by D. J. Palmer
That’s right, I thought. That’s when it happened. That lesson was the start of my slow decline. And then I thought: How does she know more about my sickness than I do? I hate to admit it, but it’s moments like these when I have doubts about what’s going on inside me. Am I sick, or do I just think I am?
Dad said, “She started to have joint pain soon after, not really severe or anything. More like a nagging, dull ache, wouldn’t you say?”
Yes, of course you’d diminish it, I thought, not looking him in the eyes. But then again, you diminish everything, don’t you. Even us.
“Yeah, that’s right,” I said while I turned to my mother, as if I couldn’t answer without her approval.
“And the joint pain, what was that like for you?”
There was a catch in the doctor’s throat, like he got choked up or something, and again I thought of his sadness. It radiated off him like body heat. I was in a typical exam room, not in his private office, so there were no personal effects I could study that might offer clues about his past. I wondered if his whole family was killed in a plane crash. That’s the first thought that came to me, and I briefly contemplated the possibility I might be psychic. Maybe he was the sole survivor of this terrible tragedy I’d invented, and I remind him of the daughter he lost. It helped me to imagine other people suffering more than I was. It put things into proper perspective. It reminded me that it could be worse. It could always be worse.
The doctor looked at me funny again, waiting for me to answer. It wasn’t creepy, the way he studied me. It wasn’t that kind of look. More like he was remembering something, and I’m a reminder of that something for him. I got the sense he wanted those reminders, too, but at the same time, he didn’t. It made me think of a boy from school who I had a crush on. Every now and again, I’d catch him staring at me, but he’d always turn away, as if it were okay to admire me from afar, but any real contact between us would overwhelm him. The doctor’s looks are sort of the same, but not in a boy-likes-girl kind of way. It’s more like I’m overwhelming for him, though for the life of me, I can’t imagine why. I settle on my plane-crash scenario and move on. Then I remembered the question about my joint pain, and I tried to think how best to answer.
“It felt like, um … like my joints were stiffening.”
Oh great, Meghan, I scolded myself. That’s soooooo helpful. That’s going to tell him soooooo much. Part of the problem was that I didn’t exactly know what to say anymore. Should I tell Dr. Fisher about how lethargic I’ve become? How I’ve lost interest in my friends? My life? I know I’m too young to be going through the motions, but I can’t seem to help myself. Nothing holds much interest or appeal for me these days.
I’ve stopped playing piano. Stopped soccer. I used to love school, never complained about homework, or reading, or even math, which was far from my best subject. I just did the work happily. I had my friends. We talked about boys and teachers, and gossiped the way most girls do. I went to parties and attended school and sporting events and whatnot. I watched whatever shows on Netflix everyone was watching. I posted pictures to Instagram that made me look cool, or pretty, or even better, both. All of that was gone now.
I couldn’t concentrate for shit. I didn’t care about school anymore, or my friends, or Instagram, for that matter. I wasn’t depressed, or sad, or melancholy. I didn’t feel like cutting my wrists or legs like some friends of mine did. I wasn’t suicidal either. I wanted to live, but I was shutting down. That’s the best way to describe how I felt. Meghan Off! It was like switches were flipping inside my body. Instead of running full speed, I was coming to a grinding halt. I didn’t want to overshare in front of my parents, so I told the doctor some of this, but not all of it, just enough to give him the impression that I felt utterly, strangely depleted.
“I might start homeschooling Meghan,” my mom announced, like that’s at all relevant.
I managed to keep myself from rolling my eyes. I don’t know if she’d already compiled a full dossier on his life, but I appreciated that my mom wasn’t touching this doctor’s arms, gazing into his eyes, priming the pump, so to speak, so she can milk him later. For that bit of restraint, I offered a bit of my own.
“She’s missed so much classroom time,” Mom continued. “I don’t think it’s going to work out this year.”
I saw Dr. Fisher glance at my mother, his eyes lingering maybe a beat too long. I didn’t fault him for it. I’d look, too. My mom is gorgeous. She’s one of the most beautiful people in the world. Strangers are always checking her out, and before I got sick, some would ask if we were sisters, which always made us both blush before we laughed.
