Henning van der Hoeven Kati’s Chronicles: 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 doctors in the emergency ward didn’t consider my case of such emergency because she thought; ‘a model living in LA, it must be 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 completely paralyzed; I cannot even move my fingers or whisper a word, and the only thing I can move are 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 nightmares, 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 tied onto it at all times because, at any given 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!

I am still paralyzed (over 20 years now). 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 consider 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.

My husband Henning and I write blogs and give talks. Our aim is to inspire by showing a different perspective on life, focusing on what is crucial in life, the positive side of it and the strength of the human spirit.

We do this by sharing stories, anecdotes and a bit of humble advice.

Kati van der Hoeven-Lepistö (1974, Mikkeli, Finland) & Henning van der Hoeven (1965, Willemstad, Curacao) Have been living together in Mikkeli, Finland since January 2011 and married in December 2012.
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