What is Locked-In syndrome? Meet Kati van der Hoeven former model and one of the most positive and happy women I know. How does she cope with, at 20 years old, losing the power to move and speak. Read highlights from her inspirational story.
I was born and raised in Mikkeli, Finland. Since I was six years old, I always wanted to be a model, and from my teens, I started to do so. After graduating, I immediately moved to Milan to start working on my career. After one year in Milan, I moved to Los Angeles, California, where there were more opportunities to make it. I was starting to make a name for myself. In December 1994, I got asked to be in the summer catalogs of the leading Finnish fashion house. The photoshoot was the week before Christmas in the Canary Islands. Since I had to come to Finland for the job, I decided to take some much-needed time off and spent the holidays with my family.
On a regular evening, while watching TV with my mother, I started to feel dizzy. It got so bad that I could hardly walk or speak. My mother took me to the hospital. I was for hours in the emergency rooms while the doctors were trying to figure out what was wrong with me. It turned out that I was having a stroke, but the thinking at that time was that only older people could get strokes. As time passed by, I became entirely paralyzed. They did not have an MRI scanner at my hometown hospital at that time. It was three days later that they send me to another hospital to get the scan done. After the MRI test was done, the neurologist came to give the sentence. His exact words were; “it is like winning the lottery but in reverse.” He explained that what I had was a stroke and that my brainstem is severely damaged and that I have Locked-In syndrome. He also said that there was no treatment or cure for this and that I will be completely paralyzed for the rest of my life.
What is Locked-In Syndrome (LIS)?
Locked-In syndrome or LIS is a condition in which a patient is aware but cannot move or communicate verbally due to complete paralysis of nearly all voluntary muscles except for the eye movements and blinking. In other words, the brain is working perfectly, and you feel everything. Your muscles are also working, but the messages from your mind do not go through to your muscles to make them move. The best way to imagine what it is like to have Locked-In syndrome is by imagining having a nightmare and not being able to move or scream. Like sleep paralysis.
The person is conscious and can communicate with eye movements (I talk with my eyes.)
You have recently released your life story ‘Living under Water’
The writing itself started as a sort of therapy. It helped me cope with the situation. The idea of writing a book was not my own. It came from people that I met along the way. They kept telling me that I should share my story because it is so inspirational and that it could help others. And after hearing this many times, I thought to myself, “maybe they have a point.”
What do you want readers to take away from the book?
I think that what separates my story to most feel-good stories is the fact that my story does contain a miraculous event that leads to a happy ending. My matter was not one of battling the circumstances until you overcome them. My case was one of surrendering to the situation, accepting reality, and adapting to it. My life and my tale shows that even when all hopes are lost, you can still keep the faith and make it. And the proof of it is that the story does a fairy tale ending despite the fact that I am still entirely paralyzed.
In a few words, “even when you have to give up, it does not mean that you have to cave (give) in.”
You are one of the most extraordinarily happy Woman I have ever met (I think its your superpower) how do you maintain that?
Appreciation and gratitude to the little things in life that most people take for granted.
I had never thought about myself being such a happy person before Rowan Hooper approached me for an interview for his book, “how to be a superhuman.” He said that he was asking people around, “who is the happiest person you know?” and a few of them said my name. I was in awe at first, but then as I was thinking about it, I came to realize that I am quite a happy person.
As I started thinking about; why I am so happy and the things that make me happy, I came to realize that I have it all to thank my unfortune.
The worst thing of being entirely paralyzed was; not being able to communicate. When the speech therapist brought the board with letters on it, and I could spell out (say), my first word in three weeks felt like a blessing. I appreciate and am grateful for being able to communicate.
It was the same with eating. I ate only puree for a few months after the stroke. I had to learn how to eat differently. I felt like a kid receiving what she most longed for on the day that I got to eat and taste something else than mashed food. I appreciate and am grateful to be able to eat what I want to eat.
Being in a condition like I am, one learns to appreciate and be grateful for the little things. The people in my life. The ability to love and share this love. And even small things as the sun on my face or the dogs running around the house.
I am grateful for being alive and appreciate the fact that I can enjoy being alive and being inactive active.
Best piece of advice you’ve ever been given.
I cannot think about any particular advice that I was given. One thing that I always kept to heart and came very useful in my life was something that my mother always said.
Mum would always say, “No matter how angry you may get, do not burn bridges,” “not even the ones you have already crossed.” “Always keep all your options open,” “for you never know what life may have for you, in-store.”
One of your sayings is ‘Don’t dream your life… Live your dreams’ what’s dream are you currently living?
I guess all of them except one, we could not make our move to Spain yet. But hopefully, soon, very soon.
At this moment in my life, I have reached more then what I have dreamed of. I never thought I would get married. Have my own household. Model again. Get a book published. Make a couple of documentaries. You could say that I am surpassed my expectations and dreams.
Various reasons. In contrary to the Finnish culture, the Spanish culture (especially the Andalusian culture) is more vibrant, talkative, and joyous, which is something that I like. The climate also agrees with me, certainly compared with Finland. The warm temperature suits me and plays an essential factor. But also, the fact that there still a kind of winter. Unlike the tropics in Spain, you must always adapt your Clothing style. So, it does not get monotonous. I like being outdoors but still surrounded by people. The Spanish tradition is like that. And that is something that makes me feel at home.
If you could host a dinner who would you have around your table and why?
My loved ones, of course. Besides them, I would have Alexander the Great (King of Macedonia,) I like his tenacity and sense of fate. The other historical figure at the table would be Marcus Aurelius (Roman Emperor,) I like his philosophy of life. He was a stoic, and I was always kind of a stoic myself. And, stoicism is one of the fortes that helped me deal with my circumstances.
Besides a good conversation, I also want to have fun and laugh as possible. So, finally, I would have some funny people (maybe comedians) at the table.
I must confess, though, that I would not only be concentrating on the table guests. I like to eat deliciously so there must be an excellent chef in the kitchen.
What’s your favourite way to spend a day (and are new shoes involved!)
Shopping was one of my favorite pastimes. I guessed that I have finally matured! I like to be outside (in warm weather) and be with people. I could sit for hours and look and listen to people. Street performers, children-playing, and just regular people when they are just doing their things.
You and Henning (your husband) have a very special relationship – what is your secret?
The secret is not such a secret; it all starts with communication. We are bold and honest, and we can talk about anything. Even when we totally disagree on things, we can have discussions without getting into a fight. We do share the same philosophy of life. We both like to travel and warm weather. Henning and I also share a love for music. But what I think is the best trade that we share is; our sense of humor.
What do you have planned for 2020?
At this moment, we are working on promoting the book and a couple of documentaries we have made. The hope is that all come together in 2020, so we can finally make a move to Spain at the end of the summer, beginning of fall.
Where do you see yourself living in the next 10 years?
Definitely living in Andalusia and maybe even having a family.
How can we find out more about ‘Living under Water’ and connect with you?
Well you can find all the info you may need from my website, and you can also contact me via the website. “Living Underwater” is for sale on Amazon, and you can get it both kindle (digital) and as a paperback.
Thank you Kati!