Finding Chika, page 11
But you, as usual, saw the world differently. You viewed that wheelchair as a faster way to get places, and for me to make it happen. We used that first one to maneuver through the Cologne airport, and out to a parking lot. With the cars zooming past us, you said, “Quick, Mister Mitch! Don’t let them hit us!”
When we arrived at the flat we had rented, I carried you from the car, across the street, past a bus stop and through the front doors. When we got inside, we were greeted by two surprises:
An energetic Italian landlady named Antonietta.
And a long flight of steps.
“We have no lift here,” Antonietta said, eyeing you in my arms. “I am sorry.”
So, in addition to the wheelchair, our new routine included a series of up-and-down-the-staircase treks, with you clinging around my neck, piggyback style. There were nineteen steps. You weighed sixty pounds. So I was panting by the time we reached the top. You, of course, thought this was part of the fun, and crowed, “Mister Mitch, you need to sleep! You are tired!” I would get you inside the door, hurry you to the bedroom, and dump you on the bed, heaving air. By the time we’d get home, I’d be diagnosed with a hernia.
But you couldn’t know that. Instead, you laughed, as if this whole trip was an adventure. It almost made us forget why we were there.
The clinic in Cologne was located on the fifth floor of a multipurpose office building, with a health club on the level below it and a supermarket next door. Unlike the hospitals in Michigan, there were no fancy lobbies, no high glass, no artwork or Superman statues. Just paneled hallways, narrow exam rooms, wooden desks, thin walls. We had to make K-turns with your wheelchair just to get around.
Still, the staff was kind, and Dr. Van Gool, wearing a white lab coat, was impressive in person. A highly respected Belgian immunology expert, he came to Germany, he said, because the doctor-patient laws there allowed him to more directly help needy children. He spoke many languages, and used English in academic ways that sometimes confused us. But there was a great warmth to him. He was short and chunky, with a sweep of straw-colored hair framing a high forehead and a jolly face, ruddy cheeks, and a long, horizontal smile. You liked him immediately.
“Zo,” he began, as he began many sentences, “this is what we do. . . .”
What they did seemed brilliant in design. First they took a large sample of blood for the lab work. Then they infused you with something called Newcastle virus, a disease that is deadly to chickens but not dangerous to humans. The presence of the virus caused a response in the body’s immune system, which they studied by removing cells after five days. The hope was that whatever defense your own body created, they could boost by loading the altered cells into the previously removed ones, then changing them in the lab, millions of them, then injecting them back into your body in a vaccine. The changed cells would, in theory, stimulate your immune cells to attack the DIPG tumor.
It was like training your own army to fight an enemy you created. Which is pretty much what cancer is.
Of course, to you, Chika, this was just something we did each day on the fifth floor. You took off your pink jacket and we lifted you onto the exam table. During the infusion, they stimulated the process with modulated electro-hyperthermia, a round pad that pressed on your head and transmitted an electric field to your tumor area.
You never complained. Never asked why. You watched the movie 101 Dalmatians on an iPad (you adored that film) until it was time to go.
Once, as we were leaving, you yelled “BYYYEEE!” to no one in particular from your wheelchair, and as we exited, I pressed the elevator button and you sang, “The SUN will come OUT, TOMORROW! . . .”
I could add more details about the immunology process, but what stays with me now, Chika, as I write these pages, is how happy you were in Germany. The flat was a far cry from our large house in Michigan. It was little more than functional: a small kitchen, a sitting room, a bedroom, and a bathroom in the middle. But you loved it. It was new, with blank white walls for your Magic Marker drawings. And it was yours. More importantly, we were yours. In Germany, the phone didn’t ring. No one came to the door. I never went away to work. And all our little walking trips—to the clinic, to the market—we did together. Down the steps I would carry you, then position you in the wheelchair, lock the footrests, pull on the safety belt, and off we would go.
