Hope and Other Luxuries: A Mother's Life With a Daughter's Anorexia by Clare B. Dunkle
Very slowly, link by link, I worked my way up the chain. One of the supervisors tried to argue with me, but I declined to argue. Another one kept me on hold for an hour. I plugged the phone charger in, kept the phone to my ear, worked crossword puzzles, and answered promptly and cheerfully each time she broke in to see if I’d given up yet and hung up the phone.
Off and on, Clove House called me on my cell phone. They were working to try to get Elena’s care extended, too. They weren’t having much luck on their end, but they cheered me on.
“We can put together our best arguments,” their staff member told me, “but nothing can replace the client calling. You’re the one who pays their premiums. You’re the one who can submit complaints to your employer and persuade your fellow employees to switch to another insurance plan. We don’t have that kind of pull.”
“I don’t mind doing it,” I said. “It’s the least I can do. I have to admit, I get chills at the thought of Elena coming back home.”
“It’s extremely important that she stay here,” the staff member said. “It took a lot of courage for your daughter to seek the help she needs. I’ll be honest with you. Her physical health is very fragile. Her EKG and blood values are not normal. She could be days away from a heart attack. If she doesn’t get this turned around, it’s likely that she won’t survive another month.”
In a dream, I heard myself thank the woman and say good-bye. My hand shook as I set down the cell phone. So I had been right when I had roamed my dim house and it had seemed that dawn would never come. All my fears were coming true. This was a matter of life and death.
In my other ear, a voice broke in on the flowery hold music. “Are you still there?”
“Yes, I’m here.”
“The supervisors are all in a strategic meeting. I don’t know when they’ll be out. Can I—please—have my supervisor call you back?”
“No,” I said. “I’m very sorry, but no. I’ll be happy to hold for as long as that meeting lasts.”
“But this is keeping me from doing my work!” she said.
“My daughter is your work,” I answered. “My daughter’s survival is at stake. I’ll hold on your line until this time tomorrow to get my daughter the care she needs.”
One hour melted into another. The day crept slowly by, and still I was sitting on the floor in my pajamas with the phone held up to my ear. “My daughter’s heart was damaged the last time her weight was this low,” I told the next supervisor. “Her care team says that her heart rhythm is abnormal. Do you want to be the person whose name and employee number goes down in the letter I submit to Washington, DC, when I tell them that the insurance company they chose for their employees caused my daughter to die?”
“Her case was reviewed,” the woman told me. “You have the name of the specialist in charge. There’s nothing I or anybody else can do to change that decision.”
“I don’t know about anybody else,” I said. “But I know what you can do. You can transfer me to your supervisor. Please.”
“Well . . . Can you please hold?”
“Yes, I’ll be happy to.”
And flowery music played in my ear again.
A woman’s voice came on the line. There was nothing new about that. But this voice sounded different. It sounded like it was used to giving orders.
“This is Clare Dunkle,” I began, “calling for patient Elena Dunkle, insurance card number 509 . . .”
“Mrs. Dunkle,” the voice interrupted, not unkindly. “I know who you are.”
The woman proceeded to explain that she was authorizing Elena to stay at Clove House for seven full days, during which time the staff there could collect the data they needed to justify a longer stay. Then the insurance company would okay further residential care from week to week.
“Because your daughter went straight from no care to almost the highest, most expensive level of care,” she said, “that put us in a predicament. No one had put together the paperwork to justify this level of care. No one had said, ‘We tried to treat her with day therapy’—for example—‘and that treatment failed.’”
“That makes sense,” I said. “But we couldn’t persuade Elena to seek treatment until she hit bottom. And now that she’s hit bottom, there’s no time to lose on care that isn’t going to work.”
“Yes, I understand,” the woman said. “In fact, it isn’t all that unusual with this kind of illness. Now, I’m going to make arrangements to have your daughter’s case flagged so that I can keep track of it personally, and we need to get in touch with her facility to give them the authorization codes they need. I have to let you go now, but I promise that someone will call you within half an hour and let you know when our work is completed.”
Hang up? Now? After all this effort?
But—what if it was nothing but a trick?
“I . . . I would prefer to hold,” I said.
“Yes, I know you would,” the woman answered. “And I understand your concern. But I’m not talking to you from my line. I’m at the desk of one of my employees. Here is my full name.” And she gave it to me. “Here is the number that rings at my desk.” And she gave me that, too. “I am an associate director at this company, and I am in charge of patient relations. One of my employees will call you within half an hour. Mrs. Dunkle, I give you my word.”
What could I do? I thanked her, and I hung up. My ear tingled from the cool rush of air and the sudden silence.
In an instant, panic overwhelmed me. Had I done the wrong thing? Was the number this woman gave me even real? Would I have to start all over again? Would they know my name now and keep me holding at the lowest level until the work day ended and everybody left for the weekend? Would my poor damaged daughter return home, bitter and frustrated, and disappear into her bedroom for good?
I couldn’t think. I couldn’t think what I should do. I couldn’t calm myself down. So I stayed on the floor, staring at the phone as if all our lives depended on it—as if it were up to me not to break the spell.
