Fear encounter #5: My daughter’s illness pays her a visit today, and scares the crap out of everyone

This is not an emergency. Of the many things I love about Julie, the school nurse at my daughter’s school, this may be my favorite. She starts every phone call this way. And we’ve had so, so many phone calls.

“B’s arm started spasming in her science class and she can’t make it stop,” Julie told me. “She is crying, and scared.”

I’m not frightened, not immediately. I drive to the school in a state of calm, minding traffic rules, even listening to the radio.

That all changes when I see her: B is lying on a cot; her face pink and blotchy, contorted in pain and fear; her left arm clenched and pulsating furiously. She stares at me hard, with that urgent, pleading look I’ve come too know too well over the last year and a half, since she first contracted reflexive sympathetic dystrophy, a vicious condition that corrupts the communication between her brain and her nervous system. It’s a look that means Get me the fuck out of here. And by here, she means her own body.

I hold her. I rock her. I pull back her hair. I note that it needs to be washed, then wonder how I can think about that at a time like this. I dry her eyes over and over.

Today is not 15 months ago. B is not in the hospital, senseless and nearly incoherent from pain. There was the time it took four E.R. nurses to hold her down while they shot her up with enough Ativan to sedate a grown man. There was the time she just screamed. I don’t know how many hours it lasted. I lost count.

I try to still the shaking of her arm. It doesn’t work. I change tactics.

“B, let’s remember this,” I intone, as her arm shudders and vibrates. “This is going to pass. We have beaten this before and we will beat it again. We are stronger than this! We won’t let the RSD hurt you anymore!” Suddenly, I’m Dr. Phil-meets-Suze Orman-meets-Coach Taylor. B nods. I find it maddening that inspirational pep talks—the sort I otherwise recoil at—are the only thing I can ever seem to do for my child.

Today is not 15 months ago. She will not go from having pain in her arm, to pain in her leg, to the other leg, to her back, then her jaw, to almost total paralysis. There will be no more incorrect diagnoses, ranging from some-kind-of-virus to hysteria. This is not the beginning of anything. Today is just today. 

A palimpsest is a piece of paper from which the words have been removed, so that the paper can be reused. But nothing ever gets truly or completely erased. So ultimately, the page contains text from both now and then, and the words overlay each other at random, rendering the whole thing almost indecipherable. That’s what this moment feels like: I am confused, unsure if I’m reacting to what’s happening right now, or what happened a year ago, or both. I’m sitting there, holding her, staring off above her head at the nurse’s eye chart. But I’m also in my daughter’s old hospital room, gazing blankly at the snowy roof just under the window ledge, trying to husband enough energy to get through the rest of the day. And then I’m blinking back tears, trying to maintain some semblance of decorum as gum-chewing middle-schoolers blithely wander in and out of the office. Though honestly, I shouldn’t worry. When you’re a parent, middle-schoolers look right through you. It’s like you’re a filing cabinet, or a ghost.

I tell the nurse I’m going to take B home. Once B is there, Chris and I do the things we do: I make toast. He makes jokes. I call my parents and best friend, and cry. He takes the dog for a walk. I’ll be copacetic in a day or two. He’ll come down with stress cramps in about 36 hours.

About two hours after they started, B’s spasms abruptly end. Her arm stops shaking. Her pain begins to dissipate. She looks like she’s been run over by a steamroller. But she starts to worry about homework. That’s a good sign.

We don’t know why she had this relapse today—it’s just the third one she’s had since leaving the hospital last February, though by far the longest and most painful. It could have been stress; seventh grade is soul-crushing on a good day. It could simply be that she has a Machiavellian chronic condition that will, now and then, assert itself, letting us know that we can’t forget about it, or move past it, not entirely anyway.

I wish I could talk directly to the RSD. I wish I could tell it that it doesn’t need to flex its power in front of us. That even when it’s not laying waste to my daughter’s body and her will, it is always with all of us. I also wish that I could let it know that as much as it terrifies us—and it does, more than just about anything—it will never really get the better of us. The pep talk I give my daughter may be cheesy, but it’s also true: We are stronger, in the end. We will prevail.