Celebrating 25 Years of Locked-In Syndrome

(Tribute to a Wonderful Life)

(Click here for audio version)

January 10th, 2020, is the 25th anniversary of the stroke. An average cerebral infarction takes about six minutes. Mine took over twenty hours. In all this time, the doctors could not figure out what was going on with me. They ruled stroke out because the thinking at the time was that; only people over forty years get brain infarcts. I was only twenty years old at the time. 

It was three days of total paralyzes and no answers for what has happened and what could be done. 

After an MRI scan on the 13th, it finally became clear. The neurologist came to give us (my parents and me) the sentence. What I had suffered on that harrowing night was a stroke. As a result of this, I now have Locked-In Syndrome, which means that I cannot move my muscles. And, there is no treatment or cure for it. I could feel my heart imploding as I heard the words. My life was over. 

Can you imagine anything worse (trapped inside your body)? Not able to move a finger. Not even able to speak. A living, breathing, thinking, and feeling vegetable. Why couldn´t I just have died? Death would have been better than this misery. 

January 10th, 1995, was and still is (needless to say) the worst day of my life. My life changed on that day and would never be the same again. It was a dreadful day. Nevertheless, I am going to celebrate that day as if it was a glorious event. Let me tell you why. 

The life expectancy of a LIS (Locked-In syndrome) patient (80-90% of patients perish soon after the misfortune) if they survive the first months was ten years. A study made a few years back revealed that the life expectancies of stable LIS patients are; 83 % of patients live ten years, and 40 % live 20 years. There were no numbers for patients living over 20 years. Considering these numbers, living for so long (25 years) with LIS is something to celebrate. 

My whole life, I dreamed about being a supermodel, and just when I was going to make it, the unthinkable happened. I was going to be a vegetable for the rest of my life. 

The expectations for rehab were not high, either. The therapists said that with some luck I could regain a bit of movement. Like moving a finger perhaps.  

There was not much to look forward to. To hope was all I could do. 

Every aspect of life changes when you hit rock bottom. Which, in my case, was caused by complete paralyzes of all voluntary muscles. How you perceive the world, life, and even the most minuscule details changes. When you cannot do anything at all, one learns to appreciate life, the little things, and all that one can do. 

I did not even have control over my eyes after the stroke. One eye was jumping around like a bouncing ball. The other eye was stuck looking straight forward. This lasted for a few weeks, then suddenly one morning, I opened my eyes, and I could move them again. I was still entirely paralyzed, but I could now roll my eyes, and this felt like a blessing. 

I could not move my tongue, I could not speak, but I could use my eyes. The speech therapist brought me a board with letters on it, and by looking at the letters, I could form words and communicate. I was ecstatic; it felt like a miracle. 

Get Kati’s autobiography; “Living Underwater”

There was not much they could do for me in rehab. I did not regain movement in a finger. However, I regained some control over my neck, I learned to chew a little, and I could stretch my legs. All these slight movements felt like a blessing or a miracle. The tiny gestures and the small details started to make a big difference in my life. And by this, my life became a journey filled with little blessings and miracles — another reason to celebrate.

With a gained blind (some would say naïve) faith and a new outlook on life, I moved forward (yes, even a quadriplegic can move ahead.) I focused on what I could do instead of all that I have lost. And as life moved along, the little blessings and tiny miracles grew. Not only I started to make some dreams come true, but I also began to achieve heights that I never even dreamed of. I traveled the world. I wrote a book. I strolled on a catwalk, I even found love and got married. Despite the misfortune, I have lived a life of divine grace — definitely, a reason to celebrate. 

Twenty-five years ago, all I wanted to do was to die. Today I am happy to be alive. I have gotten to know true love and heavenly happiness. Most of my dreams and wishes became true. The only thing that I still yearn for is a place where I truly feel at home and a family, perhaps. But it is good to have dreams and things to look forward to. 

Despite being trapped inside my body, I have lived a beautiful life, and that is a reason for celebration. 

Kati

Get Kati’s autobiography; “Living Underwater”

(Kati & Henning van der Hoeven)