Always an earthquake before the tsunami, isn’t there? Looking back you think there musta been a sign, musta been a warning that change was coming. And maybe there was, too subtle to see. If I could go back in time and stay asleep that day, would things have been different? ‘Cause the moment I woke, the world became darker.

Nestled in the soft silence of morning, nothing felt right. Outside, the world sprang alive with daffodils, whispering oaks, birds lost in song. Inside, a long winter was blowing in.

The soft down of the comforter, a wicked tease beneath the chin. Almost fooled me into thinking this day was like all others. Dog barks in the distance, green buds on the trees. Awake now/emerging/from the last peaceful slumber/a girl knows. Shake off the sleep/dead weights on the eyes/confused as to why/they won’t open.

In the hall, Hans is leaving for work. There’s the key fidgeting in the lock, his footsteps upon the stairs. I can picture the khakis on his stocky legs. The paisley button-down too tight around his heaving chest, like the shirt will rip right open. Hans, makes a show of wearing a kilt every day then what does he do? Goes off to work in khakis. The cat’s there, mewing behind the door. There’s the smell of coffee, the whoosh of a car. It’s a normal day. For everyone else.

Lying in a state of calm confusion, feeling dead and excruciatingly alive. Stillness blasts through the bedroom, growing louder the longer I’m there. Much like the angst clamoring inside.

Eyelids, lips, limbs so slack, so heavy. There’s a leaden quality to them that makes it difficult to move. So I raise the eyelids with my fingertips and wonder why I have to. The room looks the same. I am not the same.

A simmering caldron engulfs the pores. Hot tingling blazing through the cheeks faster than I can throw off the covers.

A dragon breathing fire, rubbing alcohol on an open wound. It all feels so toxic. Parted lips give way to a writhing tongue, and I’m dashing for the mirror.

 

InDependence Memoir

We were lined up facing each other, he and I. That long row of window seats on the 146. Sat across from him, eyeing his pantyhose. He sat across from me, eyeing me, eyeing his pantyhose.

He’d been jogging, the blue shorts pulled up high. What does it feel like to run in nylons? Is there room for the sweat to escape, or does it get mushed against the skin with nowhere to go?

The Michigan tee didn’t match the rest of him, and his lips moved in a sort of murmur. Was he talking to me?  Couldn’t hear over the Goo Goo Dolls. “Tonight’s the night the world begins again.” Lyrics like that make you wanna gaze out the window. I gazed at people’s ankles instead.

Along Clark Street, humidity choked the daylilies. Tangerine blossoms heavin’ in the heat. The night before, the scent of weed had sailed up to the balcony. That bench, they should have gotten rid of it. Teens came from all over to pass joints around. All of Chicago and they chose the bench below my window. Summer passed with a chorus of crickets and that scent.

Shadows in the bedroom danced like gold though. One night, on the balcony, a shooting star cut across the sky. It looked like make-believe but it wasn’t. Monotony then magic, that’s Chicago, that’s life. The years get lost between dying embers and shooting stars.

The City of the Big Shoulders. That’s what Sandburg called it. For me, Chicago was the City of Slumped Shoulders. Body language, you know? You are how you feel. I felt like someone who wasn’t supposed to be noticed, not in that flirty way. Those were the days of Starbuck_3 on Match. Worked in advertising, liked to IM in the evenings. He’d catch me writing Best Bets or some party story for RedEye. Sitting there thinking up cliches, the instant message pops up. “Hey hot stuff.” He was into haiku.

“Why don’t you putta

Side the pen and take a chance

On me. Dinner please?”

Starbuck was cute, better than Jude. Jude, great name, awful etiquette.

“Just curious,” he asked. “How much flab do you have under your arms?”

There was Antoine, the cute cafe manager. Age appropriate too. Free coffee once a week, that’s how that rolled. He was German, I thought he was French. We went Dutch.

It was around this time that the fire went out. Heard the singe, the wet rag upon a lit match. It sounded loud when it went out, like life losing power. Silence and darkness fell all at once.

“What do you call a pig that does karate?”

On the treadmill, incline at 10, speed at 5, and some guy’s in my face, talking about a pork chop. Does he not see me sweating? The Tribune people had left, probably home eating sloppy Joe’s by now.

I was stuck.

“What’s your name?” the guy asks.

“Beth,” I huff.

“I bet I can spell it backwards.”

He turns around and spells it forwards.

That’s when I laugh.

Dogs pick their owners, Steve picked me. Made him my friend and called it a day. The Bad Joke Teller. He owned that shit.

There won’t be another Lakeshore. Not like that, not like then. Sue said, “It’s your Cheers,” and she was right. Like Norm looking for a barstool, I walked in. Took 20 minutes to pass the front desk. Brian had a crush on me. Used to watch the joy spill from his eyes. He had this bubbly laugh, a sort of champagne. It erupted in sound then escalated in silence.

Brian came from Faulkner Country, the Southern drawl smooth as butter. He had the kind of sweetness you find in movies. One part Southern gent, the other part me, that was Brian. Sue said, “He’s Beth in guy form,” and he was. I know how she meant it. She may as well have said, “Don’t know how you make it from A to B every day.” With him, things could go south in the most charming of ways. An air of folly followed us whether together or apart. When the key didn’t work on Brian’s car, he called Triple A for help. Turns out it wasn’t his car. With us, no one wanted to watch, but they had to. The shit show was too compelling. Nobody knew where it would go. That was the fun of it, that was the horror of it, too.

Brian laughed until he cried, the warmth in him cooled by a tinge of frustration. Would have given more of myself, there wasn’t enough to go around. Parts of me were going missing. Lakeshore’s where I went to feel whole. Past the front desk, headed straight for the sauna. I hoped “The Sauna Lady” would be there.” Tall, thin, with the grace of a stallion, she’d retired from the Chicago Tribune. I forget what she did there. Could have been a fashion editor, maybe she was. Wrapped in a towel, the gray hair perfectly coiffed, she espoused old-world elegance. Woolen suits, high heels, a crush of red lipstick. That’s how I imagined her. With the pearls of wisdom she dished out, life was gonna be OK.

“You know what you should do? Skip from one end of Michigan Avenue to the other. Then you’ll see how magnificent that mile can be.” Why don’t more people skip, she wanted to know. “Show me a skipper who’s not smiling,” she said. She had a point.

Don’t know which was more therapeutic, the dry heat or her wisdom. I’d sit there until beads of sweat trickled down my chest or until stress trickled out of me. Walking to Lakeshore Athletic Club made for a little pilgrimage. Socializing, steaming, working out. Had to make time for it all. So much more than a gym, Lakeshore’s where I belonged. Forgot my shorts, worked out in jeans. No one said a lick about it. I love that.

There was the woman who lost 70 pounds walking. She did no other exercise and lost 70 pounds. She arrived at New Year’s with fire in her eyes and a laser focus. One day, in August, saw her packing up.

“You inspire me.”

Moisture dusted her eyes. Tears or sweat, hard to tell.

That’s when she mentioned the 70 pounds. “Put your mind to something, it’s yours forever.”

Lakeshore, the perfect gym for people who were losing themselves. Some were shedding a person in body weight, I was losing myself in other ways.

Michael is a musical force in his own right, always was. The talent that made Von a sensation at 12 helped Michael stand out at 21.

Lincoln Park’s blues scene comes alive in a cool, thumping tantrum of Chicago sound. Belting voices, bottleneck guitars, the melancholy sirens wail all night long in the dives and doorways near DePaul.

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. 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.  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 his 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. 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.

“Hello?”

“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? 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. I 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.