Matt told me his pain was at 1000 and I’d never felt so helpless or so alone.
I gave Matt another dose of Tylenol and called Duke’s Emergency Line. The answering service took my name, phone number, and message and told me that the on-call doctor would return my call shortly. But minutes passed. Maybe hours. Maybe only seconds. (I don’t have the call log and time became meaningless some time after midnight on September 13, 2017.) Matt was in pain and begging me to help him. I told him I was going to call 9-1-1, that I couldn’t wait for Duke. I told him I didn’t know what to do.
With shaking hands, I dialed 9-1-1 for the first time in my life. I explained about the brain tumor and the doctor’s one to ten scale and that Matt’s pain was at 1000. As I spoke, I tried to anchor myself to reality, but I couldn’t. The moment felt so surreal. What had just happened? Hours ago, we’d watched a show and gone to bed and everything had seemed fine.
I was sure in the cold light of the morning, Matt would be upset that I’d overreacted in calling 9-1-1. But in the dark heart of the night, I couldn’t think of anything else to do. I didn’t trust myself. I wouldn’t learn to trust my instincts with Matt for a while yet.
Sometime while I had been on the phone, Matt had stood and packed himself a hospital bag—a phone charger, a bottle of water, and a few other necessities. Somehow, Matt, who was suffering from unspeakable pain, was more rational than I was. (Irrationality on my end became a theme of the day.)
Matt and I sat on the front steps and waited for the ambulance. He sat with his head in his hands, but the worst of the pain seemed to have faded. At least that’s the way it looked to me. I had learned, and would continue to learn, how adept Matt was at hiding the truth of his pain and the extent of his symptoms. We decided he’d go to the hospital in an ambulance and I’d get the kids to school; I could be there by 8 (ish).
A policeman arrived and, slightly grinning, approached Matt. He, too, was fooled by Matt’s appearance. The policeman, who meant only to help, asked if Matt simply had a migraine. I explained again about the brain tumors and the doctor’s scale of one to ten, and Matt’s answer of 1000. The policeman stopped grinning.
The ambulance arrived and Matt walked to the stretcher. In that moment, I was sure I’d overreacted. If I’d just waited for Duke to call me back… But then, Matt sat on the stretcher and attempted to answer the EMT’s questions, and every single one of his answers about his condition was wrong. Dangerously wrong. He’d confused his entire medical history, all his prescriptions and procedures. I told the EMTs not to listen to Matt. I told them about Duke and the poliovirus and that we needed to run any treatments or medications past Duke to ensure they didn’t conflict with the poliovirus. The EMTs asked if I was coming.
I’d often felt the desperate need to be in two places at once, but never more than in that moment. Matt needed me at the hospital. But the idea of waking up G and H, ripping them from their beds, terrifying them, seemed wrong. I needed help. (If I’d been even slightly rational, I would have realized I needed to call for more help much earlier.)
I called Matt’s mom. I hated that I knew she’d be terrified by the middle of the night phone call, worried for her son and panicked, but I knew she’d come in a heartbeat. She did. And I was at the hospital filling out Matt’s emergency room paperwork within the half hour.
At the hospital, a CT scan revealed that Matt had suffered a brain hemorrhage. The neurosurgeon who operated on Matt in June 2016 examined him, but his hands were tied. Avastin, that black box drug, the one that had prevented us from seeking other treatments earlier, was preventing us from acting now. Avastin, that black box drug associated with so many dangerous side effects, including a risk of hemorrhage, had likely caused this problem. We could do nothing but dose Matt with pain killers and wait for Duke to call and give us direction.
We waited. Because I’d been up since midnight, because I’d expected a call first thing in the morning, the wait felt endless. When Duke returned my call around 1 p.m., the answer they gave was the same one I’d heard from the neurosurgeon. Surgically, we needed to be conservative because of the Avastin. The plan was to do nothing: monitor Matt’s vitals, keep him pain free, and wait for the bleed to resolve itself.
That night, because apparently, yet again, the world outside the emergency room had continued to spin, was Back To School night. I needed to be in three places at once: with Matt, with G & H, and at the kids’ school, meeting the teachers. (In retrospect, I probably could have skipped back-to-school night, but in the moment, it had seemed crucial that I was there. Irrationality was the theme of the day, after all.) I called in more help. Matt’s mom went to Matt in the hospital, my mom helped with G & H, and I went to school.
I remember waiting in the lobby for the moment when the parents would be invited up to the classrooms. Parents were mingling in the lobby and I stood off in a hallway. I remember thinking I couldn’t even make eye contact because I would unravel. I wouldn’t know what to say, how to even begin to admit the night and day and nightmare I’d lived, was living. I needed to get to the classrooms, collect the information, and leave.
I remember the exhaustion, physical, mental, and emotional. I remember the effort it took to smile at another parent in the hallway.
I remember, most of all, the isolation. That crushing, breath stealing isolation. The feeling that I was no longer in the same world as anyone around me. The feeling that I might never again be in the same world as anyone around me; the distance had grown too great already. In Post Hope, the distance often seems insurmountable. The hope becomes that maybe, one day, it won’t be.
So…how to soften the edge of a long night and a long day? How not to leave the story of today on a low note?
I met G’s and H’s teachers that night and walked away from the elementary school feeling relief for the first time in nearly twenty-four hours. For at least the foreseeable future, we (our family of four) were in for a difficult road, but G and H were in good hands. Of that, I had no doubt–they had incredible teachers guiding them. I knew that no matter what happened next, G and H would have a safe space to go and learn and be with their friends.
There is so, so much value in that knowledge. And I will always be grateful for the teachers who offered an extra hug, an extra smile, simply an extra kindness to two kids who might have also felt so achingly alone.