And when we stopped for food, the change was even more pronounced.
“Where would you like to eat lunch?” I asked her.
“Nowhere yet,” she answered. “I’m still full from breakfast.”
I didn’t see how this could be true since she’d eaten only a couple of bites of pancake before announcing that it was soggy.
“Breakfast was four hours and two states ago,” I said. “It’s time to sample the charms of another roadside diner.”
Elena groaned. “They’re all so fatty!”
“We could stop at a grocery store then,” Joe suggested, “and put together sandwiches.”
“Hmm. Nah, too much trouble.”
“Snack foods,” I suggested. “Nuts. Dried fruit.” And when Elena gave a disgusted mutter, I circled back around to the beginning. “Well, where would you like to eat, then?”
“I don’t care. Look, Taco Bell’s coming up. Dad likes Taco Bell.”
At Taco Bell, Elena suddenly turned on the chatter. She told us story after story from Drew Center with barely a break to catch her breath in between, as if it were her assignment to entertain and educate a supper club of two. Finally, Joe looked at his watch and said he’d better visit the restroom.
“Me, too,” Elena announced, jumping up.
“Hey, what are you doing with your tray?” I demanded as she swept its contents into a pile. “There’s a taco and a half there still.”
“I don’t want it,” she said.
“Well . . . You could save it for later.”
“A cold taco? Please!” And into the trash went Elena’s lunch. Once again, she’d eaten about two bites.
Elena might pass up food when she was stressed, but I hadn’t seen her reject or ration it when she was just relaxing with her family. She was a nervous, picky eater—but she did eat.
I worried over this as we drove. It must be because it was so upsetting being ordered to eat, I thought. Thanks to Dr. Petras, she associates eating with being bullied now.
So I changed my tactic. I decided not to comment if I saw her throwing away meals. The next time we stopped, I ransacked the gas station store for snacks I knew she enjoyed.
“Hey, a pecan roll!” she exclaimed in delight, looking into the bag I handed her. “I haven’t had a pecan roll in years!”
But when I was cleaning out the car that evening at the hotel, I saw that the pecan roll hadn’t been touched.
After two days, we arrived in our city, but we didn’t have a place to stay. It was strange being back in our own hometown and being homeless. Before, whenever we had come home, we had stayed with good friends. But we didn’t call anybody this time to tell them we were coming.
Joe drove down the highway access road, pulling into one hotel parking lot after another, and I hopped out of the car and checked rates. I wanted to find a weekly rate without having to go to the weekly hotels, which didn’t seem very nice. But one front desk clerk after another quoted me the regular room rate.
“It’s fixed in the system,” a clerk told me. “I’d like to give you a better rate, but there’s nothing I can do.”
Here’s what I didn’t know then: many hotels offer a special medical rate, and that medical rate can be substantially lower than the regular room rate. Unfortunately, I didn’t think to mention the reason we were in town.
The sixth or seventh time we stopped, I walked into a midrange motel, not fancy but not bottom-of-the-barrel either, and the man behind the counter asked what he could do for me. He had a strong accent, and his English was fluent but ungrammatical, like my German.
I explained that I was looking for a weekly deal but that we had been unable to find one. “It’s fixed in the system,” I said.
“I can make you a deal,” the man told me with pride. “This is my motel. I own it.” And he named a very reasonable price for the week—more reasonable than I had hoped for.
Uh-oh, I thought. Maybe the furniture is old and shabby. Maybe none of the appliances work.
But no, the room he showed me was neat and cheerful, with red curtains and red patterned carpet on the floor. I saw no stains, and I saw no scuffs on the furniture. The room was immaculate.
“My family does the cleaning,” he said. “I oversee the breakfast.” Again, I heard the pride in his voice. And I realized: This wasn’t a motel. This was a home. It was this man’s home!
My damaged, traumatized family wasn’t going to have to stay in an artificial box. We were going to stay in a home—the home of this man and his family. It didn’t matter that we were paying him money. He loved this place, and he took pride in it. In his eyes, we were his guests.
