Even though the MS had been hitting him hard, fever and chills didn’t seem like MS. We didn’t understand what was happening to make Joel so sick. They took blood and urine samples, but the test results were all negative or inconclusive. With Joel clearly not well, hours later he was moved out of the ER and into a hospital room.
The new medication Joel had started months earlier still didn’t seem to be helping. He was so tired of being sick. He had been in constant communication with his doctors from the minute we got back from Mexico. The day we arrived home, he sent this email. In part it reads:
Dr. K, I’ve been going downhill rapidly since the beginning of the year . . . I’m getting worse daily. It’s very difficult for me to walk, standing still is also a challenge. I’m afraid that by the time the new meds kick in, I may lose my ability to walk.
Around the time of this email, his doctors ordered another MRI. They discovered one particularly bad lesion on his brain that they were convinced was the reason for the yearlong flare-up. If that lesion could start to heal, they believed Joel would start feeling more like himself again. They prescribed steroids.
Steroid treatment was used as a protocol to provide an energy boost and to help prevent the symptoms of the flare-up from getting worse. A nurse came to the house every morning for five days to administer the steroids through an IV. Because steroids lower the immune system, it’s advised to stay indoors with little to no outside contact to avoid catching random germs and/or infections. The only people Joel saw that week were Sophie, the nurse, and me. We washed our hands constantly, and I got in the routine of using antibacterial wipes on every surface any of us came into contact with.
Joel had taken oral steroids before and they were quite effective, but this round of steroids, which were exponentially stronger, didn’t seem to help. The doctors thought another round of steroids, to be administered in the coming months, might do the trick. But Joel was frustrated. It had been a very difficult year with new symptoms appearing constantly. Medications meant to alleviate his discomfort did little to help. All of this was affecting his job. He would oftentimes work from home, which helped, but he was feeling desperate for relief of any kind. He changed up his already healthy diet and started acupuncture, but neither option offered any consolation.
His doctors were kind and compassionate, but because Joel was easygoing and otherwise healthy, I encouraged him to be the squeaky wheel so they could understand just how much he was truly suffering. Two weeks after Joel sent his first email, he sent another:
Good morning, Dr. K. I know you’re busy but as a patient going through a very rough time, I need some attention. This has been a horrible year for me and I’m trying to get as many answers as possible for my own peace of mind. I’ve started an acupuncture and anti-inflammatory diet regime. The IV infusion really didn’t have any effect on me. I’d like to wait until mid-October before revisiting the next round.
But by October, Joel would be in the hospital. We would have no idea why.
“What’s happening with you and Ellie?” Joel asked me one night as I washed my face.
He sat on the edge of the tub, his matchstick legs awkwardly lying straight out in front of him. He could no longer bend them comfortably.
“We’re trying to figure it out,” I said.
Ellie and I had become friends through our kids’ elementary school. Her company had relocated, forcing an end to her career in TV news. The Writers Guild was going on strike. This meant my long-standing career as a TV writer was in flux. Both Ellie and I were looking to make a change. We decided to start a high-end concierge service for expecting parents, but we ended up becoming a go-to source for media in the Hollywood maternity space. This meant that when Brad Pitt and Angelina Jolie had a baby, Ellie and I would talk to the morning shows about how they might fill their nursery. This attention resulted in not just one but two different reality shows being developed around our company. We both saw ourselves as behind-the-scenes TV people. We weren’t necessarily meant to be on-camera talent, but that’s how things evolved.
It had recently become clear, though, that the reality shows weren’t going to happen. We had no clients. We had to face the fact that as successful as we were from a publicity and public relations standpoint, our company bank account was empty. We were influencers at a time when that term didn’t exist. We didn’t know how to monetize what we did. Ellie and I were starting to accept that it was time to close up shop.
“What about your movie?” Joel asked.
A year prior, when our first reality show didn’t get a green light, I had tiptoed back to the world of TV and sold a movie idea to Disney Channel. I had written the script and gone back and forth with the network on notes and rewrites. It was now in the hands of new writers with the hopes it would get a production order. If it did, I would get a financial bonus, residuals down the road, and most importantly, our health insurance would be extended by at least another year or two. If it didn’t get a green light (it didn’t), I had already made my money.
I knew why Joel was asking. I turned to face him.
“I need to bring in some steady income again,” I said.
“That would help,” he said. “I’m sorry, hun. I just . . . I’m not sure how much more I can work. I don’t . . .” His voice cracked. This was killing him. I sat down next to him. Buried my head in his shoulder.
“I just don’t feel well. I can’t keep working if I’m like this,” he said, welling up. “I’m sorry.”
“It’s OK,” I said. I rubbed his back. “It’s OK. We’ll be OK.”
But my mind was racing.
Joel is suffering. He’s getting worse. I need to do something to help.
The next day I started calling agents and producers I had worked with in the past. I sent emails and set up lunches. I had an idea for a half-hour show and decided to write that script on spec and use it as a sample to get hired on an established show. If I could garner interest in my spec and someone was interested in producing that, great, but a staff writing job was the goal. The work and income would be consistent.
