Something wasn’t right.
We thought it was because we were hungry. It was past noon and most of the house hadn’t eaten a thing. We’d reached that moment in time where it was too late to have patience and fix something. We wanted food now. Jeanette kept asking me what we should eat. I deflected and asked what she had in mind. She was coy.
– I want something hearty.
– Like what?
– A burger would be good.
– I could go for a burger, too.
I stopped short of recommending our favorite restaurant. I wanted this to be her idea. She didn’t take the bait. After further deliberation I caved.
– How about R&D Kitchen?
– Can we really afford to go out?
– Oh, please! You want to go there, too.
She agreed. It took a full 30 minutes more to get the kids rounded up. R&D is one of favorite spots. It wasn’t a matter of getting the kids inspired. Instead, we had to hunt for shoes, make sure hair was combed and rustle everyone to get out the door to the end of the block.
But when we sat down, something still wasn’t right.
The appetizers arrived. Jeanette and I had fresh glasses of wine. The kids had pop.
Still, something wasn’t right.
When Jordan excused herself to go to the restroom, we knew. She said nothing, just got up rather abruptly, excused herself politely, and trudged out of sight. Jeanette and I made the briefest eye contact before she followed Jordan down the hall. Somehow, we both knew. Jordan was seizing. The two ladies were gone for only five minutes. Luc and I made idle chit chat. My head was somewhere else. He knew something wasn’t right just as well as I did.
Away from us, down the hall, Jeanette intercepted Jordan in the ladies’ room. Jordan could not speak. Her eyes were distant. Jeanette spoke to her. Jordan nodded, but she had no words. Lately, when the seizures come on Jordan ramps up defiance. She insists on standing. She is restless. Jeanette does everything she can to distract her and convince her to just sit out the convulsions. Jordan has a mind of her own. In the throes of the seizure Jeanette kept cursing herself for not bringing her purse along. The Ativan was in the purse.
Meanwhile, back at the booth, my stomach turned somersaults. I kept wondering whether I should head down the hall to check on the girls. “It’s probably nothing,” I thought. Luc tried to make conversation. His eyes belied his casualness. He watched my every move. Then I saw the girls heading back to the table. Jordan had that distant absence in her eyes and Jeanette told me all I needed to know with one glance.
Jordan sat next to me. At first, she could not speak. Her right side twitched. I asked her name. She just shook her head. Eventually, she struggled to make sounds. There is nothing–nothing at all–more emotionally moving than watching her in these moments. She is fighting–fighting with every synapse in her head. She is trying to break through. Her chin is down. Her brows are knitted. She is going to speak. She is going to snap out of this. She does everything she can to wrestle control over her mind. I sit helplessly and speak as gently to her as I can.
–Jordan, I’m right here, honey. I’m right here.
Every time we go through this, I react differently. It’s always emotional. Today, I was strong. I kept it under control. I was able to whisper to her, hold her hand, and smile. It wasn’t until she started to come out of it that the emotion ran over me. She started to cough. She didn’t get sick, but she did spit up. In the mix of it all, Luc asked if he could be excused. I brushed a tear away when I made eye contact with him and I was able to pull it together when I told him, “of course, Scout. Take as much time as you need.”
Luc took a quick stroll outside, gathered his composure and came back to find us behaving as though everything was normal. Jordan was still only half with us, but to an outside observer we were just another family enjoying Santa Monica’s best food. Slowly, slowly, Jordan’s vocabulary resurfaced. By the time we had paid the check she was mostly back to normal, though she still struggled to form sentences. When we got home, I had to convince her to rest–maybe take a nap.
Every doctor tells us that the seizures are harder on the parents than they are on the patient. She doesn’t feel anything, they say. She doesn’t even remember them. I don’t worry that she is in pain, but I do lament her absence. No science fiction movie can capture the horror of the zombification. She is right there in front of you, looking as radiant as ever, but somehow gone. Then there’s the fight going on inside that you can just sense. She’s pushing it back, willing her mind to settle down, clawing her way back to consciousness. And you want to do everything you can to help her, but the only thing you can do is tell her you’re there. As a parent, it’s absolutely debilitating.
When she was back with us, her fist instinct was to occupy her mind. She whipped out the iPad and started playing Solitaire. Playing is a soft way to describe her action. She manipulated the game with obsessive compulsion. I coached her, happy to converse with her in any way imaginable. I think the more she successfully played her hand the more she knew she had beat the seizure back. Watching her move cards around with such determination, I leaned over, kissed her on the forehead, and reminded her … “I will always be right here with you. Always.”