Chapter 13

JOE

After a week of lying in bed, we had a physical therapist come in to help me sit up, stand, and, eventually with assistance, walk. It was so excruciatingly difficult to do these simple things, but I knew that the harder I tried, the faster I could get the hell out of there (and eat, and see my kids, and avoid confusing the two), so after several failed attempts, assisted by a physical therapist and a walker, I slowly rose and emerged from my cell. I ventured out into the hall of the ICU and saw the picture hanging on the wall (shown on the next page).

Saliva began to pour out of my mouth. I was attached to the IV, but the suction tube was back in the room. Drool was running down the front of my gown. Whose idea was it to hang a giant photo of succulent fruit in the ICU hallway? Adolf Hitler?

The nurses were busy. It’s a chaotic whirlwind in the ICU. You get your vitals taken every hour, including overnight, so there’s not a lot of sleeping. When you do try to sleep between these night visits, the sounds are surreal. Other patients were always moaning and crying out in agony. I remember thinking, What is happening to them, and am I next? The amount of equipment that was dropped at all hours of the night in the ICU was frightening. It always sounded as if the Three Stooges were in the next room, knocking over instruments and heavy objects. My self-entertainment during this time was trying to picture each item that was dropped. (BANG!) Was that an automated external defibrillator? (CRASH!) A crash cart?

I finally understand “still life.”

And there were no doors, no privacy, just people constantly coming in and out, checking machines and vitals. There was not a lot of eye contact, and it seemed as if the machines were getting a closer look than the patient. I started to feel like I was no longer human. There was always a nurse there when I didn’t want a nurse, and never a nurse there when I wanted a nurse. I tried not to complain because it was like the TSA: you might have the instinct to be frustrated with the random search, but you can’t be too difficult or you will miss your flight.

I was a difficult patient. I didn’t try to be, but I just was. As a person who is used to being in control of her own environment, being immobile in a bed was another circle of hell in Dante’s Inferno. If I would have been running the place, each patient would have their own concierge. So, God sent me Joe.

Joe was a head nurse in the ICU. From the second he walked into the room, I knew he was the alpha dog. The top guy. The way he walked, the way he spoke to people, the way he handled everything with precision and skill, I knew he was in charge. I decided he was my nurse. I chose him. He didn’t know it, but he was my guy. My knight in shining scrubs. Joe was kind, but sarcastic and strong. He didn’t put up with any of my unrealistic demands, like noise-canceling headphones, but I could tell he cared. He met me halfway. It was tough love. I always liked guys who played hard to get. I couldn’t speak yet, but Joe understood my made-up sign language, and at the time, all I wanted was to be understood. Joe always knew what I was getting at, whether he agreed with me or not.

Even though there was no infection, and therefore no pain at the site of the surgery, my head was turned to the side, non-incision side down for days on end, so as not to irritate the healing wound. This position caused intense pain and stiffness in my neck. It was the type of pain that brings hot tears to the eyes when you try to move, but you know that moving is the only way to end the stiffness, so you’re stuck in a catch-22. The mild painkillers added to my IV did nothing. It was not a good idea for me to take any kind of morphine or sedative because of my difficulty breathing. I was actively involved in not dying. Staying alive was hard work and I needed to be all there.

I wanted a heating pad to put on my neck to alleviate some of the excruciating neck cramping. “We don’t have that,” I recall Joe saying with enormous attitude and maybe an eye roll, as if I were asking for a glass of champagne and a shiatsu treatment. Yet the next time he entered, Joe put wet towels in the microwave and then wrapped them around my neck. It was heaven.

I learned to complain without words. Even though I couldn’t really talk, I employed exaggerated nonverbal communication in the style of Kabuki theater: When I was angry about something, I would open my eyes (or I should say, my eye) wide and look at Jim, and he would say, “Look, Jeannie is yelling at me!” and I would be frustrated. We had spent the last fifteen years talking to each other about anything and everything, and this recovery was putting a huge strain on our communication skills. Jim felt helpless about my suffering, and I apparently guilt-tripped him with my tortured glares every step of the way. Joe seemed to understand what I was getting at, so Jim was happy to step aside and abdicate his role as “Jeannie’s sole caregiver” to my new ICU husband, Joe. I missed having normal interactions with Jim, but the “Jeannie can’t speak” guessing games weren’t really working out for us. There was a lot of tension between Jim and me.

