Chapter Eleven: Darkness With a Splash of Light
The nurses told me about a condition called ICU psychosis. When a person has been removed from reality for a length of time and put in a room with no windows, and only tubes, monitors, and people they don’t know, they lose touch with reality. Steve had a strong case of ICU psychosis. To reverse this I was told to play music that he loved, show him photos of our life together, and tell him stories of some happy memories we’ve shared. This would bring him back to the life he had known. As I sat and held his hand, hour after hour, I did all of these things. He would just stare off into space at something I couldn’t see and scream with fear. This new phase was in some ways harder than when he was asleep on life support. I still had no way of changing it, but now I could see and hear what he was going through.
The day before Steve was taken off the ventilator his Aunt Judy showed up unexpectedly in the ICU. She had driven from New Mexico the night before because she had a strong feeling she needed to be there. She brought her friend Larry with her. Larry had been in a terrible car accident years before and had been in the ICU for a while. He had also had numerous surgeries to reconstruct his face after the accident, so he knew all too well about hospitals and medications. Larry heard our concerns about the powerful drugs Steve was on. Even then, before he was brought out of sedation, we were wondering how his brain was handling the potent sedatives. Larry explained to us how he had been able to mentally navigate the drugs he was given while he was going through his ordeal. He assured us that Steve was the one in charge here, not the drugs. He said that while in his induced state he was aware of being in charge and learned how to find his way around. He told us Steve was doing the same. This gave us all so much comfort to know that Steve was not at the mercy of this experience, but was actually navigating his way through it.
Steve has always been good at navigating his way around any technical problem. He made his living as a computer expert solving very technical issues. He was very intelligent, so I had no doubt he was exploring his options and using them in whatever way he thought he could to benefit his experience. I clung to that thought and as it was turning out, I would need to for a while.
Now that he was awake and back in our world, I was watching what looked like out of control thoughts haunting him. I was praying he was the one still in charge even though it appeared he wasn’t. Each day the nurses would sit him in a therapy chair and I would play some of our favorite music, show him family photos from my laptop, and tell him stories about our life. He didn’t respond to any of it. He continued to stare into the room and cry out in horror. The extreme dose of prednisone he was on was like being on speed. His brain was always racing, so he wasn’t sleeping much. Hour after hour his mother, sister, dad, and I would take turns holding his shaking hands and try to comfort him. We were completely exhausted by the end of the day and each night prayed for Steve to find some relief. It was not going to happen anytime soon. The nurses told us all we could do was wait it out and let his brain clear up. We were told it could take weeks before he was able to calm down and be clear.
On the third day of the severe hallucinations, two nurses came into Steve’s room and told me they wanted to take him outside to let him get some sunlight. The sunlight would help his brain reset his circadian rhythm, which would help the hallucinations go away. They knew they weren’t supposed to do this, but they felt so bad for him that they would do anything to help him. They put him in a large therapeutic wheelchair, covered him in a mound of blankets, because he was always cold, and wheeled him to a side door in the ICU that said NO EXIT. Another nurse joined in and held the off limits door as Steve’s sister and I followed. The nurses were giggling excitedly as they broke the rules and chauffeured Steve out into the light of the warm noonday sun. The air had a sense of magic to it as the parade of giggling nurses with a man in a wheelchair heavily cloaked in blankets made their escape from the medical smells and sounds of a windowless dark world and into the warm embrace of a light filled, silent, blue sky.
We walked to the end of the short sidewalk between two buildings and stood breathing in the cloudless May warmth. I kept looking at Steve’s face to see if he was aware of where he was. His eyes were closed most of the time, but his face looked peaceful for the first time in days. I touched his calm face and told him to look at the mountains in the distance. Those mountains were mountains where we had picnicked and had summer adventures. He opened his eyes briefly and looked in the direction of the mountains and gave a faint smile. His sister asked him how it felt to be outside looking at the mountains and the sky. He whispered a soft, impassioned, “miraculous” then closed his eyes again as I watched a tear trickle down his face. Steve has always loved the outdoors. I knew he felt he was finally coming home.
After that, he wanted to go back in. He was very tired and sitting up was uncomfortable for him, so we made our way back into the ICU. He had had his first taste of sunlight in weeks. I was hoping it was enough to bring him some peace and rearrange his magnificent brain so the monsters would be quiet for a while.
The rare blood disorder that had threatened his life at the beginning of our time in Flagstaff was now under control. It appeared the chemotherapy was beginning to work. The prednisone was keeping Steve’s organs safe from further harm and he was off life support. Because of this new report, Steve was quickly readied for a new room; a room in the step down unit of ICU, a room on the second floor with a window so he could see the sun rise each morning and set each night. This would help him regain his circadian rhythm much faster. The nurses were pushing hard to get him a room upstairs with that important window and they wanted it to happen as fast as possible.
It happened at 10:00 the night after Steve’s outdoor adventure with the speed that would happen again and again through out our hospital journey. Before we knew it we were leaving the most critical part of critical care and moving to an upper floor. The higher the floor, the closer to home we were told. I was both excited and scared.