Acting Weird is Not a Symptom

acting weird is not a symptom

Acting weird is not a symptom. Just ask any emergency room nurse who has known your child for all of 30 seconds.

“What are her symptoms?”

“She’s acting weird.”

“Acting weird is not a symptom. What are the symptoms?” she repeated, drawing the word out slowly, as if talking to an imbecile.

“She’s acting weird,” I respond. “And, for her, acting weird is a symptom. This is our fourth visit—”

“Ma’m, acting weird is not a symptom! So if you can’t tell me what her symptoms are,” she says, with a swift glance at my daughter, who is silently watchful, “and she doesn’t look like anything’s wrong with her, then you can wait because I have patients who are really sick to attend to.”

There is a quick intake of breath by Olivia, who has seen and recognized the look on my face, the narrowing of my eyes. Nurse Ratched raises an eyebrow and leans toward my daughter, evaluating whether that quick gasp is a symptom. No. No symptoms. Only a wide-eyed 11-year-old. The nurse turns to leave.

“As I was saying, nurse, this is our fourth visit in—,” but she’s already gone.

“. . . in as many months,” I finish lamely, shrugging my shoulders at my child helplessly. Her head falls into her hands and she mutters, “It’s OK, Mom. I’m feeling better.”

behavioral changes are symptoms

But Olivia wasn’t better. Every time we arrived here, her symptoms were different. One time she couldn’t speak, but the ER nurses assumed she was normally incommunicative. The next time, she was lethargic and clammy and her blood work showed she was dehydrated. I can’t forget how the nurses stared at me, as if I had been depriving my child of something as basic as water.

This time, she was acting weird in another way. She was dispirited, joyless. Weary. That wasn’t Olivia. Our Olivia was the most joyful, happy, and loving person any of us had met. This was a human being who seemed to have been born to embody joy. At school, they had been attributing her lethargy to boredom, but it seemed to me that, as her body wore down, her spirit must have known somehow, and it wore down with her. She wasn’t herself, and that was a symptom.

Several visits before this one, Olivia had landed in PICU. One of the nurses attached to a specialist told me that this “didn’t look good.” We stood outside the unit where Olivia slept, surrounded by specialists I had never met before, and I wondered . . . what did not-looking-good mean? Was the nurse saying, in so many words, that my daughter was going to die? What did this code mean, and why hadn’t anyone explained what was happening? Was there no one who could get a clear message to me as I stood there, at the bottom of a very deep well?

I remember feeling trapped in that deep, cold place—so deep my brain couldn’t seem to function. That was several ER visits and hospital admissions ago. I had asked my friend Elaine to meet me there, because I was too far down in that well to manage on my own. As she stood beside me, like someone in need of an interpreter, I turned to her and asked, “Did she just say Olivia may die?”

Elaine nodded grimly. “Yes.”

I asked again, “She’s going to die? Now?”

“No,” Elaine answered, “No, not now. Soon. She is going to die from this soon; that’s what they’re saying.”

Now Olivia and I were at the hospital again. With each visit, I wondered: would this be the crisis that led to her sudden death? I imagined it that way—sudden—because she could crash so quickly. In just half an hour, everything could change.

No one ever told me clearly that she was dying. No one explained what processes kept sending her back to the hospital, what it was called, or why it kept happening. The focus was always on patching her up, stabilizing her just enough to go home again, to live a little longer. They hinted at decline, but gave us no language for it. They seemed to say she was dying—but then they sent us home. They offered no roadmap, no help.

I didn’t know what we were waiting for.

What symptom was the turning point?

Would she die suddenly, on the 20-minute ride to the hospital?

I came to hate the hospital. I feared its bureaucracy—the faceless paternalism, the quiet erosion of our agency. With each visit, it took control of my child, my family, her body—her very soul, it seemed. Crossing that threshold stripped me of my authority, my credentials, my autonomy. We weren’t being helped. We were being swallowed whole by its vast, impersonal maw.

I saw the opening maw of hell, with endless pains and sorrows there, which none but they that feel can tell. Oh, I was plunging into despair.
Herman Melville, Moby Dick

From somewhere inside, an old Bible verse surfaces, breaches, rolls and blows: “Thou hast made marvelous to me Thy lovingkindness in a besieged city” (Psalm 31:21). I understood, then, that we were in a besieged city—trapped in frightening circumstances no one could control. But I could choose to focus on the balm of lovingkindness that makes such circumstances bearable. I could, and would, do this for my child—and for those working so hard to save her.

When Olivia’s blood work came back, the quiet shifted. A sudden flurry of movement surrounded our curtained cubicle. She was whisked onto a gurney, taken upstairs, and hooked to IVs and medications.

Nurse Ratched wouldn’t meet my eyes—so she missed the glare that said, “See? Acting weird is a symptom.”

And here we went again.