Kevin’s been trying to get me to buy fewer books and be a better customer of our library. It’s been a good stretch for me but failed miserably with this book. I’ll be buying it.
I’ve read this book in small pieces. Often times so overwhelmed that I had to put it down. Other times I’ve just had to keep reading even when I should be doing something else. I finished it with so many tears flowing it was difficult to read the words on the page.
The book is about one man’s journey with epilepsy. And really in saying that it’s also about how epilepsy figured into the stories of those whose lives he touched. He had me tearing up at the dedication. “For Dr. Allan Naarden, who saved me”. The next page was a quote from Maya Angelou. “You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it”.
I read this paragraph on page 7 to Kevin.
“I knew that epilepsy is misunderstood because so many of us with the condition stay silent, fearful of the stigma that still attaches to the word. We distrust our own bodies and grapple with a terror of losing control of our brains. Then there is the psychosocial damage. Because of the fear seizures engender, people with epilepsy have been subjected frequently to discrimination. A look at online message boards shows postings from women who were told they would be disowned if they married an epileptic boyfriend, others fired from jobs or shunned by friends after a seizure. Until 1956, eighteen states allowed for forced sterilization of epileptic people, and marrying them was illegal in seventeen; Missouri kept its marriage ban on the books until 1980.”
We were in the car when I read it to him. Then I just put the book on my lap and looked out the window for a bit.
The book details so much. For example trials with doctors, fear, medication side effects, physical pain caused by seizures, humor necessary to move forward, friendship, perseverance, meanness, and injustice.
I took the picture above while waiting for Grace to wake up from VNS surgery. A surgery she had because we are trying to lessen the impacts of epilepsy. A surgery that required two separate pokes for the IV because the first one didn’t go right. A surgery that required us to challenge the system because they told us they couldn’t do what her doctor had told us they could. A surgery that kept our girl out of school for a day, took us away from Graham and introduced chances for infection.
I often wonder how Grace feels after a seizure. She can’t tell me. There are days that I hate that pink helmet on her beautiful head-but I also know that she needs that protection. Even when I’m not aware of it I worry about how she is treated. Is she respected? Is she valued? I wonder if she objects to never being able to be alone.
When she’s actively seizing and all I can do is hold her, keep her safe, tell her I’m right with her and that she’ll be ok is that the right thing to say? Can she even hear me?
In a way, the book has caused me to grieve her diagnosis again. Epilepsy is something so many people have brushed off. People have told us that we just need to be confident that she will grow out of it. It’s not seen as life-threatening. It’s not seen as dangerous. But it is both of those things. There is this invisible weight we carry always on guard for a seizure never sure when it will happen. I can remember praying for her to not have a seizure during her dance recitals. To not have seizures that scared her classmates and made them afraid to be around her. I can remember times I have been hanging over the bathtub trying to hold onto her so she won’t hit the side of the tub while seizing or drown in the bathwater. She’s 13 years old – I never, ever leave her alone in the tub.
We are powerless against Grace’s brain. We can try to effect it – and we do try, but ultimately it’s up to us to live a life in spite of it. The book touches on that too.
Oh, and the parts about his mom. Ugh. The helplessness, the spine, the fight, the worry, the second-guessing. I get all of that.
I’d encourage you all to read the book. If you do, I’d love to hear what you think.
It’s ok to talk about epilepsy. Maybe we need to do our part to talk about it more.