Book Excerpt! From The Sacred Disease: A Memoir of Life with Epilepsy

For those of you who follow my blog, you may have noticed that my blog entries have dropped to, well, zero recently.  I could tell you that I’ve been busy or that life in general has been overwhelming but the real truth is much more exciting.  I have been writing a book about my journey with epilepsy.  I hope that by telling my story, others will feel more comfortable talking about seizures.  My book is entitled The Sacred Disease: A Memoir of Life with Epilepsy.  It will be published by Booktrope in late summer or fall 2015.  I plan to donate 100% of any profit I make from the book to CURE (Citizen’s United for Research in Epilepsy.)

Hopefully, you’ll want to buy the book just to donate to CURE.  In case I need to entice you, I will be releasing small excerpts from the book on this blog up until time of publication.  The following is the story of the night before my second son was born…

I was scheduled for induction of the delivery of our second son exactly on his due date. My second pregnancy was a bumpy ride of escalating medication doses, increasing seizure frequency, and several unplanned trips to the hospital. My obstetrician advocated for induction, hoping to avoid further complications. It was time to move on.

The evening before William’s scheduled birth was a cool, fall night. The wind blew strong gusts that sent the multicolored leaves galloping across our concrete driveway to accumulate in a pile in a ditch beyond. Inside, our house was warm, alive and festive. One of my husband’s high school friends was in town for the night and we invited him and his spouse over for an impromptu dinner.

When I slipped out to grab the mail, I peered into the windows filled with light and admired my smiling husband, Andrew, and our gregarious two year old. Alex sat on his dad’s lap and chatted animatedly with our visitors. The heartwarming scene inside the house energized me momentarily, but I knew I wasn’t myself.

I pushed myself to the limit that week. My globe-like belly made it almost impossible to sleep and I was working long hours in effort to tie things up at work before maternity leave. I knew that seizures would find me soon.

After our friends left, my husband and I cleaned the kitchen and packed our bags for the hospital. I was thrilled that it was almost – finally! – time to meet William. I took the chance to appreciate the beautiful evening for a last time when I took a bag of garbage to the end of the driveway. Our toddler was in bed, our company was gone, and everything was set for our new baby’s arrival.

I walked and listened to the familiar music of the leaves and the trees when an aura swiftly materialized. I told you so, Epilepsy seemed to taunt through the pulsing heat and confusion, you can’t deny that I am a part of you.

I saw Andrew at the other end of the driveway and walked to him slowly through the developing seizure. Later, Andrew told me that I walked to him with a blank stare and stood quietly before I abruptly became rigid. My unconscious body slumped into his arms and he carefully lowered me to the ground just as the jarring muscle contractions of the seizure began.

Andrew dragged my pregnant, convulsing body into the safety of our garage with effort. He placed my bobbing head on a pillow of recycled newspapers before he ran into the house to call 9-1-1.

* * *

A stranger’s face hovered over me as the fog cleared.

I was lying on the cold, hard floor of our garage surrounded by unfamiliar lights and sounds. Off in the distance somewhere, someone was calling my name.

“Kristin? Kristin? Can you open your eyes for me?”

I managed a one-eyed glance at the concerned faces around using all the strength I could muster. Just beyond the swell of my abdomen, I saw the furrowed brow of Andrew, who was leaning down to rearrange a blanket draped over my legs.

Where was I?

The unfamiliar man with a soft voice and a warm hand on my wrist introduced himself. “Kristin, my name is Dan. I’m from the Middleton EMS. Your husband called us tonight because you had a grand mal seizure that lasted about 6 minutes. We found you here on the floor of your garage when we arrived, and you’re starting to wake up now. We’re going to get you on to this gurney and head into the hospital to check on you and your baby.”

Baby? Confusion blurred to panic when I remembered my scheduled induction the following day. Tears welled, and strong hands lifted my wayward body off the cold floor and onto a cool bed. I was rolled into the back of the ambulance where the air was warmer and the lights were brighter. Moments later, the familiar silhouette of my brother appeared at the ambulance’s open back door. My brother’s face flashed red and white with the blinking emergency lights. He nodded his hello and reassurance before he went into the house to keep our son company. Andrew’s lips brushed my cheek, the bed was secured, and the truck rolled away.

