with,” said Joel Goldstein. “Our daughter lost the brother that she knew. We’re lucky he survived, but the person we knew didn’t survive.”
Joel Goldstein said he suffers from insomnia.
“I don’t think I had a good night’s sleep since (Bart) was hurt,” he said.
If the accident had never happened, Goldstein said the entire family dynamic would be different. Bart would have graduated from college long ago, and he would probably have a full-time job instead of subsisting on state benefits and what he gets from his parents. Joel Goldstein said he would have retired before now.
“Caring for someone with TBI isn’t cheap,” he said. “Not that I’m complaining, it’s just on top of all of the other heartbreak … we’ve all had to give up things we love. You just have to see what is fundamentally important and focus on that. You have to focus on your injured child. It becomes the new core of the family.”
Both Bart and Joel Goldstein have been working with Brain Injury Association of New York as advocates of the disability. Bart said he likes talking about his experiences and hopes it can helps others. Joel has other goals.
“I would like to live long enough to see TBI, which is emerging from the shadows, be made as well known as autism,” Joel Goldstein said. “I think it can be done.”