Widowish: A Memoir(4)

“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.