Locked-in syndrome, not the end of the runway


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.

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.

It describes what his life is like after suffering a massive stroke and offers a haunting, harrowing look inside the cruel prison of locked-in syndrome, but it is also a triumph of the human spirit. It also details what his life was like before the stroke.

On December 8th, 1995 at the age of 43, Bauby suffered a massive stroke. When he woke up twenty days later, he was entirely speechless; he could only blink his left eyelid.

Despite his condition, he wrote the book by blinking when the correct letter was reached by a person slowly reciting the alphabet repeatedly using a system called partner-assisted scanning. Bauby died suddenly from pneumonia two days after the publication of his book.

The first reaction of anybody who hears of LIS is horror. Wholly paralyzed, imprisoned inside your own body. Useless, a living vegetable or as Dumas called it; “a corpse with living eyes.” What can be more tragic?

Although the locked-in syndrome appears as the most dramatic form of motor disability one can imagine, some scientific reports indicate that the quality of life of patients is not so poor as expected.

Many people with locked-in syndrome do not live beyond the early (acute) stage due to medical complications. However, others may live for another 10-20 years and report a good quality of life despite the severe disabilities caused by the syndrome.

A recent survey investigated the self-reported quality of life of chronic patients with locked-in syndrome and concluded that many patients have a happy and meaningful life, especially when proper social services help patients to have a normal role at home as well as in the community.

One of these patients is supermodel Kati van der Hoeven (Lepisto). Kati suffered a massive stroke on January 10th, 1995 (same year as Bauby). She is married and lives a wonderful happy life. She is a published writer (Silmänräpäys), she writes blogs, makes vlogs, gives lectures and also models.

Rex C Fernando & Nawal Benzaouia & are co-founders of the internationally renowned French company “Massira Inclusive” (“inclusive” because it includes people with disability.) The project is close to the heart of Nawal because of her sister ‘Salwa.’

Salwa Benzaouia was born with an additional chromosome (down syndrome). Besides that, she was also diagnosed with leukemia. However, Salwa battled it, and her extra chromosome helped her to triumph over it. Nevertheless, as battle scars Salwa lost her lovely hair, they never grew back.

Salwa (is a bundle of joy and love, everybody should have someone like her in their life) is a fashion addict, and she loves to go shopping. It is not unusual for people to look at her from the side with pity and sometimes even fear. This fact inspired Nawal to start “Massira Inclusive” to show the world that the less abled are beautiful too.

On September the 30th, 2018 Massira Inclusive presented a revolutionary fashion show in Colombo, Sri Lanka. The show had a display of differently-abled models walking or rolling (in their wheelchairs) on the catwalk together with the abled ones. Kati & Salwa were part of the show. The event was a huge success and the models were greeted with the announcement: “Next show in Paris, France!”

Paris, where Bauby lived. Fashion, what Bauby used to work in. Makes one wish that he could be there to see a Locked-in syndrome patient just like him on the catwalk. The one thing that Jean-Dominique Bauby and Kati van der Hoeven share besides the LIS is their untamable spirits. And, I am sure that this spirit will be in full display by the gorgeous and bold models in the Massira Inclusive Fashion show Paris!

Henning van der Hoeven

Comments (1)

  1. Arja Pukkinen 24.08.2019 18:40

    Hei, näin sinut tänään Brysselin torilla ja harmittaa etten sanonut mitään.
    Sinulla oli filmirymä mukana, ja ajattelin että en tule häiritsemään.
    Varmaan parempi niin!

    Tunnen Sirpa Lehtosen ja Rhodri Tomaksen.

    Olet kaunis ja rohkea nainen. Kaikkea hyvää tulevaan!

    Arja Pukkinen

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