After her young husband suffered a massive hemorrhagic stroke, Chavie Glustein was thrust into an unfamiliar world of emergency medicine and impossible decisions. Today, she leads BINA, an organization that has become a critical guide for families facing brain injury and rehabilitation.
Chavie Glustein was a typical young kollel wife, the mother of an adorable six-month-old baby boy who lived in Yerushalayim with her 27-year-old husband. Then, from one moment to the next, the sky fell down.
It came out of nowhere when her young husband suffered a massive, sudden hemorrhagic stroke. Chavie was thrust into the dizzying universe of ICUs, terrifying medical jargon and a future clouded by unknowns.
Today, Chavie is the executive director of BINA, the organization she founded that is dedicated to helping families navigate the complex world of brain injuries and rehabilitation.
But back in 1997 there was no BINA, no roadmap and no one to call. To understand how a young woman transformed her personal nightmare into a global lifeline for thousands of families, we have to go back to the terrifying week when the ground gave way under her feet.
In The Blink of an Eye
“There were no signs. My husband was a perfectly healthy person,” Chavie begins her story. “You imagine that strokes only happen to people who had warning signs or didn’t necessarily live the healthiest lifestyle. But that’s not the case. Strokes do happen to young people.”
The incredible hashgachah pratis of the Glusteins’ story started with a twist: her husband was already hospitalized at Hadassah Ein Kerem for complications from a virus. Doctors suspected internal bleeding in his liver or kidneys and were being extremely proactive.
But a week after he was admitted to the hospital, Chavie walked into the room and found her husband lying in bed with his eyes closed.
“When he opened his eyes, he said they were really burning. ‘Chavie, can you please call a doctor?’ he asked. I didn’t think it was anything too serious. I assumed it was related to the medication, nothing alarming. But then came the worst headache of his life, which I now know can be a sign of a stroke. He was also terribly nauseated.”
The nurses tried to get him into a sitting position, but he couldn’t hold his head up. “I kept looking at him and thinking, Why aren’t you sitting straight? Why are you so slumped over? At that point he was too ill to communicate what was going on, so we didn’t realize that he was already paralyzed on one side,” Chavie recalls.
Within minutes, doctors came pouring into the room. Hadassah is a teaching hospital, and this was a compelling case. Chavie’s husband was sent off for an MRI that confirmed that he had suffered a massive hemorrhagic stroke.
“It wasn’t something you expect at such a young age when he had only been admitted for something that didn’t seem that complicated,” she says.
I’m wondering how she took the news, but Chavie says that she was so young and naive that she didn’t really grasp the gravity of the situation. When her husband slipped into a coma, she simply thought he was in a deep sleep. “Nobody had uttered the word ‘coma’ to me,” she explains. And because the risk of him dying in the operating room was so high, the surgeons refused to touch him for hours.
Chavie had grown up in Yerushalayim, so her parents and siblings were able to rush to her side. Her in-laws in Flatbush booked the first flight out, but because this was in the pre-cell phone era, they boarded the plane without knowing many details.
The critical turning point came thanks to a relative, Rebbetzin Finkel, a”h, a legendary medical advocate in Eretz Yisrael. She used her formidable influence to convince a surgeon to take on the case.
As they wheeled him to the OR, Chavie heard a staff member ask if the patient was sedated. The nurse replied, “No, he’s in a coma.” It was the first time she’d heard the word. “We said goodbye,” Chavie says. “We really didn’t think he was going to come out of it alive.”
It’s hard to imagine what Chavie was going through. She continues with her story:
“After a surprisingly short time, the medical team came out and they were elated. They told me that he had survived the surgery, but they had seen extensive bleeding throughout the brain, not just in one location. They didn’t know what his quality of life would look like or even if he would wake up. There were a lot of unknowns.”
Chavie was suddenly thrown into an entirely new world.
Taking the First Steps
A few days after surgery the doctors brought Chavie’s husband out of sedation to test his responsiveness. Within 15 minutes, a stunned doctor walked out of the room and told Chavie, “You’re not going to believe it. He opened his eyes and called me by my name.”
But he was hardly out of the woods. He had to be sedated again to allow his brain to rest so it could heal. In the weeks that followed, Chavie’s husband battled a severe infection and woke up significantly disabled: paralyzed on one side and unable to speak clearly.
At the time, Chavie was enveloped in a protective fog of naivete. The weight of reality didn’t register until one day she was told there was a call for her at the payphone.
“It was a friend of mine,” she told me. ‘I’m so sorry to hear that your husband had a stroke.’ ‘No, he didn’t,’ I replied. He had a brain bleed.’”
Looking back, Chavie says that her ignorance was a blessing. “Hakadosh Baruch Hu protected me. It took a while until we realized what this was going to look like. My husband had to relearn how to do a lot of things. We also had to figure out how to navigate the system and get him the best help possible.”