It had been weeks since I’d been home, and when I realized this, I almost burst into tears. And throughout that week, as I saw his family at work around the place—as I saw him up on a ladder, changing light bulbs, or his wife sweeping up leaves while their children played nearby—I felt again that warm swell of emotion.
It did me good to have that connection to a home again. As fragile as I was, I felt it healing me.
Dr. Harris, the psychiatrist we had come to see, also made me feel at home. He had that gentle courtesy and natural discretion that used to distinguish a certain kind of well-educated Texan when I was a girl. He was the sort of person I had met many times, and the sort of person my old Texas family had raised me to be: the one who smiles at strangers and says sir and ma’am and opens doors and picks up things people drop without being asked to. Those old-fashioned Texas manners aren’t so much a set of rules as a philosophy I’ve tried my best to live by, and I suspected that Dr. Harris lived by it, too.
We left Elena at Dr. Harris’s office to meet with him for several hours, and Joe and I went to a nearby coffee shop. Joe said, “So, do you want to take the phone card and call anybody while we’re here?”
I did want to call our friends. But at the same time, I didn’t know how to. The trauma of the last three weeks was still too fresh. I couldn’t talk about it yet. I didn’t even want to have to say, “I don’t want to talk about it,” because that would still be talking about it.
The only friends I’d seen since coming to the States on that medevac flight were a husband and wife whom we had known well in Germany. Phil had been Joe’s boss, and I had become Jackie’s partner in crime, as she put it. Phil and Jackie had left Germany while the girls were still at the boarding school.
When Jackie had learned through the grapevine that I was staying at the children’s hospital, she had taken matters into her own hands. A nurse herself, she knew better than to wait for me to reach out. Jackie had called Elena’s hospital room, and when I had answered, she’d said, “I’m coming by to pick you up for lunch.” And her tone of voice informed me that she would listen to no excuses.
That had done me so much good I couldn’t even measure it. Worlds of good. Entire worlds.
Jackie had swept by several times over the next week and dragged me out shopping with her. She had even taken me away for a “slumber party” at her house. It had been so wonderful to see her. She and Phil had been nothing short of a godsend. It would be wonderful to see our other friends, too.
But—
“Maybe not today,” I said. “What do you think?”
“No,” Joe said. “Not today.”
Elena’s MRI was already scheduled. We picked her up from Dr. Harris’s office, drove her to the imaging center, and waited in the waiting room while she went back to have the MRI. I hope she doesn’t have a blackout due to the stress of the machine, I thought, and that thought grew and grew, like a huge black balloon, until it became the subject of all-consuming dread. Each time the nurse popped open the waiting room door, I jumped and flinched, afraid of what she was coming to tell me.
But after half an hour, Elena came back out, holding a massive envelope of printouts. “That was boring,” she announced.
Then we drove to the hospital to meet Dr. Knox, the neurologist Dr. Harris liked to use. And Dr. Knox started the twen
ty-four-hour EEG.
Since Elena would be staying overnight, this meant admission to yet another hospital. Once again, I sat at an intake desk and signed handfuls of forms. It was one of the largest hospitals in town, but the place felt shabby and ugly to me. Or maybe I just wasn’t comfortable in hospitals anymore.
Then the nurse called us back to Elena’s small hospital room.
I paused by the door and struggled to control my expression of dismay. My daughter had metal probes wired all over her head, like a victim in a cheap horror movie. Dr. Knox was busy setting up a camera on a tall tripod at the end of the hospital bed, and Joe and I peered over his shoulder at the little monitor. Sure enough, there was a tiny Elena, head wired with tiny probes, sitting on her tiny hospital bed.
This is kind of awful, I thought, looking at the miniature horror-movie Elena. Then I looked around the gray, featureless room, with its television set hanging on a bracket in the corner. All of this is awful, I thought. The ugly room, the unfamiliar wires, the single camera like an alien eye, the knowledge that we were there to examine the possibly faulty insides of my daughter’s skull: it all felt dreary and upsetting.
