My Mom recently published a book entitled Seize The Seizures; I edited it. Below is an excerpt from my foreword to it; you can preview more of the book on Amazon.
I have this recurring dream about my Mom–-we are in some unknown European city. I rap on the door of a small flat. I hear shuffling sounds as she peers from behind a small opening in the door. She looks startled, like I have just awoken her out of some deep slumber and like the light hurts her eyes...she doesn't say much, but her eyes look impossibly plaintive. "I wish you could be here more." I wake up, crying. It's just a dream, but this is what you feel like when someone you love is hurting. There is a lot of guilt, no matter what you do…and what you do is never enough.
People expect you to wear your grief in plain sight for all to see, as though the only way to express authentic pain is to cover yourself in ashes and wear sack cloth…as though there is something you are supposed to be doing. I am not sure how much doing is going on, but I do know a lot of feeling is. I don't like telling people my Mom is sick because it makes what I feel is a very private thing public. To talk about it feels diminishing and banal. How can pain be banal? I cannot tell you how many times people ask me how she is doing, almost waiting for me to respond "Fine," so they can get on with the conversation. I sometimes don't even bother telling them that she is very far from fine, so I just tell the truth. She is hanging in there.
What a lot of people won't tell you, even though it is such a ubiquitous trope, is how hard it is to talk to someone in a coma. Imagine seeing your Mom lying in a bed, with all manner of tubes sticking out of her like some alien arthropod has nested atop, her body wracked by the spasmic echoes of seizures happening beneath the surface of her heavily sedated brain. I tried to talk to her, but the words were not really coming out. All I could do was look at her and hold her hand. I know you will understand that even coming to the hospital to see her like this was crushing.
This book is the story of a really good woman who had a lot of really bad things happen to her, yet she is sharing her story. It’s not a story about epilepsy but something a lot bigger than that. A guy in San Francisco once told me, “See you on the flipside, mama.” My Mom’s been on the flipside and she wants to tell you about it. To me, it's the ultimate gift of a mother to her daughter and a testament to who my Mother is–-a brilliant writer and a firecracker of a woman (even by Bulgarian woman standards!), a spirit of immense strength, and a wicked sense of humor (I like to think I get that from her). I like to think, rather arrogantly, that only I could have edited this book because I get my Mom so well and am connected to her on some subconscious, supra and super-natural level. I feel like the translator of a language of two speakers, one that I hope will not be deemed endangered any time soon. Even the title of the book works on so two levels—I know she can explain it a little better to you… But seizing the seizures is about grasping them, taking a hold of them, hoping to understand them a little better in hopes that will cease to seize over her life.
What I find most authentic about it is that it is so refreshingly pathos-free. My Mom doesn’t want you, the reader, to go “Aww,” by the time you finish it. There is no overdramatization meant to pluck at your heart strings and appeal to the Oprah set–-my Mom really is far too fun and funny for those sort of shenanigans. She keeps it real, I am sure you will see. And yes, there is a lot of sad too. Ultimately, the book is a strange little microcosm of what seizures are–-electrical storms–-it roils and stirs and moves and severs and connects and fires and rattles…it unsettles and it calms…just like life.