With his words, Dr. Sullivan had practically said I didn’t have epilepsy. Not because he believed that, but because I did. I pictured the lakefront the previous spring. The reeling, the gravity, the sweat. Nothing had ever felt so final. That’s what made me think it was leading somewhere. 

It was unfair of me to keep it from him. I had to, of course. With his power of persuasion, Dr. Sullivan could talk me out of anything. Besides, he would have required an EEG.

EEG is short for electroencephalogram. The diagnostic test can detect seizure activity in the brain.  It would have been so simple, right? Get an EEG and learn if I still had epilepsy? Not quite. While I had health insurance, it wasn’t actually good for anything. Epilepsy is a pre-existing condition. Back then, in 2004, insurance companies weren’t required to cover pre-existing conditions. And they didn’t. 

Not having epilepsy coverage made for a unique type of oppression. At a time when I was flailing in so many ways, the “pre-existing” label kept me down. In taking away insurance coverage, patients lose the power to protect themselves. You know what that means? They have to improvise.

Some are motivated by money, others by the lack of it. Why spend on an EEG when I could taper off for free? That was my philosophy. Can you put a price on having your hopes dashed? ‘Cause that’s what I was doing. How can that be quantified? I might have invested $200 to have my hopes dashed. More than that, really? Who’s paying for it?

The stipend I made as a freelancer — and “stipend” is the right word — covered rent, utilities, any food item in the grocery aisle at Walgreens, and little else. Which means I had to find a way to pay for Everything Else. “Everything Else” is a mighty big bucket. What gets lumped in there depends on the day, ’cause you never know what the world’s gonna bring. The list of options includes, but is not limited to: prescription pills, medical insurance premiums, doctor’s appointments, hair cuts, plane fare home for the holidays, and that’s just the stuff I can remember.

In my life, “Everything Else” was paid for by Mom and Dad. All of it. So before you go asking “Why didn’t she ask her parents to pay for an EEG?” honey, they were paying for my whole life already.

With insurance, getting an EEG was a no-brainer. Without it, the cost made for a convenient excuse. Truth was, I didn’t believe in EEGs. Since age 3, the exams had been an investment of the most brutal kind. Lying on the table, hyperventilating on command, they were an investment of hope. Hope for what might be found at the end of the rainbow. Twice I’d trekked through golden pastures only to find nothing there. It was supposed to be a glorious new beginning, full of hyacinths and butterflies and who the heck knows?  But when I got there, down to zero, all I discovered was another seizure. 

Just as EEGs were an investment of hope, they were an exercise in fear. Fear that had accumulated over years of annual testing. There’s the glue, ice cold against the scalp. The slight tug upon the hair as the glue takes hold. There’s the harsh scent of rubbing alcohol. Its purpose is to remove the glue when the EEG is over, yet somehow the scent pervades the exam from start to finish. You never forget that smell. An inexplicable chill hangs over the experience, making it all the more synthetic. All the while, they try to trigger a seizure. 

Young people have more armor for experiences like that. When they’re asked to be brave, they step up in big ways. For the chronically ill, resilience attaches to the soul. It goes with you everywhere, even when it’s not needed. At 33, I still had the armor of my youth, was just wearing it on my terms. It was a seismic shift, a subtle one, too. Change starts with a series of decisions, then one day you wake up different.

Guess I’d decided. I couldn’t afford an EEG financially. Couldn’t afford it emotionally either.

Dr. Sullivan was the kind of man who’d appreciate an aged Scotch. He had this wry sense of humor and old-school way of being, as if he might refer to women as “broads.” Handsome in an educated way, he carried himself with a refinement that spoke to East Coast credentials. When he laughed, it was in the moment, making it easy to believe he was behind you.

From the start, he was behind me. Among doctors, Dad was first, Dr. Sullivan a close second. Kind, soft-spoken, thorough, that was Dr. Sullivan. He had this great bedside manner that made him feel like family. To me, he was family. Our closeness was rooted in a respect for doctors on my end — and a respect for Dad on his.

