“But don’t you see,” the social worker said, “that you’re doing the same thing as your daughter? You’re both dissociating! Elena is dissociating by escaping into her blackouts, and you’re dissociating into your books.”
What?!
How dare she!
How dare she!
Did this woman have the foggiest idea what dissociation really looked like? Had she ever wandered, lonely and miserable, through a chaotic, paper-piled house while every single person in the world found other things to do? Had she ever lain in the dark, racked with terrible pain, while doctors shrugged and smiled and the adults who should have helped stood back and snapped out insults? Had she ever sat next to the phone, hour after hour, single-mindedly willing it to ring, while the adults who had been closer than family—closer than family!—stepped away and closed off? Just stopped caring?
That was dissociation: it was pulling away from risk to safety—just flipping off the switch that says I care. And me, I had actually lived through the hell that happens when adults do that to a child. Is that what this woman actually thought my books were—just a spa where I hid to escape my obligations? Is that what she actually thought fiction was—nothing but a pretty little playground?
God, how I despise those people who put on their long “I’m a grown-up now” faces and sit in judgment of the value of fiction! They keep themselves safe inside their rigid little closed minds and live out their rigid little lives. And if anything they don’t understand comes along, they shrill out their little judgments, and they attack it.
Dissociating into my books! . . .
I took a deep breath. Logic and reason—I needed logic, and I needed reason! I needed to think this through. Why would she attack me? Here was a thought: maybe it had been a bold gambit to try to shock me into tears.
Well, it was going to take a whole lot more than that.
“Dissociation.” I echoed the insult in my stiffest, most unemotional voice. “So that’s what you think my books are. Well, I like to think that there’s a difference between me and my daughter. I get paid to do what I do—pretty well, in fact. My dissociative states are going to put her dissociative states through college.”
And that was the end of my talk with the social worker.
As I stalked back to Elena’s hospital room, Dr. Costello waved me over. I could see by his face that he had news.
“The endocrine tests I ordered have come back,” he said. “Elena is at the beginning stage of Hashimoto’s thyroiditis. That’s nothing to worry about. We’re going to start her on a low-dose thyroid replacement. She’ll take it every day.”
“Is that what caused her weight loss?”
“No. Her thyroid levels are mildly deficient. If anything, that might make her weight go up.”
I tried to think of everything I’d ever learned about the thyroid gland. All I could remember was that it was shaped like a butterfly and needed iodized salt.
“Isn’t thyroid trouble another old person’s problem, like Elena’s heart?” I asked. “What happened to her thyroid?”
“Hashimoto’s is an autoimmune disorder,” Dr. Costello said. “It’s fairly common,” he added reassuringly.
I didn’t feel reassured.
“So, her thyroid,” I said. “First her heart, which the cardiologist didn’t understand at her weight; then the blackouts; and now the thyroid. What’s the link? Could anorexia nervosa cause the thyroid damage?”
“I don’t think so. I think they’re unrelated.”
“Three different chronic health issues in one month, and they’re unrelated?”
“I don’t think they’re related.”
“So now Elena will have to be on thyroid medication for life. And what about her heart? What did the cardiology team say we should do about her heart?”
“They don’t think it’s a grave concern. They say that when her anorexia nervosa improves, her heart will heal.”
“And did anybody ask them how her anorexia nervosa managed to cause this when she was at a normal weight in June? And how her anorexia nervosa is failing to improve even though she’s now consuming several thousand calories a day?”
Dr. Costello sighed.
“Mrs. Dunkle, I’m sorry,” he said. “I wish I had better answers, but the fact is, I just don’t know. The good news is that the Hashimoto’s is very mild. It’s probably only turned up by accident. And concerning the anorexia, we’ll just have to wait and see. Drew Center says they’re ready to take her. We’ll transfer her there in a couple of days. They’ll be the best ones to examine her for anorexia.”
He hurried off, and I continued my angry march to Elena’s room.
Dr. Costello was a good man and a fine doctor, but in the end, this hospital had let me down. I had come here to find answers, and all I had gotten were more questions. It had all gone on long enough now—three whole weeks since Dr. Petras had forced Elena into the hospital and her pediatrician had failed to back him up. It was time for us to get this anorexia issue sorted out once and for all.
The sooner we could get to Drew Center, the better.
CHAPTER SEVENTEEN
Two days later, I once again followed Elena’s gurney out into the sunlight. This time, the EMTs were loading her up to drive her to Drew Center.
As I waited my turn to climb into the ambulance, I thought about the day ahead. We would arrive at the eating disorder treatment center, where the experts would be waiting. There would doubtless be some sort of initial consultation and probably an evaluation as well. Then would come the point at which Elena and I would sit down with them, and they would go over their findings. I would ask about the things that had baffled me, and they would give educated answers. They would sketch out an appropriate treatment plan, and we would have a way forward.
After three weeks of questions and professional disagreements, we would have a way forward at last!
The young EMT reached down a hand to help me up, and I took a seat in the back of the ambulance next to Elena. This was my first time riding in the back of an ambulance. It combined the ugliest, most utilitarian features of an enclosed truck bed and an emergency room. It wasn’t exactly an attractive place.
