Blog #150: DINGS Chapter 25

 

 

Epilepsy! All my denial—my protective armor—shattered. But of course…something had been undercutting this realization for months. Why had he been wetting his pants at his age? And, the times when I thought he was not paying attention and maybe he seemed confused. Dr. O’Rourke’s interview…Conner’s secrets…all his hidden spells…these dings…over a year. Oh, God. Oh, my God. I leaned forward.

“Epilepsy? So, that’s it. This is epilepsy. Oh, God!” I leaned back and stared up at the ceiling.

Conner had been watching me. He grabbed my hand and gritted his teeth, his eyes wide with alarm. I put my other hand over Conner’s and patted it several times. Sam wrapped one arm around Conner and blinked hard. He reached across our boy’s body to cover Conner’s and my hand with his.

The doctor furrowed his brow as he ran his tongue over his upper lip. “Mr. and Mrs. Golden, we say a person has epilepsy when he has had more than one seizure. Conner’s dings are all seizures. It seems like he’s had many of them, a great many of them.” He looked at Conner.

Conner stared back.

My mouth was so dry. I squinted and gazed above the doctor’s head. My preliminary presumptions surrounding Conner’s convulsion dissolved in tangled confusion. My temples throbbed. I looked at Conner and lowered my head. Conner has to be protected now. I stifled a sob.

I lifted my head and looked into the neurologist’s eyes. My husband gazed straight ahead. I took a deep breath. “I didn’t want it to register, Doctor. I’m sorry. Yes, you and Conner were talking about his dings—or whatever he calls them—those little seizures; apparently there have been lots of them.”

Dr. O’Rourke swiveled his leather chair to the side and crossed his legs. He kept his gaze on me as he tapped his pencil softly on his desk.

Conner watched me, too. He opened his mouth, but kept silent as I turned away.

I looked at the floor and then I closed my eyes and said, “He’s been having these things for over a year? Right in front of me? How could I have missed them? How could I not have seen them?”

I had known that Conner’s convulsion weeks ago could completely change our lives. I just didn’t know how. I didn’t want to know. It was deep in that chamber where I kept secrets, repressed secrets. Conner looked at me again. “Mom! What?”

“Oh, honey.” I wrapped my arm around his thin shoulders. Sam clenched his fists in his lap.

The neurologist spoke in a slow, deliberate voice. “Your son’s seizures are different from the grand mal seizure, the convulsion that brought him to the hospital. Conner’s seizures are caused by abnormal electrical brain activity. They probably originate in just one part of his brain—that would be in his temporal lobe—less likely in his frontal lobe.” He paused for emphasis. “Convulsions affect the whole brain. Anybody witnessing a convulsion would recognize that type of seizure. However, Conner’s dings—as he refers to them—can be harder to recognize…they affect just one part of the brain. What’s so difficult for many people to accept is, as I just said, a cause for epilepsy is often never identified.”

“You mean that, don’t you? You don’t know why they’re happening?” The hostile tone in Sam’s voice surprised me.

“Look. My patients say, ‘Dr. O’Rourke, there are men walking on the moon. Don’t tell me in this day and age that you can’t say why the seizure happened. How can that be?’ Mr. Golden, there are just so many things that we do not understand, especially when it comes to the brain. Medical knowledge humbles us. The more our experience and research teaches us the more we appreciate how little we actually understand. We do not even know how we think or what thinking really is.

“The EEG should document where in the brain these seizures are originating,” he continued. “However, a normal EEG does not mean that there is no seizure disorder. ‘Seizure disorder’ is another term we use that means epilepsy. An EEG can still be normal if the epileptiform discharges do not happen while the test is being done. And that’s common.”

I lowered my eyes and dug my fingernails into the edge of my chair. “What about the Dilantin?” I leaned forward and looked up. “Does Conner still have to take it? I guess so, huh? But I was, uh, we were so hoping, praying, that he could stop taking it today…”

I saw Conner’s puzzled expression. Sam’s eyes locked onto Dr. O’Rourke, but the neurologist focused on Conner.

