When My Daughter Reminded Me That Life With Illness Can Still Be Beautiful

I am living with autoimmune autonomic neuropathy and postural orthostatic tachycardia syndrome (POTS). This has colored my life in dark and devastating ways; the emotional weight of it often leaves me trudging through the mud of depression and anxiety. And I’ve slowly awakened to the truth that this illness story is not the only story my life tells. When you’re chronically sick, you know this discovery is a brave and profound one — we can settle into believing our condition is who we are, that our life purpose and our capacity to offer goodness to others is also broken and ill. The following story, through the living and the telling of it, invites me to remember who I really am and that I can choose life, even in the midst of suffering. 

***

I was washing the butter off the pan that grilled our cheese sandwiches. Early afternoon was here already, and when I looked downward at the soap water and caught view of my pajamas, I remembered my exhaustion from a night of poor sleep. Guilty thoughts about the day being half-wasted had tried to creep in, but they were pressed thin by my 8-year-old daughter Maryn’s roaring laughter over the way my pinky finger lifts whenever I eat handheld food. We had squeezed a grapefruit’s juice into our spoons over the course of the meal. It satisfied both of us, and also ushered in visceral memories of my father feeding me the bitter fruit, piece by piece.

I stood at the sink thinking on these things and felt Maryn’s soft presence behind me asking for a hug. She always snuggles in so sweet.

“I have a headache,” she said.

“Oohhh. I’m sorry. Have you tried drinking some water?”

“I will. I’m sure that’ll help. I think I’m gonna lay down.”

“OK. I’m glad you take such good care of your body.” I hoped to myself that I had taught her this in some way. I also felt the gritty stirring on my own internal battlefield, reminding me how hard and holy an act of self-love can be. I suggested she camp out in her bed with some books.

She disappeared for a moment. I was wringing the water out when she reemerged and moved toward me with another idea. “Maybe we should lay down in your bed and read and then take a power nap.”

I tossed the rag toward the sink’s edge and felt a loving surrender happen in me. Yes. Maybe we could both take care of our bodies today and be together while we do it.

Maryn searched her shelves and chose three books to carry in along with her princess water cup; I grabbed a half-read Maya Angelou. We settled down underneath my mismatched bedding and there was an unspoken between us about how perfect this was feeling.

I took a deep breath to absorb all of what it was and turned my head to find her precious face.

“Maryn, do you know how much goodness is in this room right now?” I lifted my chin and smiled and closed my heavy eyes. “What do you see that is goodness?” I asked. “What do you hear? Or maybe you feel it.”

“Well, I hear Jack bouncing the basketball and having fun outside. And I hear the birds chirping.”

It was my turn. “I feel the breeze on my skin,” I said. “It’s subtle but it’s fresh.”

Then we realized together that the window behind Maryn’s head wasn’t open like the one behind mine; she couldn’t feel the coolness like I could. She twisted and reached up and up and found the push too difficult.

“Let me help you.” I got it with one strong pull.

She buried her head back into the pillow, made a long stroke down the dog’s back and continued on. “And I love the smell of Happy’s awesome breath.” She smiled big toward me and waited frozen for my response, completely pleased by her own sarcastic wit.

I knew it could appear from an outside view that little was happening just then, yet not a bit of wasted day was being felt in any of the little. We settled inside the covers of our chosen books and into each other too. We connected without words and took a small few minutes to notice the life around us and nurture it within us, between us.

I don’t know how long we had been there when Maryn leaned in and broke the silence.

“There are no pictures in this book,” she whispered. “I’ll have to use my imagination.”

***

I hold that day, sickness and all, with so much gratitude. What beauty and connection would we have missed out on had I chosen to mute or withhold my presence simply because of its imperfection? These precious moments, though never painless, remind me why I want to live — not survive, but live — even if I must do it from this battered body. I’m still needed, still wanted, still a carrier of life. I can still give and receive love, however imperfectly or unconventionally it may unfold at times. In light of my chronic health problems, here is one of the most glorious truths I’ve discovered: I am sick, but I am not my illness; I am so much more than a body.

So are you, friend.

And when our bodies betray us, we still have a profound question to answer — the same one posed to the healthy person: What will I do with the life and love opportunities around me and within me today? We can either disqualify ourselves from them or we can choose to be present for them in the ways we are able.

You are still needed, still wanted, still a carrier of life — a giver and receiver of love. Where and how will you choose to notice and nourish that, and to whom will you tell your new story? Your body may be broken, but your heart — your heart is still very much alive! Please allow the world to experience it.

Follow this journey on Cyndie Randall.

The Mighty is asking the following: Share a conversation you’ve had that changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.