This is probably the first book I ever read that has this special meaning to me. I feel honoured to be reviewing it and delighted by the internet for making it able to me to be found by Terry Tracy, author of "A Great Place for a Seizure".
And why is this so important to me, you ask? Because I have epilepsy. Not many people know, I don't really make it a secret, but's not important. I found out I had it when I was 12 going on 13, when I had my two first seizures in a month's time. After that, I had several ENFURIATING doctors who'd tell me "you're epiletic, you'll never be able to do anything on your own, you can't sleep alone or walk the streets without someone with you. You'll take medicines for the rest of your life and that's what's going to happen" and all that WITHOUT one.single.exam. I had a major temper already, so you can guess what happened.
I have a minor, very light form of the disease, I get seizures when I'm off my meds and deeply stressed, so sleeping 2 - 3 hours a night, for two days in a row, for example, triggers it, but only when someone wakes me up. After I started taking my medicine, I didn't get any more seizures. My doctor tried to take me off my meds, I had one seizure and went back. It's been 8 years and we're trying to cut off my meds again, technically I take a baby's dosage, but it can damage my liver, my ability to have babies and makes me sleepy (like I'm not sleepy enough without it) so we're trying. And I'm just trying to avoid stress because of that.
I only had a seizure in front of my family and my boyfriend, but that was enough. When people hear I take (or used to take) a "permanent" medicine or that I had seizures, they would stare. And that stare was full of fear or pity. When I had my "last" seizure my boyfriend was with me, but he had no idea, I was off my meds for 6 months and I never told him... He tried to hold my tongue (who started that freaking rumour anyway?) and I bit his finger. He still has the scar. He's freaked off that I'm off my meds, he keeps staring and expecting me to seizure (we've been together for 9 years, yes). It's frustrating.
I take the book I'm reading with me everywhere. And the reactions of other people to this particular one were very interesting: some people would ask me what a "seizure" is (not everyone is fluent here, most people only speak portuguese) and then stare at me, like "that's no reading matterial", this one girl who's fluent, stared at the book, read the back cover and said "how awful, poor girl". I keep wanting to say "poor girl, poor girl but that could be me! I was lucky to have a light version, but that IS me!". And, besides, how is that not good reading matterial? Is torture, world war I, II or whatever good reading matterial? And then why Anne Frank is a classic but a beautiful and wonderful book about Epilepsy isn't?
So, in a much smaller scale, I understand Mischa (the main character). Mischa feels it much stronger, because she does have the case where meds don't really work and she gets seizures every now and then. I don't, I never felt the look of strangers after a seizure - except for one of my neighbours who my mom yelled to come when I had a seizure once, I never had to deal with leaving the house and having a seizure wherever I am, that was never a concern. But it scares a person either way.
And why is this so important to me, you ask? Because I have epilepsy. Not many people know, I don't really make it a secret, but's not important. I found out I had it when I was 12 going on 13, when I had my two first seizures in a month's time. After that, I had several ENFURIATING doctors who'd tell me "you're epiletic, you'll never be able to do anything on your own, you can't sleep alone or walk the streets without someone with you. You'll take medicines for the rest of your life and that's what's going to happen" and all that WITHOUT one.single.exam. I had a major temper already, so you can guess what happened.
I have a minor, very light form of the disease, I get seizures when I'm off my meds and deeply stressed, so sleeping 2 - 3 hours a night, for two days in a row, for example, triggers it, but only when someone wakes me up. After I started taking my medicine, I didn't get any more seizures. My doctor tried to take me off my meds, I had one seizure and went back. It's been 8 years and we're trying to cut off my meds again, technically I take a baby's dosage, but it can damage my liver, my ability to have babies and makes me sleepy (like I'm not sleepy enough without it) so we're trying. And I'm just trying to avoid stress because of that.
