Brain on Fire (22 page)

With a fine #11 blade and a dissector, he cut several cubes of tissue, equaling about 1 cubic centimeter in volume, which included white matter (strands of nerve fibers) and gray matter (the cell bodies of neurons). He set aside specimens for future studies and an extra sample to be frozen in case other tests were needed. He swabbed the brain matter and stopped the blood flow using cottonoids, highly absorbent synthetic fibers.

He then very carefully stitched a dura graft onto the outer layer of the brain, suturing it together, and then reattached the bone plate. He pushed the plate to one side, butting it up against the existing bone so that it would fuse, and then secured the plate using screws and a small metal plate. He ended the procedure by returning the outer layer of skin to its original position, and closing the scalp with metal staples. The whole procedure took four hours.

“Count down from 100,” a disembodied voice says.

“100 . . . 99 . . . 98 . . .”

Darkness.

Blink. Blink. Blink. “I’m still awake.”

Darkness.

A crowded recovery room. I’m alone. There’s a family to the right of me, surrounding another patient. Where are my parents?

Then I see them. Mom and Dad. I can’t move.

Then Stephen and Allen. I try to raise my arm slightly to wave; it feels as heavy as a fifty-pound weight.

Darkness.

“Thirsty.” My voice is hoarse. “Thirsty.”

“Here,” a brusque nurse says, shoving a water-soaked sponge into my mouth. The texture is unpleasant but the water is a godsend. I suck and suck. “Thirsty.” She shoves another one in my mouth. I hear the parents beside me feeding their kid ice chips. I raise my arm. I want some. A male nurse approaches. “Ice.” He brings me a few ice chips and places them on my tongue. I can hear the female nurse telling him not to give me water. “She can’t have any water. Just ignore her.”

“Water, water,” I moan.

She approaches. “I’m sorry but you can’t have any more.”

“I’m going to tell everyone how you treated me. I’m going to tell everyone when I get out of here.”

“What did you say?” Her tone scares me.

“Nothing.”

Darkness.

I’m in a claustrophobic one-person room. I have to pee. I have to pee. I push. My catheter comes undone and the urine sprays all over the bed. I call out. A nurse comes in.

“I peed.”

Another nurse joins her. They turn me on my left side, remove the bedding, wash me with warm towels, and spritz me with something. Then they turn me over to the right side and repeat. It feels nice. But I can’t move. I push hard with my brain, trying to wiggle my toes. I push so hard that I get a headache. My toes don’t move.

“I can’t move my legs,” I call out.

Many hours after the surgery, around 11:00 p.m., a nurse informed my dad, who had chosen to wait for news while everyone else went home at the staff’s insistence, that I had been moved from the recovery room into the ICU. They didn’t invite him in to see me, but he wandered into the unit anyway, unaccompanied. The
floor consisted of a handful of bays, one patient in each. There were nurses everywhere, but no one even looked twice at him. He peeked into each bay until he spotted me.

There I was, semiconscious, propped up on pillows with my head wrapped in white gauze like some kind of sick Persian princess. I was attached to monitors and machines that beeped and groaned and had been wrapped up in nude compression stockings to keep my blood pressure normal. When he caught my eye, I instantly recognized him, which didn’t always happen. We hugged.

“The worst is behind you, Susannah.”

“Where’s Mom?” I asked.

“She will see you tomorrow,” he said. He could tell I was upset that my mother hadn’t come, even though it had been the right decision for her to go home that night. Then: “I can’t feel my legs, Dad.” I sounded convinced.

“Are you sure, Susannah?” my dad asked, turning white with fear. This had been the worry all along, that they would do permanent damage by messing with my brain.

“Yes. I can’t move them.”

My dad immediately called in a young resident, who came in and examined me, then rushed me out for an emergency MRI. My dad silently hurried beside the gurney, holding my hand until the MRI technician whisked me into the room, telling my dad to wait. In those thirty minutes, he would later sigh, he lost five years off his life. But the young resident eventually emerged to tell him that everything looked fine.

My dad stayed with me until I fell asleep. Then he went home and slid into bed, prayed, and fell into a restless slumber.

A
fter the surgery, I was reassigned to a shared room on the epilepsy unit. My roommate, a woman in her early thirties, suffered from seizures induced during alcohol consumption (though seizures occur commonly with alcohol withdrawal, sometimes drinking can induce seizures). She was constantly begging the staff to allow her to drink some wine so that they could record the seizure. They refused.

The results of the brain biopsy confirmed what the team had expected: my brain was inflamed. Dr. Najjar’s slides showed armies of angry inflammatory cells from my immune system attacking nerve cells in the brain, a signature of encephalitis.

