Widowish: A Memoir(17)

“Oh my God,” Jillian quietly said. “Poor Joel.”

She had been reading about West Nile and other viruses for weeks to try to get a sense of what was wreaking such havoc on Joel. She would then filter the information to me so that I could have an educated conversation with the doctors whenever there was something new to discuss.

Most people infected with West Nile virus do not develop symptoms. With a mild infection, a person may experience sore throat, body aches, and fatigue. At its most severe, the virus can cause inflammation of the brain and spinal cord, coma, and paralysis.

“OK. So what does that mean exactly?” I asked. I was calm, somehow, direct.

Once again, a doctor couldn’t look at me. I thought he was about to cry. I could see how hard he was trying to maintain composure. It seemed he drew the shortest stick in the group meeting that day, and he was the one who, reluctantly, had to deliver the news.

I looked at Jillian, who was facing Joel and crying quietly into a tissue. She ran her fingers through his hair.

I looked at the doctor and said again, “OK. So now we know it’s West Nile. What happens next?”

A part of me thought there’d be an antidote. A fix. Something that would make Joel all better. But another part of me, the part that was the most scared, knew there was no such thing.

The doctor stayed silent.

“OK,” I tried again. “Let’s say this was happening to someone you loved. What would you do? How would you move forward?”

He seemed to be working very hard on his answer.

Finally, he said, “Well, if this were one of my parents, I would consider that they both lived long lives. Lived nice lives. I would understand if the decision was made to . . . to . . . um . . .”

He didn’t finish his sentence. He didn’t need to. Because of my unexpected and recent education with viruses, I knew that even the most benign ones, like a common cold or flu, simply need to run their course. West Nile virus had run its course on my husband.

Earlier in the week, there was talk of moving Joel to a rehab facility. This would require a PEG and trach, which was a way to keep him alive. The peg was actually a hole they would make in his stomach and attach a feeding tube through. The trach stood for tracheostomy—a hole that would go through his throat so he could be permanently attached to a breathing machine. Currently, and for weeks, he had a breathing tube down his throat. The doctors all felt that the breathing tube was becoming dangerous this many days in, that an infection could develop and threaten the patient’s well-being.

What well-being? I thought.

Joel was right there in front of me. His hair was longer. His beard was full. He was warm to the touch, and I could feel his heart beating through the thin hospital gown. The whir of machines keeping him stable provided a soundtrack I could not get out of my head for close to a year. I held his limp hand and put it on my cheek and maneuvered between the ubiquitous tubes and put my other hand on his face.

I felt him holding on, waiting for me to let him go.





SEVEN

Decisions

Once we all understood that Joel had West Nile virus, we scheduled a family meeting with a hospital social worker and the doctor who admitted Joel—the same one who nonchalantly told me he was in a coma. As the head of the neurological ICU, she was there to answer our questions. She walked in flustered and ill prepared. “I’m sorry, I wasn’t even aware we were having a meeting this morning. What would you like to know?” was how she began. She seemed impatient, almost defensive, as if she thought we might blame her for some kind of medical failure on the part of the hospital and/or her staff.

She dealt with medical trauma every single day. My family was in emotional trauma, but her attitude made it clear: she didn’t know how to manage the care we needed.

We understood that Joel was paralyzed and had brain damage because West Nile virus had wreaked havoc on his central nervous system. His multiple sclerosis had made him susceptible to West Nile. His MS meds had stopped working, and the steroid infusion treatment he was on to boost his system made him immunocompromised. Which is why he wasn’t allowed to leave the house while they were being administered. The steroids made him susceptible to any kind of infection or cold. His body would not be able to fight back.

Nothing would make my husband better.

I thought about our backyard. It was one of Joel’s happy places. He loved tending to our rose bushes and tomatoes. He loved trimming the shrubs around the pool. He would roll around the wheelbarrow we got him one Father’s Day and fill it with lemons from our prolific citrus tree. But at the time of the infusions, all he would do outside is nap. Putter around. He knew better than to do his usual gardening, nor did he have the capacity to.

West Nile virus is commonly transmitted via mosquito, and being in our backyard proved lethal. We just didn’t know it at the time.

It took weeks for Joel to become symptomatic. Starting with his high fever all those weeks earlier.

Unbeknownst to me, while Joel was in the hospital, my neighbors in our little cul-de-sac had been furiously calling and emailing our councilman and the department of public health. That summer in Los Angeles, talk of West Nile virus was everywhere. Thirteen people contracted it, and one person had died. There were mosquito warning flyers up in summer camps, doctors’ offices, and even some supermarkets. In one of the first emails I had Greg send out to our friends, he mentioned that Joel had been tested for a variety of illnesses, one of them being West Nile virus. This was all my neighbors needed to hear. They all adored Joel and were concerned for our family. Our dog-loving neighbor, Roxanne, in particular, bonded with Joel every time he was out front, cutting back our abundance of roses. She would be doing the same in her front yard just a few houses down.