During that time, just putting one foot in front of the other each day was a major accomplishment for our four teenagers, our parents, and our family. My brain was on autopilot, but I did the best I could, trying to give everyone what they needed in our new devastating reality, even though I knew it wasn’t enough. Baruch Hashem, we had a tremendous amount of support from our extended family and our community in Efrat, who helped out with our children, meals, and a million other things.

We somehow made it through those first few weeks. Eitan spent a full month in the neurology ward, and then several more weeks at Hadassah Har Hatzofim’s rehabilitation center, facing daunting challenges at every turn. The staff we met along the way was incredible. But living through recovery is a slow grind, and watching someone you love go through so much hardship is agonizing.

Eitan was finally released for six months to an outpatient rehabilitation center on Erev Succot, and we began the next chapter of our lives. The stroke left him unable to use his right arm, and his weakened right side and leg caused him chronic pain and fatigue. Having suffered major memory loss, Eitan remembers little of his pre-stroke life, and while friends are familiar to him, he can’t recall their shared experiences.

Eitan also suffers from aphasia, a little-known language disorder, that affects communication and comprehension in a variety of ways. During the first few months after the stroke, Eitan’s speech impairment was so profound that he was able to say just one word — “savta.” If he wanted to call me or ask for a drink,  all that emerged from his lips was the word “savta,” even though the words he was formulating in his head were “Leora” or “Coke.”

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itan was ultimately diagnosed with Broca’s aphasia, a form of aphasia in which a person can conceptualize words in his mind but has difficulty articulating them. Therapists spent months building up his language skills through conversation and speech therapy, working with him on an iPad and an aphasia notebook (which he actually prefers to the iPad since he can use it on Shabbat). Although Eitan’s vocabulary has expanded, articulating the words that are at the tip of his tongue can be extremely difficult, and it comes as no surprise that among the short phrases he has mastered are, “It’s so frustrating” and “chaval al hazman.”

Aphasia typically results from a stroke or traumatic brain injury, and it can lead to long-lasting issues with the ability to speak, read, write, comprehend, and use numbers. While there is no cure for aphasia, most people improve over time, particularly if they receive speech therapy. But communication problems can be persistent — some people with aphasia can’t speak at all, and others can only make sounds.

According to the National Aphasia Association, at least two million people in the United States suffer from the condition, making it more prevalent than Parkinson’s disease, multiple sclerosis, cerebral palsy, or muscular dystrophy. Amazingly, though, in a 2020 survey, more than 86 percent of respondents said they had never even heard the term “aphasia.”

This was the reality we encountered during our first few months back home in Efrat. At first, people had no idea how to interact with Eitan, and his friends had to understand that his aphasia doesn’t affect his intellect. His friends have been superstars, learning about the challenges Eitan faces on a daily basis so they can communicate better with him. I like to say that those who were not schmoozers before Eitan had his stroke are definitely schmoozers now.

As the months and years have passed, we do our best to remain upbeat. But the truth is that some days are hard, and others are even harder. Eitan has a few memories of life before the stroke, but not being able to do things he remembers doing, or that most people take for granted, can be challenging. Something as simple as going to shul is a real obstacle course for Eitan, who has difficulty reading, standing for too long, or being in a room where multiple conversations are happening at once.

Eitan’s speech has improved significantly, and he likes to say, “It’s not what it was, but it is what it is,” a phrase that has become a mantra for us as we navigate our new lives. Reimagining aspects of our family’s day-to-day life in ways that work better for Eitan has been extremely helpful. We bought a round dining room table so Eitan can see everyone and can make eye contact with whoever is speaking during meals, and we make sure there aren’t three conversations going on at once at our Shabbat table.

2021, four years after his stroke, Eitan felt confident enough to become part of the solution to the problems he himself faced. After his stroke, I had started a Facebook page called Koach Eitan to update our friends and relatives on his progress, and he and I decided to expand it in order to spread awareness and educate others about aphasia and stroke.

Since its launch, the Koach Eitan Initiative has become a resource for people living with aphasia. Eitan and I have spoken together about our experiences at awareness events to different groups and audiences including therapists, work teams, youth groups, and camps, as well as to a team of doctors at the Health Ministry, so we can educate people about stroke, aphasia, trauma, disability, and loss. People need to know that progress can be excruciatingly slow for those suffering from aphasia, but even at the pace of two-steps-forward-and-one-step-back, they are still moving ahead. And while mine is the voice that is heard most often, Eitan and I are a team — we speak together, share our story together, and are doing our best together to help those for whom aphasia is an everyday reality.

