On living with a significant other who has a rare brain disease

The subtitle should be: ...and when he has a bad reaction to his medication and has seizures in the middle of the night.

But that's too long, obviously.

I haven't mentioned it before, maybe just in passing, but my husband has a rare brain disease that requires regular medication to ease the pain. It's usually not something we talk about a lot, the two of us, but sometimes it requires us to confront it face to face. Like this weekend, when it had a temper tantrum and wanted us to pay it our full attention.

At almost 6am, I woke up from a terrible sound. One that I dread all the time. I thought it was the hubs falling down our stairs. He's tripped down them before, and it's always been my worst fear.

Until this night, when my worst fear was one-upped.

I run to the hallway to find my husband convulsing, stuttering, and unable to take a deep breath. Next to him is his fallen glass of water, with his tablet floating in the puddle that has formed.

He ended up being okay, once I got him downstairs and onto the couch. Carrying a 6', 165+ pound man down a flight of stairs is something I never thought I would be able to write on a resume, but surprisingly under such conditions I can lift quite a bit. He slowly started calming down, his jitters subsided, and he was able to relax his stiff limbs. But that is a night that I will never forget, and never want to repeat again.

Of course, it's a total accident that it happened. How was he supposed to know that his meds would turn against him? They are supposed to help him, right?...

I don't know why I've never talked about this part of my life before, maybe I don't want to give it the attention. I also don't want people to pity me, or think I'm relying on it to be noticed. Believe me, I wish he never had this disease. But, he does, so I move on. Nothing I can do to change the past. And I knew what I was getting into when I married him.

So, it's just a thing we deal with. Sometimes it can be forgotten for a few hours, other times it can be overwhelming. But what I've learned is that no matter what, I'll always wake up in the night to take care of him, in case he needs me to carry him down a flight of stairs again.

Here's exactly what he has (HERE), he's the first person to have it as a child.

xoHM