Cologne is quite beautiful, and in late September the sky was a brilliant blue. We rolled through the streets and the shopping plazas, and you sang so loudly, people turned as you passed. You sang anything that came to mind, “Blue Room” by Ella Fitzgerald, or “Santa Claus Is Coming to Town.” We always told you to use your “inside voice” in the apartment, but here in the trafficked streets, you could belt to your heart’s content.
We rolled down the pedestrian thoroughfare that led to the Kölner Dom, the famous, centuries-old Cologne Cathedral. The spires alone rise a tenth of a mile, pointing like arrows to the heavens.
“Oh, no!” you exclaimed when we came upon it.
“Oh, no, what?”
“Oh, no, I never see something like THAT before.”
We both stared up, and you raised an arm against the sun. You were eating a piece of a Bavarian pretzel.
“Do you know what it is, Chika?”
“A princess castle?”
“No, it’s a church. Where people pray.”
“What do they pray for?”
“Well, I think they pray for everything. They pray for their family and they pray to get better if they’re sick. They might be praying for you.”
“They don’t pray for me. I’m not their child.”
“Well, you never know.”
“But they don’t even know me!”
“People don’t have to know you to pray for you, honey. They can just pray because you’re a beautiful little girl and they want you to be healthy, right? And you can pray for them, too.”
You nodded slowly, as if mulling it over, and you swallowed your pretzel and stared at the giant steeples.
“Wow,” I mumbled.
“Wow,” you repeated.
* * *
A word here about prayer.
The only photo we have from your infancy is of you being held up by a preacher at your baptism. You have the biggest smile, your eyes facing heaven. Perhaps that was a harbinger of your joyous faith.
Prayer was all over your young life. Your mother, I’m told, prayed along with the radio, and your godmother prayed constantly. At the mission, you and the kids prayed every morning and every night and every Sunday during church services. You would not eat before saying, “God I thank you for this food I am about to receive . . .” And before you fell asleep, you said the entire “Our Father.”
So there was prayer wherever the day took you. But it was mostly ritual and gratitude.
The prayers of desperation were left to us.
One evening in Germany, to bless the food, you placed your hands together in front of you, and you closed your eyes, but your left eye couldn’t shut at all. Eventually, at night, we had to put in drops, then tape that eye closed, so it wouldn’t dry out.
You accepted this, because we said it was important. But such things, Chika, threw me to my knees. Watching you sleep with white tape over your eye? Your lying on a table as they drew more blood? My prayers were more like pleading. Please, God, why does she have to go through this? Please, God, she’s just a little girl.
All during your time with us, I heard from people about “God’s will” and “What God wants.” I would like to tell you I accepted that without resistance, but if that were true, we might never have brought you to America for surgery, or fought against conventional treatment, or taken you to Germany. Was it God’s will for you to be sick in Haiti, or God’s will for you to be healed in a foreign country?
Miss Janine was better at this than me. So many times, I heard her in her room, or with friends or sisters, softly reciting, “Heavenly father . . .” She has always found comfort in prayer, and conversation with the Lord. For me, writing was more natural. When you write, you also feel like you are in conversation, and sometimes I wrote my thoughts down, as if God could read them, and I asked for strength.
But if prayer is supposed to bring peace, I could not always find it, Chika. I will admit that. I could not understand why a child had to suffer, why the Cologne clinic had so many kids needing help to walk or talk. This does not mean I lost my belief in God. But it was tested. C. S. Lewis, the man who wrote the Narnia books you so loved, once said it is easy to trust a rope as long as you’re using it to wrap a box. But when you’re clinging to it over a deadly precipice, it’s something else entirely. As your condition worsened, my clinging became more desperate. I often got angry at the Lord.
The reason I didn’t walk away altogether, I guess, harkens to something an old rabbi named Albert Lewis once told me. He had lost his four-year-old daughter to an asthma attack in the 1950s.
I asked if even he, a righteous clergyman, didn’t get mad with God over that.
“Oh, I was furious,” he said.
Then why didn’t you stop believing?
“Because,” he said, “as terrible as I felt, I took comfort in having something I could cry to, a power to whom I could shout, ‘Why?’ It is still better than having nothing to turn to at all.”
