It was after the movement disorder and before that I started losing myself. Sitting on the bus, watching the snow fall on Michigan Ave., wondering where life was headed and how things had gotten so stuck. Someone had made me trudge through a field of quicksand. Except no one had made me do anything, see? Was doing it to myself. What was it, though? What was it?

Getting stuck on Lamictal is easy. Twenty-four hours in a day, 17 of ‘em spent wishing. That life would be easier, that circumstances would change. You can’t be the one to change circumstances. Paralysis of action, see? Why not let yourself be fluid and move freely through the world? Like a yoga class where you wear loose-fitting clothes. Who doesn’t like loose-fitting clothes? And why wouldn’t I give that to myself?

The suicidal thoughts had returned as little bursts of self loathing. Didn’t want to die so much as didn’t want to live. Wasn’t about to jump in front of a bus. But if one just happened to careen out of control and tumble in my direction, would I move?

You tell me.

That’s what it’s like on Lamictal. Not from the get-go, over time. Drug’s a thief. Steals action, emotion, ambition, desire. All the things that make a life. One by one the drug plucks ‘em away, like some predator in a horror film. You won’t be needing this anymore, sweetheart.”

What did I want? Nothing. That’s the point. Stop wanting, you stop livin’. Think about all I missed. Standing in the threshold while outside there were moments to be had. There were moments to be had inside those very walls, had an opportunity been created.

It’s easy to get lost in the vastness of the space between a life well lived and mere existence. The drug sucks you up and spits you out, and all you can do is let it. Such powerlessness isn’t rare, but it’s not common. You find it in prisons, hostage situations, abusive relationships. Days pass into months, months into years. And you’re still there. In the same place, with the same job, in the same life, wanting out. If only you could move.

Can hear Sue’s voice rising in the way she’d argue with a sister if she’d had one. She’s annoyed about something I did, or didn’t do. Can’t get my act together and it looks to the world like I don’t care. It’s not a matter of caring, though. You can care and still not budge. Sue has a hard time watching me, I have a hard time being me.

Feel Chicago as I write this, the comfortable inadequacy that held me back before I knew it could. There’s a stillness that happens when you’ve accepted things too soon. Others were fighting not to feel the stillness, or maybe they didn’t have to. Point is, I wasn’t fighting anything and I should have been. Everyone was making eye contact in a world where I avoided it. Took a while to realize, eye contact is a way of being. Without it, you miss connection.

Some run toward. A greater future, a bold new adventure. I was running from. The discomfort within. Kept pace to the sweeping rhythms of the runner’s trot. Lightweight Adidas upon gravel. The path comes in behind the zoo. Take it up Fullerton to Theater on the Lake, past the rocky outpost, keep going.

To Belmont Harbor, through the shady strip, past the Waveland tennis courts, keep going. Nothing’s better than Montrose Harbor in the evening sun. Time it right, you can catch the sunset over the water and make it home by dark. Sky was always peach by the time I got there, reflecting off the water like glass. The pounding of rubber soles upon gravel let me purge, for a little while, all that I came to forget.

When I lost the prescription plan, life got harder. Can’t remember why I lost it. Did I switch insurance or did they switch me? I think they switched me. 

One day I had it, the next I didn’t. It was so messed up. Was in the new place by then. The one in Boystown, a block from Sue. It happened at the Walgreens. That’s how Chicagoans say it. You gotta have “the,” otherwise it’s not Chicago. So it was at “the Walgreens,” where Maurine with an “i” worked. Showed up at the window like always, except this time the pharmacist said, “That’ll be thirteen hundred dollars.”

Maurine with an “i” could take the sting out of anything. After picking my jaw up off the floor, I walked up front to see her. She ran the checkout, had to hear what she’d say. Didn’t always need the product, but I always needed her. Ringing up the Raisin Bran, she hits me with “Two scoops, two scoops.” She knew every slogan under the sun. Never failed to recite it either.

“Don’t squeeze the Charmin, Mr. Whipple.” That one made me howl. I was on a Twix kick the summer that Sue was into Kit Kats. We’d debate whose slogan made for a better checkout experience. “It’s a cookie and a candy,” that’s what I got. Saying it, Maurine didn’t look up. Otherwise she would have seen me smiling.

After the insurance was snatched, I bought pills out of pocket. Ponying up 100 bucks every three days threw a wrench in life. Wonder what Maurine would have said about that. I know what she would have said. She had that look when ladies would buy tampons, swapping the slogan for a side-long glance. The register was her stage. With the smile cracking more in her eyes than on her lips, she’d glance at the box then back at you. The box, you, until all the embarrassment was gone. That’s what Maurine did, she took the shame out of things. I needed her at the pharmacy.

Don’t remember the details. I know I had to choose. You know, between medicine and food. There was so much shame in it. ­Why couldn’t Maurine work the pharmacy?

Don’t talk about the hug, the one with Dennis in L.A. Feel it from time to time, though. Even now. The energy became part of my soul. Was it his energy? It’s both of ours now.

