My name is Monica Pietramala. I am 35 years old and have been living with epilepsy all my life.
When I was 5 years old in grade 1, I had my first seizure in front of all the kids at school and the teacher. They did not know what to do - they just stood there and watched as a 5-year-old twitched her arms, and on the ground having a seizure.
The teacher called my parents and the ambulance and they took me to the hospital to get checked. After the doctor came to see me, he told my mom and dad the results that I have EPILEPSY. My parents were in shock and scared. Then they told me the news and I didn't understand because I was still very young.
After elementary school I went to high school. This is where things went downhill for me with my seizures, and medications, surgeries, and so on. While in high school, my neurologist prescribed me lots of new medications, so I spent this period of time trying them slowly and going on and off different medications, trying to find something that worked for me. I would have seizure, clusters, black outs, drop attacks, and falling down while at school or with my friends and people would stare at me and wonder what is wrong with this person? I didn't have many friends in high school so I faced my epilepsy almost alone. I was in a Learning Assistance Class that helps people who have disabilities learn school subjects slowly and I had to take a year off from high school due to the disruption caused by my epilepsy.
In high school I also had two surgeries to see if it could help slow down some of my seizures. The first one, called the Left Temporal Lobe I had done in 1997. This surgery didn't help stop my seizures. The second surgery, the Vagus Nerve Stimulator – was in 1999. It’s a device that is implanted to send mild, electrical energy to the brain via the vagus nerve, like a pacemaker for the brain, to prevent seizures. It also didn’t work. Now, 17 years later, it’s still inside me but turned off, in case I have to try it again, I can avoid another surgery.
After high school I went to college at Vancouver Community College to upgrade my classes from high school. While in college, in 2001, I had a third surgery, the Corpus Callosotomy surgery. This helped reduce my seizures a bit. I still have seizures where I black out and don't know where I am going so I have to be very careful.
After college, I wanted to find a career or job, so I and made a resume, put it online and sent it to some opportunities that interested me and also sent it out by hand and waited. Every time I sent out a resume and I didn't get a response back, it did not stop me from keeping going. Over three to four years I sent out over 200-250 resumes without getting many responses. If I did, they would be by phone interview or interview in person, but I didn't get the job and I think it’s because of my disability. I kept sending my resume out until I got a hired. My disability does not stop me from doing what I want do in life today! I got two jobs out of so many interviews and they were at Safeway and Tim Horton’s. I was in for both. They asked me if I could work long hours, and if I could can do baking. I said yes to everything even cooking. But once I told them that I had epilepsy, they started to talk and then came to me and let me go - their excuses were that, they have to find someone with longer hours, and that can cook. When they said those things to me I thought - “I know what you are talking about” - and left and started crying. It was so hard to find a job that would accept me for who I am and for what I have.
For the past 11 years I have been working at McDonald's they have accepted me and taken me in as one of their own. We have had our ups and downs in the past 11 years but I still love them for how much heart they have for people with disabilities. I love working there because of the customers and the people I work with; everyone is so kind to each other.
Since being diagnosed with epilepsy at five years old, I have been on 30-40 medications and none have helped me or have helped slow down my seizures. When one didn't work I got off it and tried a new one. I’m still trying different new medications today, and only one or two have helped slow -down my seizures.
In 2014 I saw an ad about Empatica Embrace Watch. It is a watch that helps detects when seizures are coming on. I was so excited I applied for it right away. I had to wait over two years to get it because so many people from around the world with epilepsy had also applied for it. [Note: the Epilepsy Foundation ceased accepting applications for the Embrace watch on March 27, 2017. It was a pilot project by the manufacturer. The watches are still available for purchase. www.empatica.com.]
In November 2016 I received the watch and I am so happy I got it. The watch warns me when I am having a seizure and also calls my family to tell them that I am having a seizure and tells them where I am.
Today I am 35 years old, have a great job at McDonald's as a cashier. I have the best family anyone can ever ask for and a boyfriend who cares and helps me when I have seizures. I have tons and tons of family members who also care and best friends that I love and care deeply about.
I still have epilepsy, am on five medications morning and night, and continue to have three different kinds of seizures, but none of this stops me from doing what I want to do and going where I want to go in life today.