We didn’t stop kissing the entire few days he was in Seattle. We were giddy with the fact that we were together. That we could hold hands and kiss and spend hours on end talking about life in a way that we never had before. Joel confessed that he was ready to make serious changes in his life, a life that he wanted to spend with me.
My world was rocked when Joel showed up in Seattle, and it was good that he left to finish up the tour. It gave us both the time we needed to sort out what was transpiring.
While I really loved Seattle, I wanted a TV writing career and to start a life with Joel. I knew that meant living in Los Angeles. When the Anthrax tour ended months later, Joel bought a one-way plane ticket to Seattle. Together we took our time driving my old BMW down the coast and back to Los Angeles. By the time we arrived, we were a bona fide couple.
In the ICU, I held Joel’s hands, which alternated between freezing and feverish. I tried rubbing his feet with lotion, because they felt cold and dry, but the doctors stopped me from putting socks on them due to a concern that they would deregulate his already fluctuating temperature. Every day I was granting permission for another test, approval for yet another doctor to assess him, all while trying to make sense of what was happening. I wanted to ask Joel, no, beg him, What should I do?! I was afraid of making any decision for fear it was the wrong decision. I was trying to manage his care in the hospital and protect Sophie from the full extent of what was making her daddy so sick.
Our friends and family were scared and worried for us. I gave Joel’s best friend, Greg, the task of updating a small but close group of friends so that I wouldn’t have to answer every phone call, text, and email.
After just four days, the doctors told me that I should move Joel to the hospital where his MS team was. Because the diagnosis was unclear, so was the prognosis. The prevailing thought was that this was perhaps something to do with Joel’s MS and/or his new medication. It became evident that while this hospital provided full-service medical care, they had done everything they could for Joel.
But moving Joel meant a commute to downtown LA. It was a logistical nightmare. How would I be able to be there every day and be available for Sophie? Why couldn’t this hospital help him? Nothing made sense to me.
I spoke to Joel’s dad about the move. Hal liked to tease that I never wanted to stray too far outside of the valley. “Melissa,” he said, “I agree with the doctors. I know it will be tough for you, but let’s move Joel downtown.” Hal meant that as a joke—he was optimistic, but I wasn’t.
What lay ahead was fraught with uncertainty. There was tremendous mystery surrounding Joel’s condition. Cultures for a variety of viruses had been taken, and all of them came back negative. While they supported and encouraged it, the doctors were also concerned that he may not survive the transfer to the hospital downtown.
I called Joel’s sister, Andrea.
“You really should come down here, sis,” I told her. “Your brother is in bad shape.”
She seemed shocked. “Really? Dad said I should wait. He said Joel’s going to be fine in a few days, and it would be more meaningful to come when he’s home.”
I lost it. Tears started pouring out of my eyes. I yelled, “When he’s home?! Andrea, I don’t know when he’s coming home! I don’t know what shape he’ll be in when he’s home! If he comes home! Why would your dad tell you Joel’s going to be fine—that’s not what they’re telling me!”
I felt very alone. Was Hal in denial or was I overreacting? As Joel’s wife, I was privy to Joel’s struggles. I had only just reached out for help recently. People, even close family, didn’t understand the extent of how the MS was affecting Joel . . . and us as a couple.
“I can’t walk, I can’t shit, I can’t fuck,” Joel would lament. “What’s the point of living?”
As I struggled with everything that was going on, Ellie had offered to call the rabbi. “This is what she does,” Ellie insisted. “When someone gets sick, you let the rabbi know.”
Sophie’s bat mitzvah had been only a few months before, so I felt very comfortable with Rabbi Hannah. Still, as much as I wanted to embrace my Judaism, particularly around the bat mitzvah, I had grappled with the realization that after all of it—the joyous weekend of bat mitzvah–related family activities, as well as the months leading up to it—I was simply Jew-ish. Outside of my liberal and cultural connection to Judaism, I just didn’t connect. But I knew Joel would have welcomed a visit from the rabbi without hesitation.
