A few days before her eighteenth birthday, Sun-Mi wakes up with a vague feeling; something is wrong, but she can't put her finger on what it is. What she doesn't realize at the time is that her life was about to be turned upside down completely within the next few hours. She suffers a brainstem infarction and becomes paralyzed: she can no longer move, she can no longer speak, she no longer has any means of communication… After a few torturous days it becomes clear that she suffers from locked-in syndrome. This is the beginning of the biggest battle of her life: with years of therapy, she fights for a dignified and optimistic existence despite everything.
“Gevangen in mijn binnenwereld" is the shocking, poignant and yet very positive life story of a young woman who, despite her illness, demands a fulfilled life for herself and everyone around her, and in which Sun-Mi shows that even with physical limitations you can make dreams come true.
Review by Mereltje:
Sun-Mi Venema describes her experiences with Locked in syndrome in an impressive way in her Dutch book Gevangen in mijn binnenwereld.
This book was written by Sun-Mi Venema, a patient with Locked in Syndrome. This is a neurological disorder, in which the patient is unable or hardly able to move. They are fully conscious, but unable to respond or speak. They are, as it were, locked into their own bodies.
A short excerpt about her first experience with this condition: “I tried to get up again, but I couldn't. When I tried to call for help, no sound came out of my mouth. I couldn't talk or move anymore. I kept thinking: what is happening to me? What is this? I panicked but couldn't do anything. I had no sense of time that night, but I must have been lying like this for hours. The next morning my mother and my youngest sister found me.”
The writer tells about her life, how she grew up as an adopted child in Zaandam. She lives the ordinary life of a teenager who is studying, has side jobs and is going out, until just before her 18th birthday, when everything goes wrong-. She ends up completely paralyzed by a brainstem infarction, she is only able to move her eyes; that is her only means of communication. She is told that she suffers from Locked in Syndrome and embarks on the toughest fight of her life. Daily therapies have to lead her back to a dignified existence. Only after years of rehabilitation, she is able to swallow by herself again, to move her head slightly and able to make use of her left arm. This provides new possibilities for communication by means of a speech computer.
My opinion about her book Gevangen in mijn binnenwereld: I thought it was a compelling book, it is a gripping and disconcerting life story, in which the author shows that you can achieve dreams, even if you are very limited. The story is told through the eyes of the author and is written in a very accessible way. Gevangen in mijn binnenwereld is full of feelings and experiences, from which others who in any way have to do with this syndrome can find insight, support and stimulation.