Rob is out of town this week, and my parents are here to help. They’re sleeping separately, my mom in the guest bedroom and my dad on the couch outside my bedroom, so he can hear me through my mask if I need help in the middle of the night. Which I always do. My body can’t stay in one position comfortably for hours on end, so somewhere around 2am I call out for an adjustment. Then again around 4. It makes me so unhappy to need this kind of help that I sort of act like a jerk about it. I’m not proud to admit that, but there you have it. Everyone around me is sleep deprived. All the time. But they seem to be handling it better than I am.

Let me tell you something that you probably didn’t know. You have not LIVED until you are an adult whose parents have to put you to bed. My parents have held this distinct honor for the past three nights. They stood over me, at the foot of my bed, wrapping Velcro braces around my feet to keep my ankles straight. I tried to close my eyes, wishing to be somewhere else, hating how this twisted disease is destroying all the normalcy in my relationships. I watched the two of them fussing over me, checking with each other on what to do next, consulting notes they’d made after a bedtime training session with Rob.

As this transpired, I felt my annoyance fade, replaced by a momentary flood of warmth for my mom and dad. As if maybe this is what it was like when I was a baby, their first, and they hovered over my crib, discussing what the doctor had advised, moving my little body to make it comfortable. I pictured my baby-self criticizing them for everything they were doing wrong. I saw how unpleasant (also precocious!) that would have been, and I tried to keep my adult-self silent as they wrangled sheets and smoothed a comforter over me. As my dad used a remote to raise my adjustable bed and fit the breathing mask over my face.

But it was still so hard, and my annoyance wasn’t gone for long. I’m not a baby, but in so many ways, I need to be handled like one. Yet I’m expected to conduct myself like a grown-up. I am straddling two worlds: an intellectual one where I’m still in control and a physical one where I’m almost completely helpless. It’s not compatible with being my kindest self, and usually the best I can hope for is to shut up and not make it worse by grumbling at the people who are trying to help me. I’m not good at this.

I don’t have the answers for how to make it easier to live like this. I just want Rob to come home, because I’m always more comfortable when he’s the one helping me. It feels somehow more appropriate, though it’s certainly messed up in its own way. I want my parents to enjoy their time—and their sleep—when they visit. To focus on grandparenting.

Being in control of my mind and my body is what would make me happy. Living only in one world, the one in which I can get up and walk away from situations that make me uncomfortable. In that place, I feel like I would be able to access kindness, that critical component to any relationship. That thing that I am sorely lacking at the moment. And the one thing that the people in my life really deserve.