I had my first seizure at age 10. At that time, the doctors didn’t think it was epilepsy; I had the flu, and they felt the seizure was due to the illness and my fever.
Two years later when I was 12, I had another seizure. The first neurologist I saw ordered a battery of tests. They did everything from CAT scans to EEGs trying to rule out a brain tumor, brain malformation, cysts and more, and found no physical reason why I was having the seizures. My family and I were all relieved, but many questions remained. It was still a mystery why this was happening to me.
Finally, I was diagnosed with epilepsy. It was a really scary time as a child, because one day I’m just a normal kid doing normal things, and all of a sudden my world is tossed upside down and there is this big, scary diagnosis, and no one could tell us why I had developed this disease.
The hits keep coming
Despite feeling scared, in hindsight, I really had no idea how much of an impact epilepsy was going to have on my life. There was now a whole host of things I could no longer do. I could no longer go to sleepovers, because sleep deprivation is a seizure trigger and my sleep pattern needed to remain consistent – and we all know that is a no-go at sleepovers.
That wasn’t all. I could no longer ride carnival rides or rollercoasters for fear the stress on my brain could trigger a seizure. I could no longer watch movies or play with flashing lights, as strobe lights can be triggers. I couldn’t even swim for a while, especially while undergoing testing for the cause of my epilepsy, for fear I might have a seizure in the pool and drown. It really changed my life as a child, and throughout my years as I was growing up. It was a hard pill to swallow at times.
Luckily, my mom and dad were my rocks. They were, and still are, true advocates for my health and always made sure I took care of myself. I am so grateful that no matter what happened or how the outside world reacted to my epilepsy, my parents were always there for me. They helped me learn to take care of myself by taking my medicine twice a day, getting enough sleep, eating well and doing the best I could.
Jessica and her parents
At the time I was diagnosed with epilepsy, there was not nearly as much support for people living with the disease and their caregivers as there is today. One thing that was always somewhat embarrassing and hard for me to do was to inform my teachers that I had epilepsy. It always makes people uncomfortable when you tell them; they do not really know how to react, or they will give a nervous giggle or an uncomfortable squirm, crack a joke about it or, in the best-case scenario, ask what to do if I have a seizure. It always just made me feel like a weirdo being “that kid” in the teacher’s class with a “problem,” and I had a hard time initiating that discussion.
My mom always kept at me, though. She did her part in talking to the school nurse, but I was in charge of discussing it with my teachers. She always reminded me how important it was for me to be strong and have confidence to talk to my teachers, because Mom would not be there to help at school if something happened to me. I’m glad that in today’s world, there are robust epilepsy plans available that parents can fill out with details of every aspect of first aid, medication, who to call … everything in the event a seizure occurs in a classroom or elsewhere.
An advocate is born
In 2016, I was working at a store, training to be an assistant manager. My manager at the time approached me about working an overnight shift. Since I needed to keep my sleep pattern consistent to avoid triggering a seizure, I referred to a letter I had submitted from my neurologist stating my restrictions and accommodation needs, including no overnight shifts.
My manager was upset, and told me if I could not do overnights, I would never become a store manager because that was a requirement. I remember just being in shock. Here I was, a 21-year-old go-getter with dreams of furthering my career, only to have my store manager tell me it was all for nothing.
But I did not let his incorrect statement kill my fire. I moved to Chicago, became a store manager, and now work at the Walgreens corporate office. I always think what could have been, had I just taken hisword for it and given up on my future. That’s one reason I am so passionate about advocacy – I don’t ever want that to happen to someone else.
My advocacy work took on a new spark in late 2018, after having a conversation with a former Walgreens executive about our stores carrying over-the-counter CBD-oil-based products. I mentioned my interest in these products as they were often discussed in the epilepsy community, and we got to talking about it. He asked me what he should do if someone ever had a seizure near him. I was surprised, as he was a trained pharmacist – in my naïve bubble, I assumed that pharmacists somehow already knew these things.
I realized that if he didn’t know what to do, a lot of pharmacists and other Walgreens team members probably don’t know what to do in the event of a seizure either. The more time I spent researching and speaking with leaders at Walgreens, as well as at the Epilepsy Foundation of America, I realized there is a major knowledge gap that can and should be filled.
I wasn’t sure how people were going to react when I started reaching out to them to discuss epilepsy and epilepsy patients here at Walgreens. But at every turn, the epilepsy conversation was welcomed and got people excited. I found out that more than 1 million patients with epilepsy use our pharmacies, and sharing this with colleagues has motivated many parts of the business to take into consideration how various decisions will impact people living with the condition.
Finding my tribe
I met the Chair of our Disability & Inclusion Network (DIN) business resource group, Mike Cohen, through a friend. He is one of the nicest and most caring people I have ever met. DIN took me in with open arms and helped launch my platform for epilepsy advocacy. In November 2019, we worked together to engage team members at the corporate office during National Epilepsy Awareness Month, and this February we hosted an epilepsy discussion panel featuring Walgreens field team members sharing their stories for International Epilepsy Day.
Through my advocacy efforts, I’ve spoken with many team members who have shared their struggles and experiences with their epilepsy at work and outside of work. They’ve told me how much they appreciate my bravery and perseverance to continue breaking down the stigma and spreading epilepsy education. People from across the company are now aware that they can come to me and ask questions about epilepsy, and have confidence that if I can’t answer it for them, I am able to connect them with people who can.
I want people to know that even though epilepsy is a disease, it does not define or limit a person and their potential. My seizure activity has always occurred in the left side of the brain, and typically ends up overtaking the entire thing causing a tonic-clonic (formerly grand mal) seizure. I am not strong in math, logic or science, nor am I good at data analytics. But what I lack in “left brain” skills I make up for with my strong communication and interpersonal skills, creativity, out-of-the-box thinking and change management leadership. Everyone with epilepsy has skills and abilities to bring to the table that contribute to team success.
I’m proud of the impact I’ve been able to make so far, and feel energized to do more. Epilepsy is a disease that is so misunderstood and unfunded, and it takes advocates like myself and others to be the spark to create a wave of change.
Jessica Chappell works as a business analyst, Pharmacy and Retail Process Optimization at Walgreens.
How you can help
The Epilepsy Foundation of America (EFOA) is committed to ensuring that people know proper seizure first aid, so they have created a free, virtual 90-minute webinar that teaches participants to recognize different kinds of seizures and properly administer basic first aid to make sure the person having the seizure is safe from harm. And in honor of Epilepsy Awareness Month, EFOA has a goal of getting 2,020 people certified in the month of November. To help them achieve this goal, go to Epilepsy.com/FirstAid to sign up.
For tips on what to do (and what not to do) when someone is having a seizure, click here.