Judaism was always a part of his life, and it was important to him. He grew up in a Reform Jewish home, went to temple, celebrated and understood all of the holidays. I knew exactly where in the closet he kept his talit—a prayer shawl that men wear on special Jewish occasions. It was on his shelf of prized possessions, next to his Big Lebowski bobblehead and the rogue fly baseball he caught at a recent Dodgers game. That was one of the best days of Joel’s life. The ball came fast and unexpectedly in his direction, and he caught it barehanded and effortlessly.
I said to Ellie, “Sure. If you want to call the rabbi, go ahead.”
The next day, Rabbi Hannah came to the hospital. I was crying and hovering over Joel when she entered the room. Greg and Hal were watching the Dodgers in a World Series playoff game.
“Turn on the game!” Our friends were calling and texting me. “He’ll want to see it!” They weren’t wrong, he would want to see it. His beloved Dodgers hadn’t won the World Series since 1988. It seemed possible that they would go that far again. The game was on, but Joel had no idea.
I asked for some privacy with the rabbi.
“I don’t know what’s happening to him,” I cried to her.
Because we didn’t know how things got so bad so quickly, the doctors couldn’t predict what recovery might look like. But the prognosis wasn’t good. They started to use percentages about his recovery. They would say things like, “It’ll be slow, but he could make a fifty percent recovery. Maybe more.” Math was never my strong suit. But even I understood that the chances for a full recovery were low. Especially because Joel was admitted at less than 100 percent capacity.
“I know this is difficult,” Rabbi Hannah said. “We are all praying for him.”
“I appreciate that.” I was comforted by her presence, but I struggled with how to tell her my most recent thoughts.
I looked at Joel: his eyes were closed, he was wearing a hospital gown, the ubiquitous tubes were monitoring his vital signs.
Finally, I confessed. “I’m just not sure we’re all praying for the same thing.”
I didn’t know what I was praying for anymore. Joel’s recovery? To what end? I hadn’t heard his voice or felt him respond to my touch in days. Joel was tired of living with MS. He had felt compromised every day of his life for the past ten months. He was worried and lived in fear of losing his dignity. I wanted him whole. I wanted him as I had always known him—vibrant, alive, healthy.
But saying that out loud, admitting that I wasn’t sure what I was praying for, I was afraid I would be struck down by God on behalf of all Jews and good people everywhere. Or that I would at least feel some judgment from the rabbi.
How can I not be accepting of prayers for my husband’s recovery?
How can I not be accepting of people wanting Joel to get better?
Rabbi Hannah took my hands in hers. “Melissa,” she said, “what we are praying for is Joel’s complete and full recovery.” I nodded, wanting to believe that a complete and full recovery was even possible.
My tears were flowing when I whispered, “And if that doesn’t happen?”
She looked at me and said, “Then we pray for whatever is in Joel’s best and highest good.”
I took in those words carefully.
There was no reproach. No shock. No criticism.
Those words opened a door for me. I was finally able to exhale.
FIVE
Quality of Life
I gave the OK to move Joel downtown. Hal and I followed
the ambulance during the transfer, and my best friend of twenty-five years, Jillian, met us at the new hospital.
I asked the head of that ICU, “Is my husband in a coma?”
“Well,” the doctor said, trying to explain, “I mean, coma is an umbrella term. He’s nonresponsive and noncommunicative, so yes, you could say he’s in a coma.” This didn’t seem to faze her, but her nonchalance left me in shock.
My husband is in a coma.
I turned to Hal. “Did you think he was in a coma?”
“No, but I think he’ll be OK. I think they can help him here.”
Hal’s optimism was admirable. Whenever I looked his way, he’d be smiling, hopeful. Or maybe it was some level of denial that Hal used to cope. I wasn’t wired that way.
Although this was a different hospital and we were dealing with the same dire circumstances, it did feel hopeful that Joel’s MS specialists were here. His doctor was able to rule out that certain viruses known to be related to MS and the new meds that Joel had been taking were causing this coma. I was happy to have Joel under the watchful eyes of his team. These doctors knew him as a person and not just as a patient. They were familiar with his case, which gave us some confidence that maybe we would all come out of this slightly less scathed.
