I publish this hesitantly. My husband read the entry for the first time, paused, and asked me to hold on to it for a minute; it might be too personal this time. I guess I didn’t realize how much I’ve actually bared on this blog. This morning he said to go ahead and publish it; it’s Epilepsy in real life after all. Thank you, babe, for letting me share our Epilepsy with everyone, and for loving me the way you do. This road is not easy…
“You should’ve seen her before all this.”
That comment’s replayed in my head over and over for the past few months, and now this conversation in the car brought me right back to the sadness I felt the first time he’d said it. What I know he thinks but had never shared aloud in those specific words.
He, being my husband, made the comment in conversation with a doctor. And he’d come home and relayed the conversation to me; I knew the comment wasn’t said in judgement and when he casually repeated those words, I could see an old sense of pride. Almost as if he was picturing her.
So, in the car, on our way home from an event, (the only time we achieve uninterrupted conversation these days lol) he said how much he missed her. I invited it. In fact, I’d just asked him- “What would you do?” in regards to the RNS surgery if he were me, if he had Epilepsy. He responded he’d do it. But I’ve known that too from many previous conversations. And I know he doesn’t answer lightly or with intent to push me into brain surgery; he’s terrified at the thought of his wife going under the knife. Besides, he knows I make up my own mind no matter what. He went on to explain his reasons why, as a person who’s seen it all. Lived beside it, can only place himself in what he’s seen… But in my eyes, I pictured his words as if they were hers. (Exactly what he told me not to do.) For me though, he’d stepped into my shell and played her part. Yet at the end of his argument, I saw him carefully clarify his position. His point of view- as if he’s someone who lives with severe Epilepsy. I only saw the man who loves her though. The man who’s watched her struggle slowly topple her strength ‘til she became me. Exhausted. Empty. Unable to give. With glimpses of confidence, laughter and a carefree spirit.
I went back to that original statement though, when his voice became softer and there was something besides a passion for me to feel good again… It was such deep pain. He whispered, “I don’t know what to do, I just want my wife back. I haven’t had her in so long…” It was the ache in his voice that broke me, stole my breath.
And then we were quiet. Such a heavy silence.
We stopped at a light and he looked at me, grabbed my hand, and said, “You wanted me to be honest, right?” I did. I do. Always. He wasn’t telling me anything I didn’t already know. Anything we hadn’t already shared. Nothing I hadn’t already gleaned from previous conversations.
So as we proceed with more pre-surgery testing, more experimenting, those two moments now stay with me. It’s ironic those are now the times more haunting for me than nights of dozens of seizures.
We pulled into the driveway, our hands clasped together so tightly; despite our conversation, I felt strong. Felt our strength together as we push toward the same goal. But I wished I hadn’t asked. Because earlier that night, I had been her. We had been us. My body had said, I’ll give you this one.
It had been good. And no matter the evening’s end, she had been there… Those are the times we’re reminded, I can find her. Those are also the moments I pray he always remembers-
she’s still me… I’m still her.
I’m still here.