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.

brain-cake

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

brent-julie-dog-day

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

out-of-the-darkness

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/