What do you know about LOCKED-IN SYNDROME?
LIS for short is a condition where the patient is fully aware of everything but cannot make their muscles move. They are completely paralyzed, and they cannot even communicate (speak).
Imagine yourself on the moon, an echo of silence surrounds you as the cold bitterly embraces you, everything begins to ache, you become stiff from the cold and can no longer move. You are trapped under a pitch – black sky, you try to scream, and nothing comes out, any sound at all, no one is there to understand you or your pain. Trapped! How would YOU handle this situation?
90% of those with this condition die within the first four months. This story is about 1 of those that belong to the 10%.
“What do you know about Locked-in-Syndrome,” the managing editor asked. “Excuse me, what did you say?”
He had a yellow notepad in his hand. “The Käpylä Physical Rehabilitation Center called and offered an interesting sounding story. A young photo model has fallen ill with some awful disease, can’t talk or move anymore. We could get a touching story out of this”.
The ingredients for a story were good: a young beautiful woman, unknown illness, tragic fate. We decided to do a story, although Suomen Kuvalehti does not go after gossip. It, however, felt like a serious, human interest story.
– Leeni Peltonen
Kati “JCI- Young Achiever of 2014”
The Finnish author, blogger Kati van der Hoeven-Lepistö, is the award-winner ´The Finnish young achiever of the year 2014´. The prize was awarded by the junior division of the Chamber of Commerce International Finland.
Kati van der Hoeven-Lepistö is a 40-year-old former supermodel, whose career was cut short after an afflicted brain stem infarction in 1995. Kati was 20-years-old at that time, Kati lost the power of movement and the power of speech completely. Only her eyes are working, and she communicates with a letter chart.
The grand assemblage of instruments according to van der Hoeven is determination, faith, and toughness, these enable her to live a full life. She has helped and encouraged others to cope with being paralyzed and moving forward.
Kati is the author of her life experiences in the book ´Blink of an eye´ (only in Finnish), and she is an active blogger. According to the jury, van der Hoeven-Lepistö fosters a positive attitude to life, and she has affected thousands of people’s life and attitude towards life by teaching acceptance of diversity and understanding (spiritual growth).
The Young Achiever is the world’s most prestigious award, the junior division Chamber of Commerce International Finland to share their field and in his own right performing between 18 and 40 years of Finnish citizens. Competition is the national implementation of international ´The Outstanding Young Person Awards´.
I recently heard the story of another Finn on the Positive Psychology Facebook Group (30K+ members). About 20 years ago, Kati van der Hoeven, a former Finnish supermodel, lost her ability to move and speak. Since that time, she’s become a leading advocate for people with Locked-In Syndrome and other conditions using an eye-to-computer system to manage her writing. For this story, I communicated with Kati via Facebook Messenger, marveling the speed with which she is able to correspond. Is it the Finn in Kati, or something else? Not sure, but I think I got a better understanding – and appreciation — of sisu.
Giovanni Rodriguez, Forbes contributor
Kati & Henning van der Hoeven
Our marriage is not a traditional one. We are born in different parts of the world (tropics and subarctic). In other words, very different cultures (not to forget the language). Different religions, (Catholic and Lutheran) I must say though that neither one of us is the religious type. We don’t share the same skin tone, color of eyes nor color or type of hair.
I guess that you can say that we are an; International, intercultural, interreligious, interracial couple with a ten years’ age difference.
Moreover: HE is in perfect health, and SHE is completely paralyzed (cannot move at all and cannot speak either).
You might think that the odds are against us. However, marriage is not a game of odds. Marriage is like karma; what you put in, is what you get out.
Henning van der Hoeven
“It is your reaction to adversity, not the adversity itself, that determines how your life’s story will develop.” – Dieter F. Uchtdorf
Whether you care for the disabled or are physically disabled yourself — Whether you struggle against illness or watch as another close to you struggles — If ever you’ve searched for a story of perseverance, love, and joy when happily-ever-after meets real life, Kati’s story is for you. In life, we are each dealt a deck of cards, and depending on how we choose to play them, life turns out… Wonderfully. Kati was a young international model when, at 21, she had a stroke which left her Locked-In. Paralyzed and unable to speak, Kati had to learn how to communicate with her eyes and with her heart. Today, some twenty years later, she tells her story of pain, adversity, and hope, a unique story that will touch your heart and help you to overcome whatever odds you might face.
The power of hope, the power of love, the power of laughter all converge in this book to encourage us to face each hurdle as a challenge to make us stronger. This is Kati’s story and it can be your story too.
Kati tells her story to author Sarah Tun, in the hope that readers around the world will share in her love of life and her gift of laughter, knowing that everything can be overcome with heart, patience, perseverance, and hope.
– Sarah Tun
The Telegraph Locked-In syndrome article
A young and upcoming Finnish model who was left paralyzed after a stroke shares her life experiences in her blogs. Kati is a true (SISU) inspirational model who shows that through pure determination, faith, and perseverance anyone can make the best of their lives and live it to its fullest.