Living with epilepsy personally and professionally
by Cassie Corral
At the age of 9, my son was doing all the things doctors had questioned his ability to do – talking, jumping, climbing, eating – everything one would expect from a typically developing 9-year-old. The perinatal stroke he had experienced at birth gave reason for doctors to make uncertain predictions about an uncertain future, none of which seemed to be interfering in the full life of a Lego-loving, video game-playing, superhero-obsessed little boy.
The seizures he’d had his first week of life and the ensuing six months of anti-seizure medications were ancient history, with no subsequent seizure activity. So, when he collapsed and began seizing in a parking lot, seemingly out of nowhere on a normal Sunday morning, it came as a total shock to me and induced pure panic. The same seconds that dragged on for infinity during the active seizure suddenly seemed to move very quickly when we found ourselves in the back of an ambulance.
After an overnight hospital stay, EEG testing, and other neurological assessments, he was given a diagnosis of epilepsy and started on Keppra. This began a journey filled with fear and anxiety for both of us – marked with almost daily phone calls from a third grader terrified that another seizure could happen during his school day. It began a long process of medication changes, additional seizures, plenty more doctor appointments and EEG tests, and a roller coaster that many other parents of children with epilepsy know well, of seizure activity that was controlled/almost controlled/not well controlled. I have since, as both a parent and now with my role as a professional in the epilepsy community, come to realize that our situation, though frightening and difficult, was (and is) far more stable than the realities many other families live with, some of whom never attain seizure control or who grapple with many other accompanying challenges.
I have also come to realize just how critical a good support system is – something we are fortunate enough to have. It is because of this lived experience that I now, 7 years since my son’s diagnosis, am in a profession that I love, in which I find great meaning and purpose. From overseeing epilepsy support programs and educational offerings at the local level here in the Tampa Bay area, to now as a Community Engagement Manager on the national level for Epilepsy Alliance America (of which JoshProvides is a proud member organization!), my experience and perspective as someone with a loved one with epilepsy has propelled me to help others connect with those important avenues of support, education, and empowerment.
During my son’s time in NICU, he was visited by the hospital chaplain who left behind a card in his bed with a message about turning our faces towards hope. I am thankful for organizations like JoshProvides that offer tools and resources that make it easier for families living with an epilepsy diagnosis to hold on to hope and for the work that we do at Epilepsy Alliance America to amplify hope through the services and support offered by all of our member organizations across the country. If you are a person with epilepsy or a caregiver to a person with epilepsy and would like some additional support, we would love to invite you to join our virtual support group, launching in October. If you would like more information about this or any other resources available through Epilepsy Alliance America and its member organizations, I would love to connect with you.
Cassie Corral
cassie.corral@epilepsyallianceamerica.org
