The Day My Brain Exploded Page 14
Time to find another doctor.
One of Mom’s acquaintances, whose cousin had epilepsy, informed us about Dr. Jorgen. She said he was well-respected, although he wasn’t mentioned in any of my growing collection of epilepsy books. Still, we gave him a shot.
A short, pale-skinned, and slender white man, he was in his fifties, with a stony face and a grim silver goatee. The first time we met him, I told Dr. Jorgen of Dr. Clark’s lobectomy plans and he laughed. That was reassuring. He said it was a monstrous idea that would only cause more brain damage. He said he would offer effective treatment without cutting into my brain again. The first step, he said, was some in-hospital testing. He promised that all we would need was a high amount of a drug named Trileptal.
Dr. Jorgen’s hospital was a shoddy space in New Jersey. The electrodes to my head were tied incorrectly and my tube connecting me to the monitoring device was too short; I couldn’t even make it to the bathroom without nurse assistance.
The goal of the stay was to give me a seizure, so they could monitor it. They did everything they could to provoke it: make me hyperventilate, lose sleep, look at swirling lights. It wasn’t happening.
On the fourth day, the nurses announced that I was to be discharged. They unplugged all eleven electrodes from my head. (Hurt like a mutha.) Then they had to strip the glue from my hair. I was unhooked from the monitoring tubes and brought to the shower, where I washed all the crap from my arms. Just as I was finishing, one of the nurses came in, panicked. It wasn’t time for me to go, someone had made a mistake. I was rushed out of the shower and got plugged in and glued up all over again.
Ultimately, I never had a seizure in the hospital. They had nothing to observe.
Upon release, I was given Trileptal to take.
Dr. Jorgen had said this was the wonder drug, so I had bright hopes. Two days after being discharged, I had a complex partial seizure, in which I lost consciousness for a brief moment. It was not on the scale of a grand mal, but intrusive anyway. I still had to smell the fucking aura.
I called Dr. Jorgen right away and spoke with his second-in-charge, a woman named Lily, who was nowhere as dainty as her name might indicate. Despite my insistence that the Trileptal was horrible, making me sluggish, nauseous, and drowsy, Dr. Jorgen—through Lily—insisted I keep taking it.
Then came another seizure. I was in the car with Dad at the time. This seizure was a small one in which my head slumped back and drool seeped out of my mouth. Dad, unversed in caring for epileptics, shoved a water bottle in my mouth, a potentially fatal move.
After that I started doing more research on Dr. Jorgen, but could find no information on him anywhere, from medical journals to the Internet. However, my exhaustive research helped me come to better understand the nature of epilepsy. Doctors weren’t the problem, it was the drugs, which were totally trial-and-error. If no seizure occurs, the drug dosage works. If one does, the drug dosage—or most likely, the drug itself—needs to be changed.
As a result, I didn’t hate the doctors; I hated the way I was treated.
Then I suffered the very worst epileptic seizure of my life. It started June 25, 2003, at 5 p.m. I was supposed to see a movie with a friend, but I felt sick and stayed in my apartment.
The nightmare started. I smelled the aura; death was on me again. But this time it felt stronger than before. It seeped into every corner of my body. I started flailing and began chewing on my tongue until it bled. The aura had become the sphere in which I lived.
The electricity was so ferocious that my body started bouncing from one room to the other, bruising my arms, legs, and shoulders. I danced like an electrocuted marionette for ten minutes. And suddenly, it was over. I fell hard on the rug in my living room, lifted myself up to all fours and crawled to the bedroom.
Many minutes passed. I was first aware of a severe stench which nipped at hairs inside my nostrils. I turned my head on the pillow, but couldn’t escape it. Then I started to choke and suddenly opened my eyes.
Shit was everywhere, as if I had finger-painted with it on the walls and floors. So was blood. During my hellish seizure, I had excreted and bled throughout the apartment. My body was bruised and bloody all over, from my legs to arms, from shoulders to back.