Sophie seemed OK. I tried to minimize any worry that I was feeling so that I wouldn’t transfer my fears to her. It’s not that I was holding back, but I had nothing concrete to tell her: “Daddy is in a coma, which means he’s resting. His body is working really hard to fight off whatever is making him so sick.”
“But he’s going to be OK, right?” she’d ask.
“That’s what they say. It’s hard to know. It will be a slow recovery.”
She took that at face value. I also didn’t bring her to the hospital often. She didn’t like being in the ICU, and I assumed visits were traumatic. Joel was surrounded by people who were very sick. Their ailments were visible. They were able to communicate their pain and discomfort. Joel wasn’t.
Joel was also younger than all of the other patients by at least twenty years. He still had his dark and full hair, and his beard was growing in. He did not look like he belonged. But there he was. Tubes in his mouth, arms, and hands.
It had been over a week since I took him to the emergency room, and yet we didn’t have more information. He had another MRI. A brain angiogram. A spinal tap. Several EEGs to monitor brain activity. More blood work. More cultures. The doctors kept asking me if Joel had a rash recently. They continued to circle the idea that this was a virus. But which one?
They ruled out anything bacterial, which meant antibiotics would not have helped. They ruled out cystic fibrosis. His liver function was normal but his brain activity was slow. Every day was another educated guess about his condition, and while I tried to stay positive, it was difficult. Joel was in a coma. If this was a virus, then there was no treatment. What they were doing was supportive care—keeping his lungs clear and feeding him. There was no specific infection they could treat. At this point, Joel’s MS doctors checked in daily, but they took a back seat to the plethora of specialists who were all trying to figure out his mystery illness, which seemed to come from a yet-to-be determined virus.
I was inundated with calls and emails, and I had nothing definitive to share. I was waiting for the doctors to figure out how to make him better. I assumed they would.
My dad and Elisabeth were staying with us, which was helpful in every way. As glad as I was that Sophie was getting some grandparent love, I needed some of it, too. I went into their room one night while they were in bed watching TV. I sat on the floor at the foot of their bed and started to sob.
“I should have taken him to the hospital sooner,” I cried. “I didn’t know what to do. His fever was so high! But then it would come down when he took the Tylenol, so I thought he’d be OK. It was like that for days.”
“You did the best you could,” Elisabeth said. “Don’t beat yourself up!”
“Really,” my dad echoed. “Joel’s in good hands. You couldn’t have done anything differently.”
But it all played in my head over and over. He had a high fever. But then he’d feel hungry and eat something. He was up. He was walking around. Then he’d get back in bed with a fever. We were laughing, telling jokes. I couldn’t make sense of any of it.
Sophie’s eighth grade class had made some get well cards, and I taped them to the machines around Joel’s bed. Ellie’s husband had visited Joel and brought in some family photos he put on the bulletin board. Joel’s friend and business partner, Ben, came to visit one day and was astonished that I wasn’t playing any music.
“You gotta bring some tunes when you come back,” he said. “It’s Joel we’re talking about. Music will help him!”
I couldn’t believe I hadn’t thought of that myself. So the next day I brought Joel’s iPod and hooked it up to some portable speakers. It was a great idea. All the doctors and nurses wanted to be in his room. We were vibrant and young. Joel still looked handsome.
My parents were able to join me at Sophie’s talent show. They sat a few rows in front of me while I put on a brave face and sat in the back of the middle school auditorium. Sophie wanted to surprise Joel and me with her role. She initially downplayed it and said she didn’t have much to do in the show, when in fact she was one of the masters of ceremonies. She was onstage most of the evening—confident, happy, and proud of herself.
I was entirely distracted. I kept thinking, Joel should be here. What is happening to my husband? I miss him!
