Widowish: A Memoir(3)

Joel was sitting in our home office one night. Sophie was having a bath.

“The doctor called,” Joel said. “I need to tell you what’s going on.” I knew by the tone in his voice it was serious. I sat down in the chair across from him. “He gave me my MRI results.”

“OK,” I said. “We’ll deal with whatever it is.” But my voice started to crack, and I felt tears pooling up in my eyes. Joel looked at me, anger flashing across his face.

“Don’t!” he said. “If you start to cry, I won’t get through this!”

So I held myself back. I took another deep breath. I reached for his hand. He looked at me and said quietly, “There are two lesions on my brain, and one on my spinal cord. That means it’s MS. I have MS.”

A million thoughts swirled around my mind as tears started streaming down my face. I tried to wipe them away; I didn’t want Joel to fall apart. He squeezed my hand harder.

“I’m scared,” he whispered.

And then I really started to cry. I got up, and I hugged him. I held him tight.

I could still hear Sophie splashing around in the tub.

“I love you,” I said to Joel, holding on to him.

“You,” he said back quietly.

You was our shorthand. It was our call and response to I love you.

Joel’s eyes started to tear up. Both of us knew about MS, and we knew it well. Not only did his father’s best friend have it, but so did my dad, who at that time was mostly symptom-free. Joel and I just never put it together. It’s like when you’re looking for your keys for a half an hour and realize you’ve been holding them the whole time. Of course it was multiple sclerosis. The problems with his legs, the tingling, the body feeling disconnected from the brain . . . we must have been in denial.

After that night, we tried to maintain normalcy—get Sophie up and ready for school, keep her on track. Joel went to work every day, but it was impossible for him to concentrate. We were in shock. Joel, typically an “up” person, was down in a way I had never seen. He was quiet, remote; he went inward.

“I don’t want to end up in a wheelchair,” he’d say. “I want to dance at Sophie’s wedding . . . I want to travel as a family while I can still walk.”

“You’re going to be OK, hun!” I’d say. But neither of us was sure.

At the time, the actress Selma Blair was years away from announcing her diagnosis, but some celebrities had come out with the fact that they, too, had MS—Montel Williams, Jamie-Lynn Sigler, Jack Osbourne. In a weird way, we took comfort in this. Joel did not want to end up like Richard Pryor, Annette Funicello, or Teri Garr. They were the public faces of MS at its worst, and what we feared could be Joel’s future.

MS is a complicated disease that impacts the central nervous system. Brain communication to the body breaks down due to damaged myelin (the “coating” that surrounds nerve endings), causing a host of symptoms, which for Joel at that time affected his balance and mobility. The progress of the disease, as well as its severity, is unpredictable and manifests differently in every single person diagnosed with it.

After waiting a few months, Joel was seen by a renowned MS specialist. Being in his care meant there was a team of support behind us. One doctor, who we liked very much, became Joel’s point person. She was also the one who would be monitoring his medication. I went with Joel to every doctor appointment, and he started to keep a journal of his symptoms to review at every meeting. After some deliberation, we agreed that Joel would start on Copaxone, which at the time was considered one of the “better” drugs, believed to slow down the progression of MS and alleviate some of its symptoms. For Joel, this worked great for a number of years . . . He would give himself the prescribed dosage of one shot, three nights a week.

“Fuck you, MS!” he would say with each night’s injection.

Ice . . . shot . . . Advil. That was the routine. We got used to it. There were good days and bad, for sure, but Joel was coping. The meds were keeping things at bay. Joel was active. He rode his bike to work, saw live music. He was living his life, and life was good.





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.