Twenty years ago, on April 21, 1998, my world as I knew it changed. With no warning, my 9-month-old daughter had 8 seizures that day. I had never seen a seizure before that, and I knew virtually nothing about the medical world. I knew nothing about epilepsy. To honor what these last twenty years have taught me, I decided to share twenty things I have learned over the years.

  1. No question is a bad question. Epilepsy is so complex. If you aren’t sure about something, ask the doctor. The worst thing he can say is that it is irrelevant. Many times, I have asked about a question, thinking it is insignificant, and it triggers the doctor to elaborate in more depth over whatever it is we are discussing at the moment.
  2. Epilepsy/seizures are much more common than you realize. Ninety percent of the time the subject comes up, whomever I am with knows someone with some sort of experience on the subject.
  3. Family and friends that jump in and help whenever the going gets rough are worth leaning on. It’s often hard to let go of pride, but people that can help have a need of their own to fill. The break they can give you can be enough for you to reset, and find more strength to go on with your days.
  4. Knowing “why” is not always important. In a world where we have become accustomed to getting answers right away (thank you, Google), it is hard to accept that sometimes there is no answer to be found.
  5. Every medicine has side effects; just because a medicine has a side effect, it doesn’t mean you will experience it.
  6. When you think you’ve got it worse than anyone else, it’s time to get out in the world, and meet more people. There is someone who has things a little rougher than you.
  7. Even the best insurance coverage doesn’t cover everything.
  8. Being your child’s advocate is a big responsibility. It is empowering some days, and downright terrifying other days.
  9. Prayer, yoga, and invigorating exercise (like a spin class) can clear your mind, and help you make difficult decisions with more clarity and confidence.
  10. A glass of wine with friends can create a release of stress and is often just enough of a break to face reality again the next day.
  11. Neurologists have spent years in school studying and learning all about the brain. The brain is so complex, that they rarely can give a simple yes or no answer. Don’t be surprised if each neurologist you ask the same question to gives you a bit of a different answer from the last one.
  12. No two people with epilepsy have the same exact type of seizures. No anti-seizure medications work the same for each person.
  13. Joining a support group can be the beginning of many new friendships. Knowing other people that live many of the same experiences that you live is… I am not sure I have the words for it. You feel an immediate connection and share a bond with perfect strangers almost immediately. Being with a group of people that won’t overreact or under react to a seizure is invaluable. I strongly encourage anyone living with epilepsy, whether it’s you or a loved one, to join a support group near you. You will give others peace of mind, and they will give it to you. The rewards are endless.
  14. Life is unpredictable. Make plans, but be flexible. Your day, your week, or your year may not turn out the way you plan. Even if it’s different, you will create memories. Some won’t be great, but some will turn out to be a blessing.
  15. Don’t take good days for granted. Appreciate all the small things.
  16. Trust your instinct. If you have an opinion about your child’s health or education, talk with your doctors or teachers about it. They often have solutions to problems you might see before they see them.
  17. Working with people is much more productive than trying to prove to others that you know the right way. Listening with open ears while sharing your own opinions and ideas will help reach goals much faster than merely shutting others down.
  18. Finding a seizure medicine that works is wonderful, but rarely is it a permanent fix. Often times, it will only work for a while, or in conjunction with another one. It’s a temporary solution that will most likely need an adjustment sometime down the line.
  19. Treatment options have improved greatly since 1998. As many more choices as we have these days, there is still no simple or steadfast solution.
  20. I can answer many, many questions about epilepsy for anyone that is new to it, but I still hear new problems, new diagnoses, new terminology, and of new treatments; which is why no question is ever a bad question.

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