After about fifteen minutes, the phone rang. I stabbed the talk button, and a motherly-sounding woman introduced herself.
“My name is Lynn,” she said, “and I’ll be Elena’s assigned advocate in the insurance company. I used to be a behavioral-health nurse before I switched over to the dark side and started working insurance. Nowadays, I work with complicated cases like your daughter’s to make sure nothing gets overlooked. Elena is all set up until this time next week, when we’ll review her progress. But I don’t foresee problems extending her stay beyond that. Your daughter’s health is very fragile. It’ll take weeks of residential treatment before she’s ready to move to a lower level of care.”
This was so exactly what I had been waiting to hear all day long that hearing it didn’t feel real. All day, I’d been on high alert, rehearsing my arguments and keeping them ready. Now I couldn’t think what to say.
“So, your daughter is in good hands,” Lynn concluded. “Mom, you’ve done a good day’s work. It’s time to look after yourself.”
At this unexpected thoughtfulness, a lump rose in my throat, and tears swam in my eyes. “Thank you,” I said to Lynn. “Really. You don’t know what this means.”
Life and death, I thought. Life and death.
“Thank you, Mom,” she answered with a nurse’s brisk kindness. “Your daughter is lucky to have you. Now, here’s my number. It’s a direct line. If anything goes wrong again, I want you to call me first.”
I scribbled Lynn’s number down next to the number of the associate director. Then I thanked her once again and hung up. Slowly, I uncrossed my legs. Time to stand up. But I couldn’t just yet. My leg had fallen asleep.
Time to call Joe and tell him the good news. And time to take that shower.
It was midafternoon. I’d been on the phone for almost six hours.
CHAPTER TWENTY-NINE
So Elena stayed in treatment. She called us every few days to check in—brief, laconic calls. If they didn??
A week later, Joe and I were standing in the garage, planning where to put things. Valerie, Clint, and Gemma would be out next month. It was time to turn my office into a bedroom.
“Let’s keep one side of the garage free,” Joe said. “I’d like to still be able to pull the Bimmer in at night.” We went back to my office and started packing books into boxes.
“I took Tor to the vet this morning,” I said as I cleared off a bookshelf. “He’s got new food to help with the throwing up.” Then I pulled the bookshelf out and set it aside, happy once again that we had had the foresight to go modular with our shelves.
Joe sighed. “Smart cat! Tor always knows when things are about to change.”
This change might be stressful, but it was a change I was very much looking forward to. I couldn’t wait to have my grandbaby in the house, and I couldn’t wait to spend time with Valerie and Clint. I’d been delighted and impressed by how Valerie was taking to motherhood. She called me almost hourly with updates. Gemma had colic, and as far as I could tell, Valerie and Clint never seemed to put her down.
Joe smiled as I told him about this. “They’ll figure it out,” he said. “Sooner or later, you have to let them cry it out.”
“Valerie told me, ‘I love it when other people hold her, and she cries, and then, when she comes back to me, she stops crying.’ She says, ‘I know it’s mean of me, but I can’t help loving that.’”
Joe’s eyes softened with memories. “I did my fair share of carrying her around.”
“Remember playing airplane when Valerie was a month old?” I said. “Flying her around the room, making jet noises? Now you’ll get to play airplane with your grandbaby.” And I picked up a stack of shelves to take to the garage while Joe hauled out a box of books.
Genny trotted out to the garage to explore while we had the door open. She found something interesting next to the trash can, and I made her put it down. At least the cats are outside now, I thought as I shooed the old terrier into the house again. Otherwise, Simon would probably be spraying in here.
The phone rang, and I walked inside to pick it up. It was Elena, calling from Clove House.
“Oh, hey, hon,” I said. “I was going to call you tonight to tell you I ordered those books you asked for. But I thought it was against the rules to call in the middle of the day.”
“Screw them and their rules!” she shouted. “I’m done with this place!”
Okay, I thought. This is different . . .
Elena was talking now, very loud and very fast. It seemed that she had gone out for her lunchtime smoke break, and one of the staff said she didn’t wait for a proper escort. Or maybe she had gone out for two smoke breaks instead of one—I couldn’t quite make out the details.
“That bitch!” she said. And then, “Yes, that’s right, I said you were a bitch!”
“Elena . . . ,” I began.
“So get me a plane ticket, because I’m leaving!”
My orderly mind commenced boggling.
“You’re—what?—You’re leaving treatment because of a smoke break?”
But before I could finish my sentence, Elena had hung up the phone.
I called Clove House back and asked to speak to Elena’s care team. Dr. Greene, her psychiatrist, was calm and upbeat. “Don’t worry,” she said. “Elena’s just adjusting to some new medication.”
Adjusting? I thought. That’s adjusting?
I walked back out to the garage and told Joe about it. “It was crazy!” I said. “I’m really glad that’s over.”
But it wasn’t over. It was just the beginning.
During the next couple of weeks, call after call came in. Each one highlighted a new clash between Elena and a staff member.
“This is bullshit!” she yelled one morning before I could say hello. “I’ve had it! I’m done!”
At least now I knew what to expect. I listened patiently through the rambling complaints.
