On the morning of September 23, 2017, Matt was still connected to the EEG machine. More than twenty-four hours had passed since he’d started the test and we were both ready to hear the results and leave the hospital. We had a family event to attend in the early afternoon at which Matt had been looking forward to seeing his nieces.
The minutes and hours ticked by. We needed a technician to remove the electrodes from Matt’s head and a neurologist to read the report produced by the machine. By 11, we’d found the technician. By noon, we were still waiting for the neurologist. It seemed as if we’d miss the family event.
Matt was disappointed by the endless delays, but calm. Not quite himself in terms of humor and charm, but not the angry person he’d been the day before. As with the previous upswing, the shift came without warning and I didn’t search too hard for an explanation. It mattered only that we’d found common ground again, we were united by a single goal. Back on the same team.
The neurologist arrived and cleared Matt for discharge. The EEG had shown no signs of additional seizure activity. We left with a prescription for Keppra (anti-seizure medicine) for Matt and a hefty dose of guilt for me (had that 9-1-1 call been necessary?).
We rushed to the family event and arrived with a little less than an hour to spare. It was the first time G and H had seen Matt since he’d been loaded onto an ambulance after the seizure on September 21st. H was cautious. He refused to greet Matt and clung to me. I remember the way I carried him around on my hip, the way his hands locked together behind my neck so I couldn’t let him go. G was simply excited to have Daddy back.
After the event, we tried to settle into a normal Saturday afternoon routine. G had cheerleading and I dragged H with me while Matt stayed home with his dad. During the game, my phone buzzed with password alerts. Matt had accidentally erased his entire phone and, in the process of attempting to restore his contacts, he had changed the password on our family Apple ID. He reset the password half a dozen times during the sixty minutes of cheerleading. He also forgot the password half a dozen times during the sixty minutes of cheerleading. When I arrived home, we were both frustrated and irritated and slightly distraught. Matt was the family tech genius—the guy who programmed the remote controls, connected the lights in the house to an app on our phones, and always made sure to have the most updated gadgets—but now he couldn’t remember a password or retrieve his contacts.
That night, as we (our family of four) sat down for a quiet dinner after a stressful and emotional few days, Matt suffered another seizure. I remember these moments with a heart racing kind of clarity. The seizure was minor, confined only in Matt’s right hand. I guided him to a chair and called Duke, who said not to worry—Matt’s body was simply transitioning from the IV seizure medicine to the pill form medicine. But I had to worry. For Matt, and for G and H. I remember G’s and H’s faces as they saw that involuntary shaking again. I knew they were right back to that moment by the car. I knew that the very last barrier protecting their innocence from the reality we were living had been shattered.
I remember one final moment from this day. In the morning, as Matt and I waited for his discharge papers at the hospital, I rode up in the elevator (after one of my many visits to the Starbucks) with one of the nurses who’d treated Matt in the ICU the week before. The nurse recognized me and my heart sunk. I didn’t want to be recognized by the doctors and nurses. I didn’t want to be a familiar face in the hallways of that hospital. She asked what had happened and I told her. She shook her head, and in her eyes, I saw something that looked almost like resignation—of course, he’s back and you’re back, what did you expect—but what she said was not that. She said (something like): I’m sorry. We were all hoping we wouldn’t have to see you guys again.
Something in her we struck me. I use the word we so often in this project. Sometimes we is Matt and I, sometimes it includes G and H, or Matt’s parents, or all our extended family. But it had been a long time since I’d used we and included the doctors. When Matt and I entered into the brain cancer journey, we (he and I) had felt like the doctors were on our team. Somehow, we’d lost that feeling. Somehow, in all those times the doctors told us to simply wait (take two Tylenol and call me in the morning), while failing to recognize how difficult (impossible, heartbreaking, exhausting) our day-to-day life had become, we’d lost that we with the doctors. Somehow, it felt as if Matt and I had been abandoned, left to drown in the terrifying unknown of Glioblastoma.
That nurse’s we struck me. She couldn’t save us from our day-to-day, give us the tools we needed to keep from feeling as if we were drowning, but she—and her we—had been hoping for Matt, too. And I couldn’t help but think that maybe, possibly, she saw the same potential for a miracle that I saw.
Her we wasn’t a lifeline, but it was an invaluable raft.