William Kristofer Seaborg was born the following day, at 8:44 P.M., just an hour after the harvest moon dropped below a golden horizon. He was proportioned exactly the same as his older brother born twenty-seven months earlier: 8 lbs. 4 oz. and 20.5 inches long. His bald head was adorned with a thin layer of hair as fine and blond as the feathers that coat a new baby chick. His large eyes sparkled with hints of the bright blue that would remain. We were in love.

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Lisa

Lisa sits across from me in a crowded coffee shop and speaks in a combination of hushed and muted tones as she recounts her story of living with epilepsy.  Her bright blue eyes are rimmed with emerald specks of green, the brightness of which belies the hordes of medication I know she takes every day.  There’s a single man sitting close by, laptop open, who seems to study us in a pirate-like one-eyed stare when Lisa mentions “grand mal seizure” or “brain surgery.”  He seems to be searching for the image he would expect to accompany those words — instead of two thirtysomething women on a Sunday evening.

Lisa’s epilepsy story began in 1977 in the idyllic village of Wonewoc, Wisconsin, population 834, set in the unglaciated region of northwestern Wisconsin 30 minutes west of Wisconsin Dells on State Hwy 33.  Lisa’s first seizure began when she had a high fever and a viral illness as a small toddler.  Her parents tried desperately to cool their quaking child by struggling to put cool washcloths on her while her limbs twitched and placed her in a cool bath as the seizure continued.  Because the local hospital was not equipped to care for critically ill children, a still-seizing Lisa was transported via ambulance over country roads to Madison to seek medical care.  By the time her seizure abated, she had a temporary right sided paralysis and a permanent change deep in her brain that would last a lifetime.

Lisa doesn’t remember her first seizure, but she remembers receiving anti-epileptic medication in sugar-sweetened water every day until she was five.  She recognizes the fear in her parent’s faces as they recount the story of her first febrile seizure.  And she can remember stark details of the day when her seizures came back.

UW – LaCrosse seemed like the perfect place for Lisa to go to college.  It was a well-renowned university, a reasonable distance from home, and had a fantastic art program, which was Lisa’s chosen major.  Early in her college career, Lisa remembers waking up, almost in a trance, as EMTs and her boyfriend were talking to her. She had heard a sudden crack which she later realized this was the sound of her head hitting the bed frame as she succumbed to a grand mal seizure. Later that same day in the hospital, she had a hard time recognizing her first visitor, her mother, but as her memory returned she also began to understand that the unusual “episodes” that she’d been having throughout her childhood and early adulthood were actually complex partial seizures.

Even as Lisa’s health history was starting to make sense, her seizures were spiraling out of control.  Not too long after her first seizure, Lisa had a grand mal seizure in her residence hall at college.  Unaware of her seizure history and uneducated about epilepsy, the residence hall personnel assumed that Lisa had used drugs.  Lisa was strapped to a metal chair and “questioned” in her unconscious state until her friend found her, rescued her, and brought her to medical care.

Shortly after her seizures returned, Lisa was re-started on anti-epileptic medication.  Although she had improving control of seizures, she noticed extreme fatigue and significant difficulty focusing on her school work.  Her art work suffered enough that she had to change majors.  Lisa became a graphic design major at UW-Stout and hoped that starting over at a new campus may give her a reprieve from epilepsy as well.

Lisa continued to have a combination of complex partial and intermittent grand mal seizures.  She has tried a variety of medication combinations, each with their own list of side effects and benefits.  In 2010, she had surgery to remove the portion of her left temporal lobe that was the focus of her seizures.  In Lisa’s words, “I haven’t had any big seizures since the surgery, but I have a ton more auras so I’m on more medication than before.  I don’t know which is worse.”

Despite her obstacles, Lisa is now working successfully part-time as a graphic design artist and has learned how to predict the patterns when her seizures are most likely to appear.  She has learned how to live with epilepsy, but still feels the stigma from coworkers, employers, and friends who don’t understand the disease.  Lisa recounts a time when she had a seizure in on the way to a choir concert while she and other choir members were crowded into a taxi.  After she woke up in the hospital from her grand mal seizure, none of the choir members treated her the same again.

