In the Land of Aphasia - A stroke survivor's story coming to terms with the world around her
In August 2006 I had a stroke which ended up with aphasia, apraxia and dysarthria. Now recovered, I want to share my experience with fellow stroke survivors, their caregivers and the medical community.There is so much hope.
"I cannot speak!" Those were the last words I uttered. And just like that, I lost my ability to communicate in any shape or form.
It was Aug. 19, 2006--my 10th wedding anniversary. I was playing with my 3-year-old son in the living room, helping him solve a puzzle, when I felt something go wrong inside my brain, something terribly wrong. To this day, I cannot explain what it was I was feeling, only that it was something like a panic attack. I stood up and ran to the bedroom where my husband was sleeping, holding my hands around my head in a silent scream. He jumped up as soon as he saw the expression on my face and tried to calm me down. My husband was a physician by training and after a quick examination, he could see that something was wrong with my nervous system--I could smile with only half my mouth, for example, and my tongue skewed to the right. But I was 39 years old, 115 pounds and in good health. I didn't think it could be too serious, but nonetheless, we drove to the nearest hospital.
As soon as we entered the emergency room it all began: CAT scans, MRIs, electrodes everywhere on my body, doctors and nurses speaking jargon. In the end it became clear that I had had a stroke. The right side of my face was paralyzed. Worst of all, my left carotid artery was blocked forever and the Broca's area of the brain, more commonly known as the speaking center, was dead. When I say "speaking," I mean communication in any form: writing, drawing, body language, gestures--in short any means of expressing oneself.
The name of my newly acquired condition was expressive aphasia. Imagine a situation where you desperately want to say something but you simply don't know how. You cannot even make a gesture to say "yes" or "no." That is what it is like to have this condition.
There are approximately 5,700,000 stroke survivors in the United States. It is the third leading cause of death after heart disease and all forms cancer combined, and it is the leading cause of long-term disability. Among survivors, one in six develops aphasia. Although one's intellect and judgment remain intact when you have aphasia, nobody knows about it, because friends and relatives focus on the more manifest symptoms of stroke, like paralysis.
When I was discharged from the hospital, the doctors thought I would not speak again. As far as communication was concerned, I was back to square one, as helpless as a newborn baby. I had to relearn everything: I had to navigate through the fog in my brain to find the right words that go together with the right concepts. I had to think of the right sounds to form those words, and finally I had to command my muscles in and around my mouth to produce those sounds.
Who knew that the greatest challenge of my life would turn out to be the greatest blessing?
I could say that I rose to the challenge, grabbed it by the horns, and by sheer determination, I concurred my disability in a Rambo like manner. But this is not how it happened. It took much more than that. It took lots of love, letting go and a huge transformation on my part.
Love my husband showed, when he gently hold my hands, looked at me with a tender heart yet determined:" No matter what happens, I will always take care of you!" Love from my family, that brought them immediately to my side from 10 000 miles away, and made them take turns being with us for a whole year. Love from friends near and far, as they put their prayers behind one thousand origami cranes that hung on the ceiling of our bedroom, as they came to teach me how to speak again.
Letting go, accepting the "new world" as is, letting go of the ego that proudly stood between me and people that wanted to help me. Being open to receive, letting go of the notion of "I know best" in exchange for listening to people I trusted. To allow my loved ones bring out the best in them, and what a joy it was to see them at their best.
Taking each day one by one. No hurries, no petit worries, only seeing best in people , as if this was my last chance to see them... I hope that each of us who had a near death experience is transformed by this knowledge: Each and every day we wake up; we receive a gift, the most precious gift of all: "Another day to live!" It is not for granted, you know.
With the help of my exceptional therapists, I improved week by week and I'm still improving. I can write, draw and do math again. As of now, I can speak well, although a bit slow and clumsy. People think that I have a thick accent. They often ask me what the country of my origin is. I want to tell them "I come from a country called Aphasia."
Original Article published in Newsweek Magazine, April 11 -2008