TWO
Milestones
On a whim, shortly after we learned he had MS, Joel purchased a one-month series to a new yoga studio that had recently opened in our neighborhood. He was desperate to find something that gave him the same endorphin rush and physical workout as running up and down a basketball court. He had never done yoga but felt like he would benefit from a more holistic approach to exercise.
He came home from his first class beaming.
“It was great,” he said. “Feel my shirt. It’s soaked!” He loved how much he sweat and moved in ways he never had before. He was amazed that this particular studio played some of his favorite music during class.
“You could be in down dog listening to Kings of Leon and start flowing to the Pretenders,” Joel said. “But by the time we’re in Savasana, Elliott Smith could be playing!”
This kind of anti-yoga yoga spoke to Joel, and he loved it. We would practice together. He was able to do moves and flows I struggled with. He would sweat and make me laugh, and when we lay on our backs in Savasana, our index fingers hooked together across the wooden floor.
Years later, Joel began to feel like he had multiple sclerosis for the first time since his diagnosis. The Copaxone stopped working. Joel would leave for yoga and come home crestfallen.
“I had to spend the whole time basically sitting on my mat. I could barely move,” he’d complain.
Reluctantly, he stopped going to class. He could no longer ride his bike because it took too much effort to pedal and stay balanced. There was a time in our lives when Joel would go to concerts several times a week. Now he could only go if he had a seat—standing for hours was impossible. Without the ability to exercise, without the ability to see and hear live music, the MS was robbing Joel of the things that made him him.
While the Copaxone had worked well for years, we learned that most MS drugs have a limited life span, and it was time to find a new medication. As with many medications for chronic diseases, the side effects can be severe. Joel and I would laugh about these—each one worse than the other. Like a ridiculous Saturday Night Live sketch, side effects might include permanent brain damage . . . heart failure . . . thoughts of suicide . . .
The list went on and on.
“Don’t worry, hun,” Joel said jokingly. “The worst that can happen is my tongue might swell and block my breathing. Or I could get a severe brain infection that could kill me. Good times!”
Yet, there was hope. New medications were being developed and put through trials all the time. We were optimistic that Joel could live his life without compromise once he got started on a new treatment.
Joel started on a new drug, but after a month it just wasn’t helping. It was difficult for him to walk, to stay clear minded. He would do something simple, like empty the dishwasher, and it would make him so fatigued that he’d have to sleep afterward. He was suffering; there was nothing I could do to help, and Sophie was becoming more aware of her daddy’s condition. Joel didn’t want her to worry about him or make her feel that he was compromised in any way from being the fun and loving parent he had always been.
When Sophie was born, we lived in a small house in the San Fernando Valley. We loved that little house with the big tree that took up most of the backyard and a pool that had both a slide and a diving board.
Joel, Sophie, and our shepherd mix, Lucy, could often be found in the backyard together, Joel carrying Sophie as he tended to our plants, or holding Sophie high above his head as he gently went down the slide into the pool. By the time Sophie could walk, they also loved their time picking up after Lucy. Joel would be in his swim shorts and flip-flops carrying a poop bag and shovel. Sophie would have on a T-shirt and her little rain boots with her bare bottom exposed. She would march around, pointing out all of Lucy’s poop so that Joel could scoop it up.
“There’s one!” she’d scream in her little toddler voice.
“See any more?” Joel would ask.
She would search and squeal with each pile she found. Disgusting, maybe, but Joel loved it, and Sophie loved the time with her daddy.
Now that Sophie was thirteen, other than wanting to put purple streaks in her thick, long hair and begging for a new cell phone every now and then, the only issues we had with her were when we, specifically I, would offer to help with her homework.
One night, I called them both to dinner. Sophie said she had to finish an assignment first.
“Come eat, and then I can help you after dinner,” I said.
She snorted as she took her seat. “Like you can help.”
I just shook my head and sighed.
“Don’t talk to your mother like that!” Joel said.
“Like what?”