“Elena, we are not buying you that ticket,” I told her after she was done. “Not for something as minor as who oversees your breakfast.”
“I knew you’d take their side!” she yelled, and the line went dead.
When I talked to Dr. Greene about the calls, she sounded unruffled. “Elena’s on a lot of new medication,” she said, and she rapidly reeled off a dizzying list of drugs. “It’s a work in progress getting her stabilized. Over time, her mood swings should stop.”
But Emily, Elena’s therapist, was less optimistic and more blunt.
“I haven’t encountered this level of hostility in a patient before,” she said. “Elena just simmers with anger. And I’m not sure why, but most of it seems to be directed at me.”
I remembered those long days during Elena’s senior year, when I had been the stepping-stone Elena needed to stomp in order to make it through her exhausting days.
“She’s done that to me when things got really bad for her,” I said. “Maybe you’re the new me.”
Joe and I finished getting the house ready for our long-term guests. It had been hard work, and I was happy I could look forward to a little vacation. I’d gotten a call from a librarian in central Texas a few weeks before.
“We’re holding a book festival at the end of February, and I hope you’ll attend,” she had said. “Can we book you for the week? We’d like to arrange to have you visit our middle schools.”
I had quickly agreed to a reasonable price. The chance to pamper myself in a nice hotel and talk to teens about books all day—really, I should be paying her.
“Great!” she had said. “And I’m ordering copies right now to make sure all the libraries you visit will have your books, the Hollow Kingdom trilogy and By These Ten Bones.”
“What about my new book, The Sky Inside?” I asked. “The one about a boy and his futuristic dog that came out last year?”
“Oh!” she said. “You have a new book out?”
Poor Martin!
As I was packing my suitcase the night before my trip, the phone rang again. I cringed when I saw that it was Elena.
“Hello?” I said cautiously.
But Elena wasn’t yelling this time. In fact, she sounded only half awake. “They put me on a new medishin. Medi . . . cine,” she amended.
A new medicine? Another one?
“How do you feel?” I asked cautiously. “Do you feel more relaxed?”
“I feel like shit,” she muttered. “I’ll talk to you later.”
And the line went dead in my ear.
The next morning, I packed my car, loaded a CD holder with my favorite music, and drove a four-hour-long stretch of Texas interstate. The festival committee had put me up in a hotel suite for the week, and I’d brought The Mystery of Edwin Drood to help me pass the time. There was no one to clean up after and no one to cook for in the evenings. I could lie in bed and read to my heart’s content:
Not only is the day waning, but the year. The low sun is fiery and yet cold behind the monastery ruin, and the Virginia creeper on the cathedral wall has showered half its deep-red leaves down on the pavement. There has been rain this afternoon, and a wintry shudder goes among the little pools on the cracked, uneven flag-stones, and through the giant elm-trees as they shed a gust of tears. Their fallen leaves lie strewn thickly about. Some of these leaves, in a timid rush, seek sanctuary within the low arched Cathedral door; but two men, coming out resist them, and cast them forth again with their feet; this done, one of the two locks the door with a goodly key, and the other flits away with a folio music-book.
I could see it all: the great cathedral with its massive gray tower and the yellow and red leaves curling in an eddy at the feet of the black-robed men. I took another Hershey’s Kiss from the bag at my elbow and gave a little shiver of happiness.
Now, that was writing!
The next morning, I tapped the first address int
Seventh graders are my favorite audience because seventh grade was my least favorite year. When I talk to seventh-grade students, I feel as if I’m talking to my own ghost. I respect you, I try to tell that ghost, along with its living peers. I know how hard this year can be. You’re brave, and you’re going to get through this. Life will get better, I promise you.
A girl came up to me at the second library I visited. “I like Marak best,” she said. Her manner was shy but also bold, as if the two of us shared a secret.
“He is amazing, isn’t he?” I said. “Never without a plan!”
“Yeah,” she said, relaxing into a smile.
This is the way I like to talk about my stories. I don’t know what to say to the ones who come up and say, “I love your books!” It’s so broad it’s like telling God, “I really like your universe!” I can imagine Him thinking, Which part? The nebulas? The anteaters? Wisdom teeth? What?
But when a reader comes up and talks to me as if my characters are alive, well, that’s how they are to me, too. Then it’s as if we both know the same people. We have common ground. We have things to talk about.
“I wish you’d have them change the book cover, though,” the girl continued. “Kate’s eyes aren’t dark there like they are in the books.”
“I don’t really . . . But wait a minute. Kate’s eyes are pretty light. After all, they’re blue.”
“No, they’re not,” she said. “Kate’s eyes are brown!”
Look, I’m her creator! I wanted to say. I know perfectly well what color Kate’s eyes are! But then it dawned on me: this girl’s eyes were brown.
“Well, you know how it is with book covers,” I said. “It’s what the publishing house wants. They don’t let us authors have much power there.”
“Too bad,” she said, and she rewarded me by relaxing into another quick smile before her teacher came over to shoo her away.
After three days of library visits, I felt like royalty. Lovely long days of talk about books and reading. Lovely long evenings of chocolates and Edwin Drood. Such splendid, confident prose!