There was a time, not so long ago, when neurologists believed that the brain was immunoprivileged, meaning it was completely separate from the immune system’s lymphocytes; now doctors use the careful phrasing “immuno-different.” The blood-brain barrier (BBB) is a dense patchwork quilt of vessels that serve as gates, regulating the passage of substances, like bacteria, chemicals, and drugs, from the blood to the brain.
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Researchers have discovered that the BBB does allow for certain B-cells and T-cells to squeeze through, in a process called diapedesis, to do regular “checkups.” But this was no routine checkup. The immune cells it had let through, which were supposed to protect the body, were in mid-blitz. This was the evidence Dr. Najjar had needed: I was in the grip of some kind of autoimmune disease.

Now that they had a hazy diagnosis, the doctors could move ahead with the first phase of treatment, intravenous steroids, a form of immunotherapy that suppresses inflammation created by
the body’s immune system. A clear plastic bag of Solu-Medrol, an IV steroid, hung beside my bed for three days of intensive therapy. It was administered every six hours on an IV pump. These steroids, called corticosteroids, subdue the inflammation and quiet the immune system, which in turn quells future inflammation.
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As the steroids seeped into my system, they switched off inflammatory chemicals called cytokines. Dr. Najjar approved the highest dosage possible for three days. Then he would convert me to 60 milligrams of the oral steroid prednisone, which would continue, more gently, to quell the inflammation over time.

Because corticosteroids interact with blood-sugar levels, among other things, I developed a temporary form of type II diabetes. Though the doctors changed my menu, providing only sugar-free Jell-O as a sweet snack, my parents remained oblivious to the dangers of my Easter jellybeans, as I continued to munch away. Since I was placed on bed rest following surgery, the nurses applied thigh-high compression boots, which blow up and deflate, pumping blood through my legs and mimicking the act of contracting and expanding during physical activity. But they made my legs itchy and sweaty, as I explained to anyone who would listen, and I kicked them off every night.

Despite the new intensive steroid treatment, my condition did not seem to improve right away. In fact, it worsened; the abnormal nightly movements and undefined panic attacks increased. My father wrote about my continued difficulties in the logbook that he and my mom shared: “She had a strange smirking expression on her face. She tensed up,” he wrote. “Arms stretched out straight, grimace, tenseness, shakes.”

But I could still pull myself together for visitors. Hannah arrived soon after the surgery and stifled a laugh when she saw my strange white turban of bandages.

I was a good sport about it. “I’m going to be bald!” I said, smiling, and popped an Easter jellybean into my mouth.

“What do you mean? Did they shave your scalp?”

“Bald!”

“Maybe you need Propecia.” We both cracked up.

EEG video, April 12, 8:12 a.m., 7 minutes

I’m wearing a white surgical cap, reclining with my legs folded over as if I’m sunbathing. My pink backpack containing the EEG box rests on my lower stomach. I get up and walk to the door. My movements are halting and painfully slow. My left arm is outstretched.

“Would that be the little green button?” my mother asks a nurse from off-camera, referring to the seizure/event button tied to the bedside rail. She enters the frame and sits by the window.

I get back into bed. My mother gets up and hovers over me and then pushes the nurse’s button. Nurse Edward arrives moments later and starts a neurological exam, miming the action he wants me to follow, extending his arms out. Gradually I follow his lead. He taps on my left index finger and tells me to close my eyes and touch it to my face. After a moment, I do. He repeats it on the other side.

When Edward leaves, I reach for the sheets. It takes a full ten seconds for me to lie down. Meanwhile, my mother looks nervous. She checks her purse, crosses and uncrosses her legs, all the while keeping an eye on me.

End of video.

By our third night in the shared room, the woman next to me had a seizure. Somehow she had convinced the medical staff to allow her to drink wine. Since they had what they needed, a physical recording of a seizure, she was released shortly thereafter.

D
r. Russo arrived later that day to explain which diseases they could now tick off the list of possibilities, including hyperthyroidism, lymphoma, and Devic’s disease, a rare disease similar symptomatically to multiple sclerosis. They still suspected that I had been exposed to hepatitis, which can cause encephalitis, but they didn’t have proof.

After the conversation, my mother followed Dr. Russo into the hallway. “So what do
you
think it is?” my mom prodded.

“Actually, Dr. Najjar and I have a bet going.”

“What kind of a bet?”

“Well, Dr. Najjar thinks the inflammation is caused by autoimmune encephalitis; I think it’s paraneoplastic syndrome.”
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When my mother pressed for more details, Dr. Russo explained that paraneoplastic syndrome is a consequence of an underlying cancer, most often associated with lung, breast, or ovarian cancer. The symptoms—psychosis, catatonia, and so forth—are not associated with the cancer but with the immune system’s response to it. As the body gears up to attack the tumor, it sometimes begins to target healthy parts of the body, such as the spine or the brain. “I think because of her history of melanoma, it makes sense,” Dr. Russo concluded.