I worked on my idea. I wrote the script over a few months and felt good about using it as a sample. I had planned to start sending out my script the following Monday.
But that was the weekend I took Joel to the emergency room.
Once he was settled in his hospital room—as if it were a hotel!—I wanted to get home and disinfect the house and do laundry. I didn’t want Sophie or me to catch whatever Joel had. We needed to stay healthy.
I don’t want Sophie to worry.
I don’t want Joel to get worse.
What is happening to my husband?
That first night Joel was in the hospital, Sophie slept in bed with me. I tried to stay positive when I told her before lights out, “You’ll spend tomorrow with Nana and Papa doing something fun! Then I’ll meet you at the hospital in the afternoon so you can visit Daddy.”
“OK,” she said with a yawn.
This seemed like a perfectly reasonable plan.
I returned to the hospital the next morning with Joel’s pajamas and some of his favorite foods. I thought we would hunker down together and hang out . . . but when I got there, I couldn’t believe what I saw. Joel was sitting up in his bed, but he wasn’t alert. His brow was creased, and he seemed to be in distress and speechless. He knew that I was there, but he didn’t acknowledge me. He was out of it in a way I had never seen, and I didn’t know what to do. Doctors came and went, and nurses took his vital signs. It was hard to take in. None of it made sense. I was scared.
Two days before, Joel had been home. He was feverish, but we were joking. He lay in our bed, wrapped in blankets and propped up on pillows, when he said he wanted me to put him out of his misery.
“Just kill me, hun. We need to figure out how you can do it, though, without getting caught.”
I sat down next to him and smoothed a cool cloth on his forehead.
“Yeah, I don’t want to go to ja
il,” I said, smiling.
“Exactly. What would happen to Sophie?” he wondered. “We need a good plan.”
“How about I smother you with a pillow?” I offered.
“That could work,” he said thoughtfully. He looped his pinky finger with mine. I kissed his hand. We started laughing because we had many conversations like this. It was because of the MS that we had both serious and fantastical ideas about the end of life.
“If I die,” Joel would say, “just make sure you marry a nice guy so that Sophie has a good father figure around.”
“Ooh, I can’t wait,” I’d say. Then I’d add my favorite line: “Jeff Tweedy will be a great stepfather.”
Joel would then say, “I approve.”
The joke was that I could name anyone of the moment: Jeff Tweedy (lead singer of the band Wilco) . . . Howard Stern . . . Marc Maron . . . Anyone who both Joel and I liked for whatever reason. Once when we were at Trader Joe’s, a nice employee found something for us that wasn’t on the shelves. Joel smiled at me, pointed to the guy, and said, “I approve.”
Even when it seemed like he was at his worst, we didn’t think he was going to die. We found relief in the comedic and absurd. It’s how we coped with our lives taking a turn neither of us saw coming.
Nothing that was happening in the hospital now, however, was funny. By Sunday night, Joel was nonresponsive and noncommunicative. I was overwhelmed, confused, and terrified. I was worried for myself, worried for Sophie. The person I needed most was unable to help me . . . and I had no idea how to help him.
Sophie slept with me again the next night. It was early October. She had just started eighth grade. There was so much to look forward to! She was cast in the school talent show that had rehearsals for weeks. Having been in previous years’ musical theater productions, she was determined to get a real part this year. There were school trips planned to San Francisco and New York City, not to mention middle school graduation and then high school. It was a fun time in her young life. She had good friends whom she loved, and she was excited for what lay ahead. I didn’t want any of that to change.
“Daddy’s going to be OK,” I told her that Sunday night.
“When do you think he’ll be home?” She was concerned about him making it to the talent show the following week.
“Hopefully in time to see you perform!” I tried to sound hopeful, but I was at a loss. While she slept, I called the hospital. It was the middle of the night.
“He’s still got a fever,” the night nurse sweetly told me.
“Has he been able to talk at all?” I asked.
“Not yet,” she said. “Don’t worry, honey. We have your number. Call as many times as you’d like, but we’ll keep you updated.”
“Thank you,” I said as I hung up.
I was too tired and scared to cry. My heart was racing. I watched Sophie sleep on Joel’s side of the bed. I wanted to hold her, but I didn’t want to wake her up. I wanted to assure her that everything was going to be OK. But I wasn’t sure it would be.
FOUR
No Matter What Occurs
By Monday Joel had been moved out of his hospital room and admitted to the intensive care unit. He remained noncommunicative and nonresponsive. He was breathing on his own, but there was concern over the strength of his lungs. The doctors started saying things like, “Your husband is critically ill.” But no one could tell me why or how things had turned so bad so quickly.
I started making phone calls to friends. My close friend Mimi, who is incredibly responsible and organized, convinced me that I needed some help. I told her where she could find the key to my house, and she began coordinating with some other friends. One day I came home to a house full of flowers. The next, to a fully stocked fridge of ready-made meals. I was typically the type of person who handled things on my own, but something inside me succumbed. People wanted to help us. I let them.
