Lisa, Bear, and a lifetime of miracles

Lisa was accustomed to giving birth to big babies.

Her first child was a robust 9# 5 oz at the time of delivery.  Her second child was a strapping 11# 8 oz by the time she met the world.  But when her third child, Bear, was born, he weighed 12# 11 ounces just prior to his descent down the birth canal.  Because Bear was such a big baby, a relatively common but potentially dangerous complication occured during his delivery that would affect his life forever.  His fleshy shoulder became lodged against his mother’s pelvic bone.  Although Bear’s infant circulation separated from his mother’s as the birthing process happened, his body could not get out to receive his first life-giving breaths.

When Lisa’s obstetrician determined that a vaginal delivery was not possible, the pair was rushed to Cesaerean section.  Within moments, Bear was extracted from his mother’s womb — limp, blue, and already showing evidence of seizure activity.  The neonatal team present in the delivery room performed CPR, administered medications, and resuscitated Bear for twenty minutes.  Lisa, a nurse in the neonatal intensive care unit herself, remembers that at one point the neonatalogist who was guiding Bear’s resuscitation consisdered “calling it,” and letting Bear slip away.  Yet, with the determination and strength that Bear would display throughout his life, the pediatrics team was able to regain a steady heart beat after 20 minutes of resuscitation.  This was the first of a lifetime of miracles.

Although Bear was safely outside of his mother, his neurologic prognosis was grim.  After his birth, Bear was placed in a drug-induced coma to quell further seizures.  As the medications were lifted, he was noted to have low muscle tone, decreased reflexes, and absence of a suck/swallow reflex.  A tube was placed in his stomach to provide nutrition and later he had a more permanent gastrostomy tube placed.  Bear was hospitalized for the first six weeks of his life.  He left with a diagnosis of “severe hypoxic ischemic encephalopathy” related to birth trauma and a future that was uncertain.

“Bear became everyone’s baby,” Lisa remembers.  Her father, a surgeon, and her mother, a nurse, babysat frequently and helped care for him when needed.  Other family members and friends helped pitch in to give rides to the doctor or hospital if needed.  Everyone cheered when Bear met each of his developmental milestones — although later than typically developing children — one by one.

When Bear was three, he had his first generalized seizure.  Because the seizure was prolonged, Bear had an evaluation for infection in the emergency room after the seizure.  He was not officially diagnosed with epilepsy, however, until after he had another generalized seizure approximately a year later.  Bear was started on Tegretol for control of his seizures.

Soon after Bear’s official diagnosis of epilepsy, he started participating in school.  The aide that was assigned to work one-on-one with him noted other subtle seizure activity throughout the day.  Repetitive chewing on a sleeve, staring off into space, and smacking of lips were determined to be seizures.  Keppra was added and Bear’s seizure activity decreased.

Since Bear’s diagnosis with epilepsy, Lisa has learned to identify the triggers for his seizures.  She’s recognized that sickness is a trigger, fatigue is a trigger, and abrupt changes in schedule are a trigger.  She also realizes that Bear is constantly at risk, since he attends schools where viral illnesses are a constant reality.  As a result, Lisa reports that she is “constantly checking on him” to make sure that Bear is OK and “someone is always with him.”  Lisa states that Bear was invited to some friends’ houses in the past for play dates after school.  Once she explained to the other parents Bear’s history of seizures, he wasn’t invited back.

 

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In many ways, Bear is the living example of a miracle.  He has gone from a small infant who almost didn’t survive neonatal resuscitation to a strapping young man who likes to bike, run, and play with his siblings.  He evolved from a baby without a suck/swallow reflex to a toddler with a G-tube to a boy who eats everything in sight.  Yet Bear is still susceptible to a multitude of seizures that can ruin a day, a week, a lifetime.  In so many ways, Bear is miraculous, yet a cure for seizures sometimes even alludes those who have obtained the unobtainable.

In Lisa’s words, “epilepsy is like an intruder in our house with a gun.  You never know when it’s going to go off, and you never know how it’s going to affect you.”

Please pass it on.

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Guest Post: A Wilderness for Aidan

Not long ago, I received an email from a father of a little boy with epilepsy that caught my eye:

 I just discovered your blog. As father of a young boy fighting devastating epilepsy and a brother of an adult sister who has spent her entire life fighting seizures, thank you. I would be interested in writing a blog about taking our son on his first backpacking trip in the Montana wilderness, in spite of his intractable seizure disorder.

