September 22, 2017: EEG

I made arrangements for G and H for the day and headed back to the hospital on September 22, 2017 to sort out our next steps. Because, obviously, we needed next steps. Whatever our plan had been—wait for the bleed to resolve on its own—was not working. His pain level remained high. Too high. His personality—that charm and wit—had mostly vanished, appearing only in brief bursts. Now, he’d suffered a seizure.

Matt had a room on the top floor of the hospital in the neurology ward. Unlike with his previous trips to the ER (June 6, 2016 and September 13, 2017) Matt was not admitted into the ICU. He wasn’t in critical condition–physically. Physically, he was fine. No more seizure activity and his vital signs were relatively normal.

But mentally—he wasn’t Matt.

I walked into Matt’s room and couldn’t make sense of the scene in front of me. Matt rested on the bed, a towel wrapped around his head, wires snaking out from beneath the towel. The wires lead to a machine with a large monitor at the foot of Matt’s bed. I asked Matt what that thing was and he said he didn’t know, but he was upset about it.

I learned that the machine was an EEG that would monitor Matt’s brain waves over a twenty-four hour period to check for seizure activity. The purpose (I think) was to determine the right dose of anti-seizure medicine for Matt—something he’d never needed before, but would now become a part of his daily medication cocktail.

Matt was furious about the twenty-four test—we had family in town for Matt’s sister’s baby naming on the 23rd and he wanted to be home in time for that event—but his fury was disproportionate to the conflict. His fury was a living breathing thing, a monster that breathed fire and torched whatever hopes I had for a happy ending to this story.

He had a number of rational reasons to be angry. He was angry with me for making the call that led him back to the hospital. (Maybe I shouldn’t have called 9-1-1. Could there have been another way to handle the seizure? Possibly yes, but even a year removed, I don’t truly know.) He was angry at the nurses who limited his independence by requiring that he call for help to accomplish a simple task like standing or using the bathroom. He was angry at the doctors who hooked him up to a twenty-four hour test that he believed was unnecessary. He had valid reasons to be angry.

But the vastness and depth of that anger. The way he couldn’t control those bursts of rage, the way he shouted about patient rights and couldn’t charm the nurses, the way he didn’t care that we all just wanted him to be safe.

I called Duke. The CT scan showed that the hemorrhage was resolving—the bleed was looking better. Two tumors had disappeared, the third was shrinking, and now the hemorrhage was vanishing. Everything was looking better. So why was Matt only getting worse?

No one had an explanation. No one could tell me why all the tests indicated an upswing, but every moment felt like a free fall.

The answer became again: just wait. Let the seizure meds work. Let the poliovirus work.

On September 22, 2017, my heart broke a thousand times while I sat beside Matt and apologized to the nurses—they needed to know that the man they were meeting was not Matt—and tried to understand how we’d ended up here, in this moment.

That night, I wasn’t sure I could put on a brave, happy face for G and H. I took a few moments for myself before I faced the kids, who’d spent the day with friends and family and once again proved their resiliency.

In those quiet moments, I made a decision. Where we were didn’t matter. Where we were at that moment, wasn’t where we’d be. We had every reason to hope (all those positive tests) and so I had to choose to keep hoping. I had to choose to believe in Matt and Duke and the poliovirus.

The glimmer of hope I clung to, the thought that kept my shoulders back and my chin high, was the one that had been there since the beginning: Matt and I could perform miracles together, we could find our way out of even the darkest midnights as long as we were together.

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