We exist to improve the lives
of everyone affected by epilepsy


Barbara Johnson

My name is Barbara. I was first diagnosed with epilepsy when I was 28 years old, but through careful detective work, I learned that I was born with epilepsy. A late start with head control, crawling, walking, etc... Then, when I started school, I was always behind the eight ball. Everybody was learning and forging ahead. I was having petit-mal seizures. Teachers, doctors, and my parents did not recognize the signs because in the 1960's, doctors were not educated as well as they are today. The doctors told my parents that I would outgrow epilepsy. The teachers reported that I was just daydreaming or not paying attention. I was constantly humiliated at school and unfortunately, my parents believed what they heard. My mother dealt with this by yelling and screaming at me, humiliating me even more, and my father just told me " You could do better." So, I just suffered alone. I was constantly picked on, called the cootie girl, and went through the Forest Gump treatment on the school bus.

I had difficulty in college and was stuck. Fortunately, I had a wonderful advisor and he knew something was up and encouraged me to work with students with special needs. I turned out to be a great teacher and my kids did wonderfully. I stayed at my first job for 9years, until I was forced to resign.

In May of 1988, when I had my first grand-mal seizure. It took several medications, endless EEG's. MRI's, Ct.-Scans, and a super neurologist to get me to where I am today. Talk about a life experience.
I am a retired special education teacher, have my M.Ed., and am an author of one book. I am working on book #2, and will have that published by the end of the year(with any hope).

We need to educate people about epilepsy and advocate for one another. When I tell people that I have epilepsy, they look at me like I have the plague. Epilepsy is a condition, one that can be overcome. People don't get it. It's a shame, but there you have it.

Barbara Johnson
Add your story

There are no comments yet. Be the first to comment...

Question about your epilepsy?

Your question will be sent to our helpline advisors.

Have a comment about this page?

All comments are reviewed by a moderator before publishing. Comments will be edited or deleted if they are offensive, libellous, slanderous, abusive, commercial or irrelevant.

We ask for your email when you make a comment through this website. This means that we can let you know directly that we have replied to you. By making a comment through the website, you allow us to use the comment in our publicity without using your name. If we would like to use your name, we will email you to get your permission.

This question is for testing whether you are a human visitor and to prevent automated spam submissions.
16 + 2 =
Solve this simple math problem and enter the result. E.g. for 1+3, enter 4.

e-action newsletter

Subscribe to our e-action newsletter and stay informed

Subscribe to e-action newsletter feed