Matt had no scheduled tests on October 8, 2017. No doctor consultations, no results to track down, no technicians to hound. We had hours of uninterrupted time together.
Not much had changed since the shunt surgery. Medically, Matt was in excellent condition. All his vital signs were normal and nobody was worried for his heart or his lungs, anymore. He no longer needed glasses for double vision. Physically, his bladder function was concerning and he was weak. He needed assistance to stand, to walk, to pull the tab off the cereal packet. And mentally—
Mentally, he hadn’t improved. Not yet. He struggled to answer questions—often responding with an answer I couldn’t follow or refusing to answer at all. He had trouble retaining short term memories. He understandably wanted to go home, but I explained he wouldn’t be going home from the hospital after discharge because he needed rehab. An hour later, we’d have the same conversation again.
His charm and smile had vanished.
The light and humor in his eyes was lost.
I remember looking out the window of Matt’s hospital room, watching the fog roll over the Hudson River, fighting back the tears welling in my eyes. We had every reason to hope. The pressure in Matt’s brain was under control; we had doctors who listened and a treatment that had cured people on our side. And yet, Matt wasn’t Matt.
And that truth almost extinguished every flicker of hope ignited by all the rest.
Almost. Because when I turned back toward Matt, he was using his phone—the first time he’d picked it up in days. He was emailing a friend about fantasy football. Somehow, some part of him knew October 8th was a football Sunday, and knew that football Sunday meant fantasy football. Some part of him knew he needed to set his fantasy line up. And every part of me knew that some spark of the real Matt was still there.
When I started this project, I promised to tell our story—mine and Matt’s. But recently, I’ve been aware that I’ve been able to tell only my own story. Matt was semi-conscious for most of the beginning of October. But even after he awoke—
I can’t begin to guess his version of the story. I don’t know how much he understood or remembered of his time at Columbia. His fingers often trailed over the bump in his head where the shunt had been placed. He knew the facts, the hows and whys. But I never went into detail about those breathless moments in the hospital, all those times his heart rate slowed and his breathing stopped. I never told him about the desperate phone calls to Duke or the long hours waiting for a call back. The shunt surgery had brought him back and he didn’t need to know how close we’d been to losing him.
When I look back on these days, I can see how much this week changed our marriage. I had lived an entire story that Matt never knew about. The lens through which I viewed Matt and the disease had irreversibly altered. I understood the seriousness of the disease in a way I hadn’t before when shielded by naivety and denial. But Matt didn’t have to change the lens through which he viewed the disease. And I was grateful for that, even though it meant our stories were no longer perfectly in sync.
I was grateful for anything that might protect the spark of real Matt that was still there.
One year ago today, I drove home with a heavy heart. But I knew we’d be okay. I knew some part of Matt was there, still blissfully unaware of the true viciousness of this disease, still fighting, still trying to win at fantasy football.