I replied to Mr. Long’s email and very soon after received the most touching description of what it’s like to parent a child with epilepsy that I’ve ever read.  I hope you will enjoy the following post as much as I did.

A Wilderness for Aidan

By Ben Long

Growing up in Montana should mean growing up out of doors. Instead, too much of our young son’s life has been spent inside, looking out the sealed windows of hospitals.

In 2004, my wife, Karen, and I had a boy, our first child. We took him camping trip at four months. A challenge in those days was changing a diaper by flashlight in a tent when it was below freezing.

Aidan grew up smart and curious and fun loving, with no sign of health problems beyond the hay fever he inherited from me.  We camped, hiked, skied and canoed because, in our family, being outdoors is what we do.

I particularly love hiking overnight into the backcountry. When I was growing up, my dad took me backpacking every summer. Even before Aidan was born I started planning his first overnight hike.

Stanton Evening reflection low rez

But those plans were shattered on Oct. 28, 2008, when Aidan was 4. Aidan tipped off a kitchen stool and slammed into the floor, his lips blue and a trickle of blood from the corner of his mouth. I thought he had choked on something and called 911, but the ER doctor said Aidan had suffered a seizure.

It was the first of many seizures, and many hospitalizations. There are no pediatric neurologists, let alone epileptologists, in Montana. So in search of answers we traveled to Seattle, then to specialists at Denver, Cleveland and Chicago.

Aidan’s epilepsy defies labels as it defies treatments. We’ve failed a dozen medications, have spent three years on the ketogenic diet, and invested in several nontraditional treatments. The disorder seems particularly cruel in that Aidan thrived so in his early years. His smart little brain seems at war with itself.

Aidan has several forms of seizures. They come at different times, different severities, seemingly without pattern.  Aidan is also prone to bouts of ‘non-convulsive status epilepticus’ – which essentially means non-stop seizures that are invisible but render him immobile for days, even weeks at a time.

Because of these status events, Aidan has been life-flighted from our Montana town to urban hospitals five times between age 4 and 7. Aidan has spent month after month in intensive care units, scalp wired to EEG electrodes and receiving drugs and fluids intravenously through a PICC line in his armpit.

In one of the last extended hospital stays, the doctors tried to get control of the seizures by dropping Aidan into a medically induced coma. This went poorly. Aidan’s muscles shriveled before our eyes as he lay motionless day after day, fed through a tube up his nose, breathing with hose down his throat. Finally, when he had pneumonia in all four lobes of the lungs, the doctors called the brutal experiment to an end. Seizures, if anything, were worse than ever, as was our sense of helplessness.

The hospital sent us home with the phone number of the local hospice and a pamphlet on “letting go.”  We wheeled Aidan out of the hospital in a borrowed wheelchair, and took him home to learn to walk and talk again.

That was two years ago.

The seizures come in waves and have taken a tremendous toll on Aidan, yet he is still the same, remarkable child as a young boy as he was as a toddler. He still loves to listen to books and then act out the parts. He loves Legos, building castles and spaceships. But the seizures and drugs leave him exhausted, blunted, battered and frustrated.

We have lost a tremendous amount, but to me, the worst loss is the sparkle in Aidan’s eyes. That sparkle was once a part of every waking moment; now it’s only there on his better days.

One evening during one of Aidan’s better periods, Karen and I spoke of things we still wanted to do. I said I still wanted to take Aidan backpacking. She insisted we do so.

 KMN and Aidan Stanton Lake low rez

It was the shortest hike we’ve done, but also carefully planned. We wanted to get away into true wilderness – no cars, machines, cell phones — just a million acres of pristine nature. Yet we had to be cautious. If disaster struck, I wanted to be able to throw Aidan over my shoulder and carry him back to the truck.

We picked a lake two miles from the road in the Great Bear Wilderness. As it turned out, it was in the shadow of Great Northern Mountain, a peak Karen and I had climbed on our first hike together exactly 20 years before.

We pulled our gear out of storage, shook out the dust and stuffed our backpacks full.  The night before we departed, I lay awake wondering if the entire idea was a vain, dangerous mistake.

Would the hike stress Aidan’s physiology?  Would excitement or lack of sleep trigger another bout of status?