My mom means the world to me, and I wouldn’t care if she were ugly as a troll. She’s my advocate, my rock, my best friend. I do what she says, and I trust her completely, certainly a lot more than I trust my dad. The fact that he’s the one who suggested we see this doctor is probably the reason I’m so guarded, but there’s another consideration as well—the tests. Because I don’t understand my new disease, I don’t know what procedures this doctor might want to perform.
I can’t say when it happened, but at some point over the last few years, I’ve developed an inexplicable, deep-seated fear of needles. You might think it’s about the sting; the prickling worry that crops up whenever I hear the fair warning, “You’re going to feel a little pinch.” Swab on a numbing agent, have me look away, and that should be the end of it. But, no, it’s not the end, not by a long shot. There are words for what I have—I know because I’ve looked them up online. Aichmophobia. Belonephobia. Enetophobia. They sound like rare jungle diseases to me—but, nope, they are morbid fears of sharp things like pencils, even a pointed finger. What happens when you put a needle near me? I feel like I can’t breathe. I start to shake like I’m possessed. I’m overcome with an inexplicable feeling of dread. I sweat. I feel like my throat is filling with sand. I can’t speak.
It wasn’t like this when I was a kid. Sure, I hated shots. I’d throw fits. Produce tears at the mere mention of them. But I didn’t feel like I was dying. Imagine someone holding up a sharp object to your eyeball, moving it closer and closer, forcing your eyelids open, making you watch it advance, while you buck and thrash against straps holding you down, and then you’d start to understand how needles make me feel.
We’ve tried hypnosis, medication, all sorts of tricks, but none of it has worked. Needles are my biggest nightmare, and if this doctor wants more than a vial of blood from me, he’s going to have to put me under to get it.
For the next half hour, we talked about my symptoms and all that good stuff. Dr. Fisher listened attentively. I liked him—a lot, actually. He seemed to care, and that made me feel strangely sad. I imagined what it would feel like if my dad looked at me the way Dr. Fisher did, with sympathy and deep concern instead of judgment. I should just say it, put it out in the open, tell everyone what’s really going on here. But I stopped myself. I always stop myself. There were enough problems as it was.
“I’m going to be honest,” Dr. Fisher said after we’d finished playing everyone’s favorite game: What’s the Matter with Meghan? There were no more symptoms to review, or issues to discuss, no more medical secrets to reveal. “I think you were right to bring Meghan to see me. From what you’ve described, I’m concerned that she does have mitochondrial disease.” My mom covered her mouth with her hands, but I still heard the gasp. “The challenge is going to be proving it.”
My dad leaned forward in his chair, eyes boring into Dr. Fisher’s. “Why? Can’t you just run a test?”
“With mitochondrial disease, testing can be tricky,” Dr. Fisher said. “We can do some blood work, but I’d recommend a muscle biopsy.”
“What’s that?” my mother asked while I was thinking the same.
“It’s a surgical procedure where we take a small piece of muscle, usually the size of the end of a little finger, from the upper thigh to test whether or not Meghan’s body is producing enough energy for normal
function. Recovery is quick, though Meghan will have a scar a few inches long. We’ll be able to give a local anesthetic, but for the procedure to work, she’d have to be awake.”
From a cabinet in his office, Dr. Fisher produced a needle unlike any I’d ever seen before. It was as long as my forearm, with two plastic loops at the handle where his fingers would go. To my eyes, the needle looked like a machete. Before Dr. Fisher could say anything more, before he could explain the procedure in more detail, or how he’d use that needle on me, I jumped off the table and raced out of the exam room as fast as my weakened legs could carry me.
CHAPTER 9
ZACH
Zach awoke at five o’clock that morning, his usual time, grateful not to have had the dream. Thin at forty-two, he proceeded through a series of body-weight exercises—push-ups, sit-ups, several types of planks, various stretches—working long enough and hard enough to get a good sweat going. He showered, shaved, and thought of Stacy. Images of her came to him often, but they always caught him by surprise. The most he had heard from his ex-wife in the past two years was when she would Like something he shared on Facebook, which he seldom did.
