When I started doing schoolwork again (in home instruction) after my AVM brain bleed, I worked alongside my class to do a novel study. The novel had been added to the curriculum long before my bleed, and as I have mentioned in other posts, in order to overcome my short-term memory loss, I had to read each chapter twice myself and have my mom read them to me as well while I took notes (which I later typed up as an additional way to review the information before my summative evaluations). The novel was “The Cay” by Theodore Taylor. It takes place in 1942 when a young boy (Phillip) and his mother are trying to flee the war when the boat they are on is torpedoed. Phillip is hit on the head and ends up on a raft with a black man named Timothy and the ship’s cat. The injury leaves Phillip blind and dependent on Timothy, but shortly they arrive at “the cay” where they must fend for themselves.
This was the first novel I read in entirety after my AVM brain bleed.
Fast-forward ten years. I find the sequel “Timothy of the Cay” in a used book store. The story tells of Phillip’s journey to regain his sight, as well as Timothy’s life before meeting Phillip. Phillip is examined by doctors before his surgery and is informed that he has had a brain bleed. (I started shaking…but in a good way!) The doctor then tells him that the bleed was caused by an “artery-vein malformation, or AV-malformation.” I just about went through the roof!! It has to be one of the most ironic and amazing things a book has ever done to me!
Unlike the three months it took me to read the first book, I finished the sequel in four days. When Phillip regains his sight and returns to the Cay, he realizes it is much smaller than Timothy had described. When I look at the novel that took me three months to read, it too is much smaller than I remember it being–a mere 150 pages or so.
Sadly the author passed away a month before my brain bleed, but being able to accidentally stumble across another AVM survivor in an all-so-familiar novel was incredible! Has anyone else found a book (or t.v. show) where the character had an AVM?
I read that book a long time ago even before my brain AVM ruptured back in 2000. It’s a good book. Its different how the boy has his brain injury. He has a concussion from the boat sinking and goes blind from a brain bleed. An AVM is more of stroke like event. It’s where a blood vain builds up pressure and then ruptures. The story does fit a little with how my brain AVM rupture was. I was blind for a month. I’m not any more but it was scary.
Hi! It is crazy to be watching a show or reading a book when you come across a character that has an AVM. I’ve seen it on Grey’s Anatomy and The Long Island Medium and then in a series of books I read, but I’m sorry I can’t remember the name.
Real life is the same… at the point I’d been waiting a month for my first MRI, then another month for the results, then another month for a referral to a neuro in Nottingham, there was a TV news article about a guy waiting 5 weeks for his referral from Nottingham to Sheffield for his gamma knife.
I spend 50 years with a rare condition knowing nothing, then all of a sudden I’ve found it and it’s on the local news! And I never get to watch the local news… I must have been home early or something.
By the way, you can still buy The Cay and Timothy Of The Cay on Amazon.
I think it’s page 56/57 when the doctor describes it as “an artery-vein malformation, or AV-malformation.” Although I thought AVMs are present at birth, Phillip getting hit on the head is definitely what caused the bleed!
16 years following my 15th avm stroke and 14-hour craniotomy, I began to use voice recognition software and it has done wonders for my writing, reading comprehension and ability to work.
I’m a tutor of higher education writing at a large university and in the Washington, DC region and online. Please contact me, at (email removed) or at: www.facebook.com/mattramzzz1971.
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Have you read “A Bomb in the Brain” by Steven Fishel or “My Stroke of Insight” by Jill Taylor Bolte? Both are true and Bolte
is a neuroscientist!
