And Hashem God formed the man of dust from the ground and He blew into his nostrils the soul of life… (Bereishis 2:7).
What is this soul of life? It is a soul that includes the power of intelligent speech. What happens when you lose this blessing, the ability to talk? When your thought process remains razor sharp, but you can’t tell anyone what you are thinking? When you can’t call your wife and remind her to buy three cartons of milk?
Losing the Gift of Speech
In the summer of 2009, Ayal and Julie Shulman were standing at the cusp of a new life. Together with their three small children, they had just made aliyah to Raanana and were staying temporarily in a friend’s apartment. Ayal was employed as a business-development manager for an Israeli company; Julie foresaw a promising career as a speech therapist. And then, two weeks after their arrival, things changed.
“That night, for about an hour, Ayal began saying words out of context. Then he’d fall silent. And then the cycle would repeat itself,” Julie says. Although there were no other symptoms, the situation was alarming enough to warrant a trip to the Emergency Room of Tel Hashomer in nearby Ramat Gan. Once Ayal was settled in his room, he urged Julie to leave the hospital to take care of the myriad of details for their move to Yad Binyamin, a community in central Israel. Thus, Julie wasn’t present when Ayal suffered a stroke when an artery erupted in his brain. By the time the hospital reached Julie, the craniotomy to remove the blood clot and control hemorrhaging was underway.
“The first question was would Ayal make it?” Julie says.
Thankfully, he did. “We call my husband Ayal Hachayal, Ayal the soldier, because he’s a persistent fighter,” says Julie. Ayal’s stroke left him with what was later classified as Broca’s aphasia. This means that although Ayal has trouble speaking fluently, his comprehension is intact. Ayal has difficulty producing the right sounds and finding the right words. His sentences are limited to three or four words. And yet, when I speak to him on the phone at work where he classifies diamonds for Leo Schachter & Co. in Ramat Gan, I pick up his warmth, enthusiasm and eagerness to help… all given over in a delightful South African accent.
The Road to Recovery
Born in Pretoria, South Africa, Ayal made aliyah in 1995. After completing his army service he went on to study for an MBA at Bar Ilan University. Here he met Julie who was completing her Bachelor’s degree in Linguistics. In 2000, the couple traveled to the States, where all three of their children were born. Ayal was working for a high tech company and Julie became a Speech Language Pathologist, never dreaming how big a part of her life speech pathology was to become. Eight years later, they were back in Israel, learning to adjust to much more than just a new culture.
After two weeks in the ICU unit at Tel Hashomer, Ayal was transferred to a regular ward for an additional four weeks. Aside from dealing with Ayal’s precarious medical condition – and the shock and worry that accompanied it – Julie also had to deal with all the physical, financial, emotional and psychological complications that come with immigration. “The children were ages five, three and one. With no family support in Israel, things were a little complicated,” says Julie simply, without acrimony, without anger, giving me the feeling that there are at least two soldiers in the Shulman family.
What had led to the stroke? No one knows for sure, but a teeth cleaning months earlier could have been the culprit. A slightly curved mitral heart valve may have encouraged the formation of a blood clot and provided the ideal nesting ground for bacteria.
Released from the hospital, Ayal moved to Loewenstein Rehabilitation Hospital for the next seven months. The intense work with the team of physicians, rehabilitation nursing staff, occupational therapists, physiotherapists, speech therapists, psychologists and social workers was aimed at adjusting to the results of the stroke: impairment of speech and mobility. “For the first year, Ayal’s speech was limited to yes and no, but with time, he was able to say our names,” says Julie. On the physical side, after two months in a wheelchair, Ayal moved on to using crutches and then a cane.
On the Home Front
The effects of a stroke can include physical limitations, communication problems, fatigue and emotional changes. As stroke survivors try to come to terms with these changes, it’s common for many to suffer from anxiety and depression. “Recovery after a stroke is very individualized,” says Julie. “Not everyone has Ayal’s fortitude and motivation.”
Back at home, Ayal began to build a new life. Despite the limitations of his speech and the reduced mobility of the right side of his body, Ayal insisted on walking to shul. In a miracle that can only happen in Israel, one day, one of the founders of Bioness, a company that develops technologies to help people regain mobility, spotted Ayal walking outside. Ayal, he felt, was a great candidate for one of the medical devices his company was developing. It was a super fit. A special gait sensor in the innovative device adapts to changes in walking speed and terrain, thus allowing people with neurological impairments to walk easily on stairs, grass and carpet. “But we still don’t have carpeting,” says Julie. For Ayal, carpeting is a hazard that could lead to a fall.
Three years after his stroke, Ayal was back on full schedule. Although no longer a manager of business development in a high-tech company, he has found his niche at the diamond exchange checking the cut and clarity of gems.
“Work is the best speech and physical therapy program available,” says Julie. As a speech therapist, she knows.