Luckily, my head was unscathed. I knew that God was watching over me. While my body had been flung around, my head could have easily hit the exposed brick wall and I would have been dead.
As I surveyed the destruction, I sobbed. Multiple thoughts—terrified and horrified—were running through my mind.
Look at the shit.
Blood everywhere.
The beige carpet has brown and red pools all over.
It’s ruined.
I’m ruined.
I called Mom and Dad. They drove all the way from New Jersey, sped through the Holland Tunnel, and picked me up at the apartment. They brought me back to New Jersey. The next day I called Dr. Jorgen and left a message on his voice mail. I called again. No response—not even from Lily.
A week later Dr. Jorgen finally called, and invited us to his office. As I described the entire shitty, bloody, nightmarish incident, he listened quietly. Then he spoke.
“Let me ask you something, Mr. and Mrs. Rajamani. Don’t you strictly watch over his pill intake?”
“Of course we do,” Mom said, puzzled.
“Yet it’s obvious he didn’t take his medicine for this massive seizure to happen.”
“I took the medicine,” I said, as calmly as I could.
He just glared at me.
“I took the medicine,” I repeated.
“Then there can be only one reason,” he said. “Ashok, did you drink anything that day?”
“I might have had two or three glasses of water.”
“There’s your problem.”
My parents and I looked at him blankly.
“You drank too much water,” he said smugly. “You should never drink that much water when you have epilepsy.”
All three of us dove in, yelling at Dr. Jorgen, accusing him of negligence and questioning his credentials. His face remained impassive as we hammered away. When we had exhausted ourselves, he stated authoritatively that he was a doctor and we weren’t.
We had had enough of Dr. Jorgen. We walked out.
So Trileptal might not have been the ideal drug for me. But Dr. Jorgen should have at least recognized that. Or even better, he should have prescribed a different drug so that I would never again be forced to give my apartment a complete makeover.
As soon as I recovered from the seizure setback, I made an appointment with a new epileptologist. Dr. Feinberg kept hours at a prestigious hospital in Manhattan. He had a kind, reassuring smile and short, floppy blond-brown hair that fell down over his eyebrows. On my first visit, July 7, 2003, I told him my entire wretched epilepsy history. He listened carefully and prescribed a drug named Lamictal. I was struck by his laid-back style. Perhaps he meant to soothe his patients. Worked for me.
After our first meeting, however, I had a seizure that both shocked and scared me.
That morning I woke up around 11 a.m., later than usual. When I went to the bathroom to brush my teeth, my mouth felt strange. I opened it before the mirror and saw that most of the surface of my tongue had been chewed off, blackened.
I had experienced a massive grand mal seizure in my sleep.
Feinberg was characteristically comforting. He clearly came from the glass-half-full school of epilepsy. His assessment? A seizure like that was good, he said, since I didn’t even have to be awake for it.
That’s my Feiny, I thought, smiling inwardly. Leave it to him to make a near-deadly incident—many folks with epilepsy actually die by seizing during their sleep—into a cutesy line about the virtue of unconscious epilepsy.
He increased my Lamictal dosage.
Blacked Out
On August 24, 2003, an electrical blackout spread from the Great Lakes region across the upper Northeast.
At the time,
Mom and I were in the waiting room of my primary doctor’s Manhattan office. She had driven in earlier that morning from New Jersey to join me for this routine checkup. The air conditioner quit, and it immediately grew sweltering where we were. We grumbled, assuming there had been an electrical outage, but having no idea how far the situation had spread.
I started to sweat and then worry. I was beginning to smell an aura. I told Mom I had to leave. She told me to stay put; since it was a doctor’s office, it would be safer. However, I had a serious issue: each time I felt an aura, I felt the need to run—to run home, to run upstairs, to run any place. Perhaps I thought that if I moved fast enough, I could run away from the seizure that was about to strike. And today I wanted to run home from the doctor’s office, since my apartment building was only five blocks away.
