Raising Awareness However I Can

Yesterday I was honored to be a guest on the Joy Cardin Show (listen to the broadcast here) on Wisconsin Public Radio to discuss living with epilepsy and my memoir, The Sacred Disease.  I was surprised by how many people called in to share their experiences with seizures, their hopes for the future, and the subtle ways that epilepsy changed their lives.  I walked away from the broadcast both excited to have participated in another forum to raise awareness and saddened that there are so many people who are touched by seizures in many different ways.

The following is a poem I wrote in effort to describe what it’s like for me to live with epilepsy.  I’m sure those of you who are touched by seizures can relate.  I cope with my uncertainty by writing and speaking out as much as I can.  What helps you?  Please share in the comments below.

Living with epilepsy means that I know the distinctive scent of EEG glue as well as I know the scent of my children.

Living with epilepsy means that I’ve learned how to fall asleep in MRI machines, wait patiently in doctors’ offices, and perform neurological tests without prompting.

Living with epilepsy means that I must not be the “Epileptic Patient” but rather “the patient with epilepsy.” I cannot let the seizures own me.

Living with epilepsy means that even some of my most significant days have been accompanied by seizures: the day I delivered my son, my tenth anniversary, Christmas Day, Thanksgiving.

Living with epilepsy means that when the familiar sensations of a partial seizure appear, I find myself searching for a place to sit away from view in case the simple seizure leads to something more.

Living with epilepsy means hiding my illness under a well-designed shroud, afraid that if others know that I have seizures they will lose their faith and trust in me.

Living with epilepsy means I examine my tongue each morning in the mirror to look for the characteristic bite that’s my sign of a nocturnal seizure.

Living with epilepsy means learning to ignore the staggering fatigue that comes with each new medication trial and medication adjustment.

Living with epilepsy means that I can list almost every anti-seizure medication and its associated side effect profile. I have tried them all.

Living with epilepsy means that I treasure the mundane and hold these things as close as possible, for fear of losing them: driver’s license, health insurance, life insurance.

Living with epilepsy means that I will consent to tests that turn off part of my brain, remain tethered to a wall with an extension cord for up to a week, and consent for removal of my entire temporal lobe in hopes for a cure that still eludes me.

Living with epilepsy means that I have created a handful of euphemisms to describe a seizure: head problem, not right, episode, incident.

Living with epilepsy means I feel compelled to join others like me and look down the long, dark road that I pray may ultimately lead to a cure.

Happy Epilepsy Awareness Month!

Happy Epilepsy Awareness Month!  I’m happy to announce that my memoir, The Sacred Disease, will be published on 11/16/15 and hopefully help to raise awareness about epilepsy during this important time.  The electronic version of The Sacred Disease is now available for pre-order on Amazon and the print version will be available for pre-order later this week.  If you’d like to contribute to a fantastic organization (100% of author royalties from the sale of my book will be donated to CURE) or learn more about epilepsy, please consider visiting the link below.

The following is an excerpt from The Sacred Disease when I was pregnant with my first son. . . 

DURING MY SENIOR resident rotation in the Neonatal Intensive Care Unit (NICU), my job was to attend all high-risk deliveries and lead the team of pediatric residents during newborn resuscitations. Most of the time, this job was simple and rewarding. We scrambled into delivery rooms like a team of blue-clad superheroes and gathered medical supplies for every contingency like a well-honed pit crew. After we prepped for the imminent delivery, we often had a few moments to settle back to our appointed spots in the corner of the delivery room and wait.

It was a privilege to witness the shocked look on a baby’s face as she opened her eyes to meet the world. During our evaluation and resuscitation, I loved watching the baby respond to the sensations of touch, sound, and sight. I relished the sight of translucent skin transforming from blue to pink and the sound of each new cry that welcomed the ambient air and swept the fluid out of a newborn’s lungs. I loved the new fathers, reduced to a puddle of tender surprise, who sidled up to the resuscitation table, peered over my shoulder, and watched, mesmerized by life’s first moments. Each time I handed over a dry and bundled baby to speechless parents, I loved to say, “He’s perfect!” while I surreptitiously patted my belly and wished for the same scene to play out in my life.

Unfortunately, not every delivery was picture-perfect. Most of the time, we knew if the baby had a birth defect or major medical problem before the time of delivery, thanks to the accuracy of prenatal ultrasounds. Still, there were a few surprises.

I was working one night when we were called to an emergent Cesarean section of a baby who had an unexpectedly trapped hand poking out of the cushioned confines of her mother’s uterus. Somehow, through twists and contortions in the womb, the baby’s arm became stuck over her head. During the initial phase of labor, her mother delivered the baby’s hand but was unable to deliver the rest of the baby.