In the morning, we decided to go for it. We loaded our packs (Aidan carrying his lunch, some water and his favorite stuffed monkey) and hiked into the forest.

The packs were heavy and my muscles unused to carrying a load up a mountain trail. But the lake was beautiful and we enjoyed it in solitude, loafing, fishing and watching the shadows give shape and form to Great Northern.

“Dad?” Aidan asked as I pitched the tent, “can I watch Netflix on the iPad?”

“Sorry buddy. I didn’t pack it and it wouldn’t work here anyway.”

Instead, we piled up rocks on shore and caught and released little trout. The evening was long and mild. In the morning, after sleeping snuggled in the little pup tent, Aidan danced the happy camper dance around the campsite.

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Part of what I like about backpacking is the physical challenge. It teaches one to endure burden, to walk through pain. The strain can be great, but at the end of the trail you shed the heavy pack and feel lighter than air as you enjoy your destination.

Epilepsy, for our family, isn’t like that.  We are learning to bear pain, to carry a burden of broken dreams. But the destination is so far beyond our reach.  The best we can do is reach out to family and friends to share the burden, share the rugged path Aidan is on.

We still believe in a day when children like Aidan and families like ours can leave this burden behind and more fully enjoy the beauty of the world around us.

That’s why we support Citizens United for Research in Epilepsy and the Doose Syndrome Epilepsy Alliance.  We hope you will too.

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morning camp dance

Please pass it on.

Carrie and the Gift of Perspective

If you believed the stereotypes, Carrie would be far from what you would expect in a typical patient with epilepsy. She is a successful professional who works as an associate director of an internship program at DePaul University, a mother of a happy, healthy little girl, an activist who volunteers with political campaigns, and still someone who lives with intractable seizures.

“When I tell people I have epilepsy, it feels like they are seeing another side of me.”

But through Carrie’s successes, achievements, and major milestones met, the “side” of her that has been occupied by epilepsy remains ever-present.

Carrie’s seizures started when she was 11 years old. First they appeared as what her parents described as “staring spells” combined with an odd nervous sensation that led to a sense of drowsiness.  Concerned that she was having fits of anxiety, her parents brought her to a psychiatrist for evaluation.  After determining this was not simply a case of anxiety, eventually an EEG was performed and she was diagnosed with a “seizure disorder.”   Carrie was started on the first of a long series of antiepileptic medications to treat her seizures and within a couple of years, received the official diagnosis of epilepsy and told by various doctors “you might just grow out of this”.

Over the next 25 years, Carrie tried over ten antiepilepsy medications, all with a different kaliedescope of side-effects and temporary successes.  Although her seizures are so mild that no one can tell she’s having one except herself, when she was 25 years old, she had her first grand mal seizure and it seemed as if her whole life changed.  Carrie realized that her grand mal seizure occurred after a period of high stress and little sleep.

“After that point and until this day” Carrie said, “I never compromise on sleep.  When my daughter was born, my husband did all the night time feedings.  If I can’t fall asleep at night, I have to sleep later in the morning to make sure that I’ve slept a full 6 hours.”

“I know that if I were to have a grand mal seizure because I was sleep deprived and it was something I could have prevented, it would be devastating.”

When Carrie was 29 years old, she had a temporal lobectomy and dreamed that she would one day be free of medication and be free of seizures.  Several years after the surgery, she is on the same amount of medication that she was taking prior to the surgery, but the number of simple partial seizures she was having dramatically decreased from 10-12 each month to just  3 – 5 each year.  Carrie feels like this is some degree of success, even if it isn’t the ultimate goal of seizure freedom.  In the end, Carrie’s walk with epilepsy has given her a very positive perspective on life in general.

“Epilepsy has given me a stronger appreciation of life and has made me feel more empathetic for people with worse diseases.  When I find out that someone has something like multiple sclerosis, I know that it affects their entire life and their entire family just as epilepsy has affected mine.  My epilepsy could be a lot worse.  It’s not like I’m dealing with cancer.  I think I have a more grateful attitude as a result of managing this disease and the risks it presents.”

