Book Viral Review: ‘Living Underwater’
Locked-In syndrome, not the end of the runway (Kati’s story)
What do you know about LOCKED-IN SYNDROME?
The Locked-In Syndrome (LIS) is a catastrophic condition caused most often by ischemic stroke (infarct) or hemorrhage, affecting the brainstem. A patient suffering from LIS is aware but cannot move or communicate verbally due to complete paralysis of nearly all voluntary muscles in the body except for vertical eye movements and blinking.
There is no specific treatment for Locked-In syndrome. Depending upon the cause, a person may recover, although complete recovery is highly unusual (one such recovery is Kate Allatt from Sheffield, South Yorkshire.) Most patients with this syndrome do not recover although they may learn to communicate using eye movements.
Imagine yourself on the moon, an echo of silence surrounds you like 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%.
Alexandre Dumas provided one of the earliest descriptions of LIS in “The Count of Monte Cristo” by vividly depicting a character who was “a corpse with living eyes.” Following a stroke, Monsignor Noirtier de Villefort could only communicate by raising, closing, or winking his eyes.
Not many have heard of LIS until the book “The Diving Bell and the Butterfly” (also released as a movie) by journalist Jean-Dominique Bauby (editor-in-chief of French ‘Elle’) 1997 was published in 1997.
Kati & Henning’s Interview on Sky News UK Breakfast Show; Sunrise
“Kati and her husband are the happiest people I have ever met.”
– Kate Allat
Kati & Henning
Our marriage is not a traditional one. We are born in different parts of the world. In other words, different cultures (not to forget the language). Different religions. We don’t share the same skin tone, color of eyes, or color or type of hair.
I guess that you can say that we are an; International, intercultural, inter-religious, and interracial couple with a ten years age difference.
Moreover: HE is in perfect health, and SHE is almost entirely paralyzed (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
The trailer of the documentary:
The Green Room Interview (Fusion International Film Festival)
The book: ‘Superhuman’
“For me happiness is love, not just receiving it but also being able to give it, to share it,”
“Secondly, I would say it’s having a purpose in life and making a difference in other people’s lives, as little that it may, be.”
– Kati van der Hoeven
Forbes Magazine Article
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 at 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
The Guardian, UK; How we live together:
The Mirror, UK; The Notebook:
Kati & Henning interview with Terry Smith on Brain Injury Radio:
Candidate in Miss Wheelchair World 2017
How beautiful are the people who just make you want to say; “thank you for being in my life.”
A heroic tale of overcoming despair against all odds – the life story of supermodel Kati van der Hoeven (Lepistö)
Kati’s life changed forever when she suffered a hemorrhagic stroke in 1995 stroke (20 years old). As a result of the stroke, Kati has LIS Locked-In Syndrome. Kati is almost entirely paralyzed and cannot speak either.
However, her determination, strength of character, and indomitable spirit soared, and she learned to flourish despite the harrowing circumstances.
Imagine being unable to move or speak with no chance of recovery.
How do you communicate with anyone?
How do you stop yourself from falling into the depths of depression?
How can you live a meaningful life?
Kati’s first goal had been to survive. Now she empowers others not just to survive, but to thrive against any odds.
This is a book of laughter, love, hope, and happiness in the face of extreme adversity. It will lift your spirits and guide you to overcome your own difficulties and live your best-ever life.
‘We learn best by living’
– Kati van der Hoeven
“Kati’s life is a beautiful ode to human resilience.”
– Emilia Lahti
(Picture: Joonas Salo)
Kati van der Hoeven (Lepistö).
Former supermodel and stroke survivor.
Locked-In Syndrome since 1995.
Author, Blogger, Public Speaker, and Fashion Model.
Former board member of Cogain. Ambassadeur of SpecialEffects UK. Ambassadeur of Haltija. Ambassadeur of Miss Wheelchair World.
Awards and recognitions: JCI Young Achiever of the Year 2014, JCI-Mikkeli Everyday Hero award 2014, Face of Sisu 2015, Mahe Asal (Iran) inspirational woman/story 2016.
Blogger at The Huffington Post and Stroke Focus.
TEDx Speaker: Imagine if you had a stroke and were completely paralyzed – Kati Lepistö (on YouTube)
The central personage in the documentaries “Eyes can Tell” & “Beauty and the Wheelchair.”
Finding Yourself After Stroke is a world-first compilation, featuring the stories of 26 young stroke survivors (one of them being Kati), whose lives have been suddenly and unexpectedly impacted by stroke.
The authors candidly describe the moments that led up to their stroke event, diagnosis, rehabilitation, and how their life experiences and perception have changed post-stroke.
There are many physical and “hidden” challenges to navigate after strokes, such as; Aphasia, Dysphagia, Emotional Dysregulation, Executive Functioning, Hemiplegia, Identity Loss, Locked-In Syndrome, Nerve Damage, Neuro-fatigue, Pain, Relationships, Visual Impairment, and much more…
While each stroke event and story within these chapters is unique, there is one common theme throughout – that your current circumstances do not determine your future, nor does your stroke define who you are.
This book doubles as an insightful resource for medical students, acute care teams, stroke nurses, allied health rehabilitation therapists, and neurology & cardiology specialists to provide a deeper understanding of the living experiences of their young stroke patients.
The Finnish author, and blogger Kati van der Hoeven-Lepistö, is the award-winner of ‘The Finnish Young Achiever of the year 2014.’ The prize was awarded by the Junior division of the Chamber of Commerce International Finland (aka JCI-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. At that time, Kati was 20 years old and had completely 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 move forward.
Kati is the author of her life experiences in the book; ‘Blink of an eye (in Finnish)’ and 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 lives and attitudes toward 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 the international ´Outstanding Young Person Awards.
Keynote Speech for Cogain Virtual Event 2020 (Eye-Gaze Interaction)
“The stroke was a gift, not a curse; you’ve just got to shut out all the negativity and see out the heartbreak, then own what happens next.”
– Howard Wicks