Aphasia: Awareness of an invisible disability as a survival guide - opinion

“One day you will tell your story of how you overcame what you went through, and it will be someone else’s survival guide.”

THE WRITER and her husband. (photo credit: Courtesy)
THE WRITER and her husband.
(photo credit: Courtesy)

University of Houston Prof. Brené Brown in the field of social work has spent her career studying the topics of courage, vulnerability, shame and empathy. She once said: “One day you will tell your story of how you overcame what you went through, and it will be someone else’s survival guide.”

Just over four years ago, our family needed a survival guide, as my husband, Eitan, a wonderful husband and an amazing father to our four terrific children, at the age of 42, suffered a massive left-sided ischemic stroke in the middle of the night. He had his own property management business, was a volunteer senior paramedic and driver in Magen David Adom, a certified CrossFit trainer and someone who regularly gave Jewish classes and inspired many.

Two days later, while Eitan was still unconscious in the ICU of Hadassah Ein Kerem, we launched Koach Eitan (Strength of Eitan). Initially, it was for the sole purpose of updating everyone on Eitan’s medical status in the hospital, giving us a bit of breathing room from answering so many calls and messages from Israel and abroad.

In turn, this led us to write and learn more about strokes, the physical disabilities that can result due to stroke, and learn about the invisible disability, aphasia, which is loss of language and comprehension, due to damage in the brain.

Like many, I knew then what stroke meant, but I had nowhere near the amount of knowledge that I do now about the brain, limbs, blood flow, muscles, tendons and so much more of the human body.

Stroke. (credit: PIXABAY)Stroke. (credit: PIXABAY)

The first time I heard the word aphasia was when the doctors told us that due to Eitan’s stroke, his language center had been damaged and he had aphasia. I honestly did not know what it meant; little did I know that I was not alone. Aphasia, which is much more common than Parkinson’s, is a disorder that few know about or have much understanding of it. I remember googling it and just not being able to grasp all of the videos and definitions of what it actually meant.

I was certainly not alone.

We then realized that Koach Eitan, should become a place where we could not only update, but try and teach others as well about stroke and aphasia.

Signs of prevention are so important to know, and if one does suffer a stroke or brain injury it is also important to understand all the terms and processes of recovery.

This goes for understanding aphasia as well. If one encounters a person with aphasia, how does one communicate with said person? Aphasia affects speech but not intellect. Eitan and I have encountered many people who do not know what aphasia is. We need to have numerous different meetings and appointments (including some medical appointments, too). We have found that not too many people know what the condition is either. Now we start each meeting with this preface: Eitan has aphasia do you know what that is? Would it be ok for us to explain it before we start?

Sometimes, it would happen that we would need to explain it to people in the medical world. We understood that there was a great need to just ensure this disorder has a name, recognition and wider understanding. We started talking to groups, people in the medical field, physical therapists, interested parties and the general public.

Somewhere along the way that first year, it led to us starting Team Koach Eitan, in the Jerusalem Marathon. This year, as in every previous year, we ran with our team shirts, hoping that seeing them from the back or the front would spark curiosity and if they didn’t know who we were and what our team represents, would maybe ask a question, giving us a chance to inform them. In this way, spectators could learn, become more aware and hopefully pass that information onto others.

Even during the coronavirus pandemic, we marked an important milestone over the last year when Eitan joined me in giving a joint presentation. Meeting Eitan can help further understanding far more than words, facts and figures.

Around the world and in Israel, many are working hard to raise stroke and aphasia awareness – not only to support stroke victims and their families whose worlds have been turned upside down – but to create awareness of stroke prevention and intervention as well. It is imperative that we teach others prevention methods, warning signs, and the immediate steps to take if someone suffers a stroke.

Furthermore, it is important to know how to support and help the victims and their families through their tough challenges and journey ahead. This can only happen if we accept the task at hand to learn and then teach others.

We have taken Brown’s words to heart, because we truly believe that each and every person we speak with about these issues, we could one day, potentially, be their survival guide.

The writer is director of Koach Eitan and an activist in raising awareness about the effects of stroke and aphasia. To learn more, you can be in touch at [email protected]