Carrie states that her experiences with seizures have also given her tremendous appreciation and gratitude for the health and happiness of her 3 and a half year-old daughter, Norah.  Although Carrie had to stay on her seizure medication throughout the pregnancy to reduce the risk of having a seizure and potentially harming the baby, Norah is active, intelligent, and perfect.  Norah has had three complex febrile seizures associated with high fevers and viral illnesses in her first few years, putting Carrie on “high alert” to watch her daughter for more seizures any time she is ill.  With her history and the recurrent febrile seizures, Carrie knows that her daughter is at increased risk of developing epilepsy in the future, but she prays that the stars will align on her side this time.

Perhaps most apparent and above all, epilepsy has bred resilience and strength in Carrie beyond all else.  When I asked her what message she’d like to convey to others touched by seizures, Carrie said, “Epilepsy is part of me, but not all of who I am.  I’m not going to let this stop me from doing what I want to do.”

When I hung up the phone after talking with Carrie, I realized that short of freedom from seizures, Carrie found what we all hope for.  The ability to own a disease that has potential to overtake us is invaluable.  Carrie’s positivity, gratitude, perspective, and fortitude were some of the keys to her success.

Again I remembered that the more we talk, the more we understand.

Please pass it on.

Norah and Carriie483498_10200210628094853_1712029223_a

Brent, a Notebook, and the Power of Family

I was supposed to meet Brent for lunch last week so he could share his story about living with epilepsy for the One in Twenty Six blog.  We were both looking forward to meeting at 1:00 in the afternoon.  Then, at 11:49, Brent sent me this email:

I have I Kristin I now no to that no now that no no hard not met need new

Confused, I sat at the spot where I was working at my kitchen table and wondered.  Brent was normally articulate and brief in his email exchanges.  Was this a new creative spam email or some type of virus?  Or was Brent playing a joke on me?  Worse yet, was something wrong?

I got my answer a few minutes later.  In an email that I later learned was written by a co-worker, Brent explained his previous scattered message:

I have to cancel our meeting today at 1pm – just had a seizure and am going home.

My heart sank.  I knew that Brent continued to struggle with partial seizures and grand mal seizures despite taking several different anti epilepsy medications.  He had had a grand mal seizure at his office, where he works in internet marketing at a telecommunications company.  Unfortunately, events like this were not unusual for him.

When Brent and I were finally able to meet this week, he brought two notebooks with him.  One notebook was filled with notes detailing his experiences with epilepsy, the other notebook was filled with lists and notes that Brent’s wife and family members used to help re-train his memory and teach him to speak again after his left temporal lobe surgery in 2009.  The second notebook sent a chill up my spine.  I could see Brent cringe and his eyes well with tears and he flipped through the pages filled with notes from a different era.

Words were written in big, block letters with just a trace of feminine curvature in crisp blue ink on page after page.  One of the early pages was titled “YOUR FAMILY –>”  and followed by a list of the family members and animals that lived in Brent’s home.  Another page was adorned with a life-sized sketch of a human hand and labels pointing to different parts of the hand.  Arrows pointed out “Knuckles.”  “Fingernail.”  “Palm.”  Another page of Brent’s notebook strayed from the business-like block letter approach and was decorated with a thick bubble-letter message from a devoted wife.  “Julie loves you.  Brent is awesome.”

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Brent showed me one of the last pages of his notebook with averted eyes and said, “you can read this.  I can’t read it or I’ll get upset.  It’s a promise I made to myself when I was in the hospital after my brain surgery.”

Touched that he would share this with me, I read a message written in shaky handwriting.

Brent, you’re f****ed up.  You’re sick now but you’re going to get better.  

One day soon you’re going to get out of this place and you’ll be able to ride a motorcycle again!!!

I looked at Brent after I finished reading and felt the disappointment brewing deep from within.

“This upsets me because I still haven’t fulfilled my promise,” he said.  “But I still hope I will some day.”  Because of his persistent seizures, Brent’s primary mode of transportation around town has been via bicycle or with his wife, parents or other family members who live nearby.  Brent is quick to point out that he is lucky to have parents, a sister, a wife, and friends who help him with transportation and help him when epilepsy strikes, but he longs for the day that independence will be his again.

When Brent describes his history with epilepsy, he always begins with the year before the seizures began.  “The period from 2006 – 2007 was the best time of my life,” he proclaims, as a smile dances across his lips and his eyes glaze over with pleasant memories.  “I married my wonderful wife, Julie, in 2006 and in 2007 and I won a national award for online journalism in the Outstanding Use of Digital Media.  In 2007, Julie and I bought a 1988 van and put a futon in the back and drove to Yellowstone National Park for our honeymoon.  We had a fantastic time.