Traveling with Elena was Elena’s medical file. At this point, it was about three-quarters of an inch thick, housed in an impressively oversize interoffice mailer. This seemed to me to be a pretty hefty document to deliver the message WE DON’T KNOW. As the ambulance bumped along, the EMT skimmed it and gave a snort. The first set of pages, he said, was nothing but one long rant.
That would be Dr. Petras, I thought. And yes, a rant sounded about right.
After an hour-long drive through stop-and-start city traffic, we arrived at Drew Center. I had gotten a little spoiled by the welcome at the children’s hospital and expected us to be ushered right in to wherever Elena belonged—the privilege of the ambulance-driven. But this place wasn’t going for that, so while the EMTs loitered in the lobby behind me, I sat at an intake desk and signed dozens of forms.
That was all right. Hospitals run on paperwork. I understood that.
When the forms were out of the way, Elena’s EMTs put her into a wheelchair, and a tech wheeled her out the door and under big shade trees, across what looked like a college campus. At one of the redbrick buildings, we got buzzed through a locked door into an empty waiting room. The tech took the wheelchair away and left us there alone.
Elena and I didn’t speak. We fidgeted in our chairs. I didn’t know what she was thinking, and I didn’t want to ask. She had chosen not to discuss anything about her medical care, and I hadn’t pressed her to. I wanted to respect her autonomy and privacy as much as I could. And, at the back of my mind, I still feared another blackout and seizure.
But as for me, I couldn’t have been happier or more excited as we sat in the little waiting room. I kept thinking: This is it!
Any minute now—the consultation. The chance to ask questions. The chance to hear real answers!
The inside door opened, and a young woman leaned out.
“Elena Dunkle?”
Elena left the room. It was an initial consultation, the young woman explained, and even though my daughter was a minor, I wasn’t supposed to attend. But that was fine. I had already gotten used to being excluded. If it weren’t for the puddings I’d been bringing her every day, I wouldn’t even have seen her eat for the last week and a half.
But soon we would sit down together, and then we would find things out. Soon, we would have our answers.
Over and over, while I waited, I ran through my list of questions for the experts:
What are the diagnostic factors that determine anorexia nervosa? Can you explain them to me, and can you explain whether or not Elena’s history indicates that she meets them?
What do Elena’s blackouts have to do with the anorexia diagnosis?
The endocrinologist says that her Hashimoto’s thyroiditis is mild and appears to be recent. Could the hyperthyroidism phase of Hashimoto’s be responsible for her weight loss and dissociations?
How did her heart get so badly damaged if her weight was so recently normal?
If restricting caused her weight loss, why haven’t the feeding tube and supervised meals turned that weight loss around?
And, most important of all:
Even after all the weight that Elena’s lost in the last two hospitals, she doesn’t meet the established criteria for anorexic inpatient care. So, if you had seen her at the weight she was when Dr. Petras first put her in the hospital—a higher weight by several pounds than her weight now—would you have agreed with his diagnosis?
I had my questions in order. I was ready for this. I was ready for answers.
The young woman returned and waved me into a small office. I was surprised to see that Elena wasn’t there. On the desk was one of Elena’s suitcases.
“These are the things your daughter wasn’t allowed to keep in the facility,” she said, opening it and exhibiting items as she spoke. “We don’t allow hoodies, jackets, or oversize clothing, only simple cardigans. It’s cold here, so she asked if you can buy her a sweater. And her razors weren’t allowed, either. She’s asked if you can please bring her an electric razor.”
I closed up the suitcase, feeling odd. In my head, the questions were still running:
. . . factors that determine anorexia?
That’s what was wrong. We were off script.
“So, I’ll be meeting Elena’s care team, right?” I asked.
. . . her heart be so badly damaged if her weight loss . . .
“I’m not sure which therapist she’ll have,” the young woman answered. “If you like, I can set up an appointment with Dr. Moore.”
. . . Heart damage . . . Recent thyroiditis . . . What are the factors . . . ?
“Then—you mean, there isn’t an appointment?”
The young woman was already on the phone, conferring with a secretary.
“Okay,” she told me, “that’ll be tomorrow at nine o’clock.”
“Tomorrow,” I said stupidly. “Tomorrow?”
Initial findings . . . my brain kept playing. Consultation, questions, diagnosis. Treatment plan. Way forward . . .
“But . . . ,” I said. “But what about today?”
“You can come back at seven o’clock and see Elena,” the young woman said brightly. “Visiting hour is from seven to eight in the evening.”
That’s when it finally got through to me: the meeting I had been looking forward to with such eagerness wasn’t going to happen. I could feel myself deflating, shoulders slumping, excitement draining out. The buzz of questions in my head stuttered to silence.
“Then do you mind if I borrow that phone for a minute? I need to call my hotel.”
As I climbed into the hotel shuttle, my disappointment was practically choking me, but the shuttle ride through peaceful green neighborhoods cheered me up. The hospital had been like a walled city. I had barely stepped outside. And ambulances aren’t known for their picture windows.
