When I showed my daughters the ugly truth, they reminded me that beauty is more than skin deep.
It was late in the evening on Christmas and I was alone in the kitchen. As I finished up the last of the dishes, I felt a familiar prickling sensation in my fingertips. I pulled my hands out of the water and stared at them. They looked fine. No sign of anything. I took a deep breath, prayed I was imagining things, and slowly inched my fingers back beneath the stream of hot water. The tingling was immediate, and it fired through my hands toward my wrists. I started to cry. It was back.
“It” was a mysterious, full-body outbreak that no one could identify. Five years, 15 doctors, a portfolio of detailed—and humbling—self-portraits, and more blood work than two pregnancies combined yielded only the fascination and regret of every specialist I saw. Even the team at Johns Hopkins had sent me home with little more than apologies, and halfhearted compliments on how expertly I’d composed the photographs of my skin condition.
The next day a cluster of itchy bumps appeared by my knee. The day after that, massive blotches of reds, pinks and purples paintballed my arms and legs. My joints, the palms of my hands and the soles of my feet swelled up so much that I struggled to walk without limping. Sleeping was impossible. The only part of my body not affected was my face, and I’m not too proud to admit how grateful I was for that.
I knew I needed to get a biopsy before any treatment, because the only medication that would offer relief was a steroid that changed the makeup of whatever this was. But it was the week between Christmas and New Year’s. My dermatologist was out of town. The doctor I had seen at Johns Hopkins was no longer at the hospital. My doctor’s office didn’t perform biopsies, and my daughters (ages 4 and 7) were home from school on Christmas break. I was stuck, and as the pain and itchiness coursed throughout my body, I sank into helplessness.
In the middle of it all, I struggled to find the balance between being honest with my girls about what I was going through, and not scaring them. It wasn’t cancer. I wasn’t dying. The medication would eventually suppress my skin into submission. But it was really scary to look at. I was scary to look at.
Unable to sit still, I acted like a manic version of myself. I desperately needed to overcompensate, to control something. So I attempted to do what I’d done before: Meet everyone’s needs at warp speed, while somehow hiding the hideousness of my skin. It had worked during the last series of outbreaks, when the girls were two years younger, but it was impossible this time. The outbreak was worse, and my daughters were older. And not blind.
So I let them in. I wore short-sleeved shirts, encouraged their questions and answered them as honestly as I could, even though I was ashamed of my weaknesses. No, I don’t know what’s wrong with me. Yes, sometimes I’m scared. Yes, it makes me sad to see how I look. No, I’m not giving up, even if it seems like I am.
They watched as another doctor’s eyes bulged at the sight of my skin, and heard her apologize for not having answers. My 7-year-old got frustrated as I was handed the name of yet another specialist, and suggested some diagnoses she felt the doctor might have possibly overlooked: Maybe she’s allergic to something at Christmas?
Maybe she accidentally rolled around in the pink stuff hanging from the ceiling in our attic? Doesn’t that make you itch?
When we got home, the girls each said little prayers for me and then entertained themselves while I spent the afternoon numbing my hands and feet in ice water, feeling sorry for myself.
And then my 4-year-old wandered into the room. She stood several feet away from me and stared. She hadn’t come close to me since my skin had started battling itself, and I hadn’t asked her to. I couldn’t. Instead I smiled and said,
“I look pretty scary, huh?”
She nodded her head. Tears filled her eyes as she took in the sight of my arms and legs. I looked down at my skin and tried to imagine how I would’ve felt if I’d seen my mom looking like that when I was 4. When I lifted my head again she was standing next to me. She took my hands, looked into my eyes, kissed my speckled fingertips and rested her cheek in my swollen palms.
“You are the most beautiful mommy in the world.”
I don’t know if it was the conviction in her little voice, or how much I needed to be told that I wasn’t the hideous monster I felt like, but I started to cry. I thanked her in whispers as she climbed into my lap, and wrapped my stained arms around her. She looked up at me and smiled. “You are my beautiful mommy.”
Even though I could see my skin in the periphery, and I could feel the pain radiating throughout my body, I was grateful that I’d let her see me this time. Because her eyes were able to locate my heart, deep inside my skin. And in that moment, I felt her words. I clung to them. I believed them.
Arlingtonian Cindy Kane is a writer, photographer, and author of the book, Bad Mommy Moments (available on Amazon). Kane’s photography has been featured on sites including eBay Baby & Family Center, Big City Moms and Redskins.com. Her mystery condition is currently in remission. You can check out her projects at cindykane.me.