Read Hope and Other Luxuries Online
Authors: Clare B. Dunkle
“But . . . ,” I said.
“I don't know why you write to her!” Elena continued furiously. “I don't want you to tell her another word about me! She's the reason I'm stuck here. I'm
sick
because of her!”
After all the time and all the hard words that had already gone by, I ought to be prepared for this sort of thing. But to run into such violent hostility between two of the people I loved best in the world . . .
Without a word, I went back to my questions and answers. But the color had drained out of my day.
“How old are Paul and Maddie in the book?” wrote another reader.
Who cares?
I thought.
Paul and Maddie aren't real. They aren't real, and they don't exist
.
Hopelessness welled up inside me.
My family is broken
, I thought.
My family is irretrievably broken. I'm the mother, and I've let my children become damaged and ill. Two children in the hospitalânot one, but two! Hatred and bitternessâhow did it happen? What kind of mother would let that happen?
“Hey, come watch this,” Elena said.
“No, thanks.”
There was a pause.
“Don't blame me,” Elena said, “for what my shit sister did.”
“No, I know,” I answered quickly. “I'm not blaming you. I'm not blaming anybody.”
Not quite true.
Sadness welled up around me like an invisible flood. It closed over my head without a ripple.
What kind of mother has a child who cuts and burns herself? What kind of mother watches her child disconnect from reality and jerk around on her back in a fit?
“You know, there's a social worker on this floor,” Elena said. “She came by to see me yesterday. I think you ought to go talk to her, Mom. I think it would be good for you.”
That's just like Elena
, I thought.
She's the one lying in the hospital bed, but she's worried about me
. And that brought a little flicker of cheer into my heart, even at the bottom of that pool of sadness.
Elena had so little control over her life now. She wasn't even allowed out of bed. At least I could let her be a good influence on me. She could have a little control that way.
Besides, talking to a social worker would be a pleasant diversion. Wasn't a therapist like having a clever friend you paid to have coffee with? None of this
So, how's
your
day going?
stuffâyou could monopolize the entire conversation.
“Sure, why not?” I said. “You're probably right.”
So I set up an appointment, and I went.
The social worker was an ordinary-looking woman about my age who inhabited a tiny office absolutely crammed to bursting with paper. If it hadn't been for the large sections of glass in the walls, opening onto views of the hallway, I don't think I could have stood the place.
She waved me to a chair. “So, tell me what's wrong.”
Over the next hour, it all came pouring out. Valerie's scars. Elena's heart. My fears about what my daughters' illnesses meant for our family and what our family might mean for them. Before, I had always seen
our family as a circle of love and safety in a possibly dangerous, possibly unfriendly world. Now I had become very much afraid that it wasn't the world that was dangerous and unfriendly.
“I feel so old these days,” I said. “Old and dried up. Ancient. It's as if all the pain and stress have attacked me physically. Some daysâthe bad daysâI can almost feel the cells shriveling and dying off.”
“Have you cried about this?” she asked. “About your daughter in the hospital, about her blackouts and her heart? About your other daughter? Have you given yourself permission to cry?”
I felt taken aback. I tried to be reasonable and evaluate the questions fairly, but then againâthey just didn't make sense.
“You mean, since we got here, to the States? Wellâno.”
Obviously not
, I thought to myself.
“And why is that?” she asked.
Why was that? Ask the small child sitting quietly in a corner of the room, working on her dot-to-dot puzzles. Ask Heathcliff. Ask Sara Crewe. Ask Florence Nightingale.
Laughter is always appropriate. A wry comment and a quiet chuckle are welcome even beside the grave. But crying is a special dispensation extended to widows and babies. Me, I needed to be doing and planningânot crying.
“Elena doesn't need that,” I said finally. “She's going through enough. And besidesâwell, we're in
public
here!” And I tried to imagine myself breaking down in a busy waiting room. Nope. My imagination could picture monsters, but it couldn't see this.
“It happens here all the time,” the social worker said calmly. “No one would judge you or bother you.”
I didn't answer. Inwardly, I thought,
Why would that matter? This is my code of conduct, not someone else's
.
“Why are you doing this to yourself?” she persisted. “Why haven't you let yourself cry?”
“Because . . .”
But how could I explain it? Why did I even need to explain it?
Why couldn't this woman just leave it alone?
“Because it's too much,” I said at last. “I can't even let myself touch it. All I can do is kind of stand back and look at it for a while. Think about it: think about seeing your daughter, out of her mind. Think of your baby, whose little body you cradled and protected from birth, and now you're seeing dozens of burns . . .”
I had to pause for a minute. But I found my stiff upper lip.
“So, you see,” I continued, perfectly calmly and reasonably, “there aren't enough tears for that. If I start crying, you might as well lock me up in a padded room because I'm never going to stop.”
The social worker frowned. “You need to be able to cry,” she said.
What happened to not judging me or bothering me?
“I need to be able to cope,” I countered. “I could scream for the rest of my life, but how is that going to get the bills paid and the insurance arrangements taken care of? I was on the phone just this morning with our insurance companyâagain. I had to sort out charges from the military hospital for them. Who's going to do that if I'm bawling in a rubber room?”
And the thought of the insurance company acted on my torn and injured feelings like a cool menthol lozenge on a sore throat. It helped me breathe. It laid soothing coats of logic and procedure over the burning pain inside me.
The social worker seemed to sense my change in mood. At my growing calm, she grew sterner than ever.
“So you turn to your writing,” she said. “To your books.”
“Well, yes,” I admitted, and the thought of my characters completed the job of helping me re-center.
It's not fair to Paul and Maddie to say that they're not real
, I thought.
They're as real as anything else about me. Their love is certainly just as real, that true adolescent first love that makes the whole humdrum world we grew up in somehow look different overnight
. And at the thought of those two shy, serious lovers, a little glow of happiness warmed me.
“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 familyâcloser than
family
!âstepped away and closed off? Just stopped caring?
That
was dissociation: it was pulling away from risk to safetyâjust 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 wereâjust a spa where I hid to escape my obligations? Is
that
what she actually thought fiction wasânothing 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 reasonâI 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 doâpretty 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 nowâthree 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.
T
wo 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.