Tuesday, November 19, 2013

Never Give Up

If we are demoralized, sad and only complain, we’ll not solve our problems. If we only pray for a solution, we’ll not solve our problems. We need to face them, to deal with them without violence, but with confidence - and never give up. If you adopt a non-violent approach, but are also hesitant within, you’ll not succeed. You have to have confidence and keep up your efforts - in other words, never give up. —Dalai Lama

   When I was hired as editor of Epilepsy Advocate magazine almost seven years ago I knew next to nothing about epilepsy. I did have a great interest in neurology, however. My mother had been diagnosed with dementia and, although it's a very different condition, I realized the mind's function was a complex mystery that I wanted to learn more about. Thanks to the honesty, courage and confidence of a group of people who live with epilepsy, I've learned a lot—not just about the inner-workings of the brain, but about the inner workings of the heart. I've learned what it means to never give up.
   Epilepsy is a neurological malfunction of electrical circuits in the brain. Seizures may be caused due to a congenital condition or for no reason at all. That's what makes it so scary. There's no one definitive cause, and there's no absolute cure. For these reasons, despite significant advances in treatment within the past thirty years, the stigma and misunderstanding of epilepsy still exists. (Read more all about seizures their effects here.)

  Although I no longer serve as editor of Epilepsy Advocate, earlier this month I was invited to attend an epilepsy conference with a number of my friends who I had come to know through the pages of that magazine. It was work, but for me it was also a wonderful reunion. 

   Over the years, many of these remarkable people graciously shared with me details of their seizure episodes and how those seizures effect their lives and the lives of the people they love. Some were misdiagnosed as children, accused of having seizures on purpose to get attention or thought to be "slow" or otherwise less than "normal." Some suffered from such severe and frequent seizures that they could not drive or work and became isolated. The stigma of the condition often leads to bullying, discrimination and some downright ugliness. Depression is a common co-existing condition for people with epilepsy for both emotional and biochemical reasons.
    Even after an accurate diagnosis is made, finding treatment to control seizures often means trying different antiseizure medications at various doses. If a person is experiencing multiple types of seizures that happen in more than one place in the brain, it can take years to get the right combination of meds. And sometimes the medication's side effects are as bad as or worse than the seizures. Surgery is sometimes an option when drugs fail to work. And surgery means have a part of your brain removed—scary to say the least.
    My friends have been through it all, but regardless of their individual experience, as they related their epilepsy stories and their latest accomplishments, a common theme came forth: My life is not what I once thought it would be, but it is good—or maybe even better than I imagined.
   Despite experiencing what most would consider a devastating set-back, they found the good in their situations and rewrote their own stories. In other words, they made a conscious decision to accept reality and then change what they could—their perspective. They kept going, sometimes changing their tact, but never giving up.
   One Advocate dreamed of going to law school. When the stress of her prelaw workload triggered her seizures, she had to rethink her dream. Now she's in graduate school and plans to work for a non-profit. She wants to use her knowledge and experience to help others. She has no regrets. She doesn't have time for regrets. Life is too precious.
   And there's the mom who's son has had seizures all his life. In the delivery room, the doctor told her he wouldn't survive. When he literally came back to life after his breathing stopped, she was told he wouldn't walk or talk. Today, that very talkative, active boy is fourteen and hasn't had a seizure in over a year. Going through the journey of finding a treatment that controlled his seizures was not the life any mother wants for her son, but this remarkable young man shares his story wherever he goes—and his peers see him as a hero.
   There's the minister who, at age 35, suffered from an out-of-the-blue case of encephalitis that almost took his life and left him with epilepsy. He had to relearn his children's names—and how to walk and how to read. He now teaches college and is the author of several popular books that focus on acceptance and gratitude.
   And there's the single mom of three whose first tonic clonic seizure almost ended her life. She's now back in school getting yet another degree and working as a life coach.
   Epilepsy doesn't define these people. They've found ways to go about their lives making the best of what has at times been a difficult—even life threatening—situation. They are also grateful for the good days—the days without seizures, the days when they can do remarkable things like drive a car to work or play with grandchildren or study for an exam—things they couldn't do when their seizures were not under control. (Click here if you'd like read more stories about these remarkable men and women.)
    I've learned so much from these Epilepsy Advocates. They have provided me with perspective and showed me that no matter what occurs there is a way to find the good. I hate that my friends have had to suffer and see their loved ones suffer. I hate that there is no cure. But I love these people for their bravery and their gentle yet fierce passion for helping others accept their own realities. These individuals are living examples of how facing one's problems can transform lives.