“How do you think we can trigger one of these attacks?” Dr. Knox asked.
“I know how you can do it,” Joe said. “Clare and I need to leave. Elena doesn’t have them when we’re around.”
He was right. Although Elena had had several attacks during her days at Drew Center, she hadn’t had a single one on our drive across the country.
“Then I think it would be best if you leave now,” Dr. Knox said. “Is that okay with you?” he asked Elena.
“Sure,” she said.
I was impressed at how matter-of-fact she was being. Maybe that was because she was the only person in the room who couldn’t see how scary she looked.
So Joe and I left and drove to a big shopping center nearby. Real stateside shopping—that would be fun! But once we got there, we discovered that it wasn’t. We couldn’t seem to think of anything to shop for. We ended up spending most of our time sitting in a restaurant, nursing glasses of iced tea.
“Want to call any of our friends,” Joe asked, “and see if they can get together for dinner?”
“I don’t know,” I said. “Who were you thinking of?”
“I don’t know.”
I looked out toward the loose arrangement of skyscrapers that marked our city’s downtown, and I thought about the inevitable questions. Not that our friends would pry. Not that they wouldn’t understand. They loved us. They would be thrilled to see us, and we would be just as thrilled to see them.
“Maybe tomorrow,” I said. “I don’t feel ready for it today.”
“Me neither,” Joe said. “Not today.”
In the morning, Joe and I drove back to the hospital to meet up with Dr. Knox and see how Elena’s scan had gone. The sight of our daughter was even more shocking now. Elena looked awful! Her face was pasty, and her hospital gown was loose at the neck. White dressing pads, taped together, covered her whole upper chest and her collarbones.
“What happened?” Joe and I exclaimed.
“I don’t know,” Elena said. “It really hurts.”
“What do you mean you don’t know?” Joe asked. “How can you not know?”
“I just don’t know,” she said. “I wasn’t awake.”
Dr. Knox came in and stopped the camera. Then he connected a laptop to it and studied the footage. “Take a look,” he said to us after a few minutes.
The three of us crowded around him and peered at the tiny Elena on the screen. Sure enough, without us there, she had had one of her blackouts. The small screen showed her hands rotating, then her feet, and then her head. Since she was alone in the room, nothing intervened to stop her.
Around and around, Elena’s circling hands swept by her chest. She wasn’t doing it on purpose. She was doing nothing on purpose. The hands moved mechanically, mindlessly, swiping by her breastbone again and again. Each time they came around, her fingernails took away strips of skin.
Helpless, I watched scratches appearing on the white skin of that small mindless figure, and I felt almost overwhelming nausea. Around and around went the hands with their scraping fingernails, and there was nothing I could do to stop them. The scratches widened and spread, and I had to swallow again and again. I was afraid I might have to run out of the room.
Over time, the doll-like figure on the monitor grew more and more violent. It wasn’t a question of violent emotion. It was a case of less control from the brain. Minute by minute, the body seemed freer to carry out its own mechanical actions. Not only were the hands circling, but also the arms were circling from the elbows, and the legs began to bend at the knees. Gradually, this series of movements evolved, until the whole tiny body was jerking in a methodical series of circles, folding and unfolding at the middle like a Swiss army knife.
Suddenly, during one of those pocketknife folds, the figure flipped over the bars of the hospital bed. The camera kept filming the rumpled sheet.
Dr. Knox stopped the video. He said, “It goes on for another twenty minutes.”
Throughout the slow, mechanical fit, which had lasted forty full minutes, Elena’s nails had raked all the skin off her chest. What was left under the gauze pads was a wide expanse of weeping, gooey dermal tissue that blazed with pain like a gigantic burn. “I think I banged my head when I fell, too,” Elena told us. “It really hurts. The nurse found me on the floor.”
She couldn’t tell us why the fit had started.
“I had a headache, and it got very bad,” she said. “Then the television got really loud. The sound comes out through a speaker on the remote, and the last thing I remember is trying to wrap the remote with my blanket to muffle the sound.”