As Chavie adjusted to her new situation, the seeds for an unprecedented community resource were slowly being planted. Professionally, Chavie was a trained special educator who had already worked in the disability sector in Israel.
“Hashem gave me the refuah before the makkah in the sense that there were certain things I already knew,” Chavie explains, “although it was different because I worked with kids who had disabilities from the time they were born. My husband had been fine up to the moment he had the stroke.”
After two months of inpatient rehab and an outpatient stint at Hadassah, Chavie made the sudden decision to relocate her family to the United States. I ask her to explain her reasoning.
“This whole thing happened in the summer. By the time the Yomim Tovim were over, I felt that as an American, my husband just would do better there. Hebrew wasn’t his first language, and working with English-speaking therapists was preferable.
“But it wasn’t as if I had everything planned out. As soon as I made the decision, I bought plane tickets for the following week, because I was afraid that somebody would convince me that I was crazy.”
Upon their arrival in the US, her husband’s family secured a Bikur Cholim apartment and Medicaid coverage. But where to go from there?
From Crisis to Calling
“There was really no guidance at that point in terms of where to go for rehab,” Chavie says. “We landed here thinking, Wow! Now he’s going to go directly to an American facility and he’ll do great!”
But that’s not what happened.
“We had no idea what kind of place would address his needs. Every stroke is different and every brain injury is different. It took us time to figure out what to do.”
Chavie found herself struggling to balance her many roles: mother, caregiver, and medical advocate who accompanied her husband to every rehab session, believing that it makes a very big difference when a spouse is there.
While her husband’s family served as a major support system, “In terms of navigation, I was floundering. Till today, I feel tremendous hakaras hatov to Mrs. Judith Rackovsky from ECHO, who helped us a lot.”
As the years passed, Chavie began to encounter other young couples who had been thrown into the same silent struggle.
“In those days, people didn’t find each other as quickly as they do today. There weren’t any chats on the Internet where you could post a question and get a million answers.”
Recognizing that no existing organization could provide comprehensive answers for brain injury survivors, Chavie decided it was time to take action. She initially tried to pitch the concept of a brain injury hotline to several medical-related community organizations, having no personal ambition to run a nonprofit. But she was flatly rejected.
“There was no interest,” she says. “One of them told me, ‘Only if you focus on children.’ Another one said that brain injuries just didn’t interest them.”
Unwilling to let the idea die, Chavie consulted the mashgiach Rav Matisyahu Salomon, zt”l, with whom her family was very close. He voiced heavy concerns about the weight of running a nonprofit while she was still rebuilding her own life, but he left her with an indelible thought.
“I don’t remember his exact words, but he said that when you’re saved from a bad situation, you have an obligation to help others.”
Chavie had a new mission.
The Birth of BINA
BINA was officially born in 2003, drawing its name from binah, understanding, as well as an acronym standing for Brain Injury Assistance. Chavie recruited three family friends to form a baseline board. They drew up a proposal.
“I still have it in my drawer because it gives me such nachas to see how far we surpassed our goal in terms of where we wanted to go,” she says.
Chavie wanted her new organization to provide support, education and referrals. A special contact connected her to an anonymous donor who funded their seed money and amazingly continues to send monthly donations to this day.
The responsibility of her calling hit Chavie the moment her phone rang.
“I still remember that first phone call. I took a step back and thought, What have I done? Someone was calling about a young boy with a brain tumor. They were being told by their social worker to go to a certain rehab and wanted to know if it was a good place. That’s when the reality hit me: I didn’t know anything about tumors or children with brain injuries. I didn’t know anything about anything, really. What had I gotten myself into? This is what really motivated me to learn more.”
Chavie threw herself into relentless, hands-on education. She traveled across the country to meet doctors, tour facilities and note their strengths and weaknesses. In the early days, a prominent frum doctor who ran a brain injury unit tried to discourage her. “When I walked out, I was very distraught. But years later, he was the one who contacted me to run a project with him.”
“Where did you get the strength to persevere despite what this naysayer told you?” I ask her.
She grins. “I don’t take no for an answer. I saw the need and was already speaking to families. There was no way that this wasn’t going to happen. I just needed siyata dishmaya to figure out how to do it.”
She remembers the sheer nerve it took to get busy medical professionals to take what she was doing seriously.
“I once took the train to Manhattan three times to meet with one of the people on my medical advisory board. Each time I got there, I was told that his schedule had changed. His office hadn’t even let me know because I wasn’t important enough for him to meet with. He eventually became a really big believer in BINA. But it took a lot of work to win him over.”
The Science of Hope
“While computers eventually made things a little easier, I wasn’t really computer savvy,” she says. “I was writing everything down on pieces of paper. I started making folders for every family.”