Lisa is excited to join our efforts to raise awareness and decrease the stigma associated with epilepsy. Even our friend in the coffee shop was searching to understand how his misconceptions could align with the normal-appearing women sitting 2 feet from his table.  The more we talk, the more we understand.  Please pass it on.

 

 

My Story

My son’s birthday.

Christmas Day.

My tenth anniversary.

The Fourth of July.

Last Wednesday.

Today.

These are some of the recent days in my life that have been interrupted by seizures.

In many ways, the story of my Epilepsy is a story of disguise.

Different people can get Epilepsy in different ways.  Soldiers can have Epilepsy as a result of a traumatic brain injury sustained on the battlefield.  Some children may inherit Epilepsy as a part of a genetic syndrome that causes seizures.  My Epilepsy was caused by a prolonged seizure associated with fever when I had a virulent case of influenza at 16 months of age.  My first seizure, which lasted over 30 minutes, left a scar deep in my brain that served as a starting point for my future seizures.  The complex partial seizures, or seizures that only involve part of my brain, that I have had since adolescence frequently sneak up and dance around the edges of my consciousness, stealing slivers of my alertness just enough to leave me tired and spent after 15 – 30 seconds of involuntary swallowing and clenching of my left hand.  And although the partial seizures are subtle enough that only those closest to me would know something was amiss, they leave me feeling as if I have been battered, bruised, and in a fog for the rest of the day.

I have learned to hide my symptoms as much as possible.  In a world where there are still many misconceptions about seizures and Epilepsy, I find others squirming uncomfortably when I confess that I continue to have uncontrolled seizures. I notice colleagues changing the subject quickly when I mention Epilepsy.  Anytime I feel the characteristic aura of a looming seizure, I search for a safe place to sit and hide in case the simple seizure generalizes into something more.

I know I am one of the lucky ones.  After my first prolonged seizure as an infant, Epilepsy disappeared from my life for over a decade.  I had twelve years where the monster within my overexcitable brain hibernated and I was able to grow, develop, and learn normally.  My brain formed new connections around the area that was damaged after the first seizure.  The hormonal surges of puberty woke the sleeping monster deep within my temporal lobe and suddenly paroxysms of pulsing heat, confusion, headache, and barely perceptible movements of my mouth and face were overwhelming me ten to twelve times a day.  Epilepsy was awake and it was present to stay.

Since my official diagnosis of temporal lobe epilepsy at age 18, I have tried over fifteen medications and medication combinations for treatment of my seizures.  In 2003, during the middle of my pediatric residency training, I had a temporal lobectomy to remove the area of my brain that had been damaged during the seizure during infancy and the surrounding areas.  I was desperate for a cure for my seizures and prayed that one day I could continue my medical training and practice unencumbered with seizures and the mind-numbing effects of medications.

The surgery was successful without complications.  Five months later, the seizures were back.

But despite the fact that others can’t see outward evidence of my Epilepsy, it is my constant companion. Frequent auras remind me that the threat of having a seizure is ever-present.  Medication-induced fatigue tugs at me like an anchor, threatening to pull me out to a somnolent sea filled with waves of persistent tiredness that I fight to overcome every afternoon with all my strength.  At times, I feel as if I am a lone surfer in a tsunami of medication side effects, riding the sickening larger waves of dizziness, confusion, poor appetite, and headaches.  To moderate the side effects of the medication, I closely monitor my sleep, activities, and time that I take my anti-epileptic medications every day.  I live in constant fear that the slightest alteration in my routine will cause me to lose grip on my fragile lifeboat and drown in the angry sea.

When I was diagnosed with Epilepsy, I made a resolution to myself that seizures would never define me.  Medications will never rule me.  And despite the pulling at my anxiousness and self-conscious, Epilepsy would never dictate my choices in life. My husband and I have been blessed with three fantastic children (and three tumultuous pregnancies with several grand mal seizures) I have a busy pediatric practice and am able to do almost everything I dreamed of despite Epilepsy.  It’s time to lift the veil and step out of the shadows.  It’s time to share my story and the story of others so we can raise awareness and give others hope.

The more we talk, the more we understand.

Please pass it on.