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.”

wife-and-no-skull

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.”