Growing up a doctor’s daughter, you’re part of the club. And even more so when you’re chronically ill. Neurology appointments equated to a backstage pass without the star power. He’d been my neurologist since 18, had ushered me through the lowest lows. On the days I dug deep, he was there.

It was a sunny day, late spring 2005, when the phone rang. I saw the name on the caller ID and wasn’t the least bit surprised. I knew he’d be calling and why. Dad had told me. I answered the phone with a sheepish grin, almost a laugh. This’ll be good.


“Marybeth, Dr. Sullivan.”

He was the only person on the planet who called me Marybeth. I got a kick out of it.

“I understand you ran into my dad.”

“Yes, I did.”

“And he told you I tapered down.”

“I want you to know, what you did was reckless. It really was.”

“Responsibly reckless.”

I said it with a smile and hoped he’d hear it in my voice.

He must have, because he laughed.

“I would have told you at our next appointment.”

“Well, you proved your point, didn’t you? You’ve been at 200 milligrams for a while. I wouldn’t go back up now.”

The conversation was rooted in concern. If I had to pick a dynamic for our relationship, that would be it. I viewed him as an uncle, he treated me like a niece. It was as if he might say, “Now, Marybeth, before you do that…” Oh sure, he reined me in. Who wouldn’t? It was the sign of a good doc and a good man. His efforts came off as droll, not demeaning. He couched his statements in humor. Who doesn’t love a doc like that? I’m sure there were times he wanted to lecture me. He cracked a joke instead.

“Do me a favor and don’t drop down anymore, OK? Two hundred milligrams isn’t a therapeutic dose for you.”

“It’s not?”

“Not really. At that dose, you may as well not be on medicine at all. Don’t mess with it.”

I promised I wouldn’t, and we said goodbye. After hanging up, I sat on the floor, pondering his words. “You may as well not be on medicine at all.”

“Interesting,” I said.

But no one was around to hear it.

InDependence Memoir


You know why I stopped? I couldn’t make the jump from 200 milligrams to 175. 

That’s it. That’s the reason.

Tapering is a game of Russian roulette. Is the bullet in the chamber? Will you have a seizure? It’s anybody’s guess. Without a doctor telling me I didn’t have epilepsy, my chances of having a seizure looked promising.

So it’s a long jump from 200 to 175. I was as apt to make it as I was to leap from a building. To be clear, the plan was to taper off, not down. It’s just that at 200 milligrams, I realized my conviction was good up until a point. Which is to say, it was good up until 200 milligrams. Getting into the realm of the one hundreds offers no protection from seizures, does it? I mean, does it? I had no clue.

Dropping to 175 wasn’t going to happen. Not with the fear. People with epilepsy know the fear I’m talking about. It’s the paralyzing kind. Could have pushed it to the brink. Nothing was stopping me but myself. Isn’t that always the way? In my world it is. I simply couldn’t bring myself to leap off the edge. Did I have epilepsy? I was too afraid to find out. 

I realize that’s a luxury, but fear is as much a part of this journey as seizures themselves. Mine wasn’t a momentary phobia, like seeing the car coming up the street. This was a fright rooted in identity. Do you know how deep that runs?

In deciding to taper off, I failed to consider how it could even be possible in a world where I’d been medicated nearly every day of my life. Getting rid of Lamictal meant throwing away the lifeline. If there’s anything scarier, I can’t tell you what it is. We’re not talking vitamins here. We’re talking brain functioning. Coming off after 30 years requires the psychological strength of a ninja. 

I didn’t have it. 

You know what else I didn’t have? Proof. I had intuition, which was about as consoling as a game show parting gift. Up against three decades of conditioning, my strongest instincts didn’t stand a chance. When medicine is all you’ve known, it’s impossible to extricate from it without losing yourself. What will come next? No one can tell you.

It was just an experiment. It seemed more an imaginary test than anything I was doing in real life. But every two weeks, I’d drop another dose.

A gentle hush fell upon the apartment, one as quiet as the moment demanded. All I heard was the pounding of my heart telling me to do it.