Cruising the pitch-black roads from Santa Monica to West Hollywood in silence. Glare of headlights against the dark, his foot upon the gas. Anytime you’re aware of someone’s foot on the gas and it’s not your own, you should probably get out of the car. 

Speeding past the mansions on Sunset Boulevard, revving was the only sound. Beneath the jean jacket, the white tee was light and airy, the kind that sweats through easily — and it was starting to. The date, for lack of a better word, couldn’t end fast enough. Dennis was so fucked up, took me by surprise. Lose my voice with people like that, you know. Too stunned to know what to say. If he’d been more normal that night, maybe I could have been too. What is normal anyway? 

At the diner, when he started slouching in the booth, raised my eyebrows ever-so-slightly. The silver canister of pills was disguised as a keychain. Didn’t even notice ‘em till he dumps ‘em on the table. A few stragglers spiral onto the floor right as the waitress brings the coffee. She halts for a second, then leaves us to clean up the mess. 

“Tranquilizers,” Dennis whispers. 

What to say to that. Eye him a little too harshly, wondering what the hell. He’s slumping and sinking and not so tall to begin with. Any lower he’ll end up on the floor with those pills. What’s he saying? Hard to tell with the slurring. Takes a sip of coffee and smiles. 

Coffee, yes. Drink more. 

We were supposed to hear live music. That cool singer who did the soundtrack for Dennis’s film. Arrived at the club as the show ended, just in time to meet the guy. He dressed in black and wore a fedora, but the music was done. 

The diner was Plan B. The lights in that place were too bright. Everything was on display — all the baggage we tried so hard to run from. Dennis didn’t try to disguise his shortcomings. Did he perceive them as shortcomings? Dennis is fluid in the way Snake River rapids are fluid. Wild, rapturous, untamed. Comes on like a torrent, and there’s always a risk you’ll get caught in it. 

It was supposed to be a hug goodbye. A few pats on the back and be done with it. Pulling up to the house, couldn’t wait to get out of the car. Our chapter might have ended with my back to him, walking up the drive. Instead, the hug sparked a stunning transformation. There came a surge of energy, a suturing of souls so magnetic, it could change a physiology. And it did. 

Shocked by the spark, we pulled closer, heart to pounding heart. Center console jilted the vibe, so we tumbled into the backseat. Full body contact. The scent of leather mixed with men’s cologne, and it was hard to tell ’em apart. 

With electricity surging, his smooth shave upon my skin, arms buzzed until they ached. Energy like that could become an addiction. An antidote to all that ails. I’ve tried to recapture it in other embraces, with other guys, in other cities. Nothing’s ever come close. L.A. is the City of Angels, and they flew in our presence that night. 

Could have hugged him forever. Why did we stop? At some point, it must have seemed ridiculous, clinging to one another in the dark. As if sourcing the last life force on earth. 

Thirty minutes of hugging can heal a person. It was years before I understood how much. All I know is we had a connection. A soul connection that should never be denied. Left up to us, our acquaintance would have ended in the twilight. With a quick drop-off and a “don’t look back.” The universe had other plans. 

In the early morning silence, on a West Hollywood side street, with no sound but breathing, it was easy to forget our differences. We were young enough to forget fast and believe fully that this crazy thing was destined. Being writers, we both knew. Sometimes the story writes you

Making the reluctant walk into Sue’s brother’s house, the buzzing continued. Through brushing my teeth, and washing my face, and the 20 minutes it took to get into bed. With the last moments of the night fading away, Dennis was all I could think about. Out of his embrace, and still in it.

I keep returning to the moment in Dr. Sullivan’s office where I’m breaking down in tears and he’s shouting, “Don’t be such a baby.” That’s how our divorce unfolded. I remember it like a film reel, to create distance I suppose, make it hurt less. 

There was an intolerance to Dr. Sullivan that made him unrecognizable that day. With my legs dangling from the exam table, I cried inconsolably. Unwell and unheard. Dr. Sullivan wanted me to shut up and be fine, but I was far from fine, and no amount of shouting would change that.

Noted the arms, taut as a slingshot across his chest. That’s when I realized. He blames me for this. The accusatory stance made me cry. Not the spasms. Well, the spasms too, but mostly I was crying because of him. 

“Don’t be such a baby.” He practically spat it. Acted like I was deceiving him, making him confront/an aspect of himself/he refused to accept. Was I? Funny, this condition was the version of myself I refused to accept. That’s why I was there. 

My eyes had that bloodshot feeling where you just know they’re red as fuck. Tears clung to my cheeks like a dryer sheet, nose running. It was an ugly cry, almost hiccup-level, in early May. No sleeve, of course, to wipe with. 

I’ll admit I was hysterical. Before the vanity a week earlier, I’d watched in horror as the spasms rippled in waves, from right to left and back again. There were the eyes, pulsating, clenching, clamping shut. The tongue writhing wildly in the mouth. It snaked in twists and turns that no human could replicate. Suspecting all of this was permanent, I sobbed. 