“You’re being rude,” he said. “That’s not OK.”
“Whatever.” Sophie shrugged.
Joel stood up. His legs were stiff.
“Go to your room, Sophie,” he said. “I don’t like your attitude.”
“Hun, it’s OK,” I said to him.
“No! It’s not OK. She can’t talk to you like that!”
I tried to minimize it. “She talks to me like that all the time, I don’t even hear it anymore.”
“Exactly!” Joel said, frustrated. He held on to the counter for balance.
“If she doesn’t care, then you shouldn’t either!” Sophie yelled.
“Go to your room right now!” Joel grabbed Sophie’s chair, attempting to pull it and her away from the table.
“Fine!”
Sophie stormed off to her room and slammed her door. This enraged Joel. He tried to follow her, but his legs simply weren’t working. He looked like he was walking on stilts. Joel yelled after her, “And do not come out until you apologize!”
With no warning, he collapsed to the floor. His legs could not even bend. It happened so quickly and unexpectedly that I gasped. I had never seen him like this, so frail and fragile. I rushed to his side and tried to help him up.
“Don’t!” he yelled, pushing me away. He managed to get up somehow. “It’s not OK for her to talk to you like that!”
“But your legs—” I said.
“Don’t!” he yelled again.
With tremendous effort, like the Tin Man in need of oil, he made it to our bedroom. I didn’t follow. I knew he didn’t want me to.
So I stayed quiet.
And that’s how it went. Joel’s health got worse. It started to affect him not just physically, but emotionally and psychologically as well. We would typically talk about everything. The extremely personal, married-couple variety of conversation (Did you go today?), to the more mundane (Did you find that thingy for the thing?), but the one topic that we suddenly stopped talking about was the most important—his health.
I decided to call Joel’s mother.
“I need help, Nancy,” I told her. I didn’t want her to worry, but she needed to know the MS was starting to affect Joel. I also knew that keeping it to myself was becoming too much for me. Things turned bad so fast, and those closest to us didn’t know or understand just how serious our situation was.
“It’s Joel. He’s just been sort of depressed lately. He feels like his legs aren’t working that great.”
“Oh no!” she cried.
“It’s probably just a flare-up.” I tried to minimize it, but I had no idea how long this episode might last. I also understood that no mother, no matter how old their child, wants to hear that their child isn’t doing well. “Maybe you can call and check in on him and make us dinner every now and then?”
“Oh of course. I’ll do that. You know I will,” she said.
Nancy loved cooking for us, even when we didn’t know if she was still a vegan or back to eating meat or just gluten-free or no sugar. When Nancy came to visit, she would bring us knickknacks and doodads she had picked up at various yard sales. These are the things that made her happy but were torturous to Joel and me. Nothing she ever touched would go to waste. It could be a broken piece of colored g
lass, old wrapping paper, a cigar box. Nancy would try to find a place for it in her home—the same home that Joel grew up in. She had so much stuff everywhere that Joel used to joke, “If we go to my mom’s, don’t put our keys down anywhere. We won’t be able to find them when we want to leave.”
Joel’s parents, like mine, were divorced. So I made a similar call to Joel’s dad. “Please, Hal. If you could meet him for lunch, even once a week, it could help.”
Joel and Hal were close. They spoke on the phone often, and when he retired Hal rented some space in Joel’s office just to have a place to go every day. This was something that Hal’s wife, Rita, encouraged.
Joel was in his twenties when Hal and Rita got married, and she and Joel had a nice rapport. We all did.
I told Hal that I thought Joel was depressed because of the MS.
They had a typical father-son relationship. In large part it revolved around sports. They went to Dodgers games together, Lakers games. Joel was Hal’s pride and joy. Hal looked at Joel the way Joel and I looked at Sophie. His whole being would light up whenever Joel walked into the room.
“Oh sure. I’ll give him a call tomorrow. How’s that?” Hal offered.
“Perfect,” I said.