I was also watching my phone. I was waiting for a call from our internist. He was our family doctor of the old-school variety—patient, thorough, and genuine in his concern. He had been in regular contact with Joel’s doctors, and I wanted to hear his point of view on the prognosis.
My phone rang. I stepped outside.
“Melissa!” our internist said. “I’m sorry, dear. Joel is really very sick. How are you holding up?”
“Not great,” I said.
“He’s in excellent hands. If it’s a virus, then it will be a slow recovery, but he can pull through. You need to stay strong for yourself and for your daughter. How is she?”
I could hear Sophie onstage telling a joke.
Joel should be seeing this.
I wiped the steady flow of tears streaming down my cheeks. “Sophie’s doing OK,” I told him. “Do you think it’s a virus?”
“They’ve taken a lot of tests for all of the California viruses. The rapid results came back negative, but sometimes that can change. They will keep testing him, but we are going to have to wait and see. The MRIs show nothing new. Could be the MS, his medication. Probably is a virus, though. Let him rest. Go be with your daughter.”
We hung up. There was no new information. Joel had been in the hospital for two weeks. By now, I knew that a healthy person could get a virus and not necessarily know it. It may seem like a mild flu or a cold. But to someone with a compromised immune system, like Joel, any of the viruses he was being tested for could be lethal. The doctors all believed, though, that because Joel was young and otherwise healthy, even if he did have a virus, he could recover, albeit slowly.
I went back into the auditorium. Sophie was center stage. There was applause and laughter. She was beaming.
Long before Joel was diagnosed with MS, we were dealing with another medical diagnosis: unexplained infertility. We had been trying to get pregnant since we moved to our second home near a coveted elementary school. Sophie was two and a half years old, and we wanted to fill our new house with more children and give her a sibling. We would vary between trying really hard for a baby, and at other times, just sort of trying. We both felt like we had time. I was in my midthirties, Joel was approaching forty, and other than us not getting pregnant, we were happy.
Joel was a partner in a music marketing company that he started with his friend Ben. His office was around the corner from our house. He would walk or ride his bike there every
day and often come home for lunch so he could spend some time with Sophie. I had just wrapped my work as a writer and producer on Lizzie McGuire, a show that helped put Disney Channel on the map and gave meaning to the word tween. I was also doing some film writing work and pitching a movie. We were successful and busy. We both thought a baby would come when it was supposed to.
It didn’t help that friends who had started their families when Joel and I had Sophie were now pregnant with their second or even third child. Just like the curiosity that came when Joel and I first lived together (Think you’ll get married?) to questions about the wedding and beyond (When are you going to start a family?), now came the incessant and, in hindsight, insensitive questions about having more (When are you going to make Sophie a big sister?).
Sophie was at an age where she noticed that some of her friends had brand-new siblings at home or babies growing inside their mommy’s tummies.
“Why don’t they just get a dog?” she would say.
She was in no rush to become a big sister. And why would she be? Not only was she the center of our world, but she also had six doting grandparents. Two grandpas and four (four!) grandmas. She had an entire wing of the house to herself. As far as she was concerned, her sister was our dog, Lucy, her brother was our cat, Puddin’, and she seemed very content to be the sole recipient of all of our love and attention.
But every month, as hopeful as I may have felt that this time I might be pregnant, we were met with the fact that we weren’t. I would sometimes blame myself. I loved being a mom! But I also loved having a career. No matter how many times I drove through the gates of the Disney lot, I got a thrill. I loved being on set. I loved pitching ideas and, even more, when I sold them. I often thought of that feminist adage that has been attributed to everyone from Oprah Winfrey to Gloria Steinem to Madeleine Albright: “Women can have it all, but not all at the same time.”
After a few years of trying and not getting pregnant, we finally consulted a specialist. We each got tested to make sure everything was in working order, and apparently it was. This brought us no relief. In some ways, a diagnosis of any kind would have led to possible treatment or at least an explanation for why nothing was happening. But with nothing medically wrong, there was nothing to fix. We were at a loss.
Widowish: A Memoir Page 4