“On New Year’s Eve 2007, Julie and I were in Florida and we were planning on going to the Outback Bowl the following day.  Out of the blue, I felt horrible — no, worse than horrible.  I sat with my head in my hands the whole time at the Outback Bowl because I felt so bad.”

Brent and Julie flew back to Wisconsin and later that week Brent saw his doctor and he was diagnosed with the “stomach flu.”  Several days later, Brent and Julie were at home when Julie heard a thump and found Brent splayed out on the floor having a tonic clonic seizure.  When Brent was taken to the hospital that night, he had recurrent generalized seizures with almost no break in between. A spinal tap confirmed the diagnosis of viral encephalitis.  “I felt like I was dying that night,”  he remembers.  Although the details of that long night are murky in Brent’s memory, he remembers waking up in between every seizure, looking his wife in the eyes and telling her that he was dying but he loved her.

Brent states that the infectious disease physician on call that evening told his wife that he had a 50% chance of living through the illness.

Despite the dire predictions, Brent was discharged from the hospital three days later.  On the way home from the hospital, Brent convinced his wife and his friend that he’d like to stop for food.  Not long after they sat down to enjoy some chicken pot pie (“which will forever be known in my family as seizure-pot-pie,” Brent states with a smirk) he succumbed to a seizure and was promptly brought back to the hospital.  And so began the litany of hospitalizations and emergency room visits, medication trials and switches, and a life pock-marked by epilepsy.

As a way to cope with uncertainty, Brent has developed a healthy sense of humor about epilepsy.  At the end of our time together, Brent listed his “best seizures” by finding something memorable in some of the most fearful moments of our lives:

  • “Once I had a grand mal seizure at a movie theater just before my wife and I were able to go to the movie.  We got our money back.  I thought that was pretty awesome.”
  • “I had a seizure at a furniture store and ended up buying the couch that I fell on.  As I woke up, the salesman was blessing me as if I had demons.”
  • “One time I had a generalized seizure at Brat Fest in Madison (a big festival where thousands of people come and eat bratwurst.)  My friends were with me and formed a protective circle around me so no one would see or could get near me and waited for the seizure to end.  I was pretty touched by that.”
  • “I had a seizure at PDQ once and someone stole my phone when I was unconscious.  That still makes me mad to this day.”

Through his frustration, Brent continues to find a positive spin on his life with epilepsy.  “It’s made Julie and I grow closer, it’s given me perspective about the things that really matter.  I don’t get worked up about the little things any more.  I  have tremendous support from my wife, my family, my employer, and friends.  I couldn’t have done this without them.”

Brent sent me one last email last night that I think sums his perspective up perfectly:

” I always want to tell all the others out there with epilepsy or any other challenges, as much as you think your future has failed it hasn’t. People will surprise you and I don’t think things happen randomly for a reason but I do believe things do happen for a reason.”

I believe Brent will keep his promise to himself and ride a motorcycle again some day.

All in good time.

Please pass it on.

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Brent’s co-workers made him a brain cake before his brain surgery

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Brent and Julie have established a dog wash and fundraiser for CURE called “Dog Days” that has raised over $8000 for epilepsy research!

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Brent’s first day walking around Madison after a long period of depression and despair after epilepsy surgery felt like he was “coming out of the darkness.”

Christine

I have known Christine for what feels like a long time.  Our children, who are now eight years old, used to attend preschool together.  I saw Christine at various birthday parties, classroom celebrations, and milestone events over the course of three years when my son and her daughter spent their days at the bright, angular school with halls filled with the music of children that buzzed with laughter and joy.

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Even though I’ve had countless conversations with Christine at parties and preschool events, it wasn’t until I posted the first entry to One In Twenty Six revealing “My Story” that I heard about her history of seizures.  Christine posted a comment on the blog and wrote, “. . .while I have not had a seizure in over 15 years, my middle-, high school, and early college years were plagued by them. Monitoring sleep, food intake, and stress levels are just second nature now, but auras are always scary reminders that there’s a sleeping electrical storm that could break at any time.”  Christine states that the week she saw the post, she was drawn to reading the blog because she recently had an interaction with her colleagues at the University of Wisconsin, where she teaches technical writing.