I only had a seizure in front of my family and my boyfriend, but that was enough. When people hear I take (or used to take) a "permanent" medicine or that I had seizures, they would stare. And that stare was full of fear or pity. When I had my "last" seizure my boyfriend was with me, but he had no idea, I was off my meds for 6 months and I never told him... He tried to hold my tongue (who started that freaking rumour anyway?) and I bit his finger. He still has the scar. He's freaked off that I'm off my meds, he keeps staring and expecting me to seizure (we've been together for 9 years, yes). It's frustrating.
I take the book I'm reading with me everywhere. And the reactions of other people to this particular one were very interesting: some people would ask me what a "seizure" is (not everyone is fluent here, most people only speak portuguese) and then stare at me, like "that's no reading matterial", this one girl who's fluent, stared at the book, read the back cover and said "how awful, poor girl". I keep wanting to say "poor girl, poor girl but that could be me! I was lucky to have a light version, but that IS me!". And, besides, how is that not good reading matterial? Is torture, world war I, II or whatever good reading matterial? And then why Anne Frank is a classic but a beautiful and wonderful book about Epilepsy isn't?
Enough of me - to the book. Mischa finds out she has epilepsy when she's 14. She lives her life normally, or at least as much as she can, that way, she's the daughter of a Chilean aristocrat and an american professor of Russian literature, living in Chile for her childhood and moving to the US when she is almost a teen.
She lives her life through the seizures, counting them each time she moves through a step of her life, like high school, college, first job, etc. I love Mischa's temper, her witty jokes, her way of saying she HAS epilepsy but she ISN`T epiletic, because it is something she has, not who she is. It's a condition, a disease, and she insists she is not disabled, she is not handicapped, she can live and work and do her own stuff her way, because she's just a normal girl who happens to have seizures.
Terry's style is cute and funny, while sarcastic. Like Mischa says "I'm being sarcastic/ironic, so it means my brain is coming back" after a seizure, Terry keeps us laughing, smiling and letting some "aww" and "oh"s escape every now and then. I love the way she portraits seizures, the aura, everything - I never had an aura, since I'm always asleep when I have a seizure, and those seemed like, well, the only good part of it, so that's pretty sad, in a way.
Mischa's friend Sophie is amazing, aswell. She is the perfect sidekick and shows that not everyone is suited to be a friend of someone with a "condition" because people get touchy, people get angry, it's hard to tell them some things and Sophie can do it, Mischa listens to Sophie because they know and trust eachother. And I can't get enough of Hector. He's cute, adorable and oh so british.
This book should be translated to every single language in the world and given in schools, distributed in clinics, handed around, so that people could understand things. Understand conditions and disabilities, see how it's life with a condition instead of seeing people on TV who can't get up in the morning because of their issues, illnesses or conditions, so they can see that some people are actually functional with their diseases and they can very well be a normal part of the society.
Thank you Terry. Thank you, for writing this book.
Terry's style is cute and funny, while sarcastic. Like Mischa says "I'm being sarcastic/ironic, so it means my brain is coming back" after a seizure, Terry keeps us laughing, smiling and letting some "aww" and "oh"s escape every now and then. I love the way she portraits seizures, the aura, everything - I never had an aura, since I'm always asleep when I have a seizure, and those seemed like, well, the only good part of it, so that's pretty sad, in a way.
Mischa's friend Sophie is amazing, aswell. She is the perfect sidekick and shows that not everyone is suited to be a friend of someone with a "condition" because people get touchy, people get angry, it's hard to tell them some things and Sophie can do it, Mischa listens to Sophie because they know and trust eachother. And I can't get enough of Hector. He's cute, adorable and oh so british.
This book should be translated to every single language in the world and given in schools, distributed in clinics, handed around, so that people could understand things. Understand conditions and disabilities, see how it's life with a condition instead of seeing people on TV who can't get up in the morning because of their issues, illnesses or conditions, so they can see that some people are actually functional with their diseases and they can very well be a normal part of the society.
Thank you Terry. Thank you, for writing this book.