“Let’s discuss treatment options after I finish—” Dr. O’Rourke coughed into his fist and cleared his throat. “Excuse me. After I finish your son’s physical examination. I want to get a more complete picture of what’s going on before I make any decision about medications.”

He asked him a few more questions to affirm that his mental functions were intact. “Spectacular,” Dr. O’Rourke said with a broad grin. Conner knew the date, where he was right at that very moment and his home address. “Conner is very well-oriented to date and place. He even knows who the president is. Not everyone can tell me that—even adults, believe it or not.”

Our boy beamed.

The neurologist demonstrated that Conner could also add and subtract, count and spell simple words backward—all accomplished appropriately for a third-grader. His memory and his ability to draw, write and name objects the doctor held up were normal, too. “You’re very smart for an eight-year-old.”

“I’m eight and a half, Dr. O’Rourke.”

The neurologist scrunched his eyes shut, grimaced and slunk down in his chair. “That’s right. You already told me. Eight and a half. Sorry.” He straightened up and winked at us.

He asked me about Conner’s past illnesses, immunizations and symptoms in other parts of his body. He also wanted to know about my pregnancies. “Has he ever exhibited any unusual or disturbing behaviors?” His eyes darted between Sam and me.

“No. He’s always been a normal child.” I looked at Sam. He nodded several times.

Conner sniffled and looked up at me.

“Very good. Do any diseases run in the family?”

“No, Doctor,” Sam answered in a solemn voice. “None that we’re aware of, anyway.” We looked at each other. I raised my eyebrows and shook my head in agreement.

Dr. O’Rourke’s face became very serious as he asked, “Do you smoke, young man?”

Our son twisted in his chair and laughed. “No-oooo. The sy…the sychilist at school—the first icky one—she wanted to know if I was married. That was funny.”

“He’s referring to the school psychologist who first attempted to do testing on him in the school, Doctor. Apparently, she and Conner didn’t get along. That’s what both of them told me, anyway. That’s sort of how we got to Dr. Frank Thomas.” My grim expression softened into a smile.

“Oh.” He said to me and then turned back to Conner. “So you don’t smoke. That’s what I like to hear.” The doctor stood up. “Okay, family. Let’s go across the hall to the exam room so I can check Conner over.”

He walked around his desk and put his arm across our boy’s shoulders. “Don’t worry, Conner. I won’t be giving you any shots today. I’ll just be checking your eyes and things.”

We shifted in our chairs and began to rise. Conner said to Sam, “I have to go to the bathroom, Daddy.” His voice had become tremulous again.

“Can’t you wait until the doctor’s finished, Conner?” I asked with a sharp tone.

“No!” He practically shouted and cast a sidelong glare at me. He hitched up his pants and hopped a few times.

“Okay. Let’s go.” Sam took him by the hand.

I sat down again. “I had no idea that Conner’s been having these things, Dr. O’Rourke—and for so long?” I leaned forward. “I’ve gone to the Internet and just about every...but, I never suspected this.” I licked my lips and hesitantly asked in a softer voice, “You really think he has epilepsy, don’t you, Doctor?” My throat and chest were tight. Of course it’s epilepsy. He just rammed it down our throats. I was so blind.

Dr. O’Rourke went behind his desk. He stood there with a hand on the back of his leather chair, fixed his gaze on me for a moment, and then sat down. He rested his palms on the desk. An inch of light-blue shirtsleeves protruded from beneath the sleeves of his white coat. I noticed “HO” embroidered in dark-blue thread on the left cuff. I did not expect a physician to be so fashion-conscious as to have a monogram on his shirt. I don’t know why I was surprised; look at his bowties. I looked for cuff links, but saw none. The scene was so surreal that for a moment I wondered if I were living it or merely watching myself and the doctor in a silent movie.