Since I couldn’t speak, my brother Paul brought me a clipboard where I could write notes with a black Sharpie, my writing instrument of choice. Finally, I could communicate my needs to Jim without hideous facial expressions. With great effort, I would scrawl out a page of detailed instructions and eagerly show it to Jim, or whoever was unlucky enough to be on that shift. I soon discovered that due to my vision, balance, and coordination issues, no one could read my writing. At one point, in frustration, I threw the clipboard across the room. A C-shaped chunk broke off the plastic clipboard. When Paul returned, for a moment he thought I had taken a bite out of it.

“No, she threw it,” remarked a frustrated Jim.

“Don’t do that anymore, Jeannie,” said good old Paul.

I perceived losing my voice as similar to a pianist losing the use of his hands or a marathon runner being confined to a wheelchair. I wasn’t a singer, but I used my voice for everything, not the least of which was yelling at Jim and the kids. I was a director, and you need to speak to be a director. Also, as a writer, I needed my voice. Jim and I had long conversations about comedy almost every night. Part of our process of writing was saying the jokes out loud. How was I going to write with Jim anymore? We talked about the kids, discussing all the intimate details of their emotional, social, and academic lives. We talked to each other about our hopes and dreams for the future. We argued and made up. I told long, elaborate stories to our kids when they couldn’t sleep at night. Each of them had a character in a story that they knew was them, except the characters lived in a castle a long time ago and far, far away. They were princes and princesses with names like Stone, Adoria, Nala, Michaelangelo, and Bartrick. (I was less creative with the younger ones.) They had magical powers and went on adventures with their flying horses. Who else could tell them these stories? I used to take my voice for granted and now it was gone. I was lost without it. I was told it would come back, just as the ability to swallow would come back, but no one could give me a time, a goal to reach, and I couldn’t even throw the clipboard anymore.

Joe was the only one who could understand my silent ravings. He was a skilled lip-reader. He always knew what I was getting at. I would look pleadingly at Joe and mouth-beg to take a shower, which of course I couldn’t. He reluctantly asked me if I wanted my hair washed, and I tried to nod. Affirmative. He seemed less than thrilled with the response. It was a very busy ICU, but I didn’t care about anything other than my own comfort, which was an utterly new feeling for me. The thought of getting my greasy hair with dried blood patches in it washed was the bit of cheese this lab rat needed for the motivation to run through the maze of my horrible day.

At one point before this, during one of the days, hours, or agonizingly long minutes in the ICU, Leslie had come by and said, “Let’s do something about that hair!” She got a brush and a hair tie from God knows where and went to work on the knots. I remember watching the shining whimsical stone with a sunburst around her neck dangling and dancing while she worked on gathering my matted tresses away from my bandage into a cute side pony. I’d remembered it from our first meeting. Looking at her necklace was the most entertainment I’d had thus far. Seeing something unique and interesting instead of the depressing surroundings that had become my world was the highlight of my day. Because I was so out of it at the time, I was more grateful for that necklace than for the fact that Leslie, probably in the middle of coordinating and assisting in ten other brain surgeries, would take the initiative to come into the ICU to “do something about that hair!” The important thing about that moment was that it stood as the first time since I’d woke up from surgery that I started to feel something that could be described as gratitude. In my barely conscious state I’d experienced being grateful for the shiny object instead of Leslie’s compassionate sacrifice, but I was so thankful. My black, resentful heart grew a little bit. Flickering with a tiny spark of light.

Like most good things, that feeling was quickly corrupted. After getting that level of attention and service, I now felt entitled to ask Joe to be my personal beautician when he had a break from keeping other people alive. I was more grateful, but still selfish. I wanted my hair washed.

When Joe finally entered my room for this highly anticipated event, he opened a packet of “dry hair wash” and put a cap over my head. There was some kind of itchy powder in the cap that Joe unenthusiastically massaged into my scalp. I don’t know if the powder was itchy or my scalp was itchy, but the experience did not live up to my expectations even slightly. I guess I envisioned an exquisite roman bath fit for a queen, or at least water. Regardless, I must have let Joe know it was kind of a letdown because I didn’t come out as appreciative as I should have after begging him all day for the coif service. Even in my compromised state, I was perceptive enough to figure out that Joe, and probably all the other nurses, thought of me as high-maintenance. Not so much as a smack-my-assistant-with-a-cell-phone diva, but more like a crabby old lady who begged for attention and then just complained when she got it.

Once when he was changing my IV, he extended my arm and looked at me and said, “You got good veins, I’ll give you that.” That backhanded compliment was the nicest thing he’d ever said to me, and it made my day. He noticed my good veins!

Really? I bet you say that to all the girls! If I had been in seventh grade, I would have doodled that phrase in my math notebook for hours with “Joe” written in bubble letters surrounded by little hearts.

Mount Sinai Department of Critical Care