After hearing a colleague recount a story where he suddenly lost consciousness and fell off his bicycle, Christine suggested that he should be evaluated for possible seizures.  When the colleague scoffed, Christine pressed on, adding that she had an intimate knowledge of how unpredictable and variable seizures can be, since she had lived with epilepsy for many of her adolescent and adult years.

Christine shared her story with me while we had breakfast on a grey Monday morning that promised only more cold, slush, and snow. “After I told the group about my history of epilepsy, the room suddenly became silent,” Christine remembered, the irritation visible in the smoldering fire of her dilating pupil.  “No one knew what to say. The stigma associated with seizures is still very much there,” she said.  ” Something’s got to change.”

Christine’s journey with epilepsy began when she was an active middle school student at a parochial school in northern Michigan.  Never one to be idle, she was involved in a myriad activities and pushed her body to the limit.  Christine first noticed events where she felt an overwhelming sense of sleepiness that she couldn’t shake even if she was able to get adequate rest.  Then she started to notice paroxysms of involuntary movement of her right hand, evidenced by sudden streaks of irregular writing across her papers at school where her hand jerked out of voluntary control and was suddenly guided by the brewing electrical currents within.  Eventually, when Christine was working her hardest to help prepare for the middle school graduation ceremony, she succumbed to a grand mal seizure.  Her diagnosis of epilepsy ensued and she began treatment with Tegretol.

Christine reports that once she started and increased the dose of her antiepileptic medication, she went from being a straight-A student to “sleeping through a year of high school.”  She was no longer able to participate in a variety of activities because the medication side-effects were too great.  Her grades suffered significantly as well.

After muddling through a sleepy 18 months on Tegretol, Christine was switched to Depakote, which allowed for fewer side effects and better seizure control.  She noticed that she had to exercise almost all the time to avoid gaining weight while taking Depakote. Early in the initiation of Depakote therapy, Christine was warned by her physician that while she was on antiepileptic medication, the risks of potential birth defects would likely preclude her from ever having children.  Too young to worry about it too much at the time, Christine took her medication every morning with hope in her heart that her seizures would one day be a part of the past.

In some ways, Christine got her wish. When she went years without seizures or auras in college, she talked to her neurologist about weaning off Depakote.  She was able to become free of medications before she became pregnant and delivered her first child.  Emmy was perfect, with sandy blond hair, chocolate brown eyes and an expressive smile that could light up the darkest room.  Her daughter’s life seemed unmarred by her mother’s history of seizures.

Then when Emmy was three, Christine and Emmy were walking out of the library together one spring afternoon.  They were smiling at the warming sun and looking forward to the day they would enjoy together.  Suddenly, Emmy’s hand slipped out of Christine’s hand.  Christine turned around and found her daughter spread out, quaking, unconscious, and helpless on the sidewalk.  Knowing that she needed help, Christine had no choice but to leave her daughter alone for a moment while she ran inside to call for an ambulance.

Emmy’s seizure was not associated with a fever or an illness or any of the typical culprits that may lead to benign seizures in children.  In discussion with Emmy’s physicians about use of possible antiepileptic medications to prevent future seizures, Christine states that she was “appalled to find that many of medications that we use in children today are very same with the debilitating side effects that were used for me twenty years ago.”  Currently, Emmy is not on any medications and is doing well, but Christine reports she lives in fear of the day that things may change for both of them.

Christine describes her experience as having a “brush with epilepsy” and states that she has been fortunate to not have seizures and medications affect her everyday life.  Still, while the grey changed to silver outside on a Wisconsin Monday morning, I could see slivers of how a history of seizures and years of mind-numbing medication can haunt you like a ghost forever.  Christine admits that she still monitors her sleep and stress levels diligently.  While she used to be “on the path where she needed to be in control of everything,” now she has learned to let things slide.  She also admits that she dreads the hormonal changes in life more than most women.  Where puberty and menopause are headaches to some, they may mean resurgence of seizures to women like Christine and Emmy.

Christine looks forward to the day when she can talk about epilepsy in a room full of colleagues and not be met with awkward silence.  The more we talk, the more we understand.  Please pass it on.

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Photo source: http://the-second-half-of-my-life.com/2010/09/16/mothers-daughters-9/

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.