lydia's story

Written by Anonymous

My story is just another shitty version of all the others, but it goes like this:

I was turning thirty-nine when I had Lydia, our third child. Normal pregnancy, normal birth ... everything was "normal" until she was almost two years old. Then she started dropping, seizing: atonic, tonic-clonic, myoclonic, absence ... all of them came in a flurry with a fever. There had been some earlier seizure activity that I only recognized as seizures after we learned about them. We were admitted to the hospital after an EEG that the technician implied was "very, very bad" (shame on him!) From there she had an MRI, which left us still pondering the "why?" because everything looked "normal."

I remember thinking please don't let it be a brain tumor. I had no idea that epilepsy was not benign, so I was hoping for epilepsy over a brain tumor. Little did I know, a tumor might have been able to be removed. Little did we know, this F-monster—epilepsy—was here to stay.

In the hospital Lydia began taking Depakote, and it stopped her seizures. Ignoring the doctor’s recommendation I did no research and left with my baby who seemed to be doing fine on the Depakote. Our struggle was how to get Lydia to take the sprinkles and make sure it all went down. Within a week, the seizures returned: all atonic seizures at this point. She dropped like a marionette with its strings cut. There was also some suspicious "blinking" that we learned was subclinical activity, but the blinks lasted longer and looked like the start of a drop. We kept increasing the Depakote until we couldn't anymore—her blood levels were too high—so we added Keppra. The Keppra didn't help, but by this point her doctor had said things like, "if we don't get these seizures under control your daughter will regress and lose all of the skills she has now." Lydia was not talking yet—a warning sign that I had attributed to her being the third child. He told us that she would never go to school. He told us that the medications she was headed for had fatal side effects. He told us she likely had Lennox-Gastau syndrome. I started to research ... and lose it.

We decided to get a second opinion. In doing so we learned that our doctor had failed to tell us to bring Lydia for lab work prior to giving her the morning medications, to get a “trough” level. This was why her Depakote blood levels had kept appearing to be too high. We fired Lydia’s first doctor who was quite young, clearly did not have children, had a poor bedside manner and was not an epileptologist.

Increasing Lydia’s Depakote and removing the Keppra helped while we waited for the new epileptologist to start at our local hospital. Though he was also young, he had a daughter exactly Lydia's age, was very empathic and kind and was far more knowledgeable about epilepsy than the physician we had fired. Still, it took three years of trial and error, allergic reactions and catatonia to get adequate control of Lydia’s seizures, which eventually returned after each drug increase and each "honeymoon period." We had to make a very difficult decision to try Felbatol, which came with so many warnings including a waiver that said we understood the fatal side effects and would not sue the drug company if Lydia died. Meanwhile, Lydia was not losing skills, but she was not progressing much either. The hundreds of thousands of mini seizures, which looked like the start of a grand mal or myoclonic seizure, though lasted only seconds—not even long enough to knock her down—were wreaking havoc on her brain.

Lydia has idiopathic generalized epilepsy ... possibly—though without certainty—Doose syndrome. The majority of her seizures are myoclonic or astatic, so her diagnosis is Myoclonic Astatic Epilepsy (MAE). We are five years into the nightmare, which compared to others' journeys, sounds like a cakewalk. But I have learned that it doesn't work that way. Epilepsy spares no one, really, not even the ones whose seizures miraculously, spontaneously just stop. Lydia will likely not be one of those cases. Her EEG is a mess. She is developmentally disabled and I find myself whispering the word "retarded" when I can see that the new, politically correct designation doesn't mean anything to my parents generation ... and even to some well meaning contemporaries who want it to not really be "that bad."

I would not trade in Lydia for a new Lydia, nor would I refuse having another child if I had been warned this might be possible. But I live on a cocktail of antidepressants and anti anxiety medication. I used to be pro-therapy, anti-drugs until I had my first panic attack five years ago. I have only three, close pre-epilepsy friends who remain after a mass exodus of other friends I later realized I made all the effort to maintain. Our families both live thousands of miles away and are not very supportive. They want to make things better and don't understand that listening and validating are more important than trying to change the subject or focus on the positive. My two oldest children keep me from lingering in dark places for too long. I am a busy stay-at-home mama.

