Widowish: A Memoir(18)

We were all upset about the house next door to us. It had been purchased by a developer months earlier, and construction turning it into a McMansion had not yet started. The house had fallen into gross disrepair with an overgrown lawn and backyard swimming pool that had been half drained and became more like a swamp. We all believed that this pool must have been where the infected mosquito came from. It seemed quite apparent. But because one can’t confirm or track the flight pattern of a mosquito, we were unable to prove any wrongdoing or press charges of any kind.

In the meeting, I asked the doctor, “Is the ventilator what’s keeping Joel alive?”

Her eyes met mine and, realizing my need for her to state the obvious, she said, “If we took away the machine, it’s unlikely your husband would be able to breathe on his own.”

“And if he can’t breathe on his own, he would . . . ?” I let my voice trail. I didn’t want to say the word die.

She nodded and simply said, “That’s right.”

Hal chimed in, “So, would you consider the ventilator to be life support?”

The doctor didn’t hesitate. “Yes,” she said. “That’s exactly what it is.”

We all looked at each other, stunned. In the throes of all the medical confusion and trying to figure out what was happening to him and why, none of us had fully realized it. Joel had been on a breathing machine before we left the first hospital. They used it to support his breathing, but at the time he was still capable of breathing on his own. With his body breaking down with something new every day, the machine was now supporting his life. Just like asking if he was in a coma, if Hal hadn’t asked that question, we wouldn’t have known.

Joel has brain damage.

Joel is paralyzed.

Joel is on life support.

It was clear to me that I had a decision to make about my husband. We left that meeting, and I took the rest of the day to process everything. This was my decision to make and mine alone. I wanted Joel’s suffering to end. I did not have the stamina to consider how I could have a life without him. It seemed so impossible. Who will I laugh with? Who will explain things to me the way that Joel does? Who will parent Sophie with me? Who will love me so unconditionally? Who will I spend my life with?

All I wanted was for Joel to overcome this. The MS. The West Nile. His suffering. In many ways, death was the only option, and it was time. I knew with absolute certainty this is what Joel would want. He would be relieved.

“Finally!” he would have said, laughing. “Seriously, hun. What took you so long?”

Now it was a matter of timing. If I had said to the doctor that morning, “Turn off the life support today,” she would have.

But it was my birthday. I did not want my husband to die on my birthday.

A few days later, it would be Halloween. Sophie was excited. She had her Snow White costume and plans with friends. I wanted her to have one night of fun before our world came crashing down.

So I chose the day after Halloween, as if it would make a difference, to end his life.

Hal, meanwhile, did not agree with my decision. He was angry and wanted answers. The following morning, he and I met with the other head doctor of the neurological ICU. This doctor made the first doctor we spoke with seem relaxed and casual. He spoke medically, with even less bedside manner. Hal was insistent. He thought they needed to try everything, explore all options, even though they already had been, for weeks.

“I don’t agree with Melissa’s decision! There has to be something you can do!” Hal challenged.

“There is no treatment for these viruses,” the doctor said.

“Well, I don’t want him paralyzed,” Hal said. It was as if he was realizing for the first time just how dire the circumstances were.

“But he already is,” said the doctor. Hal was turning paler by the second.

“Sometimes they wake.” The doctor continued, “It’s not pretty.”

“How can you say that to me? Do you have a son? Or a child? Do you?” Hal demanded to know. “Do you?”

I imagined a doctor saying something like this to Joel and me. What if this were Sophie? What if it were my parents the doctor was talking to?

The doctor shook his head. He looked Hal directly in his eyes.

“You do not want your son to wake up from this,” he said.

“But I do!” Hal cried.

“You don’t. If your son were to wake up,” the doctor said, “it would be a fate worse than death.”

Hal sat there, deflated and defeated. It took some time for us both to compose ourselves. We were sitting in the ICU. Business went on as usual. Nurses and doctors popping in and out with medications and gurneys and IV bags. There was sickness all around us. We both needed air.

Before we left the hospital, one of the nurses came to me in tears.

“I just want to tell you,” she said, “letting him go is the most loving thing you could do for your husband. You’re doing the right thing. I promise.”

I drove Hal home that day. Together we called Nancy from the car. She had been in the family meeting the day before, and even though she knew my decision, she was thinking that perhaps rehab was a good place for Joel. We could keep up the same visiting schedule, she had suggested; miracles can happen.

I did not want to be in this position. Of convincing Joel’s parents of the “right thing” to do on behalf of their son. But I was. We hadn’t heard Joel’s voice for weeks, but my sister reminded me of the emails he had sent his doctors when we got home from Mexico, each one a cry for help. I decided to share them with Joel’s family. This one in particular impacted them: