Lost the battle but not the war.

silhouette of mountains
Photo by Simon Matzinger on Pexels.com

Tomorrow is a new day. Repeat. Tomorrow is a new day.

I sit down to write tonight, after my kiddos are sleeping soundly and my house is tidied up, ready to let it all go. I wish I could stand on the summit of a mountain peak and just scream and ugly cry until nothing is left.

I am scared that I’m going to forget my life. I’m afraid to fall asleep for fear of not waking up.

This sounds crazy, I know. Forget my life? Fall asleep and not wake up? What am I talking about?? How could I forget my life? I’m a healthy 30 year old woman, why would I not wake up? I have two amazing children and a wonderful husband all of which fill my life with so more love than I ever though possible. I live in a beautiful home, in a state with breathtaking mountain views; one of which I am lucky enough to see on my ride home from work. I would never forget this incredibly blessed life.

Yet, I managed to forget that I had a seizure last night. I got up this morning, did some work, grabbed my keys,  drove 15 minutes from my house to run an errand, and when my husband called to say he was coming home to pick me up so we could go to lunch together imagine his surprise when I said, “Oh! I’ll just meet you. I’m literally 5 minutes from there”. Imagine my surprise when he said, “WHAT?! You drove today?!? You had a seizure right before bed last night. And we agreed weeks ago that you weren’t going to drive. YOU initiated that conversation Amanda”.

I forgot. I forgot it all. And so then I went to lunch, insisted that I felt fine because I did. I honestly felt perfectly normal. I was shocked that I had a seizure the night before, usually I feel like a train wreck. When we went to leave I said, “Well, I’m just gonna run to the grocery store (less than 5 minutes away, and on my way home) since I’m out anyway. I have literally 3 things to grab real quick”. After asking me several times how I felt, my husband reluctantly agreed to let me drive to the grocery store. I stopped at the Starbucks in the grocery to grab a decaf Americano and chatted with a gentleman in line that had very obvious tremors in both arms and hands, ordered my drink and while I was waiting I got nauseous and then my chest started tingling. I called my husband, “How are you?” I asked.

“I’m fine… kinda tired and ready to take a nap before the kids get back from the park with the nanny”.

(I started to think that I’d be fine, that I wasn’t going to have a seizure and I should just say “OK” and hang up).

“Amanda,” he said, “How are you?”

“I need you to come get me,” I blurted out. “I don’t feel good,” and I quickly told him where I was. “I’m going to go sit in the car”.  My hands were shaking, my heart was racing and I had full body tingling. I was not fine. I hurried out of the grocery store and calmly got into my car, put on my seatbelt, and tried to relax. The red-haired woman putting her groceries into her green truck kept slamming the truck doors. Why did she have 4 doors open on the truck all at once? Why was everyone suddenly slamming their car doors?!? That was all I could hear and my world started fading away…

I don’t know how long I was out of it. But, like every time, when I realized what had happened I got super emotional. So many thoughts flooded my mind.  I could’ve been driving. I could’ve been alone with the kids. What if I hadn’t made it to the car? “Hold it together,” I kept telling myself, “You are stronger than this”.  And yet I am not. Not today.

My husband’s worried expression jostled me out of my car and into his. I couldn’t help but cry. Mostly out of frustration, but partly out of fear. I am terrified that I am going to forget my life.

In school I always had an amazing memory. I could remember my locker combinations, my credit card numbers, my bank routing and account numbers. It was impressive the amount of numbers I could keep locked away in my mind. And then out of the blue, sometime during college, I stared forgetting these things. I remember laughing with the front desk woman in the registrars office after she told me, “that’s not enough numbers” and I realized that I had given her my bank account number instead of my social security number like she had asked for. I would forget my locker combination at work and have to write in down in my planner. I started forgetting my log in and password information at the hospital; so I would put them into the Notes app on my phone. I have forgotten numerous passwords and even the combination to our safe. Instead of a steel trap, my mind is more akin to a wet paper bag.

I feel like I should say that forgetting that I had a seizure and then driving is not like me. I am not one to endanger anyone, or to take someone’s life into my own hands by driving recklessly. I was a trauma nurse. I worked to save people’s lives, not endanger them! I told my husband that I wasnt going to drive anymore. I don’t know what happened today. I wish I did.

Here I sit tonight, afraid to fall asleep because my seizures are getting worse and not better, even on medication.   This increases my risk of SUDEP or sudden unexpected death in epilepsy patients. I genuinely feel like I will die in my sleep. My neurologist has actually said the words “Brain surgery” to me. Surgery on my brain?!? A 5-7 day stay in the hospital hooked up to continuous EEG to see exactly where my seizures are occurring, and then removing part of my brain.

Tonight I can’t get over it. Tonight I just cry and pray that eventually we will find the right combination of medications.

Tomorrow is a new day.

5 thoughts on “Lost the battle but not the war.

  1. My dear new friend, I hear your deep anxiety in all of this. My thoughts are with you tonight.

    This was certainly scary, and I know we are capable of projecting even scarier scenarios onto the future. But even though we just met online and don’t know each other personally, I am confident enough to say that worst-case are never destined. Instead, there are a lot of tangible reasons to hold out hope for you. Things can get better. Absolutely. And yes, there are many new days.

    My most immediate hope for you is good, restful sleep. So I’m sending love and light in that direction. You’re not alone.

    Like

    1. Thank you for your kind words. My parents first struggled with a missed diagnosis at a young age and felt so much guilt; but the truth is that epilepsy looks so different and we had no family history of epilepsy. I didn’t start having tonic clonic seizures until much later.

      Like

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