Enable high contrast reading
I’ve always believed in the power of words. It’s amazing to think that a series of symbols can inspire, educate, entertain, convince, unite, divide, and heal us. They can make us fall in love – and out of love, too. The right words make us believe in a vision or an idea or a politician. The wrong ones make us turn away.
I spend a lot of time engaged with words, whether reading, writing, or even playing three word-games every morning before I get out of bed.
One of my closest work friends has never let me live down the time I held up a three-day meeting that everyone else was ready to end because I wasn’t convinced we had the brand statement we were working on exactly right. “Words matter,” I declared. There were more than a couple of eye rolls in the room, but you can bet when we emerged 90 minutes later we’d crafted a perfect document.
So when my daughter, Dalia, was diagnosed with MERRF Syndrome, I parsed through every word the doctors said. I pored over every entry I could find on Google and compared notes with my husband and father, who were doing the same thing.
But for the first time in my life, the words made everything feel blurrier. They rendered me more confused, not less.
The doctor said Dalia had a mitochondrial disease. I didn’t know what mitochondria were. He said the disease was degenerative. I could guess what that meant, but I had no understanding of the likely speed or degree of the degeneration. The more he said, the less I heard. “Every organ relies on mitochondria to function properly,” he explained. “If your mitochondria aren’t working like they’re supposed to, neither can your body.”
What in the world was he talking about? It was simply too much to take in, so I tuned him out, focusing instead on the mental images of Dalia playing with her brothers, snuggling in bed while I read to her, and dancing to Katy Perry. The images diffused the harshness of his decree.
When it came time to share the diagnosis with family and friends, I couldn’t come up with the words. Instead, I shared a definition of MERRF from the National Institutes of Health. Let somebody else’s words do the heavy lifting, I figured.
But I chose to ignore the very definition I shared with my inner circle. I viewed the list of symptoms as a menu, rather than a prescription. I chose to believe that while she had muscle twitching, hearing loss, and short stature, she’d be spared the blindness and dementia. Those words made the blood in my arms burn and my fingers tingle. They made me sweat and feel queasy. I picked the words I could stomach, as it were.
Once my people knew about the diagnosis, the burden of finding the right words shifted to them. The problem was that nobody knew what to say.
And who could blame them? I didn’t know what I wanted to hear.
I didn’t like it when they told me about their daughter’s sprained wrist or the stress they were feeling getting ready for a vacation or the birthday party they were planning for their son. Those things suddenly felt foreign, like fading memories of an old movie I used to love. But I didn’t like it when they censored what they told me either. If my friends couldn’t share authentically with me, how would the friendships survive?
There was also a whole new category of words that made me cringe inside.
“I can’t imagine.”
“You’re a superwoman.”
“God only gives us what we can handle.”
Of course I knew that people were trying their best, acknowledging that what we were dealing with was really, really hard, beyond words even. But the words they chose stung nonetheless.
I’m sure I’ve been the one saying the cringey things more times than I can count. I’ve never been particularly comfortable sitting in silence and have used words to try to fix things for others, even when those things were beyond fixing.
I’ve learned though, that sometimes words don’t really matter. What matters more is simply showing up. When we’re grieving or suffering or going through hardship we just need to know we’re not alone. Maybe that does look like sitting in silence. Maybe it looks like sharing a meal or taking a walk or just listening to what our friend who’s in pain wants to share.
And sometimes, it can even look like just acknowledging somebody. Recently I was in line at the grocery store when a teenager in the aisle next to me began to shout, “Hello! Hello! Hello!” Shoppers and checkout clerks and baggers all turned to see where the noise was coming from and quickly averted their eyes once they figured it out.
I looked at the girl and said, “Hello.”
The girl’s mother turned to me with tears in her eyes and said, “Thank you.”
I looked right back at her, my own eyes tearing up, and smiled. A simple “hello” meant so much more. “I see you. I see your daughter. I honor you both.” I knew that’s what she heard because I’d been that mother more times than I can count.
The words don’t have to be perfect. They just need to come from the heart.
Jessica Fein writes about the mingling of joy and sorrow, mothering a child with a rare disease, and staying rooted when life tries to blow you down. Listen to her podcast, “I Don’t Know How You Do It,” .
Her memoir, Breath Taking: Rare Girl in a World of Love and Loss, is coming in May, and is available for preorder now at Amazon.com and Bookshop.org. Visit her website or connect with her on IG for real talk about love and loss @feinjessica
Jessica is a CPN Blogger in Residence, an opportunity available through support from Sanofi.