As soon as I walked into the doors of Tisch NYU, I knew that Tim was in good hands. His nurses greeted me at the entrance of the room before he even arrived. They hugged me. They called me a hero (I’m not sure I am, but it was nice). For a little while, they made me feel like everything might be ok. I told them who I was. A visibly pregnant one instinctively touched her round belly when I told them the ages of my children. For the next week, we were all cared for by a compassionate, caring, and highly skilled team of professionals. Tim received the best care we could have possibly asked for.
One thing that Tim identified most strongly with was his intellect. Not in a boastful or arrogant sort of way, but in his passions, his communication, his interests. Tim was a man who would stay up late watching academics solve complex math equations over YouTube. He read dense scientific studies for fun. He was a physicist, a philosopher, a poet. He expressed himself through complex, rambling writings about the nature of time and space. Any political conversation could turn into an intense and in-depth debate. His brain would turn on at 1am, as he sat in bed, keeping me awake with deep philosophical rabbit holes he eagerly explored. Tim was brilliant. In the words of a friend, his brain was a “national treasure”. He was a literal genius.
In my own work as a music therapist, I have worked with people throughout the neurological spectrum. My work with people with profound developmental disabilities, catastrophic brain injuries, late stage Alzheimers, would send me home with questions about the nature of life. What is life? What makes a life worth living? Saving? Where is the threshold we cross that changes this? Who can make such a judgement? How do we make these choices for fellow human beings? How can we not?
Tim always feared dementia. He often expressed paranoia around the concussions he sustained as a young football star. He didn’t want to loose his cognitive functioning. He didn’t want to become a shell of who he was. He expressed on several occasions that suicide, physician assisted or otherwise, was what he would want in such a situation. Decades from now. When we were to be old together. If it ever came to that.
So in that week he spent in the in-between, I needed to know about his brain. I needed to know if the interventions and surgeries, the pain and suffering on his part, were worth it. I needed to know if Tim was still in there…because I suspected he was not.
But the thing with Grey Matter is that it leaves so much grey area. Because how damaged must a brain be to deem it unsalvageable? At what point can we determine that a life is no longer worth saving? How could we know what the outcome would be? What if Tim made it…but lost himself, everything that he was, in the process? What if he came back a deeply damaged, but very much alive, human being?
Would he want to live? (Would I want to see him live like that?)
I thought about these things incessantly. Because, as his wife, I had to make the choices around these things if he could not.
Tim’s neurologist, Dr. Aaron Lord (quite the name), was a competent, kind, and highly direct man. On our first meeting, he asked me about Tim and I’s spiritual beliefs and what we believed happened after death. I regaled him with our Secular Humanism and wonder with the Universe, thrilled to be able to share our belief system with someone who cared. He was feeling me out.
I watched him closely when he performed his status checks on Tim. For any signs of change. Of progress. Any indication that Tim could possibly reemerge. I watched his eyes in the glances he would give his assistant. I would watch for him the the hallways and jump to attention the moment he came into my presence. He was the man who would hold the most important pieces of this puzzle.
Tim’s body was incredibly sick. His liver and kidneys were failing. He was on 24/7 dialysis and his skin was a putrid shade of yellow. A mechanical implant worked on behalf of half-dead heart muscle, the aftermath of a 100% blockage of his LAD. (He would have been THRILLED to know he had become part cyborg.) Even on his best days he was touch-and-go. So it took him until May 21st to be healthy enough to be unhooked long enough to get an MRI.
I had originally planned to send my parents home with my children that day, to get the kids out of the city, to give me some more space to be with Tim. We woke up that morning and I changed my mind. I might need them close after all. I went to the hospital during the morning rush hour. It was Sunday, and unlike the previous mornings the train was quiet. I went to Tim’s room first thing, as usual, to talk to him, give him hugs and kisses, to check in with his staff. They were confident that he would be able to get the MRI that day, they said. He would go in as soon as he could. We would get our results in a few short hours.
So we waited. I colored in the coloring books friends had sent me. I paced the halls and walked in circles. I sat with the family in the same corner of the small waiting room we had claimed as our own. Friends came to visit. We waited some more.
