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When My Parents Showed Us What It Means to Be There 'for Worse'

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In 2011, around the time my 1-year-old son began to learn to walk, my mother began to lose her balance. Around the time he began to talk, her speech began to slur. After three years of doctors being unable to tell us why, we finally ended up at the Mayo Clinic in Minnesota hoping for help.

It was a Wednesday, a few days after Mother’s Day. Our neurologist sat me, my father and my mother down in his small exam room and told us my mom had multiple system atrophy (MSA). It’s a rare neurological disease with no treatment or cure. It causes progressive disability, then death.

We slumped on hard seats while the doctor, kindly as he could, showed us brain MRI images on his computer screen and explained words like “atrophy” and “autonomic” and “cerebellum.”

“Just because there’s nothing we can do now,” he said, “doesn’t mean there might not be something in 2015 or 2016.” I watched my father hold my mother’s hand to his knee with some force, their fingers laced, his body leaning over hers as they sat, as if he could be some kind of shield for them both.

“The prognosis?” one of us asked. It was hard to say. Everyone progressed differently. There was no timeframe, no one answer, except that it always progressed.

We flew back to New York. My parents went back to the house they’ve spent four decades in together; I returned to my own husband and son. Strangely, the mail still came every day, and my son still wanted waffles for breakfast, and my husband went to work in the mornings.

And me? When I wasn’t writing or doing mom stuff, I was researching everything to do with MSA. What resources were available to us? What clinical trials were out there? Who were the best doctors? How could I help my mother? My father? I was action-oriented. I planned. I withdrew. It was my way of dealing.

My parents had a different way of dealing. They spent more time together. They talked more. When they went somewhere, they held hands — and not just because my mom is unsteady on her feet. When my mom began posting things on Facebook about being “married to her best friend,” I halfheartedly joked to my husband, “It’s like they’re teenagers again.”

Nearly four months after my mother’s diagnosis, I turned 40. On my birthday, my husband sat me on the couch and pulled out a maroon jewelry box. Inside was a white gold ring set with diamonds and amethysts. I was surprised. We were not the jewelry-giving types.

He told me it represented his promise to always take care of me. No matter what. Period. I cried.

I know when we got married we already made that promise. For better or for worse. In sickness and in health. But who but a very few at that age or that stage can truly understand what they may be called to do? When my husband and I said those vows, we were not much older than my parents were when they said theirs, and I actually giggled (nerves) during our ceremony. It’s on the wedding video.

But on my couch with that new ring, I cried hard. I cried because it was in my parents that we were seeing the sickness and the worse. I hated it. I hated their sadness. I hated that it was happening to them. But I also cried because I felt lucky. Here was my husband, knowing what we know, saying, “Screw the worst. I’m here to love you forever.” I cried because it was from my parents that we were learning that kind of love.

It’s a heartbreaking lesson. And a beautiful one.


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Originally published: May 27, 2015
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