I recently bragged that Adam was six months seizure free. And then he had three… in a month. Once I heard him crash to the ground and scream. He had hit his head and his eye was blackening and swelling. The baby was terrified- she was in his arms when he went down, but he had the presence of mind to set her down before he crashed to the floor. I worry, and I cry, and I become defeated.
We are constantly in this gut-wrenching dance, holding our breath and hyper-aware of what his body may do at any moment. It’s a glance or a flick of the eye that is all-knowing to be on alert for what may come. It’s happened so many places- from the movie theater, which starts toward the last 1/3 of the movie, his skin flares hot and his hand twitches, and I spring into action and dig through my purse for a pill.

The other day- his legs gave way and he fell- into a pile of mud, with lots of people around. He always worries about what people might think- is he drunk? Did he slip? But I don’t care what anyone else thinks and I wish he wouldn’t either, although I know his pride is bruised every time it brings him to his knees. I got him to my car quickly where he continued to have a seizure, covered in mud, with the crowds all around us, completely oblivious to what was happening.

I face debilitating anxiety when my mind gets the chance to quiet, listening for his breathing and split seconds of terror, thinking tonight- or tomorrow- will be the last day he’s alive. This sounds dramatic, but I’ve been with him during grand mal seizures when I cried over his limp and clammy body. I’ve seen the blood gush from his head when he falls, when he needs stitches or causes a black eye that takes weeks to heal.

I know I could have 40 more years, or 40 more days with Adam. I know that he could be healthy for months and then pass away from a seizure, or SUDEP, or his heart condition, with not even a moment’s notice. And that’s what terrifies me- because this last year I’ve witnessed friends and acquaintances lose their spouses shockingly quickly, with no idea what was coming. And I can’t bear to think of a life without Adam, who is the only person who has so fully and completely understood my mind, heart and soul. But I worry. And when we go to the doctors, I ask them to give me some sort of guarantee that his conditions aren’t fatal, that he won’t be leaving my side any time soon. They dance around the question. They never give me a guarantee. They are not in the business to make promises, especially ones they know they can’t keep.

And I’m always keeping track in my head, how many weeks has it been? Silently celebrating when it’s been more than a month, or two, or three, and then he has three seizures in a week. I can’t live a normal life because this is always bubbling under the surface, keeping me on edge, waiting for the house of cards that we’ve very carefully built around us, thinking we have a normal life, to fall. And it always falls.

I put on this brave face for everyone, my family and my friends, even Adam, to assure them all that I’m okay, that he’ll be okay. They need that from me- they worry about us. Adam worries, but I try to keep his fears at bay. I don’t share with him the research I’ve read, the inexplicable link between epilepsy and his heart condition, the rates of death from SUDEP (Sudden Unexpected Death from Epilepsy).

This story doesn’t have an ending. My anxiety continues. I’ve often kept these stories close to me because I don’t want my family to worry about us.  This is the raw and unedited narrative of our lives, and oftentimes, it’s not pretty. Often, it’s medication and seizures and ruined nights out, the terrified look on Adam’s face when I can see it’s about to overtake him.

It wears on you. But when I married Adam, I took my “in sickness and health” vow seriously, and I live that way every day. I hope I will get fifty more years.