Rounds with Dad always started with the car. Six years old, riding shotgun in the 280Z. Metallic blue with racing seats in shoe polish white. Through the shadows of the elms, sunlight falls like confetti. Take in a breath and the scent of lilacs falls too. There’s the jutting of a sprinkler, a lone billowy cloud, and that house where kids sell lemonade. We pass the church where Kate went to pre-K, and two blocks later, Mom’s all-girls high school. I crane my neck to glimpse the ducks on the pond. With none to see, I turn around. 

“Is it time?”

“Get ready,” Dad says.

Clutching my palm over his, I smile to know what’s coming. Radio’s off, window’s down, I can hear the whoosh of the breeze. 

 The engine revs. 

“Now,” Dad says, and we shift into third. 

There comes a thrust, a slight jerk forward, and the stick finds its gear. 

“That’s my favorite part,” I say. And Dad smiles.




In our family, Medicine took on a mythical persona. Like the morals of Aesop’s Fables, the myth lived and breathed in us. It sprang to life in the wide-open halls of St. Luke’s Hospital, where Dad saw patients. The building’s white pillars stood bold against the brick, and the old clock tower rivaled the beautiful ones of New England. With its Puritanical austerity, St. Luke’s could have fit in on a college campus. Bordering the inner-city, its majesty was out of place.

Rounds brought perspective to an idyllic life. I remember them in parts. The royal blue carpeting in the office. The dim glow of a lamp illuminating a room. The resounding stillness that hung over everything. Recall oxygen tubes up the nose, the drip of an I.V., the synthetic scent of 1970s cleanser.

For a shy girl, the fold of Dad’s lab coat made for the perfect cloak. Twirl your hair fast enough, you can spin yourself invisible. With a gentle nudge forward, he urged me to say hello. And St. Luke’s became a training ground for overcoming shyness. Extending their hands, the patients gave mine a slight squeeze. Many were elderly, and the softness of their skin still resonates. Looking into their eyes, I swam into a sea of acceptance. Sometimes I saw pain, other times a joy I was too young to understand. Patients always smiled to see a child come through. Must have looked like sunshine peeking through the clouds. 

To go on rounds with Dad was to discover the humanity in Medicine, and in him. Rounds showed me not what a doctor should be or could be, but what it was. To meet the patients was to view the profession through Dad’s eyes. Compassion, love, human touch. I grew up believing that this was Medicine. That this was a physician. Because in our family, it was. 

Dad moved from St. Luke’s to group practice on the East Side of Cleveland. In high school, I worked Saturdays, answering the phones from 8 to 12. When patients arrived for their appointments, Dad hugged them as if greeting an old friend. “How are you?” he’d ask.

He put the emphasis on “you,” drawing it out for people he had known for years. The most special among them were the Italians his dad had delivered. Or the ones who started as his dad’s patients and became his own. They were family.

Working at the office could feel like working at a bakery. People were always bringing sweets. Danishes, strudel, coffee cake. In summer it was bell peppers, cucumbers, tomatoes from the garden. Years later, I would learn it was payment from patients who couldn’t afford an appointment.

That’s humanity.

That’s Dad.

I think of all the times I paid out of pocket at Dr. Sullivan’s, the insurance refusing to cover epilepsy. It cost $200 to get in the door. Where’s the humanity in that? With Dad as the barometer, it’s easy to see why my expectations were skewed. I thought all doctors were like him. In truth, no one was. He was the son of my grandfather, and there was no one like him. 

Except his sons.

Right away I knew. Of course, you never really know, do you? Not with epilepsy. But I knew. For the first time in eight years, no aura.

Dennis came in on a revolving door. It ushered him in. More than a year later, it escorted him out. After New York, I never saw him again.

Gazing onto East Seventh Street four stories below, people looked like figurines. Some walked their dogs, others carried packages. One couple, holding hands, stopped to steal a kiss.

More than 20 minutes into it — with my nose fully fragrant and recess over — it hit me. I hadn’t gotten flashing lights in two months. The dizziness was my new aura.