In Dr. Sullivan’s office seven days later, the madness continued. Fiery tingling beneath the skin, the kind of burning that could char your insides. “It’s just a nuisance,” Doctor Sullivan was saying. As if I were the nuisance.

“A fly on the shoulder is a nuisance. This is frightening.” 

The respectful tone I’d long been accustomed to had a toxic edge now, like the rest of me. Felt myself glaring and very much the object of someone’s shame. Was it mine or his?  “You’re fine, Marybeth,” the doctor insisted.

Desperate for an out, my gaze locked on the far corner of the ceiling. It was the look of a woman being silenced by her doctor. Not just any doctor. One I’d had, one I’d relied on, since forever ago. Sitting in Dr. Sullivan’s office, age 36, I’d been his patient for half my life. He should have known me, I thought he did. How could he not? In the tear-stained seconds spent eyeing the ceiling, something detached from my being. Felt like upheaval, probably looked like it too. An iceberg breaking loose in Arctic waters. 

I came to Dr. Sullivan one summer, when a man stood before the tanks in Tiananmen Square. Communism was falling in Eastern Europe, car bombs exploding in Belfast. The world was rising up. Tapering off medicine at 18, I felt the pull of change as much as anyone. Given one more chance at a drug-free life, I took it. 

When the seizure came, it was in the style of a teenager — at a music festival out in some pasture. Crossing the field with Kelly when the lights appeared. With the pressure coming on, I placed the cigarette on the grass and lay myself at the feet of strangers.

The mud had dried, but not completely, and the chill of rainwater seeped into my side ice cold. Kelly crouched beside me, saying something I couldn’t hear, and the world faded into oblivion.

It’s a lonely experience having a seizure among thousands. Even with a friend by your side.

Dr. Sullivan had the warmth of a woolen cardigan. I liked him from the start. It takes a special person to make you laugh after a seizure, and he could do it. Got me in for an appointment, put me back on pills. Writing out the script, he sensed my dejection. “It’s just for now, Marybeth.” The words made the decision easier to accept.

Dr. Sullivan didn’t rush me through like other doctors. Never in 18 years did he rush me through. You know how rare that is? Instead, he worked the room with the precision of a surgeon. Sharp, efficient, masterful. “Follow the flashlight with your eyes.” “Walk across the room, balance beam.” “Touch your nose, touch my finger. Nose to finger, nose to finger.”

He started every appointment by washing his hands. Working up the lather, the harsh scent of medical soap filled the room. With the suds growing upon his palms, I imagined how funny it would be if he clapped his hands together with a flourish, sent the suds spraying. Wished he’d do it, just once.

Went to Dr. Sullivan by default, too old for the pediatric neurologist. Dad picked him, so I went. Dad didn’t pick just anyone, you know. I viewed Dad’s choice as an endorsement, treated it as such. Over the course of 18 years, trusted the doctor blindly. He was the best, and he knew best which decisions were right for my health. 

Coming up as a child through the healthcare system, I spent my youngest days terrified by doctors. In the earliest record on hand, age 3, my fear is documented in the chart. Over time, fear gave way to trust. It was an innocent trust with no agenda. Believed in the good of doctors because I believed in the good of Dad. 

After a while, there was no distinguishing the doctor’s office from my own genetics. Going to the neurologist wasn’t simply a business transaction, it was a community. Lollipops and smiles and hugs, you know? Dr. Sullivan was the adult version of the community for the adult version of me. No more lollipops, just the relief of a laugh when I needed it most.

Now here I was at 36, begging for an out. Was it the brightness of the lights or the nausea in my gut that made it so apparent we couldn’t continue? The doctor-patient relationship had changed because we had changed, and the tension between us grew too fraught to ignore. Where had the tension even come from? It looked like the death of a relationship. Chalk it up to a loss of faith in each other.

“Go downstairs and get an EMG, then come back and see me,” he said. 

Given the damage done in the 15 minutes prior, it’s strange to know these were the words that led to our demise. Even before the EMG, I knew it was the last appointment with Dr. Sullivan. Knew it shuffling past the people in the waiting room. Pushing the down arrow for the elevator. And dabbing away dejection that had dried on my face. Still, it was the EMG, in all its innocuity, that slammed the door shut.

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 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.

Out in the hall, Hans is leaving for work. There’s the key fidgeting in the lock, his footsteps upon the stairs. 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. Fuck him. 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.

Racing from bedroom to bathroom, the final seconds of stillness tick away in a flash of bare feet and creaking hardwood. In an instant, the hallway becomes the gateway where woman turns crusader. By the time I reach the mirror, a new chapter has begun — the one where I’ll rail (and rail and rail) against complacency.


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, bell-shaped blooms heaved 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 when 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. Sounded loud when it went out, like life losing power. Silence and darkness fell all at once. Sitting on the sofa, wondering about the tug in my cheek, that’s how it started.

“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.

“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. 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. 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. 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.