Kati van der Hoeven

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Kati’s Stroke Focus (3) - Locked-in syndrome


Locked-in syndrome; my stroke aftermath episode 3

“Locked-In Syndrome,” “that is what it is called,” the doctor said. He explained that my upper brain still works perfectly, and so does my muscles. However, the messages do not go through to the muscles to make them move, and the tongue is also a muscle so that is why I cannot speak either.


All my dreams came crushing down. Could there be something worse than this?

In rehab center in Helsinki the speech therapist brought a Plexiglas board with letters on it so I can communicate with my eyes by spelling out words. It felt amazing to actually being able to say something instead of just blinking: yes and no.

My boyfriend came over from Los Angeles when he heard what happened to me. His visits were a bit of sweet followed by many sours. My heart would fill with happiness when he walked in the room. However, that happiness would only last for a few short seconds. It would turn bitter, very bitter when I saw the pity in his eyes. Not just pity for me but also a lot of self-pity. His visits would do more harm than good, and I was happy when he went back to the U.S.

I did not want to receive visitors for the same reason. I could not stand the somber look in the eyes of family and friends. Visits would always cause tears and pains; I could not handle it.

I have not seen the new and much praised movie ‘Schindler’s list’ yet, and I asked mom to rent it. We watched it together, and I laughed through the whole movie. The suffering of these people made me laugh aloud. That is how broken I was at that moment. I had no empathy at all.


Original Article

Posted in on November 11 at 09:40 PM

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