Joel’s sister, who lives in Northern California, also suffers with an autoimmune disease. By the time Joel was diagnosed with MS, Andrea had been living with lupus for nearly twenty years. Andrea was stoic. We once went to visit her and her family while she was in the midst of a flare-up and recovering from shingles. Shingles! She still managed to trek literally across the entire city of San Francisco in one day. She didn’t complain once.
I called Andrea to let her know that her older brother wasn’t in great shape. They had their compromised health in common. In some ways, when Joel was diagnosed it brought them closer. Andrea, too, said she would check in on her big brother.
A few months earlier, both of our families had come to town for Sophie’s bat mitzvah. It was a Big Deal. Friends and family flew in from around the country. Like a big wedding, the celebration took up the entire weekend. There was a rehearsal dinner the night before, the ceremony itself followed by a huge party, then a family brunch the day after. Planning the event took up most of the year, and Sophie spent several years of Hebrew school preparing for it. I was totally unfamiliar with the rituals of a Jewish education. I was born Jewish and knew what the holidays were, but my home was only Jewish in the cultural sense. My mother, in fact, favored celebrating Christmas over Hanukkah.
While Sophie’s bat mitzvah was a magical weekend, it was obvious that Joel wasn’t feeling well. It was tiring to have so many activities planned. He tried to overcome his exhaustion and overall discomfort. He was so thin! His walking was labored. So while it was a happy and joyous occasion, I noticed Joel’s health was taking a turn. In photographs from that day, Joel is smiling, so proud, so thrilled—but I can see the distress in his eyes and the aches and pains he was feeling.
In a discreet lean toward me during the ceremony, Joel whispered, “I don’t know if I can make it.”
I looked at him, unsure.
“I don’t know if I can move my legs,” he said.
We were on a raised stage, the bimah, and our friends and family filled the audience just below us. All eyes were on us. I didn’t want to create a scene; neither did he.
The rabbi and cantor took turns with Sophie, who mostly led the service in both English and in Hebrew. I held Joel’s hand. I had concern in my eyes and a smile on my face. I inhaled, worrying, but I didn’t know how to divide my attention between him and Sophie.
When it was Joel’s turn to read his speech, something parents do during the service to acknowledge their child’s achievement, he gave me a nod.
“You OK?” I asked.
He got up slowly and steadied himself. He lumbered heavily across the stage to reach the podium. His legs, he later told me, felt like they had metal braces on them.
I am guilt ridden thinking about that now. Why didn’t I help him? It would have been so easy! My arm looped through his, my hand on his shoulder or wrapped around his waist. I could have helped him!
But I sat still. I did nothing.
Later, my sister mentioned to me that she could tell Joel was having trouble walking. Some of our closest friends, however, didn’t notice at all. After the ceremony, miraculously, Joel felt better. Which is how MS seems to work. It’s totally unpredictable.
At the celebration, Joel was raised in the chair during the hora—one hand held high in the air in triumph and the other holding on to the seat for dear life. He was happy. Friends came up to us, congratulating us, saying, “Mazel tov!” We worked hard to create a special night for all of us but mostly for Sophie. Her name was spelled out in lights, and the DJ created a dance list of songs of her choosing. She invited close to seventy friends while Joel and I, similarly to our small wedding, had a combined fifty guests including our friends and family. There were passed hors d’oeuvres, a massive buffet with chicken fingers for the kids, and salmon with lemon and capers for the adults. An ice cream bar with overflowing toppings was served for dessert.
“You did it, hun!” I said to Joel as we kissed on the dance floor. He had even managed a daddy-daughter dance with Sophie.
“I don’t know what happened,” Joel said, elated. “It’s like God gave me the strength to get through the day. I didn’t think I would.”
I wrapped him in a hug. “You were great!”
The bat mitzvah was a snapshot of who Sophie was at thirteen years old. She was confident, articulate, and happy. Happy in the way that every parent wants their child to be. It came from within. She glowed with self-confidence and a sense of well-being. She was safe in the world with her feet firmly planted, and she had all the love we had to give to her and her alone.