Zach found social media a necessary evil—a way to keep in touch with friends and family who would call more often if they did not get updates on his life in some other way. It was not like Zach was avoiding people, but everyone, every single person in his life, was a reminder of Will, and all of it hurt. Going to his parents’ retirement home in Florida was like visiting a shrine to their grandson. Framed photographs of Will were displayed proudly on walls and mantels throughout the beachfront condo.
There were two days each year that Zach dreaded more than any others: the day Will was born, and the day that he died. The rest of the time, Zach lived with a nagging ache. He lived like someone who had lost a limb but continued to feel a phantom sensation.
For any parent, the loss of a child was the loneliest, most desolate journey of their lives. Zach knew this all too well. He had been to grief counseling, group therapy, and even tried hypnosis to lessen his pain. He knew he should not run from the reminders of his son, but embrace them, speak his boy’s name proudly and often.
“Let his memory be a blessing,” a rabbi whose son Zach had treated for mumps told him once.
But Zach could not bring himself to be that person. He existed perpetually in a gray zone, where every day was a struggle for happiness, where guilt grew like bacteria in a petri dish. To make amends, Zach had dedicated himself to finding a cure for the disease that had claimed his son, while doing his best to ensure quality years for those living with the condition.
This was his hope for Meghan Gerard. He was anxious to get to the hospital because pathology should have the results from her blood work and genetic testing. He was confident those results would confirm his belief that she had mito. He wished he could have done an EMG on her, a measurement of electrical muscle response to nerve stimulation, or a muscle biopsy, but the girl’s needle phobia forced him to rely on less-invasive diagnostic tests.
He had brought up the idea of conscious sedation—a combination of medicines to help with relaxation and anxiety, but Meghan was not ready to go there yet.
“These medications will help you to relax,” Zach had said to a teary-eyed Meghan as they discussed the more invasive procedures in-depth. “We routinely sedate kids for large laceration repairs or putting back dislocated shoulders and the sedation works wonders on patients who are as anxious about their injuries as you are about needles.”
“But they’re not me,” Meghan answered defiantly. “And I don’t care if it works for them, it won’t work for me. So there’s no way I’m going to let you stick me with that damn sword. No. Way.”
Zach had sighed aloud, regretting having shown Meghan the Bergström needle, wishing the mother had warned him ahead of time about her daughter’s fear.
The nurse who took Meghan’s blood sample said she had one of the most intense needle phobias she’d ever seen, poor girl.
“Touch-and-go, hitting the vein,” the nurse had relayed to Zach. “If the mother hadn’t been with her, I couldn’t have drawn a smiley face on that arm, let alone gotten four vials of blood.”
Zach didn’t need another proof point to tell him getting a muscle biopsy done on Meghan Gerard (consciously sedated or not) was going to be a protracted battle. The mother seemed burdened with guilt, and even implied responsibility for the daughter’s needle phobia, and for this reason would not push Meghan to step beyond her comfort zone. Not yet anyway.
After arriving at the rear parking lot of White Memorial at a quarter to seven, early enough to secure a choice spot near the staff entrance of the main building, Zach took an elevator to the third floor. He said hello to several nurses and orderlies as he made his way to the conference room at the end of the hall. A group of young doctors was already gathered, seated around the table, sipping coffees and reviewing charts in preparation for the handoff from night shift to day shift.
This month, it was Zach’s turn to serve as attending pediatrician, which meant supervising a group of eight residents and interns. He enjoyed the responsibilities of teaching. It kept him sharp. Mostly, though, he relished the looks of delight and satisfaction he could produce on the faces of this coterie of fledgling doctors simply by imparting clinical insights he had acquired over the years.