Today, BINA has helped over 6,000 families around the world. To manage that staggering volume effectively, the organization stays strictly in its lane. I ask Chavie how they define their parameters with regard to dementia and Alzheimer’s. Are those conditions considered brain injuries or are they something else entirely?
“Sometimes there’s a cognitive deficit as the result of a brain injury, which we will deal with,” Chavie clarifies. “But if it’s true dementia or Alzheimer’s, we suggest that people contact Zikaron or similar organizations that have expertise in those areas.”
BINA focuses entirely on acquired and traumatic brain injuries. “The causes of traumatic brain injuries are many. People could have had a fall or a near-drowning. They could have been victims of an assault, sustained a sports injury or been hurt in a car, bicycle. motorcycle or scooter accident. Acquired brain injuries happen for a medical reason, such as the person went into cardiac arrest.”
When asked about the youngest stroke survivor she has dealt with, Chavie’s answer is heartbreaking: “Unfortunately, strokes can even happen in utero. The question is how to maximize each and every person’s recovery. That’s the core of what we do. Every person is unique. That’s why we put in so much effort looking into the different programs that are out there to optimize whatever capabilities Hakadosh Baruch Hu is going to allow the person to regain.”
The medical landscape has advanced by leaps and bounds since Chavie’s husband’s stroke in 1997.
“The rehab world is continuously moving ahead, which is something we work very hard to keep on top of,” she says. “Years ago, when we were dealing with this with my husband, they gave us a very narrow window. The doctors basically told us that if we didn’t see any change within a certain amount of time, he wouldn’t experience any more improvement. We were always looking at the clock, worried that the window was going to close. Fortunately, the medical field doesn’t have the same view anymore.”
Chavie tells me that she is constantly undergoing training and that she and her team attend national and even international conferences so they can keep up with the newest therapies. This naturally leads to the question of clinical research. Do such trials exist in the field of brain repair?
“Yes,” she replies. “But right after an injury, you’re not going to transfer a patient at such a critical moment. You have to wait until the patient is ready for rehab to discuss clinical trials. We actually post this information on our own website with permission from the different rehab centers. The thing is that they have very specific inclusion and exclusion criteria. For example, a person could be six months too old and they won’t accept him into the trial. But trials are complicated, and you can also end up with a placebo. You might not end up with the actual therapy.”
“Have you ever had an experience where something brand new was tried and you saw it completely transform a patient?” I inquire.
“That’s a very tough question to answer,” she answers honestly. “You can have the same therapy work on one person and not another. But just because something didn’t work doesn’t mean that it’s a failure; it was another clinical trial going in the right direction. I wish I could say that they’re all successful, but the brain is just too complicated.”
“Are most of the people who call BINA from America?” I ask her next. “A lot of referral agencies are international and many people come here for treatment. Is there something unique about rehab here?”
“People who live in other countries do call BINA, and we try to help whomever we can. We are hoping to have offices in Eretz Yisrael and Europe very soon so we can better help there. People also sustain brain injuries while traveling and have questions about how to proceed.”
Chavie also explains that coming to the United States from Israel for rehab isn’t like traveling here for a procedure.
“First of all, it’s complicated because of the insurance coverage. There are also language barriers. It’s not like undergoing an operation where you can have a translator explain things to the patient. We once had an Israeli child who came here for therapy, but he only spoke Hebrew and Yiddish. The hospital wasn’t able to find a translator, and they were in a location without a chasidishe community. It’s hard to work with a kid so that he can make gains when he doesn’t speak the language!”
The Injury You Can’t See
Today, BINA boasts a full team, including referral specialists, a medical advocate, an insurance advocate, an educator to work with the children when going back to school and a mental health professional, Elchanan Schwartz, who makes himself available for hospital visits, Zoom sessions and phone calls. One of the most delicate situations he handles is guiding a family when a patient refuses to cooperate in rehab.
“I know someone who had a stroke, and he refused to cooperate with the therapists,” I tell her. “Was the family supposed to push him harder? In the end he didn’t make a very good recovery.”
“I think that pushing is complicated,” Chavie reflects. “It depends on why the person doesn’t want to do it and the level of hardship. And I wouldn’t use the word ‘push’ as much as ‘encourage.’ There’s nothing worse for a brain injury survivor than feeling that he is no longer seen. You have to make sure that the person feels supported.”
Many people notice that when a loved one suffers a brain injury, it seems as though he has changed, often shifting into depression, anger or negativity. If a cardiac patient is treated, he remains the same, but a brain injury survivor can feel like a stranger. I ask Chavie why this is so common.
