Kati van der Hoeven

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Kati’s stroke focus (2) - Locked-in syndrome; my stroke aftermath episode 2


Locked-in syndrome; my stroke aftermath episode 2

I could not move anymore. I could not even speak. A strange case of paralysis. They ran a spinal cord test, which also came back negative. Doctors were surrounding me going through a list of possible causes. I remember hearing one of them saying; “stroke,” followed by a remark; “it cannot be a stroke, she is too young and only people over forty get strokes.”


Hours passed by still no answer. I could not move nor speak, but I was conscious and did not sleep a wink.

In the early morning, I started having problem breathing. My throat was full of slime. At that moment, they inserted a tube in my trachea to help with breathing.  The doctors and nurses treated me as if I am just a body and not a person. They did not even take the time to see if I understood what was going on. It was my mother that noticed from my reactions that I could still move my eyes and started communicating with me by asking questions and I would answer by blinking my eyes once for: “yes” twice for: “no.”

A day passed, still no conclusions. An MRI-scan must be taken, but they did not have such machine at the hospital, arrangements must be made to send me to another city so the scan can be done.

The ambulance ride to the other hospital was over two and a half hours. These were the longest hours of my life, and it is not over yet.

When we arrived, they took me to the MRI and immediately after the scan has been made and the doctors had a look at it, they came to tell us the verdict. We were in the hallway, mom and dad were standing next to my bed as the doctor showed the results and said; “You see this gray area,” “this is your brainstem and as you can notice it is severely damaged,” “what you had was a stroke.”

The tension was so thick; it felt like something heavy pushing down my chest. The doctor continued; “there is no cure or treatment,” “you may regain some movements through rehab,” “but the most probable scenario is that you are going to be completely paralyzed for the rest of your life.”

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Posted in on November 11 at 09:38 PM

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