We told the receptionist we were leaving and hurried out. We still hadn’t realized that there was a total blackout in the city. People were emerging from every side street, most of them frantic and confused.
I told Mom I was getting sicker and that the aura was growing bigger.
Then it happened.
On the corner of Twenty-second Street and Eighth Avenue, I started convulsing violently, and headed into the street. Mom called for help from two burly men walking by, and they helped her pin me to the sidewalk.
Mom’s car was in a parking garage on Eighteenth Street. Once the seizure had passed, we decided to flee Manhattan and head to Jersey. But the lot attendant refused to let us in, explaining that trying to navigate the place without electricity was dangerous. But when Mom and I both begged, explaining that I was very ill and had to leave as soon as possible, the man relented.
In the darkness, we climbed to the second-story level, found the car, and drove it out. We didn’t get far. Before us, the streets had become one big parking lot. It was a sight worthy of the apocalypse: thousands of little cars and Range Rovers trying to flee the city.
Too late. Too late to turn back and wait until hell has cooled a little bit.
And so we moved along in bumper-to-bumper traffic, one inch at a time.
Twelve hours later, we arrived in New Jersey.
Days after the blackout, I returned to Dr. Laid-Back Feinberg. He upped the Lamictal yet again. The seizures were finally controlled after that.
Seizures are often dubbed “mini deaths,” since they present complete malfunctions of the body’s brainwaves and, consequently, all organs. And to think, I was under the impression that my brain bleed would be the last death I would ever face until my body had actually expired, once and for all. That AVM sure left a bunch of unexpected, nasty surprises in its wake.
There’s a theory that St. Paul’s vision at Damascus was, in fact, just a seizure. Paul, you go, boy.
Through the Looking Glass: 2003–Present
The Eyes Have It
“I can’t see my nose!”
(what?)
“My teeth are covering my face!”
(what?)
“My body is smaller than my thumb!”
(what?)
I couldn’t believe what was happening. Everything around me was distorted, especially my own body. I looked into the mirror and screamed. I had become a monster.
All this started one day when I was in New Jersey, and Mom was driving me to Target to find a cheap rug for my Manhattan apartment. It was September 27, 2003.
During the early evening drive, the burgundy autumn sky was easing into a dark black haze, and as I rode along, I became repulsively immature, believing I was not getting enough regard now that my epilepsy finally had been controlled.
Everyone’s ignoring you, you need to get a reaction. You need to scare Mom, right now, I thought.
Right off Exit 11 on the highway, I spoke.
“Mom!” I yelled. “Everything looks so tall and skinny! That building over there looks thin as a stick, and taller than the sky!”
“Stop trying to scare me,” she said. “You’re just trying to get attention. It’s not working.”
“I’m serious! That movie theater looks like the Empire State Building! So high up and so much like a stick.” I chuckled to myself.
“Your joke is failing,” she said dismissively.
Then something strange happened. Everything ceased to be a joke. What I had pretended was suddenly happening. Within a second, the joke did not fail. It had become real.
“Oh my God!” I yelled. I was terrified.
“What now?” my mother asked, yawning.
“Everything really IS tall and skinny! Oh Lord! I can’t see right!”
When we reached the store, I ran up and down the aisles, hoping I could see normally again. The shelves and TVs and computers and CDs all looked tall and skinny, so I ran to the men’s restroom, wanting to see my reflection.
My body in the glass was as distorted as the store’s merchandise. No, that’s not right. It was even worse.
Arms were reaching my knees.
Legs were near my neck.
My nose was invisible.
Eyes stretched over forehead.
I looked around the stalls and urinals. Everything appeared distorted. My world had become a series of carnival freak-house mirrors. I ran out of the bathroom, more frightened than before.
Mom scolded me. “Calm yourself! We’re going back home, and everything will be okay.”
As we reached the driveway, I remained scared. The house looked small.
