When stroke recovery doesn’t happen.
I’ve long been associated with the notion that stroke recovery is always possible, whether those improvements are small or large positive changes.
However, I have to admit that since meeting Kati Van De Hoeven in beautiful Finland last weekend, I’ve met someone who sadly hasn’t made very much physical improvement in twenty years, after her brainstem stroke and locked in syndrome diagnosis. Whilst she eats, writes books and blogs, plans meals, enjoys retail therapy – if it involves boots and bags – moves her head and eyes very effectively, but she is unable to do much else.
Kati is now forty years old and yes, she suffered her illness at the shockingly young age of nineteen and a half, in her prime and as a successful model living in LA. It would be fair to say that she looked like a brunette version of Cindy Crawford!
Her phenomenal blog can be read here. Kati has been my second heroine (my first being Ms Christine Waddell) since I came across her blog on Facebook early last year. Her unique approach to life inspires me and quite frankly stops me immediately if I ever start to go down a self-pitying track about everything I’ve personally lost since 18.09 on 7th February 2010. You really are either a glass half full or half empty kind of person and I’m definitely, and mostly, the former!
As I approached her wheelchair, I was stunned by her natural beauty, impeccable dress sense, sublime makeup, beautifully coiffed blond hair and not to mention her fabulous knee-length, tanned, suede boots! (A girl after my own heart in far more ways than one!) I quickly realised that Kati shares not only my annoying emotional lability, but a smutty sense of humour, obsessive traits, scary determination, stubbornness and sense of informality. Yeah, I was the ugly sister who was perhaps separated at birth!
Her husband Henning, yes husband, who she met only 4 years ago cleverly and tenderly stands by to interpreted her eye movements, on what was an invisible e-tran board. You see, they have honed their communication system between them so well, that Henning doesn’t even need to use the physical transparent communication tool at all now. Now that’s impressive! Kati shows in no uncertain terms that a long term Locked In Syndrome diagnosis does not necessarily equal a poor quality of life or none existent emotional well being.
I was there with a documentary film crew to ask her questions about her former, exciting life, her illness twenty years ago, how her and her parents each coped and perhaps learned to accept and let-go of their anger, her relationships with friends, how she met her loving husband, her Christmassy wedding day, what her hopes for the future are and of course what the unique Finnish word – SISU – means to her.
If you are not familiar with the word SISU, all I can say is that Kati epitomises it perfectly!
According to Wikipedia SISU is:
‘Sisu is a Finnish word generally meaning stoic determination, bravery, resilience, perseverance and hardiness, expressing the historic self-identifiedFinnish national character. Sisu is about taking action against the odds and displaying courage and resoluteness in the face of adversity. Deciding on a course of action and then sticking to that decision against repeated failures is Sisu. It is similar to equanimity, with the addition of a grim quality of stress management. The pertaining adjective is sisukas, “having the quality of Sisu“‘.
Kati is all these things and far more. She and Henning are quite simply incredible human-beings who deliberately choose a life of altruism and optimism because frankly, it feels better. That doesn’t mean they don’t have tough times now, because sadly there is seemingly no end to shit times for some unlucky people.
During our visit, I couldn’t get out of my mind, something that I found so incredibly moving, when I spoke to Kati’s dutiful and loving mum. She said,
‘Now, I can die.’
She said this after observing her daughter so happily married with her son-in-law, Henning, something, I’m sure, she could never have imagined, years earlier. As a mother myself (and it was Mothers Day yesterday), I found this thought deeply distressing.
You are probably thinking what they do together? Well, they sum up true, basic happiness which I found both incredibly moving and humbling.
A happiness where you don’t need expensive objects, tablets or phones or ambitious aspirations, flamboyant holidays and houses, or that perfect job, just simple, old fashioned unconditional love.
They share a marital bed, they write their books and popular blogs during the bleak winter months, they share the joy of having their dog ‘Happy’, they listen to the radio, take romantic walks as Henning pushes her wheelchair during the milder spring and summer months, they take short breaks (they are shortly off to Latvia), they listen to Caribbean music and Henning often prepares and cooks Kati’s countless recipes! She loves cooking.)
Our Finnish hosts were amazingly kind and generous and our young filmmakers certainly enjoyed their generous, home-cooked meal and dessert! Not something they are used to as recent Graduates!
As we prepared to leave their relaxing, welcoming home to take the two hour journey back to our hotel, I couldn’t help thinking that sadly beautiful Kati hadn’t made very much physical stroke progress in twenty years. Although I do wonder whether she would have made more physical progress in 2015 as opposed to 1995? Especially with advances in stroke rehabilitation therapy, research and treatment plans?
However, what is true is that her stroke recovery has not just been about her trying to overcome her enormous and catastrophic physical difficulties, but her only-to-be-expected psychological and emotional issues that followed.
We must never lose sight of the emotional (and cognitive) difficulties relating to stroke – from the apathy, the depression, the isolation, the post traumatic stress disorder, the withdrawal, the low-confidence and low self-esteem, etc.
Kati has journeyed through her loss cycle – from the denial, to anger, to depression and to acceptance – and unbelievably found her current happy, truly inspirational state just 3 years after her life changed beyond belief. It would be some considerable years after that, when she would meet her soul mate, best friend and true love of her life, Henning.
As far as I’m concerned, that is actually an incredible stroke recovery!
We are looking for distributors for our ‘Locked-In Forever?’ documentary if you are interested, please email me.