For this month’s blog post, we have the pleasure and honor of having invited writer, Katie Berger, author of “View from the Floor: Psychogenic non-epileptic seizures: A patient’s perspective” share her experiences with us. Wonderfully, she has now been seizure-free for two years, but I urge you to read her story because in it you will see how this was not an overnight or easy occurrence, and I think it will be inspiring to many and will ring true to many as well. Thank you, Katie, for choosing to share this with us.
Nothing used to piss me off quite like hearing health success stories. Oh, the treatment worked? Your symptoms are gone? Neat. Must be nice. If a talk headed that direction, I headed in the opposite one. While some people saw seizures go away, my doctors and therapists were clear with me: “It’s been eleven years; I don’t think that’s your story.” They couldn’t know for sure, but with each passing year the odds dwindled and my hope shrunk. I had to accept I would never be one of those people.
Until suddenly, I was.
The story of seizures stopping is wild, painful and still unfolding. I’m not sure how to tell that story yet, but I wanted to share an update with you all for one reason – so you would know remission is possible.
For years I lay awake at night wondering if all this work was for nothing. There wasn’t a single person I could point to who had fought PNES for over a decade and emerged seizure free. Who did I think I was? I was so tempted to throw in the towel and stop working towards healing. A few times, I did. I oscillated between fighting for health and accepting my fate, giving myself just as much whiplash as I got from my daily seizures.
Now, two years down the road of remission, this is what I wish I could go back and tell myself and this is what I want you to hear: Nothing was wasted time. Every single therapy appointment, every lifestyle change, every difficult conversation, subpar doctor’s appointment and layer of story unpacked – it all matters. Every single day of work builds another block of trust between your body and your brain, and for me, that trusting relationship had to be in place before the seizures would lay down their guard.
Equally as important as the work you’re doing to get rid of seizures is the work you’re doing to build a life you love, even with seizures. This process of trial, error, and ultimately love for your life, is reframing your health and identity in ways you need today and you’ll need in the future. It was an act of love and a declaration of value to decide I was worthy of a good and full life no matter my seizure count. It busted the myth that my life couldn’t start until seizures stopped, and it laid the groundwork for the life I’m living now. It created a sense of safety, relieved pressure, and placed yet another important building block of trust. It was my way of reassuring my body by saying: “I love you. This life I’m building is a good, safe place for you. You can keep seizing, but if you decide to stop, I have a safe place for us to land.”
Some of the best days of my life happened with PNES, and some of the worst days of my life have happened in remission. If I’m honest, it’s been quite disappointing to learn that remission isn’t a get out of jail free card. I’m so grateful for every day my body stays still, but I share that news gently with you all, because I know all too well that I’m sharing about a sensitive topic.
You all are close to my heart, and I know firsthand the pain of this disorder. If my story hurts and doesn’t help your journey, run in the opposite direction. Your story, the one you live each day, is always the most important one to tend to.
But if you’re on the long road of healing, feeling discouraged and wondering if it’s all for nothing, please let this news be an encouragement. Keep going. I can’t tell you how your road will look, but I can tell you that remission happened way later than I expected, after more gritty, hard work than I knew I was capable of, and right smack dab in the midst of building a life with seizures that I was learning to love.
Keep going. You’re worth it.