“Emotions are complicated,” she explains, “but there are several reasons. One is the emotional response. This person just went through something life-altering in a different way than a disease. The brain is in control of everything, so the patient can have all kinds of problems with everything from walking, using his hands, vision or hearing problems or problems with eating and speech. They are fighting so hard to regain what they lost.”
There is also a physiological component.
“Certain parts of the brain are in control of our emotions,” Chavie points out. “After a brain injury, people can experience both cognitive and emotional changes. The area of the brain that controls that emotion is affected.”
Hats Aren’t Helmets
While many brain injuries, such as Chavie’s husband’s stroke, are unpreventable, Chavie wants to issue two urgent warnings to members of our community. First, she addresses the lack of preventative care, especially among men.
“Other communities have started raising awareness about the need to undergo annual checkups. A lot of men aren’t monitoring their blood pressure, sugar and cholesterol. When we get a call after someone has already had a stroke, it’s very sad, as it might have been prevented. People have to be encouraged to take care of themselves.”
She adds a vital note for the younger generation:
“Sometimes people experience the symptoms of a stroke, but because they’re young, they don’t even think of it as a possibility. I cannot tell you how many times people have told us that they had stroke symptoms and didn’t take them seriously because they were young and thought, Oh, I’ll just take an Advil and go to sleep. I’m sure I’ll be fine by the morning. It doesn’t matter how old you are. If you’re experiencing those symptoms, you have to call Hatzalah. You can’t ignore it just because you’re young.”
Second, Chavie points to the devastating rise of injuries resulting from electric scooters and says, “It’s so hard to see families dealing with the difficulties of brain injury due to the use of electric scooters. These are terrible injuries. It’s so painful to see children in rehab. Some of them can’t walk, others can’t talk, and some of them never fully woke up because the brain sustained a really bad hit.”
As for the defense that the child was wearing a helmet, she says, “Helmets save lives, but unfortunately I have seen people who wore one and were still hurt very badly. That’s a mistake a lot of people make. It’s not a full protector.
“The other thing I want to say is that caps, hats and yarmulkes aren’t helmets. They don’t work. And if the helmet is hanging on the handlebars of the scooter, it’s certainly not going to protect anyone. A well-fitted helmet can save a life.”
Turning Pain into Purpose
Managing an organization of this magnitude is a relentless task. And brain injuries don’t adhere to a standard nine-to-five schedule.
“Brain injuries happen at any hour of the day, and when people call, we need to be there for them,” she notes. “But I try very hard to be present for my husband and children. It’s something we discuss all the time, and we work together to achieve this balance.”
As the organization has evolved, so has Chavie’s role in it.
“Over the years, I’ve shifted to a more administrative role, and the fundraising takes up a lot of my time, but I still love working with families,” she shares. “Baruch Hashem, we have a well-trained team, and I couldn’t do this without them.”
Looking toward the future, BINA’s vision extends beyond medical referrals and basic hotlines.
“We’re looking to grow in a number of directions. We’d love to allow the families we help to feel like they’re part of something bigger and that they’re not alone, and I think that that could be accomplished with weekend retreats, which we hope to offer in the future. We would also like to have more medical advocates, a vocational program for people who have completed rehab and are experiencing difficulty in getting back to work, and more.”
Nearly 30 years after her world shattered, Chavie has boundless gratitude.
“Today, my husband is a fully functioning individual. He’s a mentor in beis midrash. He does one-on-one with bachurim and he’s fabulous. He doesn’t walk with a cane or a walker, but his gait is a little bit compromised and he doesn’t drive. There were certain things that definitely affected him long term. ”
“Have you ever seen people with strokes who recovered completely?” I ask.
She takes a minute to formulate her thoughts. Chavie is exceptionally careful with her response.
“The answer is that we’ve seen people make tremendous gains. They go back to living their lives and doing things, but there are people who have come back to us and said, ‘Even though I’m back to work, I’m still X, Y or Z.’ There’s still something going on; they’re not back to baseline.”
She recalls one highly successful healthcare professional who attended a BINA event and pulled her aside.
“He said to me, ‘‘Look, you see me now. I’m functioning, but I just want you to know that I’m not who I was before. There are still certain things that are hard for me to do.’”
When asked what the most critical takeaway for the reader should be, Chavie centers the conversation on two definitive words: hope and prevention.
“People sometimes give up too soon. A brain injury is a big nisayon, and unfortunately not everyone has the results they were hoping for, but we’ve seen many instances of people making great progress. That’s something that everyone should bear in mind.”
She also wants to reiterate the importance of prevention.
“There’s nothing I could have done differently for my husband. I have no guilt. Zero. But to live with the guilt that something might have been prevented is an added pain that no family should ever have to go through.”
Chavie’s message is clear: brain injuries can change a life forever, but there is hope. She’s shown thousands of people that even in the darkest moments, support and perseverance can make all the difference. ●
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