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
Although my situation (not being able to move and do things for myself), I still have people around me to do it all for me. I do not have to rely on the compassion of others to survive. Not everyone is so lucky.
So many people believe that there is only one way to be happy. They cannot accept that a person that is paralyzed can be happy. Some people recommend all kinds of medical/scientific treatments or procedures. Then there are the others that suggest alternative therapies.
My dad and I are so much alike; we don't give in. That's why our arguments last so long. I must raise my hat to Dad for he has stayed in the picture through this all. Not many men can handle this situation, and it wasn't easy for him.
<strong>One of the cornerstones </strong>of our union is; <strong>"honesty."</strong> "No reservations"; If either side cannot be honest and trust on the honesty of the other, if honesty fades away, so will the respect and soon after the love will die, and the relationship will cease to exist.
What I thought was true love, was just one more cruel lesson. Maybe a lesson I had to learn (love yourself). I may have had great attitude and confidence before leaving for paradise. However, that experience came to show that when it came to men, love, and relationship, my self-esteem was still low.
I was fourteen years old when I had my first 'boyfriend'. What kind of relationship can you have at that age? After two weeks, I thought to myself, "I do not have time for this", so I broke it off and went back to favorite hobby at the time: dancing.
Kati is my wife. Kati is the young woman who suffered a stroke in 1995 and since that has been almost entirely paralyzed. Kati is a woman that has spent almost her entire adult life trapped inside her body. Kati is also the person that knows how to enjoy life at the moment to the fullest making the most of each and every day.
Rejoice in happiness today. Do not couple your happiness to time, dates, and resolutions. Match happiness with every second of your life. Do not settle for content today hoping that happiness will come to you tomorrow.
It takes some time to get ready for the day. The first thing I do is decide what I am going to wear. Every day I make myself beautiful. With carefully thought clothes, accessories, and matching shoes, not to mention hair and a bit of make-up. It is my way to fight possible depression and the somberness of the situation.
Kati and I are highly compatible; our communication lines are wide open. Intellectually we are on the same wavelength and so is our sense of humour. We have a very similar attitude towards life, and it did not matter that she was paralysed.
my mother's birthday. The doctor called my parents in to break the news to them. "From the brain scans, we can see that your daughter's lower brain area is completely gray." "Our conclusion is that she had a stroke," "I am sorry to inform you this, but the brainstem is so severely damaged that she would not be able to move voluntarily at all for the remainder of her life."
I've long told bemused friends that I'm not afraid of being haunted and that I actually think it would be quite cool if it happened. Whilst some say that they would rather die themselves than be visited by the dead I don't see what all the fuss is about.
Every experience in our lives leaves its mark. It molds our character and sculpts us into the perfect person that we are supposed to be, or at least that is how it should be. It took several years. Nevertheless, I have been able to turn my limitations to advantages.
If you are searching for someone that spreads own pity, talks about their pain and suffering, someone who lectures over the awful parts of being sick, the dark side, the hurts and the anxiety, I am sorry; you are in the wrong place.
Sometimes I think how much easier life could be if I could just speak or if I could at least move my hands and do some things for myself. But I do not dwell on this stuff. I rather sit in my chair and enjoy the beauty of life.
What for most people is only a nightmare that lasts few seconds; is for me a way of life. No half-awake/half-asleep, fully awake. No hallucinations, reality. As a matter of fact, in my case, it is vice versa.
24/08/2016 14:20 BST
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