We were overcome with pride and joy. But in the few quiet moments I had that weekend, my concern over Joel grew. It had been a rough year so far, and I saw no signs of that letting up. Joel’s whole demeanor was different. Physically he appeared gaunt. His mood was muted. The MS was getting hard to ignore.
With Joel’s fiftieth birthday coming up, we thought a change of environment would be nice. We decided to book a vacation to Cabo San Lucas. Joel always said he preferred Mexico to Hawaii. “The flight is shorter, it doesn’t cost as much money, and the food is better.” The resort we chose was gorgeous and had multiple pools with swim-up bars, plenty of places to eat and relax, and access to a swimmable beach. We were very content on the huge, bed-like chaises that lined the beach. We were protected from the sun inside our little cabana that also had fans and water misters to battle the heat. We’d settle in with our chips and guacamole and our newspapers and magazines. Sophie had Joel’s iPad, and we were all content to do nothing. Still, Joel wasn’t feeling well. He retreated to our room one afternoon, mumbling something about work. And while I knew that heat exacerbates the symptoms of MS, after a few hours I called him from one of the phones by the pool. “Hun, come back to the beach. Sophie and I miss you.”
Half an hour went by before I spotted him on the huge circular staircase that went from the resort rooms down to the pools and beach. I didn’t recognize him at first. He wore a wide-brimmed hat, and dark sunglasses covered his face. He looked so frail! He struggled making it down the stairs, holding on to the railing for support as he slowly managed each step. I hid my tears behind my sunglasses.
The next day was better. It wasn’t as hot, the ocean not as choppy. Sophie wanted to go in, so Joel offered to take her. I went down with them and watched from the shore. There are no lifeguards on the beaches in Mexico, and everywhere you look signs warn of a strong undertow. After a while, Sophie swam back to shore easily. Joel was still in the water.
“That was so fun!” she said as I gave her a towel.
“What’s Daddy doing?” I asked her, trying not to sound concerned. He was swimming toward shore but sort of bouncing around the waves, like a cork floating in water.
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“The water is so nice,” Sophie said, “he probably doesn’t want to come out.”
But I could tell that Joel could not find his footing, even in the shallow waters. The waves kept knocking him over, and he was trying hard to find his way to shore. Sophie was laughing, thinking that Joel was exaggerating his efforts. I probably laughed, too, until I realized it wasn’t a joke.
“No fair,” I told her. “You guys went in without me. I’m going in with Daddy.”
The minute I swam past the break, I got pulled under. The water wasn’t deep, but the undertow was shockingly strong. I managed to reach Joel.
“You OK?”
“Yeah. It’s just hard to get out of this.”
I pushed Joel into a wave that carried him past the break. I met him and tried to make it a lighthearted moment by carrying him the way a groom carries his bride over the threshold to their new home. I didn’t want to embarrass him for needing help. Nor did I want Sophie to notice that Joel could not have made it out on his own. We didn’t want Sophie to know how much Joel was really struggling, and how frightening that dip in the ocean really was. Of course, she knew he had MS. She saw him take his medication and knew that he got tired at times or that his legs were bothering him. But it didn’t affect her daily life. She was protected from her father’s limitations, even when he was struggling to get out of the ocean.
We spent the rest of our trip by the pool.
We celebrated his birthday at a beautiful restaurant at an organic farm that reminded us of California wine country. We ate delicious food, toasted Joel’s fiftieth with margaritas in a truly magical setting, but the trip didn’t offer the reprieve we had hoped it would.
We were ready to go home.
THREE
Uncertainty
Two months after we got back from Cabo, I took my husband to the emergency room. For two days Joel had a high fever, most of which he slept through, but he suffered from chills and disorientation when awake. He was lucid when we made the decision together to take him to the hospital. He walked in himself. He didn’t need a wheelchair or my assistance. Neither of us was versed in hospital etiquette, but I thought we would admit him and that he’d be home a few days later.
Widowish: A Memoir Page 2