Hannah Newport | @heyhelloitshannah
I walk downstairs on Saturday morning. It’s 11 a.m., so not everyone’s version of a morning but mine, nonetheless. Like always, my husband asks how I slept. He listens closely as I talk about how I tossed and turned, how many times I creaked down the hall to go to the bathroom in the night, how I had such a weird dream. You wouldn't believe it — such a weird dream.
I have nocturnal epilepsy. For me, that means I’ll occasionally have a grand mal seizure as I’m falling asleep. Even if I’m not having a seizure as I’m drifting off, I’m usually worrying about whether I will. When I’m lying in bed at night, I’m scanning my body the way some people count sheep. Sleep has become my world and so my husband has made it his world, too — mandatory dark bedrooms, silent morning tiptoes, a gentle squeeze of my hand in bed to let me know that he’s there and that he’s not asleep yet either.
To me, that’s love. The rhythm of life changes when you get diagnosed with a chronic health condition, and grand gestures often give way to quiet, unwavering support. Before living with epilepsy, a dozen flowers and a date night would’ve made my heart skip a beat. But now I yearn for things that might seem ordinary to someone else peering in. Like when my husband attends a doctor’s appointment with me. We sit in the hospital hallway, shoes squeaking on shiny floors as he runs through a list of questions that he wants to ask the doctor. Or when he softly reminds me to put my medication in my weekly pill organizer so that I don’t forget to take my blue pills, my yellow pills, and my white ones, too. I never thought that my life would be Monday-through-Sunday medication sorting, but here I am finding it kind of romantic.
And these ordinary yet meaningful acts don’t just show up in partnered love, either. After my most recent seizure, my mom drove into the city just to bring me soup and to help me wash and fold my laundry. Seeing my clothes neatly folded and tucked away in drawers made me emotional. When you’re literally and figuratively shaken up by a seizure and its aftermath, it can mean the world for someone to simply fold your t-shirts.
So much of what I’ve learned about love is through TV and movies. It’s all small-town sweethearts doing sweeping gestures to prove that they were soulmates all along. No one’s mom is in there folding laundry because her daughter can’t get out of bed. No one is dealing with insomnia and the anxiety that comes with it. In these glossy versions of affection, we forget about the love that looks like routine and responsibility — the regular, patient kind that courses through relationships shaped by chronic illness.
“Sleep has become my world and so my husband has made it his world, too — mandatory dark bedrooms, silent morning tiptoes, a gentle squeeze of my hand in bed to let me know that he’s there and that he’s not asleep yet either.”
That’s not to say that those living with health challenges are relegated to a life of stripped-back romance. It still shows up in thoughtful notes on the kitchen counter, holding hands at the movies, a cake baked on your birthday. But, it’s been a pleasant surprise to watch how love unfolds in different ways — something that I might not have seen without my diagnosis.
I’d be lying if I said that I don’t grieve a life of date nights without pill bottles rattling in my bag, or nights spent cuddling on the couch without anxious thoughts of bedtime looming. I’m envious of those who do have unencumbered romance. But, after living with epilepsy for 10 years, I’ve come to terms with the fact that this is my life now. That no, things didn’t turn out exactly as planned. But on this unsteady ride, I’ve seen how love can spill out in so many beautiful ways — how it can be steady and routine, and how, when your physical and mental health feel uncertain, this can be exactly what you need.
I hope that everyone living with a chronic health condition can find the kind of love they need — from a partner, from friends, from family, or from their community. It might not look like the love we’re taught to expect, but I hope you can see the beauty in it, even if it’s simply in someone folding your lights and darks.
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