I screamed upon entering my old bedroom.
My childhood stuffed animals were now taller than me.
The television was the size of a knitting needle.
But even more terrifying were the distortions around me. Mom looked like a ghoul, all big eyes, no nose, with legs reaching her chest, while I saw Dad’s head become the size of a chick pea.
But nothing was as bad as what I saw in the mirror; it reflected the same monster from the store restroom.
Dad, hearing my shrieks of terror, called the hospital emergency room.
“Help, my son is seeing a distorted world,” he told a doctor on call.
“Don’t worry sir, it might be just the onset of a migraine. It happens. I suggest that tomorrow morning you take him for a CT scan just to be on the safe side.”
Relieved, he hung up and told me not to worry.
“Everything will be fine, in the morning you will see fine.”
I fell asleep, exhausted after my intense spell of screaming and crying. Sleep was turbulent, though, as I was too worried about my sight to relax, though still hoping that everything would be okay. As day broke, I opened my eyes, scared of what I would see. The world was different from the tall-skinny visions of the night before, because now everything looked fat, squat, and short. It felt like I was in a coffin, as the ceiling appeared to be just inches from my head.
I ran to the mirror. A brown guy the width of a truck and the height of a gnome stared back at me.
Breathing in, my body became tall. Breathing out, my body became short.
The distortions changed with exhaling and inhaling; everything was shifting with the rhythm of my breathing. I was going insane.
“Mom! Mom! I still can’t see right!” I cried out.
My mother tried to console me: “We’re going to the doctor and get the CT scan. It’s probably nothing.” I wasn’t convinced.
We went to the hospital ER where they took a quick CT scan. The doctor came back with a placid grin.
“His brain is perfectly fine,” he reported.
Mom smiled.
“But I do recommend you see your eye doctor, anyway.”
As we turned to leave the hospital, the doctor added, “I don’t think you should see any average eye doctor. You need to see a neuro-ophthalmologist.”
Days later Mom and Dad took me to Dr. Damore.
“Ashok says he can’t see right, that everything is tall and thin, or short and fat,” Mom explained.
He gave me a complete eye checkup, testing everything.
“That’s great to hear, doctor. So do you have any idea what the problem is, then?” Dad said.
“I think you should see your epileptologist; I feel it has something to do with epilepsy.”
Mom and Dad looked down at the floor, silent.
“His name is Feinberg, isn’t it?” he asked.
So we went to Feiny, who gave us a diagnosis when we met him. Frightening, maybe, but a diagnosis nonetheless. Dr. Damore was right.
“It might be seizures,” Dr. Feinberg said. “Although seizures typically only last for less than two minutes, this could be the intense type that lasts longer.”
I was led to another room. A kind older lady wet my head, parted the hair in seven pieces, and glued ten thick, hard electrodes to my scalp, using special medical-industrial skull coagulant. After wrapping the bundle of electrodes in a long white head towel, she attached the lower portion of the cords, which hung from the pale cloth’s end, into an iPod-size instrument with a small screen.
Then she returned me to Dr. Feinberg.
“With this,” he said, “we can see his brain waves.”
He attached a long black joystick to the computer with a long white cord.
He gave me this contraption, saying, “We can test for seizures during a twenty-four-hour span.”
Looking directly at me, he continued: “I want you to press this button every time you have a distortion. With each click, a red dot will show on the gray screen.”
Nodding, I stared at the unit. I took it home, my electrodes and head-wrap firmly in place.
But the distortions never stopped. In the mirror I saw limbs the size of redwood trees. When I looked at my bedroom door, I would wonder how to get through a hole the size of a needle.
Upon returning to the doctor, after my headgear was removed, we looked at the gray computer screen. It was hardly visible under all of the red dots.
The joystick had been pressed sixty-eight times within one day.
“I have good news,” Feiny said with a smile. “These aren’t seizures, since his brain waves didn’t change at all during the times he pressed the button.”