Aphasia: the awareness of an invisible disability as a survival guide

University of Houston professor Brené Brown in the field of social work has devoted her career to studying the issues of courage, vulnerability, shame, and empathy. He once said, “One day you will tell your story of how you got over 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 wonderful children, at the age of 42, suffered a massive ischemic stroke in the left side in the middle of the night. He ran his own property management business, was a volunteer senior paramedic and driver at Magen David Adom, a certified CrossFit trainer, and someone who regularly taught Jewish classes and inspired many.

Two days later, while Eitan was still unconscious in Hadassah Ein Kerem’s ICU, we launched Koach Eitan (Eitan’s Force). Initially, it was for the sole purpose of updating everyone on Eitan’s medical status at the hospital, giving us some breathing room as we answered 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 from strokes, and to learn about the invisible disability, aphasia, which is the loss of language and understanding, due to damage to the brain.

Like many, I knew then what a stroke meant, but I didn’t have anywhere near the amount of knowledge I now have about the brain, limbs, blood flow, muscles, tendons, and much more of the human body.

Career. (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 didn’t know what it meant; little did he know he was not alone. Aphasia, which is much more common than Parkinson’s disease, is a disorder that few are aware of or have very little understanding. I remember googling it and couldn’t get all the videos and definitions of what it really meant.

He was certainly not alone.

So we realized that Koach Eitan should become a place where we could not only update, but also try to teach others about stroke and aphasia.

It is very important to know the signs of prevention, and if one suffers a stroke or brain injury, it is also important to understand all the recovery terms and processes.

This also applies to understanding aphasia. If you meet a person with aphasia, how do you communicate with that person? Aphasia affects speech but not intellect. Eitan and I have come across many people who do not know what aphasia is. We need to have many different meetings and appointments (including some medical appointments as well). We have found that not 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 okay for us to explain before we start?

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

Somewhere along the way that first year, he led us to start with Team Koach Eitan, in the Jerusalem Marathon. This year, like all previous years, we raced in our team jerseys, hoping that seeing them from the back or front would make them curious and if they didn’t know who we were and what our team stands for, they might ask a question. , giving us the opportunity to inform you. In this way, viewers could learn, be more aware, and hopefully pass that information on to others.

Even during the coronavirus pandemic, we marked an important milestone over the last year when Eitan joined me to give a joint presentation. Knowing Eitan can help you understand much more than words, facts and figures.

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

In addition, it is important to know how to support and help victims and their families through the difficult challenges and road 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 talk to about these issues could one day potentially be his survival guide.

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


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