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.”
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 so 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 very deep and cold place. I remember feeling that my brain couldn’t function. That was several Emergency Room visits and admissions ago. I had asked my good friend, Elaine, to meet me there because of how deep inside that well I was. Elaine stood beside me that other time. Like someone needing an interpreter, I turned to her and asked, “Did she just say Olivia may die?”
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; that’s what they’re saying now.”
Now Olivia and I were at the hospital again. With each visit, I wondered which crisis would lead to her sudden death. I imagined a sudden death because she crashed so quickly; In the matter of half an hour, she could be in a crisis. Nobody had told me with certainty that she would die, what processes kept sending her to the hospital, what this was called, or why this kept happening. Everyone focused on getting her patched up and stable so that she could return home and live longer. They seemed to say she was dying, but then they sent her home. They hinted that she was dying, but they gave us no help.
I didn’t 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 into despair.Herman Melville, Moby Dick
From somewhere inside, an old Bible verse surfaces, breaches, rolls a full body roll, and blows: “Thou hast made marvelous to me Thy lovingkindness in a beseiged city” (Psalm 31:21). I understood then that we were in a beseiged city, in frightening circumstances no one could control, but that I could choose to focus on the balm of lovingkindness that makes hard 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, 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.