Tim was brought back from surgery to re-implant his heart device, and I went into his room to turn his music back on and greet him. I stood in the corner, overwhelmed, nervous, fumbling with the phone, when the Cardiologist came in. Dr. Zackarey with his kind, wet eyes, and permanently somber expression. I broke down when I saw him appear next to me. He took my arm, and gently asked me to come to the conference room.
We gathered with Tim’s team. His mother, father, sister, brother, and myself. Dr. Zackarey and and Dr. Lord.
Dr. Lord opened the conversation immediately, ” We have gathered in the conference room, so I know that you all know this is a difficult conversation. Tim’s cortex is profoundly damaged. If he were to live, he would live in a vegetative state.”
A moan rose out of my belly and filled my head with sound. My entire body went numb. I doubled over in pain. Tim’s mother started to cry, and I covered my ears to block the noise, her pain being overwhelming to me in that moment. She asked if anything could be done, the question a mother must ask, and I snapped at her. Because I was terrified of the weight of this decision. The consequences of this decision. The people I had seen in nursing home beds for decades of their lives. The human shells of people that had been, before their accidents, their stokes, their heart attacks.
The things that happen to people.
The things Tim never wanted to happen to him.
But the prognosis was clear. Tim’s beautiful, brilliant brain was gone.
And so on May 21st 2017, I made the most difficult decision I hope I ever have to face.
I made the choice to allow Tim’s life to end.
His family understood. They agreed. Because they knew him too.
So they went into the waiting room to tell the loved ones who had gathered. And I went to see Tim.
I walked into the room to see a circle of residents surrounding Tim’s bed. The looked up in surprise, then sympathy. “Do you have any questions?” the attending asked me gently.
“What are the laws here? Around death.” I was flat and cold.
“I’m not sure I understand. You can remove your husband from life support and we will do everything we can to keep him comfortable in the process.”
“So you can’t just help him die? I don’t understand why I can put my fucking dog down but I can’t put down my husband.” A dark, brittle laugh came out of my throat. Because I was hurting so deeply. Because the whole situation was so fucked up. Because I didn’t want Tim to suffer in any way. I wanted to make everyone as uncomfortable as I was, and I just couldn’t keep it together any longer. And then I started to sob. The residents quietly filed past me, expressing their condolences with their eyes. The attending hugged me close and said “We will do everything we can do to keep him comfortable.”
I walked out to the lobby, to the loved ones waiting, and told everyone I was getting the fuck out of the hospital. We would give Tim a couple days, so people could say goodbye. (In retrospect, I would have given him longer. There were so many people who wanted to say goodbye.) and my dear friend, Molly came with me for a walk.
When Tim and I were younger and living in the Boston area, we went to New York regularly, every 8 weeks or so. One place we loved to visit with friends was a rice pudding shop in SoHo. So Molly and I stepped out into the brilliant May sunlight, and I decided to get myself some fucking rice pudding.
So we started to walk. Down the East River, past middle aged men smoking pot on a bench, past bicyclists and runners and dog walkers. Across a footbridge and past a mother yelling at her toddler. Past friends playing basketball and couples drinking wine, and couples making out and couples arguing in public. Past murals and billboards and overflowing trash-cans. Down St. Mark Place where we had bought a mango wood vase for my mom that smelled like woodsmoke. Past wig shops and beauty parlors, and around a corner where my mom and best friend Matt were waiting for me.
And we got some rice pudding, and brought it home to Brooklyn.
And I hugged my babies with all the love in my heart.
And I realized that life was just going on. On the worst day of my life. The worst decision I could possibly have to make. Life was just going on. And everyone else out there in the world was having a day too. And the sun was shining and the weather was nice. And maybe it was a great day, or maybe it was even worse than mine, but everyone was just out there. Living their life. Because that’s all you do until the day you die. You just live. All together, billions of us on this little planet in an infinite Universe. And I realized that, there, on that worst day, Tim’s life was coming to and end. And my life was coming to an end. But he was going to die, but I would have to live.
And so, on May 21st, I remind myself that I am still here to live. I choose that.