“Do you think she’ll have it?”
My husband and I lay in bed the night before Kol Nidre, cocooned by darkness. In the adjacent room, my son muttered as he dreamed. Further away, my daughter slept silently. During the Days of Awe, I should have been thinking about repentance, and being inscribed in the Book of Life, but I was distracted.
He turned towards me, though he couldn’t really see me, even with his eyes open. He was utterly blind without his glasses. I searched his face in the dim light.
“Yes,” he said.
There was nothing more to say.
The next morning, Emma and I sat in the physician’s office. She pressed her nose against the fish tank, little hands fitted into other handprints on the glass. My hands lay limp in my lap while a dense ball expanded in my throat. I struggled not to choke on it. When the nurse led us back, it began to pulse in sync with my heart.
The physician sat behind a wide desk scattered with photos and papers. Emma found a pile of toys in the corner of the room and I found a chair. Pasting a smile on my face, I leaned forward to shake her hand.
I’m an emergency physician, and I’ve given more bad news to people than I can possibly enumerate, but it’s different being on the receiving end. When she handed me the sturdy folder, I held it for a moment before slowly lifting its cover. The first thing I saw was a sheet of photos.
“Those are the endoscopy images,” she said.
I stared at the photographs. They could have documented the lunar surface for all I knew.
“You can see …”
No, I thought. I cannot see. I’ve never done an endoscopy.
When I looked up, she was still speaking, but I couldn’t hear. Only one sentence mattered, and it finally it came: “The biopsy was positive for celiac.”
There was no moment of disbelief. Perhaps I had known all along. She was the only child I knew who didn’t like pasta and who refused to eat birthday cake.
Shuddering, I stared at the tissues on the physician’s desk.
I didn’t want to cry.
Rationally, I understood that things could have been much worse. It wasn’t cancer or Crohn’s. It wasn’t going to kill her. It was — and is — a disease that can be managed with diet, but it would last forever and would always make her different. I glanced back at Emma, who was busy playing and wasn’t paying attention. I pulled her to me. I needed to bury my face in her sunshine hair.
After the appointment, we went to the bookstore. I told Emma about all the things that would be better now, and all the new things we’d try. We bought three cookbooks with unfamiliar titles and happy people on their covers.
I went alone to the grocery store.
That’s where I lost it, standing in the middle of the aisle, staring at all the things she’d never be able to eat again, and thinking of how her life had suddenly changed. Without special accommodations, she’d never be able to have pizza with her friends, or eat at a Bar Mitzvah. How would she eat in college? What would she eat when everyone went out for beer and wings?
Those were illogical thoughts, but that’s what grief is like. It’s not sensible. It’s a purely emotional response to immutable facts. There’s a kind of mourning when we give up one sort of life for another, even if that new life is going to be just as good as the old one. Her life would be better with a diagnosis, but my heart still cracked and bled for her. Knowing it would be OK someday wasn’t good enough.
The future is uncertain. The present is solid thing.
So I stood there in front of the organic foods and cried, hoping no one I knew would stumble across me. At least it wasn’t in front of the matzoh ball mix, where I surely would have seen at least one well-meaning person from my synagogue. I snuffled softly, hoping I would remain unnoticed and that no one would speak to me. I just wanted to mourn alone before I went home and prepared for Kol Nidre.
That day, we embarked on a new life.
Gluten is hidden in strange places, like soy sauce and French fries. There’s no risk of death with exposure, but any amount of it can cause sickness and malnutrition, so buffets, parties, and restaurants can be perilous.
Some adjustments have been simple and others impossible. Friends and family run the gamut from careless and insensitive to kind and accommodating. Over time, we’ve learned where to eat, what to pack, how to travel, what to do.
Finally, Emma is growing.
I know it’s hard for her, but I do my best to put a positive spin on her experiences. I lead by example, because in this relationship, I am the adult.
I don’t know exactly when I became the adult, because growing up is an invisible thing. We do it for much longer than the eighteen years we are allotted by convention. It’s not as if we wake up on day 6,575 of life, and that’s it – we’ve made it. I think we might grow up forever, because we are constantly climbing up the ladder of life. At some point, though, we cross an invisible threshold. Thereafter, we no longer feel as young as we did before.
On Yom Kippur, just a day after her diagnosis, I said the Al Chet, which is a confession of sins, and asked to be sealed in the Book of Life. Perhaps I was praying for myself, but when the shofar was blown at the end of the day, it was Emma I was thinking of.
I hoped that, at last, she had been granted a year of happiness and health.
Kimberly Greene-Liebowitz is an emergency physician.
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