Henning van der Hoeven

Chronicles of a stroke survivor and Locked-In syndrome patient. By Kati & Henning van der Hoeven

Imagine yourself locked inside your own body My name is Kati van der Hoeven-Lepistö, and I am trapped inside my body. I used to be a model living and working in Los Angeles. In January 1995 at the age of 20 as I was visiting my family in Finland for the Christmas holidays I started feeling dizzy, I could not keep my balance and could hardly speak. The doctor in the emergency ward didn’t consider my case of such emergency because she thought; ‘a model living in LA, it must be an overdose.' The fact is that I never did drugs. I was as clean as a whistle, and the misguided assumption of the doctor cost me my mobility. I was having a stroke and as the hours went passing by, and I was not getting the adequate treatment. The outcome of that miserable night was that I was left with this condition called; ‘LOCKED-IN SYNDROME.' I am almost wholly paralyzed; I cannot even move my fingers or whisper a word, and the only thing I can move is my eyes. It was the worst thing that could ever happen. That night my life came tumbling down. The following days passed by, with me crying all the time, louder than a dozen lonely wolfs howling at the moon. I was in a state that can only be compared to those nightmares that people get, where they cannot move, and no word comes out. Everybody else wakes up from those dreams, I never did. At first glance, it seemed that fate just knocked me down and that the rest of my life would be as miserable as any life can be. Please let me share a little secret with you; ‘misery is not a reality, it is a state of mind.' Of course, fate did manage to make me miserable for a while. It did take some time for me to accept reality, to heal my soul, to learn to talk by using my eyes to spell out the words and even to learn how to eat. The fact was and remains that I will never be able to stand on my own again, but that was/is not going to stop me from being the best that I can be. It will not keep me from living and enjoying my life as much as possible. Every single moment of the day (when I am not in bed) I spend tied to my chair (I have to be strapped to it at all times because at any moment my muscles can have a contraction, and if I am not tied down I could fall out of the chair). I cannot move my hands, and that means that I cannot do anything at all. I need an assistant for everything, eating, drinking and yes, also for those things that people usually do in private. Life is not easy; everybody knows that it is a battle, it is a challenge. Anyone who dares to dream will get their hearts broken from time to time, and I sure had my share. But if you accept the challenge and rise to the occasion anything can happen, anything! Now almost 20 years after that horrible event I still cannot move, still cannot talk, but I am not living a miserable life. As a matter of fact, I am living a wonderful life; I am married to a wonderful man, Henning van der Hoeven. Together we write blogs and articles. We give presentations and talks as to motivate, inspire and empower. I used to see what happened to me as a tragedy; I don’t anymore. My life has a purpose, to inspire others to be the best that they can be. My husband and I live a meaningful life, and we want to share it with the world. Kati van der Hoeven

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