That was the approach I took, Chika. At times I prayed, at times I howled and protested. Many times, I asked the Lord, “Why are You letting this happen?”
You never asked that. Your faith was pure. A child’s often is. But that didn’t keep you from occasional fear. One evening, you had trouble falling asleep. I sat by your bed and asked what was wrong. You said you were scared that the devil would come for you in the middle of the night.
“Don’t be afraid,” I said. “God is watching, so the devil can’t get you.”
You looked away.
“What if he comes when God’s not looking?”
Six
Courtesy of Kathleen Domish
Me
As I write deeper into these pages, I find I am growing physically ill. My feet tingle. My hands get clammy. My head feels clogged and slightly dizzy. One morning, sitting at the keyboard, I begin to tremble, my pulse races, and I feel sweat beading on my forehead. My cheek goes numb. I wonder if I am going to pass out, or worse, suffer a stroke.
It happens several times. I visit doctors. Their tests come back clear. MRI. EKG. Blood work. I am told to hydrate more, drink less caffeine, get sleep. Perhaps not sit so long hunched over the screen, writing this story, as my spine and hips and neck are paying a price. But I continue to feel out of sorts, and sometimes my blood rushes and I feel as anxious as an accused man awaiting a jury.
Janine has her own diagnosis. “You’re sitting there every day, revisiting a really hard time. It’s emotional. You’re grieving. You can’t be surprised that your body is reacting to that.”
“But why now?” I say, pushing back. “I made peace with all this already, didn’t I?”
Janine looks at me as if I’m being naive.
“You loved her, Mitch.”
That is all she says.
And that is what makes telling this last part so hard.
We had a routine about love, Chika and me. I’m not sure when it started. I would slide in front of her if she seemed sad, and I’d say, “Chika, have I told you today how much I love you?”
And, knowing what was coming, she would play coy.
“Nooo,” she’d answer.
“This much!” I’d reply. And I’d stretch out my arms. With each passing week I’d stretch farther, because I knew she was measuring. In time, I advanced to hooking my arms behind my back, and spinning to show her my grip.
“Thisssss muchhh,” I’d warble, straining.
It brought a laugh, a satisfied laugh, because she knew I had gone the limit for her. She was always a little happier after that. A little calmer. And so was I.
I still remember the first time Chika said “I love you.” It took a while. She would welcome the words from me or Janine, but she seemed in no rush to return them.
One night, when she had been with us maybe four months, I was in an airport and called home. Chika was energized. She enjoyed having Janine to herself. They were playing some sort of game.
“OK,” I said at the end, “you be a good girl.”
“I will,” Chika said.
“I love you.”
“I love you, too!”
I blinked and felt a rush of joy. I wanted to shout to Janine, Did you hear that? Did she really just say it?
But Chika hung up the phone, in a hurry to return to playtime, and I was left staring at the cell in my hands. It felt wonderful, just the same.
Us
“Mister Mitch?”
Hmm?
“We went to Germany three times.”
That’s right.
“I saw the zoo. And the bridge with all the locks.”
She is talking about the Hohenzollernbrücke in Cologne, which straddles the Rhine river. Couples paint “love padlocks” then snap them onto the bridge’s gated wall to symbolize their commitment. There are more than forty thousand now. The weight is becoming problematic. Love, apparently, can at times be too heavy.
“Why didn’t we go back again?”
To Germany?
“Uh-huh.”
We couldn’t.
“You mean I couldn’t,” she says.
I hesitate.
That’s right, I say.
“Yeah.” She makes a face. “I know.”
She walks across the room, stopping at bookshelves to examine their contents. It is cold and wintry outside, and this morning she appeared by running toward me from the office door, her feet making no sound on the carpet. I turned to see her last few steps before she rolled into a summersault, then landed on her bottom and yelled, “Yeeouch!”