Because aphasia is an invisible disability that can lead to social isolation, Koach Eitan has launched initiatives to promote inclusion and connection. We developed the I’m ME project to encourage people to see beyond limited abilities and connect with the individual who still exists inside, while the LET’S TALK initiative offered guidance on how to speak to someone who has aphasia.

Eitan and I even promoted an “Aphasia Onion Challenge” last summer that had participants taking a bite out of a whole onion and nominating two others to take the challenge next, giving people a literal taste of what it’s like to have your mouth held hostage. Individuals in Israel, the United States, Canada, and Australia took part in the challenge, and so many people with aphasia and their families thanked us for shedding light on this relatively unknown condition.

Koach Eitan is also working on a new project involving a Haggadah supplement that Eitan created last Pesach along with Rabbi Johnny Solomon, a rabbi, spiritual coach, teacher, and writer who lives in Even Shmuel and has been a lifesaver to our family. Known online as “The Virtual Rabbi,” Rav Johnny, as he’s affectionately called, has been working with Eitan weekly to reconnect emotionally to some of the religious and spiritual aspects of his life that were casualties of the stroke. He has been instrumental in helping Eitan feel more like his pre-stroke self.

After discovering last year that Eitan was planning on sitting out the Seder because reading and speaking were both difficult, Rav Johnny decided to find a way to make the Seder more inclusive. He worked closely with Eitan to organize the personal collection of Haggadah notes Eitan had amassed over the years, including numerous insights of his own. They condensed the notes into a supplement that keeps things more concise and are easier for Eitan to read and comprehend. Eitan relearned those thoughts and ideas with Rav Johnny, and we printed them out in a large font and distributed them to everyone at the Seder. Bringing Eitan’s words and years of learning to life was an empowering accomplishment that also gave him the ability to participate more fully in the Seder.

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itan and I are grateful that we can use our experiences to help others who have suffered a traumatic event, loss, or disability. Even after so much was stripped from him, Eitan is living proof that people who have faced those challenges are still the same on the inside.

Eitan and I are the first to admit that some days, staying positive is a daunting prospect. But somehow, every time I’m ready to throw in the towel, I get a message from someone that keeps me going. There was the person whose sister-in-law’s mother had just had a stroke who wanted me to speak to them, or a rabbi who called to discuss his experiences with an aphasic shul member — just two of the many examples of how Hashem keeps telling me in His own way, “Keep on doing what you’re doing.”

Eitan and I have come a long way together since the stroke, when he had to relearn to swallow, walk, and talk. Today he is driven by a sense of purpose, helping others navigate the obstacle-laden roads that he has previously traveled. Having gone through the mill, Eitan is happy to help people learn and understand what aphasia is all about. When we give our talks, Eitan interrupts me often as he knows that it’s important for people to hear from him directly, especially when we open the floor to questions, which he does his best to answer. It’s amazing to see how far Eitan has come and to see that this is what he does now — he teaches.

Our children and our family have been supportive and understanding in the face of our new reality, rising above difficult circumstances and always being involved and ready to help. Our community’s love and support has been amazing as well, and this year, on Simchat Torah, our minyan, like the previous year, gave Eitan Kol Hane’arim. It was the perfect aliyah, because the kids said the brachah together with him. They were mindful of Eitan’s needs and came up with a solution for how to include him and make him feel special.

Looking ahead to the future, Eitan has taken on new hobbies, including painting and constructing Lego projects, and he does both hydrotherapy and swimming as he forges ahead in his efforts to create a life for himself. The fact that someone who was a CrossFit coach, who could lift weights heavier than I am, and who knew so much Torah inside and out, and now can’t remember and has limited mobility and aphasia, is enough to take away anyone’s confidence, but Eitan’s will and determination are mind-blowing. Yes, there are definitely a lot of frustrations, but Eitan has become a hero by adjusting to his new reality and figuring out how to put one foot in front of the other, every single day.

(Originally featured in Mishpacha, Issue 947)