At the end of November I had a number of tests to look for, yet again, an answer to this illness. The first week of December I received a call that I had longed for for almost 8 years. Although I never considered how I would react if I was finally given an answer, I just needed to know, to finally have an answer. I just never expected the answer that was coming. The nurse from my neurologist’s office told me my EEG was severely abnormal and I needed to be put on anti seizure meds immediately. What??? Seizures!??! She was talking so fast my brain couldn’t comprehend what she was telling me. I stammered…but….but….I don’t have seizures!!! Having been put on so many meds, and not understanding her, I refused the meds until I could meet with the neurologist in person and have everything thoroughly explained. Another week went by before I could see her. My husband, Jeff, took the day off to go in with me. As we sat in the waiting room, we had a discussion about his time off of work until the end of the year. He told me he was taking the upcoming Friday off but I couldn’t remember why. He just looked at me with an expression that seemed to say, “Really?!” Apparently we’d had a discussion about having family pictures taken by a friend that day and I don’t remember much of that discussion. Pretty soon we were going to have an explanation for that. As we waited in the exam room for her to come in, I was a nervous wreck. So scared of what she was going to say. She began explaining to us what my severely abnormal EEG meant, told me she was shocked, given my symptoms, no one had ordered one before. Then she said when I had my first exam and was telling her my symptoms, she immediately thought it was epilepsy. Thankfully she didn’t share that with me that day. As she explained what the seizures would look like, not necessarily grand mal, but more like a “going away”. That I look present, I may even nod or say uh-huh, but that I’m not really there. That I may have “time warps” when I lose time but can’t understand why. That after these I would have confusion and memory loss. As she explaining this, I’m thinking….screaming in my head…”BUT I’M NOT HAVING THAT!!!” Then I hear my husband say that he and my girls had noticed these behaviors in me (confusion and memory loss…yep!). Seeming to be out of it, not present. He told the neurologist he thought I was just ignoring him. That made me laugh….later. That made me so very…I’m not sure how to explain it. Sad, distraught, scared, and even guilty.
So we talked about medications and she explained, because of the severely abnormal EEG, I need to be on a higher than normal dose. It’s taken 7 weeks to get me to a full dose and then I have another two weeks before I see her again.
Jeff and I walked out, got in the car, and he started to drive away. I made him pull over because I knew I was going to have a “little” breakdown. Little….Hah! He reassured me it was going to be ok, that we would deal with this just like we had dealt with things the last 7.5 years. TOGETHER. With a lot of love, support, laughter, and understanding.
Going home to my girls was scary for me. How did we tell them without frightening them? Without them feeling like the bottom had dropped out of their world? Jeff did most the talking. Explaining enough that they felt calm but not too in depth. I remember sitting there, not crying because I’d gotten that out of my system before coming home so I wouldn’t frighten the girls, nodding and agreeing with Jeff. I didn’t say much because I was afraid I’d not say the right words. That I would scare them.
Then we decided to go file for disability because we knew this diagnosis was going to change everything. Everything.
So why am I just now writing this??? I just this evening came to a head on, full impact of acknowledging what is wrong with me. I’m currently reading a fiction book and the main character has a brain injury and is having seizures. For some odd reason, seeing that word…SEIZURES….Seeing it in stark black and white….I started crying.
Then I realized….I’ve avoided saying a specific statement….I’ve said “They say I have epilepsy.” Notice that….THEY?? Reading that word seizure, it slammed into me….what I haven’t yet said, what I’m scared to admit, “I…..I have epilepsy.” “I’m an epileptic.” I’M AN EPILEPTIC.” So there! I’ve said it, I’ve admitted it to myself……after 7 weeks and a word in a book later.
Why didn’t I say those words before now?
I think by saying “they” I was fooling myself. Thinking, I don’t REALLY have that. After seriously thinking about the last 7+ years, I realized I have been having seizures. One I know about specifically because it frightened me so deeply. The others, Jeff and our girls have witnessed and I trust them. I can not distance myself from this truth any longer.
So what now? Where do I go from here?
Well….I move forward just like I have for the past 7+ years. I move forward with God leading me, holding me, reminding me that I’m His. I’ve had a few eye opening, random thoughts that pop up at the oddest times … Like I can NEVER allow my life insurance payments to lapse. See? Random!
What I cling to is this….Epilepsy isn’t who I am. It’s a part of me, it helps me explain to people why I can NOT remember their names even after having met them 5 times…(memory loss….). This is a small part of what makes up Amanda. I was a swimmer….but that isn’t who I am….it’s a part of me. I was a scholarship student to Germany….but that isn’t who I am….it’s a part of me. I have epilepsy….but that isn’t who I am.
So, who am I? I am a child of the King. I am His and He is mine. He holds me and makes me more like His Son Jesus every day. Who am I? I’m Amanda, a gal who may have many small things that are a part of me but who has ONE thing that drives me and makes me who I am. I am His child. Desiring Him above ALL else, begging Him to NEVER stop working on me, to make me more like Him and less like me.
THAT’S who I am!!!
Thanks for reading this. It was gut wrenching to write but at the same time, healing and purging to my spirit. Much love in Christ to all of you. Keep striving to stay in God’s path for you.