Back in his day as an intern, Zach had learned to record all his patient encounters. By the time he had finished his residency four years later, he had amassed a catalog of well over a thousand, all neatly written on three-by-five index cards and classified in diagnostic groups to serve as future reference.
It took extra time, which was in short supply given his near-seventy-hour work schedule, but the discipline was well worth it. Zach had turned himself into something of an expert researcher, which came in handy these days as he devoted most of his spare time to deciphering the secret code of a silent killer.
This morning, like all other sessions of morning report, the group reviewed admissions from the previous night. Zach oversaw his audience of young doctors, a third of them unkempt and sleepy-eyed from their ministrations to patients who had been admitted in the late-night and way-too-early-morning hours.
They discussed patient status and reviewed vitals. Zach took in all the details with practiced efficiency. He was treading on familiar ground, and for a moment at least, Meghan Gerard and the potential for yet another case of mitochondrial disease slipped into the far recesses of his mind to make room for matters more closely at hand.
When it came time for Mary Sayre, a bright third-year intern, to give her debrief, Zach could tell by the tenseness in her face that she had something significant to report. “We got the results of the tests that you requested on the Sperling baby,” Dr. Sayre said.
Zach read the lab reports somberly before exhaling a weighty sigh. “I hate breaking hearts first thing in the morning, but let’s start our rounds with the Sperlings,” he said.
The team of doctors followed Zach down a brightly colored hallway adorned with fanciful murals, but the astringent odors, harsh lighting, and gleaming linoleum made it impossible to disguise that this was the place sick kids went to get well. At least that was the goal, each and every time. It did not always turn out that way, and Zach, and Dr. Sayre, and any resident or nurse working in pediatrics would attest to how personally they took each loss or difficult diagnosis, how deeply it hurt. On this floor, more than most, doctors and nurses openly shed their tears.
Baby Sperling’s hospital room was in the neonatal intensive care unit, accessible only through secure double doors at the far end of the pediatrics floor. There were two rows of incubators occupying the wide-open space, about half of which had babies on ventilators, Baby Sperling among them. Zach checked in on the infant with the NICU nurse before making his way to a small room with a twin bed and an armchair that could recline almost flat. A pile of blankets heaped in a corner of the room indicated that the mom and dad
had once again spent the night. Both parents had the beleaguered look of soldiers returning from combat.
Baby Roger Sperling had appeared healthy at birth, and his two very proud first-time parents couldn’t wait to take him home. But an attentive neonatal nurse had noted that the baby was having some trouble breathing, with periods of blotching and cyanosis, a bluish tinge to the skin that signaled inadequate oxygenation of the blood. At other times, he seemed robust and healthy. When these episodes continued, it seemed prudent to intubate the infant and transfer him to the neonatal ICU.
Zach had deferred the case to an expert team of intensivists, but all were stymied. An ENT got a good examination of the infant’s throat but could find no anatomical obstruction of the airway, such as laryngomalacia, in which the airway fails to develop normally. X-rays ruled out pneumonia, and fluoroscopy showed that the diaphragm appeared to work normally, helping to expand the lungs. Blood cultures were negative for infection. Extensive testing for some sort of rare metabolic disturbance turned up nothing. Baby Sperling had two CAT scans of the brain, looking for neonatal hemorrhage, stroke, or some peculiar congenital malformation.
A neurologist performed a nerve conduction test and a needle examination of the baby’s muscles to see if that could explain the breathing trouble, but all was normal. A cardiologist found nothing wrong on an echocardiogram but suggested a cardiac catheterization might be necessary at some point.
Roger Sperling was, by all accounts, a very healthy-looking infant. A few weeks ago, Dr. Sayre, who was doing her rotation in the NICU, had casually probed Zach for his thoughts. Why couldn’t they wean him off artificial ventilation?
The only thing Zach had noted on his examination was that the baby’s pupils were unequal and not very reactive to a flashlight stimulus. Certainly nothing dramatic. But Zach knew that much of diagnosis was in the history, and he was able to get all the information he needed by asking the ICU nurse a simple question: When exactly did Baby Sperling have trouble breathing?