Joe looked shaken, and his face was pale. Even though Dr. Knox had stopped the distressing video, I still wasn’t sure I would be able to hold down my breakfast.
What was going on inside our daughter’s brain? Was there damage? Had the hunger strike at the military hospital caused some sort of stroke?
A certain amount of matter-of-fact callousness may be expected from a doctor who deals with seizures every day. Dr. Knox ignored Joe’s and my pale, perspiring faces and led us straight down the hall to examine Elena’s MRI. One by one, he took the big blue plastic sheets out of their envelope and set them up in front of a light box.
On the plastic sheets were slices of my daughter’s brain.
When I was seven months pregnant with Elena, I was carrying Valerie through the house, and I tripped on the living room carpet. I couldn’t let myself fall onto my face because I would have fallen on both of my children, so I threw out a knee instead. I managed to stop myself, but the whole weight of the three of us came down on that one knee. Instantly, I felt something crack in my pelvis, and searing pain shot down my legs. I crawled to the phone and called for help, and a friend drove me to the hospital.
In the ER, the nurses bundled me into a bed, and a doctor hurried in to assess me. But almost immediately, he had good news.
“I don’t think bones are broken,” he said. “I think you’ve torn a pelvic ligament. But we’re going to have to do an X-ray to be sure. I know you’ve heard that X-rays can be dangerous for a fetus, but don’t worry: your baby is far enough along that everything will be fine. We’ll go for one exposure and be as quick as we can.”
I rode a gurney up to the X-ray department. When it was over, two techs moved me back to my ER cubbyhole and pulled the curtains around me again. Joe was at work, over forty minutes away, and I didn’t want to call him and worry him until I had some answers. My friend had taken Valerie home to babysit her, so I lay there, alone and in pain.
After a few minutes, a man I didn’t know pulled the curtain aside. “Excuse me—Mrs. Dunkle?” he said. “I thought you might like to see this.” He looked shy and out of place, an introvert caught out in public, but there was a light in his eyes that spoke of Christmas.
It wa
s my X-ray. He held it up against the light for me, and I forgot all about my pain.
There, against the slick dark gray background that signifies secrets, were the big white bones of my spine and ribs and pelvis. And nestled inside those big bones was another set of tiny, perfect bones. My unborn baby lay sideways, with her hands folded against her chest and her delicate spine and ribs curved like a seashell. Her little head leaned trustingly on my lap.
No wonder the shy radiologist had left his office and come to find me. That X-ray was one of the most beautiful things I had ever seen.
But on this day, almost two decades later, as I looked at the inside of my daughter’s skull, I thought, This is not Christmas, and this is not beautiful. The blue plastic sheets reminded me of crime scene forensics, of viciousness, blame, and guilt. The two round eyeballs, protruding into the sequence of images, looked monstrous and alien, and the odd shadings and folds of brain evoked lichen and fungus growth. The images jarred my fragile spirit and upset my queasy stomach, and my imagination flashed again to the hideous, unforgettable sight of my doll of a daughter, twitching and folding in half like a pocketknife.
I thought, Everything I am having to learn now is grotesque.
“Your daughter doesn’t have epilepsy,” Dr. Knox concluded. “Her MRI is normal. I believe these seizures are psychological in nature.”
That should have been reassuring. Shouldn’t I feel relief?
But when Elena’s mind could do such things to her body, what relief could there really be?
Before we left Texas, we all had a long meeting with Dr. Harris. First, Elena met with him one last time, and then she stayed in the waiting room while Joe and I met with him. Dr. Harris was the only psychiatrist I had met all summer who didn’t treat Joe and me with coldness. He was warm, wise, and personable, and he did his best to answer our questions.
“Your daughter does have an eating disorder,” he said. “I can’t go so far as to say that she has anorexia nervosa. She may, but then again, she may not.”
“So it’s a difference of degree?” I asked. “The eating disorder diagnosis isn’t as severe as a diagnosis of anorexia?”
Hope and Other Luxuries Page 24