Mothering Through Chronic Pain

My daughter Hannah and her best friend are playing, and their laughter echoes through our house. I reflexively smile at the joy of these two 9-year-old girls and then, just as reflexively, force my features back into a neutral position. I learned to do that as a young child, so young I don’t remember not knowing that when I laughed too loud or for too long, the pain that permanently resided in my head and under my eyes would increase.

Before I became a mother, I occasionally wondered how my life would have been different if I hadn’t been born with this constant pain in my face and head. It disciplined me, making me a quiet, watchful girl who often smiled but rarely laughed. Without the pain, would I have been a different girl? Would I have become a different woman, one who knows what it feels like to be entirely happy instead of, even on my best days, living with the constant hum of pain in my body? But then I had my daughter Hannah, with the echoing laughter, who is the pain-free version of me; the girl I dreamed of being. On days like today, especially, it is clear: I am jealous of my daughter.

For a long time, my head and facial pain was misdiagnosed as headaches and eye strain. Over the years, I was told that I needed to just relax more, stress less, practice deep breathing, try yoga, and see a therapist. I was almost 30 before I was finally diagnosed with damaged nerves in my head and face. The surgery to fix the nerves in my head was a success, but the one on my facial nerves didn’t bring any relief.

In the four years between the surgeries and Hannah’s birth, I reveled in life without headaches, even as I took stock of the damage caused from living with constant pain. I am always tired, no matter how much I rest. I get sick easily and for longer periods than people with less-stressed immune systems. Because my central nervous system spent years under assault from rogue nerve signals, I am hypersensitive to pain and touch.

Sometimes I think that my pain has caused our bond to be stronger than it might be otherwise, because the days when I've had to withdraw or the nights when I have to go to bed early have made me determined to be present when I can.

Hannah learned as a toddler to not touch my face. My husband is the one whose face she ran her tiny hands over, her soft fingers poking and prodding at his skin as she worked out what other people felt like. He’s the one she can tickle and wrestle with, the one who’s never flinched from her cries of happiness.

I can’t be as physically affectionate with Hannah as her father can, but she and I have a close relationship, too. Sometimes I think that my pain has caused our bond to be stronger than it might be otherwise, because the days when I've had to withdraw due to a pain flare, or the nights when I have to go to bed early, have made me determined to be present when I can.

My pain wakes me up early, and my daughter is an early riser. Seven a.m. often finds us at our kitchen table in pajamas, talking about our favorite Taylor Swift song as our cat prowls around our feet and our two dogs hop in and out of our laps. Sometimes we puzzle through the social dynamics of the various cliques in Hannah’s grade; more recently, she’s begun to ask me about puberty. I answer as honestly as I can: “I’ve been talking to doctors about my body for years,” I told her recently. “Trust me, anything you want to say about your body, I’ve already said it about mine.”

Hannah giggled when I said that, but most of the time we don’t talk about my chronic pain. It’s as settled a part of our lives as our Jewish faith or our love of books. It also helps me understand the kind of woman I want her to become. Living with constant pain is the worst thing that has ever happened to me, but it has also made me brave. I want my daughter to be brave, too.

Of course, if I just told her that, she’d roll her eyes at my earnestness. Instead, I try to let her see how I handle my fear. On our last trip before the pandemic, Hannah and I went to Paris. She begged to go to the top of the Eiffel Tower, which I didn't want to do because I’m afraid of heights. Finally, I relented, and we took an elevator to the very top.

“Are you scared?” Hannah asked as we peered over the edge, lights blinking on below us in the late gray afternoon. Even though it was cold I was sweating beneath my pea coat.

“Terrified,” I said, and Hannah looked at me.

“But you’re up here,” she said, and I nodded. Holding hands, we walked around to see the view from all sides, a fine drizzle misting our hair and jackets, wind tangling our hair. Then we walked all the way down to the bottom, the narrow steps shadowy in the gathering dusk, the steel beams and supports of the tower rising around us like a futuristic skeleton.

Living with constant pain is the worst thing that has ever happened to me, but it has also made me brave. I want my daughter to be brave, too.

“That was amazing!” Hannah yelled when we were back on the ground.

“I know!” I yelled back, giddy with relief and happiness.

“This is the best trip ever!” she exclaimed and I grinned at her enthusiasm. But to my surprise, I also felt tears forming in my eyes – tears of pride at my daughter, who was so sure of herself, and sadness for the girl I had been, who was always waiting to grow out of her pain, to grow into herself.

My daughter has nothing to grow out of, and yes, I am jealous of her for that. But I’ve come to realize that being jealous of Hannah is not, in and of itself, a bad emotion to have. Because the flip side of that jealousy is a fierce desire to teach my daughter how to continue to be the girl that I wish I had been. How to advocate for herself, how to listen to her body, how to have the perspective that while something might be hard in the moment, it won’t stay that way. And how to laugh as loud as she wants, always.