Now, I was out in the sunshine, and I was seeing simple things I hadn’t had the chance to see in weeks: mailbox planters and swing sets, owners jogging with their dogs, squirrels making suicide dashes across the road. And look, here was a shopping mall just a couple of blocks away from my hotel.
The front desk staff raised my spirits further. They joked with me and made me a cappuccino to order. And I opened my hotel room door to discover that, without being asked, they had upgraded me to a suite.
The views out my windows weren’t boring roof gravel this time, either. They were those same nice neighborhoods and cute little shops I had passed on the drive in. Now I was looking down at them through a rustling green canopy of trees.
Trees! The children’s hospital had had lawns and bushes, but no trees.
So I pushed open the curtains as wide as they would go and let myself relax. Hopefully, Elena was getting good care. At least she was out of bed and free of IVs. That had to count for something. And for the first time in weeks, my day didn’t have to revolve around hers.
I had my own room. I had my own bathroom! I didn’t have to stay cooped up in a building full of the sick and injured and dying. I could walk down the street on this gorgeous summer day and go anywhere my feet wanted to take me.
So I did.
First, I walked to the mall and bought Elena the electric razor she had asked for. But the mall felt too much like the hospital. I didn’t want to stay indoors. So I wandered back to my hotel, basking in the hazy afternoon light. It warmed me through and through, until I felt as relaxed and sleepy as a cat.
Should I go to visiting hour? I thought as I entered the lobby. The shuttle driver was nice about it, but I don’t want to wear out my welcome.
I entered the elevator and punched the button for my floor.
No need to decide yet, I thought. I have several hours to kill first. Maybe a nap.
I walked down the long hall and swiped my room key.
A nap in my own bed! After sleeping for days on pullout furniture, I have my own king-size bed!
The door clicked open.
The first thing I saw was the blinking red light on the phone.
The message didn’t make sense. Or maybe it made too much sense. Dropping my bags, I dialed the number it gave me.
“Hello, Drew Center? This is Elena Dunkle’s mother. You say she fell? Is she all right?”
The voice on the other end of the line was crisp. “Mrs. Dunkle, do you have your daughter’s glasses?”
“Of course not!” But that came out sounding a little rude. “What I mean is, I couldn’t have them. Elena wears them constantly. She’s practically blind without them. Can you tell me, please—what’s this about?”
“Elena fainted at our facility, and we called an ambulance when we couldn’t bring her around. She’s at the emergency room right now, so don’t come to visiting hour. I don’t expect her back until tonight. But I got a call from the staff member with her that she doesn’t have her glasses. That’s why I’m checking with you.”
“But—my God!—is she all right? When did this happen? Where is she?”
And my brain began whirling again:
Insurance. Medical tests. Preferred provider hospitals. Is it her heart? Her brain? Oh, my God!—a stroke?
A steely edge crept into the crisp voice on the phone. “I’m sure your daughter’s fine, ma’am. You don’t need to concern yourself with where she is. She’s our responsibility, and we’ll see to it that she gets the care she needs. I’ll let the staff person know that you don’t have her glasses. Thank you for calling back. Good-bye.”
And the click of the receiver left me alone with a swirling cloud of worries.
Another emergency room! Would Elena end up in the ICU again? Was her heart weaker than Dr. Costello had thought? Would we end up spending more weeks stuck in a hospital room while her condition remained unsolved, or even got worse? Her first day out of bed, and she had fall
en again! Why did she keep blacking out?
It’s dissociation. It’s not anything to worry about, the middle psychiatrist said in my mind, while the two psychiatrists beside him nodded their approval. Then the serene expressions on their faces got mixed up with Dr. McKinney’s broad smile. It’s hypochondria. It’s nothing to worry about. Some children just want a little attention.
Seventeen years without a single fainting episode—and now this!
I sat down on the edge of my king-size bed, stress pulling my muscles into stiff bundles. My legs bounced, my heels drummed against the floor, and my shoulders twitched and clenched. I couldn’t even remember that just moments before, those same muscles, warmed by sun and exercise, had been as soft as taffy and ready for a catnap.
Where were those glasses? Oh, poor Elena! If she had to live without her glasses now, in a new place, possibly for days . . . We both have very bad eyes, the kind of eyes that can’t see the giant E on the wall chart, so I knew exactly how demoralizing such an awful possibility would be.
Would I need to order new glasses for her? This was no easy process. Elena didn’t have a simple prescription. She had three different conditions that complicated her vision in unusual ways and kept her from being able to walk into the typical places in a mall or shopping center. Getting her fitted with new glasses was both time-consuming and expensive. Those glasses that had gotten lost had cost about eight hundred dollars, and her German optician had checked her vision three different times on two different days—altogether, several hours of testing—before he had felt that he had enough data to order them.
I felt these worries snatching at me now, pushing me toward panic. What should I do? What could I do?
Calm down. Logic and reason!
I made myself go out for another walk and find a fast-food restaurant, and I made myself sit down there and eat dinner. An hour passed before I got back to the hotel room. No blinking red light this time.
Hope and Other Luxuries: A Mother's Life With a Daughter's Anorexia Page 21