I jogged down the hall with the pediatric team, following the gurney that carried the laboring mother. A group of concerned obstetricians swarmed around her. We hurried to scrub our hands and fingernails and donned our surgical masks, hats, and booties before we fanned out to our respective positions in the operating room. I stood sideways next to the infant warmer; my pregnant belly interfered with my ability to fit easily in tight spaces. I wondered what to expect while I watched the obstetric team make a quick incision to free the baby.

Moments later, the pediatric intern swiftly placed the baby on the warmer and we began our assessment and resuscitation. I reflexively dried and stimulated the baby and my anxiety decreased when I noted that she was breathing and crying spontaneously with a vigorous heart rate. Three of her four limbs flexed and extended as expected, but the fourth, the right arm, lay limply at her side like an azure balloon.

I touched and lifted her arm with hesitation. Her fingers looked like five blue sausages attached to a ballooned arm. Her entire arm jiggled like electric-blue Jell-O when I gently laid it back on the table. Soon I sensed the presence of the new father over my left shoulder. Instead of pronouncing the baby perfect and healthy, I explained that we would have the pediatric orthopedic team assess the baby’s hand and arms promptly.

Tears welled in the father’s eyes. Over the cacophony of the noisy delivery room, I gently asked him what they planned to name the baby.

“Elizabeth,” he uttered through tears. “Just look at her,” he continued. “Her eyes are exactly like her mother’s! She has a dimple on her chin like me! And look at that thick head of hair! She’s going to be a beauty.”

I nodded and relaxed, ashamed that I’d thought the baby’s deformed arm and hand would be all a new father would see. Instead, he saw beyond her obvious imperfections and focused on the beauty elsewhere. I wished for a moment that we all could be as authentic and true as a new, proud parent. Whether there was a discolored, swollen limb hanging without purpose or rogue electrical currents coursing through a brain, there was beauty in everyone.

Even this baby.

Even me.

* * *

As the weeks passed leading up to the delivery of our baby, I felt as if my life were mimicking an epileptic seizure. Time and again, I whipped full-force from one role to another. I jumped from physician to patient to expectant mother in a manner similar to the involuntary forceful movements of my limbs when I experienced a seizure. When I collapsed into bed each evening, my persistent dull headache and general exhaustion was reminiscent of the familiar post-seizure lethargy that marked many of my days. The obstinate ambiguity of what to expect for the little boy growing inside mirrored the uncertainty over which days would bring a new epileptic seizure. I fought back fear of how seizures affected our baby and tried to ignore the nagging truth that although I diligently followed all the rules of pregnancy and avoided alcohol, caffeine (mostly), the cat litter and soft cheese, our baby was at markedly increased risk of a birth defect or injury. I felt convulsed and fragile, tacking between invisible but tangible boundaries.

And yet, reveling in my dreams and excitement for motherhood, I was charged with expectation and anticipation. No matter which role I played – doctor, patient, wife or mother – I understood that unpredictability was as important and necessary to life as breath. I acknowledged the unsettled and unknown as things to discover rather than fear. A new and strengthening inner peace chased away my demons.

After years of fighting, I accepted that epilepsy is beyond my control. Patient outcomes are to some degree beyond my control. Our baby’s future was unpredictable but full of promise. Whatever I don’t know is OK. My life is OK. I embraced the uncertainty and relished the surprises that came with each day.



Book Excerpt: Tragic Perspective

During the same time I prepared for epilepsy surgery, I worked as a pediatric resident at the University of Wisconsin.  Although the pressures of residency were challenging while I dealt with my own illness, the tragic perspective that I gained while caring for hospitalized children kept me focused and centered.  The following is an excerpt from The Sacred Disease recounting one of my most memorable nights in the PICU.

When pediatric residents were assigned to be on call in the Pediatric Intensive Care Unit (PICU), we stayed overnight in a small, cramped call room in the hospital and spent many sleepless hours standing over the beds of the smallest, most fragile patients in the Children’s Hospital. I was on call one night shortly before my scheduled inpatient stay for EEG monitoring.

Soon after I arrived to report for my shift, I was called into young Makayla’s room.

Makayla was a four-year-old with symmetric braids of thick black hair and glistening dimples that marked the middle of her cavernous cheeks. She was diagnosed with a pediatric tumor of the eye called retinoblastoma two years previously, shortly after her father passed away from the same disease. Makayla’s initial round of surgery and chemotherapy was successful, even though one of her bright, mahogany eyes was removed to rid her body of the tumor. Several months before her admission to the PICU, Makayla began complaining of pain in her hip and neck. A CT scan confirmed metastasis of her original tumor to several areas throughout her body.

