There was a time that I could sleep until 2pm in the afternoon. No breaks, no getting up to let the dog out, no Mother Nature reprieves- just sleep. I would stay up until 1am or 2am and crash. Twelve, thirteen hours of siesta and just because I enjoyed myself so much, sometimes I would take a nap later. In my college apartment, my roommates and I fitted the windows with aluminum foil and blacked out our room. A bomb shelter where nothing got in or out. Not that sunlight was issue for me, we tricked our brains into thinking it was always time to sleep. That’s what you do when you stay up all night playing ping pong and need to nap for a few hours during a class break.
Nights have gotten hard lately. Sleep is a commodity. Huntington’s affects movement, cognition, and mood. For over four years I never saw much of an effect on Tiffanni’s mood. She was happy, content, even carefree- especially to carry so much. But lately, her anxiety is getting the better of her. Household items are out of place. She needs Tylenol. Her hair needs to be brushed again. She’s hungry. She’s tired. She can’t sleep. She won’t sit down. The kids are too loud. The kids are in the house. We have kids. And for a while now, her seemingly incessant worry has creeped into our house sanity. It can be especially tough when I’m not home sometimes. Who knew that I could have a calming effect?
So I called her Doctor and told him that something had to give. She had to sleep. I had to sleep. So he prescribed Ambien. Tiff used to sleepwalk and talk in her sleep. One time I caught her digging through a potato bag at the bottom of the pantry. “What are you doing?” I asked, arrested from a REM cycle after hearing the cabinets banging in the kitchen.
“I’m looking for my pants,” she said. The look that followed inferred, what else do you think that I would be doing?
Another time she woke me up in a panic with an AK-47 cadence of nudges to my kidney. “Someone is in our shower!” When I came to my bearings, I thought to myself that that was impossible.
“No one is in the shower Tiff, you’re asleep.” But it’s hard to reason with someone and convince them that they are asleep when they’re carrying on a conversation with you.
“I thought you were the man,” she responded. Not the man, I had never claimed that (except when bragging about my unbeaten Monopoly streak.) The man. So I got up to check the shower. I slung back the shower curtain, fist cocked, just in case the .1% chance that someone was in there, I was prepared for.
“See,” I said, “There’s no one in there just like I told you.” I glared at her, only to hear her snoring again.
But Ambien was another thing altogether. Not only did she not sleep, she got up and did chores. I caught her sprawled out like Cinderella cleaning out the bathroom vanity one night. Brushing her hair for over an hour another. And the whole time talking to me. If I wouldn’t respond, she would nudge me over and over again. I retreated to the couch several times, but she would go wake the kids. So I called the Doctor again. This time he prescribed something different.
And she slept.
But, there was a tradeoff. Her response time slowed. Her ability to reason and converse changed. Her balance regressed to early childhood. Her fine motor skills lessened.
But she slept.
They don’t give you a playbook on the household health quotient. My sanity and her incoherence vs. my insanity and her sense of reality, her anxiety. If I just knew the right thing to do, I would do it. If someone said, “On Monday, just grin and bear it and let her breathe. But on Tuesday, medicate her so you can catch up on sleep.” That would be simple. But there’s no way to calculate the cost of stress in a home. Not on her, not on us. There’s no textbook that offers an equation to solve for health. So, we wing it. I fly blind. I guess and pray that it’s the right thing.
I’ve been married to the same woman for almost eighteen years, but she’s not the same woman. I don’t think that I expected that she would be. But who knows what you expect when you’re a the-world-is-my-oyster kid. And it’s not like the vows promised that nothing would change- quite the opposite actually. There’s a sense of contentment with the trajectory and growth for one of us. A sense of loss and sadness for the decline of the other. And it frustrates me that they might be inextricably connected. Some tradeoffs are good. Some, not so much. I just wish that I could discern the difference.