A little bit about Amy
For over 25 years, I have been a special education teacher. I grew up with epilepsy, and I experience anywhere from three seizures a day to two a week. Having seizures impacted my mental health and academics. I am a Christian, and God gave me comfort during difficult days and when I went through depression. I love to bake and cook, write, and read nonfiction books.
Amy’s journey with epilepsy
When I was 11 months old, I had a convulsive seizure as a result of a high fever. My convulsion for over an hour. Not long after I had a convulsion, I was diagnosed with epilepsy.
I grew up in the 70’s and 80’s when epilepsy was not so well known, and the doctors didn’t know much about treatments aside from medications and the ketogenic diet. School was stressful to me. I struggled academically, mainly with reading comprehension. By the time I got to college, I was better at comprehending, but my biggest struggle continued to be staying awake in school. After my seizures, I felt tired.
I took lots of medications, some of which had severe side effects. I still tried to pursue things I enjoyed despite it. I played on a school softball team, I played in the band, and I formed friendships with my peers. In my teen years, it was hard for me to accept that I couldn’t drive a car. I didn’t have my independence. However, playing the saxophone in the school band was a big motivator for me. I enjoyed the friendships that I had with other band members, and I loved playing a musical instrument.
I have had brain surgery, and I am doing well. I can drive, I work full-time, and live independently.
Read more about drug resistant epilepsy
Experience with epileptologists
Where I grew up, there were very few neurologists. My pediatrician treated my seizures from my infancy through the first grade. Starting in my second grade year, my parents took me to a neurologist at the Epilepsy Foundation of Michigan. It didn’t work as well for me, as her approach was just medication, and the three medications I was prescribed were not controlling my seizures. When I was in junior high school, my parents took me to another neurologist, and he gave me good care. When I was a junior in college, my neurologist referred me to Cleveland Clinic where I later underwent brain surgery.
Read more: Bree’s experience with brain surgery.
Learn more about Amy’s book
My book is entitled, ‘In My Right Mind: My Life with Epilepsy’. At the start, I created a good manuscript, which I sent to Christian Faith Publishing. They reviewed it and then let me know that they would accept it. My book was published in 2021 and is now available at Barnes & Noble, Books a Million, Amazon and can be ordered at local bookstores. People from around the world can order my book.
Message to others living with epilepsy
Never give up hope. Search for more than one neurologist, so you can get more than one opinion about treatment options. Do your research - find out what treatments are available for your type of epilepsy in addition to seizure medication. For me, diet played a significant factor! Live a balanced life. Form friendships, set realistic goals, get plenty of sleep, don’t eat too many sweets, pursue things that interest you, and find ways to enjoy life.
Find a purpose in life. Epilepsy can be so draining and such a focus. I used to say “I have epilepsy, but epilepsy doesn’t have me”. Look beyond your ‘label’ - anyone can have a purpose in life!