I realize, watching her now, how much I studied Chika’s walking during her time with us. Like her left eye and mouth, it was a barometer of her disease. I’d seen her stiff-legged when she first arrived, and unsteady after the surgery and steroids. I witnessed a return to almost normal after radiation, then a favoring of her left side as things declined.
Once, between trips to Germany, I saw her stomp away from us after growing angry over having to take some medicine. She yelled, “I DON’T WANT TO!” Then her legs gave way. She tumbled to the floor. I went to help her, but she pushed away and crawled to the bedroom steps. She pulled herself up one, slid down, then pulled herself up again. Chika surrendered many things during her battle with DIPG. Her will to fight was never one of them.
“Hey! Mister Mitch!” she says now.
I look up. She is holding the yellow pad. She points to the next-to-the-last item.
“Is this about Miss Janine?”
Lesson Six
When a Marriage Becomes a Family
Well, yes, Chika. I should have written about her sooner. But just as you were a revelation, so was what I learned about my wife.
Do you remember your first Thanksgiving morning with us? Miss Janine and I were in bed, talking. You pulled yourself up and crawled in closer.
“Are you going to work now, Mister Mitch?”
“Not today.”
“Are you going to write a book?”
“Not today.”
“Do you have to go somewhere?”
“Nope. I’m gonna stay here with you.”
You looked away.
“Don’t you want me to stay here with you?” I asked.
“Yeah . . .”
“But?”
“Um, don’t you have to go to work or something?”
Miss Janine laughed. She knew you wanted to snuggle with her, and you needed me to clear out.
I was proud of how you tried not to hurt my feelings. But as I got up to make some coffee, I looked back and saw the two of you, already entangled, pulling up the covers, and I felt something else, something big and warm and satisfying. Your bond with Miss Janine had grown so naturally, it was hard to remember when it wasn’t there. But it changed her.
And it changed the two of us as well.
Before you came to America, I kept updating Miss Janine. Chika may need help. Chika may need surgery. Chika may need to stay with us. I realize now I never asked if that was OK with her. And she never made me feel as if I had to.
That is no small thing. This is her home as much as it is mine. But she opened her arms the minute you arrived. And you found, in that embrace, something I could never give you.
It was Miss Janine who bathed you, and Miss Janine who dressed you. It was Miss Janine who picked out your Mary Jane shoes and helped you with the clasp. It was Miss Janine who put clips in your hair and whose hand you took when you marched toward the shower and yelled back at me, “Privacy, please!” When, out of the blue, you asked, “If I get married and I have to go potty, who is going to help me out of my wedding dress?” It was Miss Janine who said, “I will.”
It was Miss Janine who sat and painted rainbows with you, and who made you blender drinks of supplements and got you to drink them. It was Miss Janine who soothed you if you wet the bed and were too embarrassed to tell me. It was Miss Janine who read you Bible verses and reviewed your schoolwork and who slept in the room your first night in a hospital. It was Miss Janine’s long, dark locks that you liked to brush and pull over your head, as you leaned in and squealed, “Look, Mister Mitch! We have the same hair!”
When you did that, she would laugh and hug you close, and I’d be reminded again of how foolish I had been in the early years of our marriage, when I worried about having children. Men often fear that once they start a family, their wives will focus more on the kids, and their relationship will dwindle into car pools, chores, and laundry. This is based on something pretty childish in itself: an unwillingness to share attention.
But seeing you and Miss Janine together only left me more fulfilled. You think you know your spouse after so many years together, and I thought I knew Miss Janine completely. I knew her moods and what moved her, I knew her sounds and her looks. I knew that she was warm to strangers and loved her family fiercely, and had a razor wit and was an amazing singer who often felt too shy to demonstrate how good she was. I knew she loved fresh bread, calamari, the Beatles, gospel singing, and having everyone over the house, crashing on couches. I knew she often had joint pain, which she endured quietly, that she couldn’t hang up on telemarketers, that the death of her older sister Debbie was a mountainous tragedy in her life. I knew she gave everyone in her world, no matter what harm they’d done, a second and a third chance.