“Look, Mrs. Golden, we’ve discovered a lot today. I am probably as surprised about this diagnosis as you are. I did not expect this history of covert, hidden seizures based on my review of the hospital records. I believe that Conner has a form of epilepsy called ‘complex partial epilepsy.’ Its newer term is ‘mesial temporal lobe epilepsy.’ Look at it this way: your son has been suffering; that is why you are here. That is the reality. Now that we have identified what is wrong we can do something about it. We can help him.”

Dr. Choy had said virtually the same thing to me at the hospital. Did they all read the same script?

The neurologist arched his eyebrows. “I expect that Conner will do fine, Mrs. Golden. I understand how upsetting this is for you right now, believe me. But, you’re all going to be fine.”

His words morphed into distant sounds. I forced a weak smile and stared at the framed documents on the wall. Then I asked again, “Are you sure? Are you absolutely sure that Conner has epilepsy? It couldn’t be something else?” I groped for an admission of doubt. “No, no. Of course...It’s just that—” I stared out the window.

“I’m sure, Mrs. Golden. His history is classic: the auras—which are the warnings of the seizures and the smells that he told us that he gets—his confusion, losing control of his bladder. All of those phenomena are textbook symptoms.”

Everything that this neurologist said would be a part of our lives—always, forever. So, this would be my lot in life. I remained motionless. I felt so hollow.

Dr. O’Rourke swiveled his chair around to face the computer on the desk extension. Thuk, thuk, thuk—the keys spoke as he typed. His eyes skimmed the screen, but occasionally I saw him glance at me as I juggled my pain and anguish.

When Conner and Sam returned to the office, Dr. O’Rourke ushered us across the corridor to his exam room. The fluorescent lights flickered on as soon as he opened the door. Conner turned his head from side to side before he entered the room with us.

I remembered that I had read how flickering lights could induce seizures in some epileptics. Was it better to say ‘people with epilepsy’? What should they be called? Was Conner an epileptic? Or was he a child with epilepsy? I squeezed my eyes tight and my body shuddered.

Closed vertical blinds blocked out most of the late-afternoon sunshine that tried to stream through a single window. A rack on the back of the door proffered a selection of brochures on different neurological diseases and various popular magazines and children’s periodicals. There were a few copies of National Geographic, too. A low shelf held several rubber dolls, a Barbie doll, a few toy soldiers and several small action figures similar to the snap-together ones Conner had at home. I wondered if the doctor put them together himself. He must have many children as patients; maybe one of them did it.

Conner was immediately drawn to a colorful diagram on the wall: a gray wrinkled-brain attached to the spinal cord with yellow nerves projecting to all parts of the body.

The neurologist tapped the boy’s shoulder. “Take everything off down to your underpants, Conner. Shoes and socks off, too.” Dr. O’Rourke looked at me as he said that and I nodded. “When you’ve undressed put on the folded gown that’s on the exam table. I’ll be right back.” He smiled and left the room. The door shut behind him with a loud click.

I sat on a green plastic chair and waited for Conner to undress. I recognized several framed photographs on the walls that I remembered having seen on the Internet. The first picture was of a very young Hal O’Rourke in Papua New Guinea. Another large frame had a newspaper article about his interest in Shakespeare and neurology.

Sam moved closer and inspected the pictures, too.

What was the doctor doing now? Where did he go? Paperwork? The bathroom? Dr. O’Rourke had discovered things that all the other doctors had missed. Why didn’t Dr. Choy or Dr. Jackson or even Dr. Thomas—even the school psychologists—why didn’t they figure out what was wrong? What about his teachers? Why did it take so long? And me—his mother! I was the worst of all. I closed my eyes and shook my head at my stupidity. Well, Dr. Choy did mention that it could be epilepsy, but I wouldn’t entertain that diagnosis then. That was preposterous.

 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in recent New York Times Book Reviews, the Los Angeles Times Calendar section and Publishers Weekly. DINGS teaches epilepsy and is now available in eBook, audiobook, soft and hard cover editions.