Lydia’s future depends on the discovery of new drugs, new therapies—a cure. It is unlikely that her seizures will relent. This is my story, Lydia’s story. In the scheme of that which is epilepsy, I realize that we are actually the lucky ones. No matter. It still sucks.

photo by Michael Kolster


  1. Powerful and true. Especially about family: "They want to make things better and don't understand that listening and validating are more important than trying to change the subject or focus on the positive." Focusing on the positive usually just makes it sounds like they're telling me that our problems really aren't that bad.

    How can I share my story?

  2. dear amber,
    you can share your story by emailing it to me at christy.shake@gmail.com
    you can also "friend" me if you are on facebook. also, if you do write something, please make it about 800 words or about 1 page and include a title and a photo if you like. i reserve the right to edit it. thank you for your thoughtful comments!

  3. Lydia's mom, we are only 5 months in. I have been a researching nut and I haven't uttered a word on any of he sites. I hardly could read others speak of this BUT yours is so identical and YOUR feelings are what are in me down to the panic attacks which I previously thought were in peoples head. I am not ready to tell his story as I am still a mess emotionally. It would come out like vomit I am sure. I just wanted you to know--your words gave me a pause knowing my feelings are not crazy--others have felt exactly what I am going through. Christy thanks for this page. Yours is the only one so far I come back to read as it touches my heart. I thought I was strong until this thing came about. And mine was an honors student, 3.7 GPA in senior year, starting varsity player FB and basketball and in 2 blinks he is know in special services Senior Year. What the hell??? Blessings to you all. Please keep sharing until some of us get our voice back and catch our breath!!

  4. Thank you for sharing more stories. I'm learning to be a better advocate after living in denial for more than a decade. At the same time, though, i'm unemployed and have experienced workplace and hiring discrimination on account of having epilepsy.

    This reluctance is selfish and ridiculous, i realize. I'm eager for the day i can speak up in every public forum and every way possible for everyone fighting this vicious, merciless, monster .

    I'm as fortunate as it gets in terms of having a voice and exhibiting "normal" intelligence. I owe it to the Calvins and Lydias of the world to take up arms and shout our stories for the rooftops.

    Please accept my apologies from the bottom of my heart for not being there quite yet. I know time is of the essence.

    And to Anonymous, yes, shame on that EEG tech. You moms are truly heroic. My admiration for you could stretch to the moon and back and then some.

  5. amie, consider yourself a dragon mom, okay? xo

  6. dear ajax,
    no apologies, please!!! everyone has their own lives, own speeds, own challenges, own ways of coping. you can advocate simply by sharing other stories like these until you are ready to tell your own.
    take care,

  7. Amie - your words "I am not ready to tell his story" are so powerful. Christy has provided something for me that I cannot explain - a place where the thoughts and feelings that run rampant in my mind are echoed, and silently, I read as she takes some of my darkest, most frightening feelings and verbalizes them and makes them clear and coherent to me. I, too, am not ready to tell "her" story. I think "she" is in a better place than "she" was a few months ago and we are seeing improvements, but the future is still extremely uncertain and I can't even bring myself to talk about it. And though all of our situations and outcomes are different, the fears and panic attacks and depression are the same. Thank you all for sharing your story, and know that even if it feels like no one is reading, we are. Silent, but together.

  8. To Lydia's Mom, whoever you are, thank you for sharing your story. My daughter, also named Lidia, started having seizures seven months ago at age 15. She was developmentally delayed to begin with and has now has regressed even further as a result of the seizures and/or the meds. But she can still talk, can still function to some extent -- some days more than others -- still go to school. I read stories like Christy's and Calvin's and think, "Stop feeling so sorry for yourself, Lisa; we're the lucky ones." Now I read that you tell yourself the same thing.

    I think we all need be willing to feel sorry for ourselves and our children, and to shout to the world that epilepsy sucks for everyone involved. This isn't a misery competition. It sucks for "Ajax," the intellectually normal woman who feels she can't get a job because of her epilepsy; it sucks for my Lidia, who is regressing after fighting so hard for years to read and write and ride a bike, and remembers what it was like before "these stupid seizures," as she often says; it sucks for Calvin who struggles to walk, and for Christy and Mike who struggle to hold him up; and it suck for your Lydia, who is probably too young to remember life without epilepsy.

    If there's anything this blog teaches me each time I read it, it's that we are all in this together.