I stepped out of the elevator at the hospital and knew. I knew from the amount of nurses streaming out of his room, squirting a pump of hand sanitizer into their hands as they returned to their work stations. I knew from the vibration of panic in the air. I knew from the way they looked at me. With utmost pity.
“Are you the wife?” A nurse I hadn’t met approached me as I made my way down the hallway, which had suddenly become endlessly long.
I nodded and asked what happened. She said he’d had a grand mal seizure—the worst kind of a seizure. She said the doctor would come talk to me soon. She said thank goodness you didn’t have to see that, you look too young for this.
Matt had received a high dose of anti-seizure medicine that mostly knocked him out. He was sleeping underneath crisp white, unwrinkled sheets when I walked into his room. I checked his heart rate—dip and jump—and waited for the neurologist. He arrived within minutes.
He told me the hospital wasn’t equipped to handle Matt. He suggested a transfer to Columbia University’s neuro-intensive unit—and with my permission, he’d start the transfer paperwork immediately. I gave my permission and told him we had a relationship with one of the doctors. Then, he glanced at Matt and gestured for me to follow him out of the room. We stood just on the other side of the doorway, where I could still see Matt, and he told me one final thing.
One year ago today, for the second time in my life, a doctor pulled me aside and told me I needed to come to terms with the truth of my husband’s disease.
For the second time in my life, I told a doctor—through tears and shaking hands— that I understood the truth about Glioblastoma—I wasn’t naive. But the poliovirus had cured people and Matt’s latest MRI looked better and we had been through hard times before.
He looked at me like I was young and stupid. I looked at him and hoped he saw the truth in my words. He simply didn’t know Matt and he didn’t know me and he didn’t know that we weren’t done. We’d made miracles. We had a happily ever after left to live.
I went inside to text updates to all the family and the friends who—once again—would be called on to help. Matt woke up for a few minutes. He asked why I was crying. I told him no reason, that I was just a little scared but we were going to go to Columbia now and everything would be okay. He tried to smile and fell back asleep.
A friend arrived to sit with me, knowing I’d need someone before I knew it. I couldn’t stop the tears. Despite what I’d told the doctor, my conviction was faltering. This friend sat with me and listened. When there was nothing to say, she listened and took on some of the burden of our story so I didn’t have to bear it alone. An invaluable gift. A little light and a little love.
When the transport ambulance arrived and Matt was rolled into the ambulance, his heart rate dipped to the lowest I’d seen yet—30bpm. His lips turned white. He recovered after a few minutes on his own. Then it happened again.
I drove to the hospital—over the George Washington Bridge by myself for the first time—and pushed away every worst case scenario. I beat the ambulance to Columbia University. (My uncle, who I lovingly think of as king of the road, taught me that the most dangerous thing one can do on the highway when changing lanes is slow down. There’s a metaphor for this situation in there, I think.)
Columbia has been absent from this story for quite a few weeks. The last mention was on September 20th, when Matt and I canceled his Avastin infusion. After that, Matt and I didn’t keep Columbia updated on his health, his seizures, or his falls. After all, for better or worse (hindsight: worse) following that one fateful visit we’d relegated the Columbia doctor’s role to Avastin only. But suddenly, I needed this doctor to save us. Suddenly, after weeks of no communication, I showed up on her doorstep, wanting her to fix the mess we were in. She could have said I told you to listen to me. She could have held a grudge that we’d chosen Duke—every time—over her. She could have let ego influence her choices. She didn’t. She accepted Matt as a patient and me as a desperate wife. And when she did—though I didn’t know it then—after months of searching, we’d find finally found a partner, not a new doctor.
After Matt was settled, Matt’s sister came to stay with Matt so I could get the kids to bed. I wanted to be home for their sake, but I wanted to be home with them for mine, too. I needed the security of their smiles and hugs as much as they needed the safety of knowing their mom was coming back. I thought it would be okay if I left because Matt would sleep the rest of the day thanks to the medication. He didn’t.
At some point, Matt’s sister called me and filled me in on Matt’s evening—the heart wrenching struggle to put on socks, the forgetfulness and confusion. Guilt clanged through me. She saw a version of Matt I wish she hadn’t had to see. I should have been there. She told me Matt kept asking for me, confusing her with me. I remember too well the weight of that responsibility, the heaviness with which it dropped onto my shoulders. Matt needed me and I would do everything I could for him, but would I be enough? I could only hope.
Guilt, responsibility, hope. And another feeling, which overwhelmed them all. Love. When Matt looked for me, he reminded me that I was his person. And he was my person. And as much as I’d missed him—the real him—over the last few weeks, we were still each other’s person. We were still fighting together. That reminder was enough to keep a single ember of hope alight for one more day.
Today marks eight months since that single ember of hope burned away. A lifetime and a heartbeat. The story is at once a lifetime ago and only a heartbeat ago. The contradictory nature of brain cancer. Or maybe simply the contradictory nature of grief. Eight months in Post Hope means four months remain in this story. Four really hard months of upswings that never reach as high as before and downswings that sink just that much deeper. But also four months of light and love—more friends and family who step up before I know I need them to, more doctors who care with their whole hearts, more moments when I’m overwhelmed with a love that keeps hope alight for one more day.