Listen up: 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.”
“What? Acting weird is not a symptom. What are the symppptommmms?” This, drawn out slowly and with empasis, as if Nurse Ratched is talking to an imbecile.
“She’s acting weeiirrdddd,” 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.”
But she 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 so basic as water.
This time, she was acting weird: 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? Was there no one who could get a clear message to me as I stood down there, in the bottom of a very deep well?
Because that’s what it seemed like, being in a very deep well. I remember that I felt my brain couldn’t function. My good friend, Elaine, stood beside me. Like someone needing an interpreter, I turned to her and asked, “Did she just say Olivia is dying?”
Elaine grimly nodded, “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.”
Now we were at the hospital again, and with each visit, we wondered which crisis would lead to sudden death. I imagined a sudden death because she crashed so quickly: in a matter of half an hour, she could be in a crisis. Nobody had told me what the process would actually be. Everyone focused on getting her better so that she could return home and live longer. They said she was dying, but they sent her home. They said she was dying, but they gave us no help. I didn’t even know what we were waiting for. What symptom were we to watch for?
Would she suddenly die on the 20-minute ride to the hospital?
I came to hate the hospital. I feared the bureacracy of the hospital, the faceless paternalism and control of my child and my family; control of the body and, seemingly, the soul. Entering the hospital with my ill child stripped me of my credentials, authority, and autonomy: we were trapped in its giant 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 to despair. –Herman Melville, Moby Dick
Somewhere inside, an old verse rolls around: “Thou hast made marvelous to me Thy lovingkindness in a beseiged city.”
When Olivia’s blood work came back, suddenly there was much bustling around our curtained cubicle. Olivia was whisked onto a gurney and up to a room and loaded with IVs and medications. Nurse Ratched would not look me in the eye so that I could give her a glare that said, “See? Acting weird IS a symptom!”
And here we went again.