There are few words to describe David B.'s graphic novel Epileptic, which is, I guess, apt for a graphic novel. Terrifying, brutal, poignant, and dark are a few. I've had the book for many years and only take it down off the shelf every now and then. I did so last night and sat outside on my back stoop as the sun went down through the palms and some godforsaken crows screamed in the distance. While not godforsaken, I felt depleted and diminished by Sophie's seizures, the one in the morning and the three at the ballpark and the one at dinner. The seventeen years of them, like clockwork, imposing a rhythm on our lives.
Like the characters in Epileptic, our family seems to be trudging, still, not begrudging, still, up a dark mountain, following Sophie as she makes her arduous way.
***Click on the photos to read clearly.
When I read you, I feel the bleeding heart of Mary, the calm serene smile of Buddha, the everlasting light through the great, ancient oaks.
ReplyDeleteWhen I see pictures of Sophie, I feel the same things.
It is as if the complete brain-body-chaos of the seizures plunges you into calm when they are gone or at least, stillness.
I love you, Elizabeth. I say that over and over again and I mean it every time.
i don't really have the words, but just want to say i'm here, bearing witness, sending love.
ReplyDeleteAs always, I wish so much more for Sophie than the constant seizures. The same wish is for you and the family to continue to work your way through them, looking for bright spots along the way.
ReplyDeleteBest,
Bonnie
I marvel at your strength and will burn this post into my sub conscious so that when I go into self pity at stupid, stupid things that are triggered by what is most definitely of the past - not my todays or tomorrows - I will remember what real difficulty is. My heart is full for what you
ReplyDeleteso lovingly endure.
Elizabeth, you have the qualities and the strength to not only experience and attend to your children's needs, but the courage to lay out the pieces and share them with us. I send you blessings. What you show is heroic courage. You and your husband, and children are living heroic lives, every day, every minute.
ReplyDeleteThe rest of us can only feel augmented to read about it.
... took up residence and didn't seek our permission ...
ReplyDeleteI cannot imagine anything more frustrating and debilitating than what you do and how you do it ... but a clue is in the comments left here and the love in them. You are deeply loved and intensely cared about.
What an intriguing book; the illustrations are evocative and powerful. Do you feel that the book gives a voice to your experiences & emotions, or is it uniquely his? It looks like a groundbreaking piece of work. Thank you for sharing it here.
ReplyDeleteI'm so sorry about how difficult Sophie's days are, and how hard it is for all of you to watch her suffer. That is such a hard thing, to bear witness to the suffering of one we love, without the ability to stop the suffering. It is a practice, isn't it? Love, bearing-with, more love and bearing-with. I'm sending love and {{{HUGS}}} to you.
I read this yesterday, and it stuck with me all day. I love the way you wrote "trudging, still, not begrudging, still, up a dark mountain, following Sophie as she makes her arduous way." What a perfectly rendered description of your situation. As for the situation itself, I also feel capable only of bearing witness and sending love. I hear you.
ReplyDeleteI hope you are writing your story, somewhere. Book length.
This brought back so many memories. There is no way to explain the disruption and/or waiting for disruption to occur, but this post and that graphic novel come as close as is possible, I think. On you go up that hill, but obviously you have a lot of love out here to catch you when/if you fall. I hope you use it, sink into it, wrap it around you.It's here in abundance.
ReplyDeleteThat book scares the bejesus out of me! Perhaps because it is so confronting. Ryley has 20-30 seizures a day. Not big ones. But they are always there. Every day. Taking so much from him. We can only be there for him. I hate that you all have to go through this.
ReplyDeleteI wish that you could choose to take Sophie's seizures off the shelf from time to time like this book.
ReplyDeleteSending love and light.