I'm frustrated. This is long, but stick with me. I own up front that this is mostly rant.
In January of 2009 I got a phone call that has forever changed my life.
"Jen is having some kind of seizure. They're taking her to the hospital by ambulance. Get here."
Two months later I choked back tears as we sat in St. Louis Children's Hospital at Washington University. I was handed a business card, and I looked up and asked the nurse practitioner, "Why are we in the epilepsy center?" She looked at us and said, "Because your daughter has epilepsy." Light faded to dark. I could feel hope disappear. Flashes of the life we'd hoped for her ran through my head. The first image that came to my mind was from the third grade, as I watched a girl in the 4th grade laid out on the gym floor at Cuba Elementary, flopping like a fish out of water. That had been my only exposure to epilepsy. I will never get that image out of my mind. I remember her hobbling around school on crutches because she couldn't walk well. I knew she was in the "special" class. In 1980 there was a taboo surrounding epilepsy and I was so afraid that there still was.
Not my daughter.
This can't be real. I kept hoping for the "Because your daughter has epilepsy, but..." from the nurse practitioner but it never came. That appointment was followed by God only knows how many more, so many tests, so many disappointing results, and a total lack of answers as to why this was happening.
Then the theologian in me kicked in and I started an eight year theodicy struggle. In the scriptures, most of the references to demonic possession were actually cases of undiagnosed epilepsy. Those stories talk about the "demon" throwing kids into fires to try to kill them, or God only knows what else. How could God let this happen? Why her? Why now? She's so young and this is going to change her world forever. She'll never drive a car. She'll never live independently. What about brain damage? What about memory loss? Will she ever be able to have kids? What's this going to mean for any future career?
Anti-seizure medications by the handful. Side effects I don't even want to think about. Mood changes. Weight gain. Hair that fell out in clumps. This stuff was all happening to our baby girl and we were powerless to stop it.
So we started reading. We read everything we could find on epilepsy. Medical journals. Chats. Forums. Websites. Anything that might offer some hope as to a way to control this disease, because there is no cure, we read and re-read, hoping for some connection. Yet every possible connection, every new hope, everything we tried...we'd wait...then the seizures would come again.
Picture with me for just a minute. I'm standing in the kitchen cooking breakfast one morning and she walks through the room with that tell tale stare. I knew what was going to happen, so my first move was to get her on the couch. That way, when the seizure hit, at least she wouldn't fall and hurt herself. The next thing I see is my 18 year old daughter standing in front of me crying, with blood running down her face and off of her elbows. I cleaned blood out of her carpet for an hour and a half that morning. Every time I thought I had it out, more blood would come to the top.
Then there was the time she seized and fell into the entertainment center. I grabbed her by the feet and pulled her out into the middle of the floor so that she would stop beating her head against the shelves on the bookcase. Or the time she seized in the shower and it was just she and I there. I pulled her out of the shower so she wouldn't drown, and there was my daughter, on the floor, flopping like a fish out of water...the exact same image I had in my head from 1980...playing in front of me in their bathroom.
Those are just some of the times this demon has disrupted her life. Her mother could tell countless other horror stories.
I'm saying all of that to say this...we as a society are so quick to jump into someone else's world and offer advice.
Don't. It's not helpful. Don't offer any cliche's. Don't make a big deal of a seizure, but don't ignore it either. Don't say "Well, it could be worse." Absolutely do not say, "You just have to have faith that she is going to be healed." It's not that simple. Don't say, "At least it's not..." This one is less than helpful, "If I were you, I'd..." Why? Because you're not me...or her...
See, we know all of those things. We know it could be worse. We know that there are folks who struggle with things way worse than epilepsy. We know what other folks have done and tried to treat this demon of a disease. We've read just about everything that has been written on every possible treatment. Don't argue politics about what's legal and what's not. And for the love of God don't argue theology with me.
What you can do instead, and that might actually be helpful, is encourage. Remind those who are struggling that they are loved and supported. Offer to help if you know it's been a rough day. Talk to them about it, not about them to someone else. Let us be angry and/or frustrated. Be there. That's all you need to do. That's all we ask. Be an ear...be a calm presence...be a source of hope...
I'm writing this, choking back tears, as we start yet one more treatment today to hopefully find her triggers. If we can just find the triggers, we can begin to control this damnable disease. As we do that, please be encouraging. That's all we have left.
One last thing, unless you've been where we are (and I insert anyone here who is struggling with anything) do not offer me advice.