The Neuro ICU Waiting Room

The waiting room in the Neuro ICU is intense. Everyone in there looks strung out, like some disaster has befallen them and they haven’t bathed, eaten or slept in days. Which, to be fair, is probably true. They are there because someone had a stroke, or a seizure, or a fall, or a little cancer in their brain like Mark. No one’s sitting there hoping that the knee replacement went okay. They are there, sitting in sheer terror, wondering if their loved one will emerge the same, or alive.

There are many hospitals in our city. The one we are in is the main trauma hospital. It hasn’t fully caught up with more cushy models of newer hospitals. When you leave the flashy lobby and find your way into the recesses of the hospital, it’s pretty bare bones. A few uncomfortable couches and chairs. No magazines or books. A TV without a remote control. Armed cops in the hallways guarding prisoners who’ve come in the medical treatments. The main thing it has going for it is the beautiful view of downtown. And a medical community with a great reputation, which is all I cared about.

The first time I sat in the Neuro ICU waiting room was the night of Mark’s surgery. The main surgical waiting room, a windowless basement affair, had closed up shop for the night. One by one throughout the evening, cases were removed from the monitor until Mark was the last case listed, with “In surgery” still indicated. My parents and I took the elevator up to the 9th floor to wait in the Neuro ICU for the surgeon to emerge and hopefully tell us everything went well.

The waiting room was empty when we arrived. A stack of blankets and pillows was wedged into a nook near the windows. I grabbed one of each and found the light switch to darken half of the waiting room. I curled up on a two-seater plastic chair to try to sleep.

Soon, a woman came in talking at full volume on her phone. My dad gave me a look, and my mom gave my dad a look, and I said, “It’s fine, dad.” He waited a few minutes, and then went over and said, “Excuse me. My daughter is trying to sleep. Her husband is in surgery and we’ve been here for hours. Could you talk more quietly?” She gave a half-second stare with a pregnant pause, and said “I’m sorry about your daughter, sir. My daughter is unconscious and has been here for 5 days. I’ve been sleeping here for 5 days.” It was her stack of pillows and blankets we had pillaged unintentionally. My dad tripped over his words to apologize and wish her and her family well. We settled back into our respective waiting room activities.

Over the next days and weeks, I met some wonderful people in that room. That woman was one of them. She was absolutely distraught. Her daughter, a 36 year old mother of one, had suddenly collapsed one night. She was not improving. Her mom went throughout the day went from sleeping to crying to arguing with the nurses and doctors about her daughter’s medical care. She actually almost never went in to see her daughter – she said it was too painful to see her on a ventilator. One day, she was told her daughter would die and that it was time to take her off life support. A a dozen family members came into the waiting room to wait, and to say goodbye. I hugged her and told her I was so sorry as she sobbed “That’s my baby they are talking about!” She was angry. She wanted more to be done. The next day, she was told they could operate on her daughter to try to stabilize her, and this mom was again raised up on a tiny balloon of hope. By the time Mark was discharged from the unit, 21 days later, she was still hoping and praying.

I made a dear friend in the Neuro ICU waiting room. Annie was there everyday, in her blue sweatshirt and shorts. Her mom, in her 70’s, had fallen and hit her head. A scan revealed a benign tumor, but her platelets would not stabilize. Everyday the doctors tested and tried new things, but nothing would stop her body from destroying the platlets that they kept giving her. Her dad, a local cop, would come in between shifts, worry lines etched on his stern face. “What am I supposed to do?” asked Annie, who lived out of state and had a family of her own to take care of. “What am I supposed to do?” asked her dad who held down three jobs. Annie taught me how to arrange the chairs for the most comfortable nap. I brought Annie food when she wasn’t eating. When the ENT surgeon rounded on Mark, Annie was the first person I told what I had heard. Stage 4, rare, aggressive, poor prognosis. “This is so fucked up,” she said. We said that a lot to each other over the weeks. We texted each other late at night and saw each other the next morning to do it all again.

In a way that is difficult to convey, there was a beauty in the starkness of what life became during those weeks. A tiny community deeply bonded together by trauma showing us exactly how powerless we are. Every story in the Neuro ICU waiting room was distinct, yet our fears were held in common. We didn’t know where the line was between life and death for our loved one. We had to confront questions about quality of life. We had to learn patience or we’d fry our brains in anxiety and fear. We had to hold on tight to each other, riding the waves that came ceaselessly on a dark horizon.