My mother lived nearby and was devastated by what was happening. She loved Joel and offered to help in any way she could. She spent time with Sophie, cooked for us, and made herself available.
My dad and stepmom, Elisabeth, who live in New York, happened to be in Northern California on vacation. We had plans to meet them in the central coast the following week. But with Joel so sick, they cut short their trip to the wine country and headed straight for Los Angeles.
Joel’s dad was a constant presence, and I spoke to Joel’s mother, Nancy, every night. It was difficult for her to see Joel so incapacitated, and as a mother, I understood completely. I sent emails to Joel’s employees and closest friends to let them know that Joel was out of commission for at least a few days, maybe a week.
Sophie continued to sleep with me every night. I would take her to school, which had always been Joel’s job, then head straight for the hospital. People offered rides, but I wanted to be there to pick her up every day like normal. I kept her in a bubble, reassuring her that “Daddy is going to be OK. He must really need this rest.” She seemed to understand. This went on for days.
When I think of Joel in the hospital on those fraught, early days, I try to forget about the tubes in his nose and mouth, the IVs connected to his arms, and the soft whir of machines that helped him breathe.
It wasn’t like the movies where the bereft spouse cuddles in bed with their sick husband or wife, smoothing down their hair and kissing them on the lips. Between the tubes, wires, and machines, I couldn’t get close to Joel even if I wanted to. I feared something would become disconnected or loose. I was anxious seeing him like that, being unable to touch him or get close. He couldn’t tell me what he needed, what would make him more comfortable, or more importantly, how to help him.
I tried to speak to him but I felt self-conscious—there was a steady flow of people in the room—nurses, doctors, visitors. And Joel was there, but he wasn’t there. I would lean over the plastic tubes, whispering in his ear:
“You,” I’d say.
“I love you.”
“I’m here, hun!”
The only thing I could offer was my love.
After we ran into each other at that Dodgers game, Joel and I would see each other at shows around town quite often. The girlfriend Joel had been living with when we met at Atlantic Records was now his wife. She was rarely at shows with him, and while Joel and I always had chemistry when we saw each other, I was focused on starting my career.
By then I was working at Walt Disney Television, writing and networking like crazy, and was determined to get a job as a TV writer. I answered my phone one day; it was Joel.
“Perfect timing!” I said.
“Really, why?”
“I’m moving to Seattle next week!” I told him about the writing job I had just accepted on a new kids’ science show called Bill Nye, the Science Guy. I was thrilled.
There was silence on the other end of the phone.
“This is the part where you say you’re happy for me. It’s why I moved back to LA, so I could move to Seattle,” I said jokingly.
“I’m happy for you,” he said, “but you just got back from New York.”
“I know. It’s kind of crazy.”
Again, there was silence.
“The thing is,” he said, “I let you get away once. I’m not going to let that happen again.”
“What do you mean?”
But I knew what he meant. Like a cartoon, Joel and I had hearts in our eyes that day we met, but the timing was always off.
“Go to Seattle,” he said, and then with over-the-top theatricality, he added, “Stay alive, no matter what occurs! I will find you! ” It was a serious and dramatic line from The Last of the Mohicans delivered by Daniel Day-Lewis’s character.
We both started laughing hysterically. Nervous laughter, perhaps, but it was typical Joel. The side of Joel that made me love him even more every time he said something funny or with innuendo.
When I left for Seattle, I went with no commitment from Joel, and I wasn’t expecting one. Our lives were sep
arate—we had never been a couple. As much as I continued to long for someone just like Joel, I put all of those feelings behind me. My life was starting, and I couldn’t wait. It was 1993. Seattle was the place to be. It was the epicenter of the biggest shift the music business had seen in decades—grunge. I was young and unencumbered . . . Kurt Cobain was still alive. I was writing on a TV show and still very connected to my love of music, which was entirely accessible to me. I was in heaven!
A few months later, Joel started a new job and was on tour with the metal band Anthrax. The weekend they rolled through Seattle, Joel called and asked me to meet him at the theater where the band was playing. I was excited to see him and catch up. But when I left work that night, he was standing outside the production offices waiting for me. My heart nearly burst out of my chest. I felt scared and excited at the same time.
“What are you doing here?!” I asked.
We stood there looking at each other. It felt like the world around us had stopped moving.
Joel walked toward me, reached for my hands. “I’m here because I can’t live my life without you. I don’t want to anymore.”
A thousand thoughts swirled through my mind.
“What?” I asked. “You’re married.”
“We separated. Months ago. Right after you left.”
I was stunned. “Really?” I couldn’t believe that the man I pined for all those years was standing in front of me making this declaration.
“I love you. I want to be with you. Please tell me that’s OK.”
I stood there silently staring at Joel. But I was smiling. “I can’t believe this,” I said.
“I know. It’s weird.”
“Yes,” I managed to say.
“Yes, this is weird, or yes that it’s OK?”
“Yes,” I said again. “Yes.”
Joel smiled, took my face in his hands, and kissed me, deeply.
Widowish: A Memoir Page 3