Widowish: A Memoir

by Melissa Gould

  Jillian turned to face him; we both perked up. He looked around and settled his gaze at his feet.

  The doctor struggled. “He, um . . . They came back positive for West Nile virus.”

  “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.

  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:

  Dr. K—My wife and I are very concerned. My legs continue to weaken and I feel I’m deteriorating rapidly. I can barely feel my feet and my balance has become a significant issue. I’ve also been experiencing numbness from the waist down that I never had before. Every day has become challenging. I’m experiencing severe leg, foot, and core problems and my life is being impacted in ways that are frightening.

  We all knew that Joel had been suffering, but hearing it, seeing it spelled out in his own words, eliminated any doubts.

  In many ways I was relieved. I was eerily calm. Where nothing but confusion existed for weeks, things were now crystal clear. I was ending Joel’s life.

  I now had to tell Sophie.

  EIGHT

  The End

  It was dark outside, and the conversation took place in our kitchen. Sophie and I agree on those details.

  Sophie thinks the conversation started when she asked me a question about Joel to which I answered, “We are taking him off of life support on Friday.”

  I believe that I started it by saying something like, “I need to tell you what’s going on with Daddy.”

  My tone was casual. We also agree on this. I didn’t want Sophie to see that I was bereft, and I didn’t want to be overly dramatic. The situation in itself was dramatic. I didn’t want to start with, Soph, we need to talk about something serious. Even to our thirteen-year-old, that was stating the obvious. Nor did I want it to feel light or unimportant. If there was a healthy or “correct” way to tell your child that her father was dying, I wasn’t aware of it.

  “You know Daddy’s in a coma.” Sophie nodded yes. “And it’s very sad because the doctors think that if he ever woke up, he wouldn’t be the daddy we know. He wouldn’t know me, he wouldn’t know our house. He wouldn’t even know you.” That’s when my voice started to crack. I wanted to grab her and hold her and let her cry and scream in my arms. But she was stoic, just like her dad; so I tried to be, too.

  “Would he be in a wheelchair?” she asked.

  “Yes, he would,” I said. “But he wouldn’t be able to push it.”

  “So who would?” she asked. “Us?”

  “I don’t think Daddy would like either of us having to take care of him that way.”

  She nodded.

  “Someone else would have to,” I said. “Like a nurse. Someone else would have to do everything for him. He wouldn’t be able to eat on his own, or brush his teeth, or go to the bathroom.”

  She was taking it all in, trying to comprehend these impossible words I was saying.

  Joel was not a “weekend” kind of father. He was hands-on. He and Sophie were deeply connected. He was in awe of her kindness, her intelligence, her talent. I could go on. We were both besotted with her.

  “So would we put a ramp in the house?”

  This is when I started to cry. I tried to maintain my composure, which wasn’t difficult as I was totally numb. I couldn’t believe I was having this conversation with our child. I couldn’t believe my husband was the person I was talking about. Her father. Our family.

  “The thing is, I don’t think Daddy will be coming home.”

  In an instant, I saw something in her face change. It was as if she went from the innocence and bliss of childhood to the shattering realities of adulthood. Tears welled up behind her eyes.

  I want to say that I held her and that we cried and wailed together. It’s possible that we did. Neither of us remembers.

  Eventually I told her the plan for the next few days.

  “So I know Halloween is in a few days. You can still go out with your friends and dress up. But the next day, in the morning, we’re going to say goodbye to Daddy.”

  “Will I go to school that day?” she asked. Which killed me in a way I can’t explain. She was a rule follower, a good person, like Joel.

  “No, Smoosh. You won’t have to go to school that day or even the following week. We’ll see how you’re doing after that. You have the week off for Thanksgiving coming up, too, and we’ll just take it day by day. Give you the time you need, OK? Your teachers and everyone, they understand.”

  When Joel was first moved downtown, I set up a meeting with the on-site therapist at Sophie’s middle school. She was new that year; she was young, and very kind. I wanted her to know what was going on so that if Sophie needed a quiet space to retreat to during the day or sim
ply someone to talk to—someone other than me—about what was going on, she’d be able to. The therapist also acted as liaison with Sophie’s teachers, all of whom were compassionate and devastated by what was happening at home with one of their favorite students. They checked in with me frequently and were on the growing list of people who were getting the email updates.

  Sophie accepted what I told her. Just seeing Joel in the hospital for those three weeks—which sometimes seems like three years, and alternatively, three minutes—was scary for her. She seemed to understand that there was no life left for Joel to live. At some point that night, we got into my bed and snuggled. Together we cried.

  There was a game show that Joel and Sophie liked to watch together when she was younger. For the life of me, I could not understand how the show worked. It had to do with suitcases containing money, a hidden banker, and contestants guessing which suitcase had the most money in it, which could potentially be their prize. At 7:30 p.m., after a bath and before books, they’d watch a half an hour of TV. I can still hear them shouting, Wheel! Of! Fortune! Or doot-doot-doing to the theme song of The Simpsons. I didn’t have to be in the same room to hear Sophie’s giggles or know that Joel was smiling as they sat smushed together on the couch. He loved this time with her, and I loved that they had their routines.

  Sometimes as they were watching their show, I would walk through the room and mutter, “I really don’t get it.”

  “Hun,” Joel would say with a laugh, “it’s so simple. There are twenty-six suitcases, and they’re trying to guess which one has the most money in it. Then the banker will make an offer that could be more or less than what’s in the suitcase. That’s the risk of the game!”

  “But who’s the banker?” I’d want to know.

  “It doesn’t matter who the banker is!” Joel would say, exasperated.

  “Just watch and you’ll get it, Mom! It’s not that hard,” my third grader would say as she and Joel shared an eye roll.