When I entered Makayla’s hospital room, she was curled tightly in her mother’s lap. Her mother shielded her protectively with her long arms and strong shoulders. Though she cradled her baby in a loving embrace, a mother’s love wasn’t enough to reverse the slow decline in Makayla’s heart rate and shallow breathing. Makayla’s cancer had advanced inexorably enough that she was losing her grasp on life. A nurse was present to administer medications to ease her passage into another world. It would be my job to pronounce her dead.

Makayla’s mother wept quietly as she held her baby and monitored the florescent green line that recorded her heart rate on a monitor nearby. I stood discretely in the corner and tried to blend in with the wallpaper, feeling like I was eavesdropping on an intensely personal moment. A hospice nurse held Makayla’s mother’s hand. Her gentle sobs became louder each time the child’s fragile breathing slowed. Makayla’s bright fingernails, polished a fire engine red, seemed out of place in the somber room.

We stood that way for what seemed like forever. At last, Makayla took a final sigh to announce that she had fought long enough. The bouncing green line turned flat, and the child’s mother wailed and cradled her daughter close to her cheek and cried, “My baby my baby my baby.” I made a note in Makayla’s chart. Time of death: 12:03 A.M. Death was stronger than a pristine child with bright red fingernails and an insatiable cancer.

The familiar vibration of the pager on my belt abruptly pulled me from my thoughts. The story ended in Makayla’s room, but down the hall, the Med Flight team wheeled in another patient in need of acute care. I jogged down the curved hallway and found the attending physician talking quickly to the assembled group at the same time he used an inflatable bag and mask to breathe for an unconscious patient.

“Sixteen-year-old female who ran into a tree while skiing in a race approximately two hours ago. The victim was wearing a helmet but the helmet was crushed during headfirst impact with the tree. The patient was found unconscious and unresponsive on the hill and no longer breathing independently. She was intubated immediately and flown here.”

I studied the patient’s condition while I listened.

“In-flight management included ventilation and fluid resuscitation. So far, we haven’t been able to get any purposeful responses with stimulation. She has an open head wound with visible extruding white matter. Brain swelling and cerebellar herniation is a significant concern.”

As soon as the gurney stopped, a swarm of doctors and nurses flocked to the patient. “Let’s move her over.” Dr. Brady, the attending PICU physician, gestured to the larger bed in the hospital room.

“On my count. 1 – 2 – 3!”

We slid the patient as gingerly as possible to the bed that would become her home for the next three weeks. I inspected the devastated teenager lying before me as the energy and chaos in the room calmed.

Sarah was sixteen but she didn’t look a day over twelve, even when shroud with a cluster of medical devices, splints, and dried blood. A turban of bloody gauze clung to her head, and her neck and body were strapped to a rigid board to ensure stability of her spine. Sarah’s eyes were small slits of eyelashes hidden in a sea of swelling and bruises that had previously been her youthful face. There were several untouched locks of caramel colored hair that escaped and flowed down to her shoulders just outside the rigid confines of the cervical collar and head dressing. Looped purple pen strokes marked an unknown phone number on her hand, a remnant of the carefree teenage existence that was crushed to pieces along with her skull against that tree.

We hooked Sarah to the monitors and ventilator in the ICU and inspected her wounds while we waited for the neurosurgery team. She would need emergency surgery to stabilize the swelling in her brain and decompress her skull fracture. We watched her vital signs with trepidation.

Moments later, I tore my eyes away from the monitors around Sarah’s bed and turned to see a cluster of neurosurgeons jogging down the narrow path to the ICU. Their white coats floated behind them as if they were galloping on clouds as they pushed forward to the girl’s room. My shoulders relaxed and my breathing eased when the neurosurgery team wheeled Sarah down the hall to the operating room. Makayla would not live to see adulthood, but Sarah’s future remained a possibility. For this, at least, I was hopeful.

In one night, I met the Unimaginable, Unavoidable, and the Unexpected. Two beautiful girls’ lives altered or ceased while most of Madison slept. Weeping, I walked the lakeshore path to my car. I cried in frustration at how helpless I could be even when cast in the “helper” role. I also was ashamed of my obsession with my own illness. Seizures were frustrating and unpredictable, but I still woke up each morning to welcome the promise of a new day. Anticipation and expectation were still mine to enjoy. Makayla and Sarah now embodied only golden memories or fiery regrets of moments gone tragically awry. I dried my tears and lifted my chin to the sun as I filled my lungs with the cool, early spring air. It was a new day, and I was acutely grateful to be part of the world.