As a unit, the Shulman family has continued to soldier forward. While Ayal’s right side still has minimal functional ability, it hasn’t stopped him from helping with household chores like the laundry. Other chores which require communication skills, like banking and paying bills, fall to Julie. With young children, the physical routine of getting through the day was one of the biggest challenges that Julie faced. “Today, nine years after Ayal’s stroke, the children are more aware of the differences between us and other families. That’s something we have to face daily. Because of his speech limitations, Ayal can’t help out with homework. Hiking, which is a big part of Israeli culture, isn’t an option for us. Instead, we go camping a lot. Outdoor barbeques, (braais to South Africans) is where Ayal shines,” Julie says. “We always try to weigh what is essential for the kids and what Ayal can be included in.”
A World with Few Words
“Aphasia has been called the ‘silent disability,’” says Julie. “You can easily spot someone in a wheelchair and the world is now accessible to them. In contrast, it isn’t obvious that someone has lost the ability to access words.”
The National Aphasia Association lists eight forms of aphasia. It can be so severe that communication with the person is almost impossible, or it can be very mild. It can affect a single aspect of language use, such as the ability to retrieve the names of objects, or the ability to put words together into sentences, or the ability to read. More commonly, multiple aspects of communication are impaired.
“Although Ayal’s cognitive abilities are intact, he can’t get out what he wants to say. Think of the TV antennas from yesterday. Just as reception came and went, the synapses in Ayal’s brain don’t connect optimally,” says Julie. Ayal tries to get past this by telling people, “Me understand, talking hard.”
But for Ayal, it isn’t just about speech. Since the part of the brain that processes language has been affected, it is also difficult for him to communicate by writing. Thankfully, technology is making it easier. “When Ayal missed his bus stop and got off in the wrong place, he couldn’t tell me where he was, describe his surroundings or text his location. Instead, he took a photo and sent it to me,” says Julie.
“Ayal needs face to face contact to understand best,” says Julie. “He needs to hear every word. It also helps if people slow down when speaking to him. Not because he can’t hear clearly, but because it takes time to process the information. Seeing things in writing helps, so I’ll WhatsApp him an invitation of an upcoming wedding instead of calling to remind him about it. He’s become very adept at cutting and pasting, so he’ll WhatsApp me a picture of three cartons of milk when we’re out of milk and I’m at the grocery.”
Communication is much more than just coping with daily living. “We connect to others by communicating with them. When the ability to communicate is lost, we lose that connection. Friendships are lost and it’s easy to feel isolated,” says Julie. Luckily for the Shulmans, they have been able to maintain a small circle of friends from the Ohel Ari Synagogue in Ra’anana, named for Ari Weiss, Rabbi Weiss’s son, who was killed in 2002 by Palestinian gunmen while patrolling Shechem. Whether it’s bringing home siddurim that need to be taped together or setting up for the weekly parsha shiur that takes place in the Shulman’s home replete with popcorn and whisky, Ayal is involved. The speaker tailors the shiur to Ayal’s needs. Clear, short sentences ensure that no information is lost in complex sentence structure. Impaired communication hasn’t stopped him from making clear the importance of family and community. “Family important, community important,” Ayal often says.
Get the Message Out
Aphasia is commonly a result of a stroke (about a third of people after a stroke have aphasia), but it can also happen after a brain tumor, meningitis, or head injury. Advanced medical technology means that more people who undergo a trauma can survive and must learn to cope with a disability. On the flip side of the coin, it’s up to us to learn how to relate to them.
In America alone, there are over two million people who suffer from aphasia and the numbers are growing. As both a clinician and the spouse of someone with aphasia, Julie is in a unique position to give speech and language therapists a new perspective. Invited to Emerson College, Boston University and the Massachusetts General Hospital, she has spoken about helping people with aphasia integrate into society.
Julie’s approach is to help people connect with religion. “You don’t need to be religious… but if this is one way that can help you improve your abilities, why not try it? It doesn’t matter what religion you are. We connect to G-d through our speech. There’s no point telling a person with aphasia that G-d hears what is in his heart. He wants to connect to G-d in the way that he was used to doing,” she says. Julie has connected with other religious leaders, including a former pastor in New York whose wife has the disorder, to make this happen.
On the home front, Julie has been working with the rabbis in her community to pinpoint what Jewish law says about people with aphasia. “An ilem, a person who can’t speak, is a mute. But that term and the halachot that surround it, don’t define aphasia. How does a person with language output challenges make Kiddush for his family? If he is a Kohen, how can he bless the congregation?”
Communication. Connection. It’s all about coming together… to each other and to the Source. “I function because I don’t have a choice. Day-to-day life is challenging. I try to be laid back and think about the bigger picture or else I would have difficulty functioning. Of course I see what can’t be a coincidence: I’m a speech therapist and my husband has aphasia. There must be a bigger reason for this to have happened. Maybe I am a messenger to raise awareness,” says Julie.
Ask Ayal how it all comes together and he says, “Shamayim.” It’s all in G-d’s hands.