Strength in Motion: Ashley Calvento's Journey with Epilepsy

Meet Ashley Calvento, a certified personal trainer and assisted stretching and flexibility coach whose life took a turn when she was diagnosed with epilepsy in 2019. Despite the challenges, Ashley has transformed her ordeal into a source of strength and inspiration, not only for herself but for others living with epilepsy. This is her story of perseverance, adjustment, and hope.

My name is Ashley Calvento, and I am 25 years old. I am passionate about working out and being in nature, a love that has driven my career as a Certified Personal Trainer and a Certified Assisted Stretching and Flexibility Coach since 2018. Losing 60 pounds in 2017 was a life-changing experience that deeply integrated fitness into my life.

I experienced my first focal seizure in 2017. It was sudden, marked by déjà vu, unusual tastes and smells, and a strange feeling that lasted about 30 seconds. At first, I mistook these for anxiety. It wasn’t until August 2019, when I was in the hospital after passing out from a focal seizure, that I had a significant Grand Mal seizure. Following this episode in the hospital, I don’t recall the subsequent MRI or EEG. The next day, my body was wracked with pain, especially my muscles and head. Being in the hospital allowed for a quick diagnosis, and I learned that all those strange feelings were, in fact, seizures.

After my diagnosis, one of the immediate challenges was losing my driver's license, a significant hurdle as a personal trainer reliant on Uber or Lyft for transport. I was fortunate to work at a gym where I could schedule clients consecutively, reducing the need for constant commuting, but sometimes there were no cabs available, and I had to wait a lot. Medication side effects were another struggle; initially prescribed Keppra, I faced severe side effects at 1000mg daily, though these have lessened with a reduced dosage and additional medications.

The uncertainty of when a seizure might strike contributed to ongoing anxiety, as did mourning the loss of my prior healthy self. My daily life transformed post-diagnosis, particularly after my Grand Mal seizure when my focal seizures intensified, often triggered by hormonal fluctuations. These episodes were embarrassing at the time, as they started to happen more frequently and at my workplace too. But I've come to accept that they were beyond my control and just another of life's challenges. Epilepsy brought many changes to my day-to-day life, like stopping swimming, which I absolutely loved. And there were certain things which I could no longer do alone, just in case I were to have a seizure.

Today, I manage my condition with medication, regular workouts, and mental exercises like reading and puzzles. I’m proud to say I'll be five years Grand Mal seizure-free this November. However, managing epilepsy is an ongoing process, marked by setbacks like the two focal seizures I experienced last October due to a medication error. Despite this, I remain focal seizure-free six months later. I wish more people understood you can live a normal life with epilepsy. I am back to driving and doing many different things that I couldn’t have done when I was first diagnosed. After you find a way to manage your seizures, you can live a normal life. You still deal with side effects, take medication every day, and some lingering anxiety thinking about seizures coming back. You still have epilepsy, but epilepsy doesn’t have you!

My family has been my pillar of strength throughout this journey, particularly my mom, who witnessed one of my most severe seizures on the morning of my 21st birthday and was my hero that day. Seizures can be so scary for those around you, and the people that are there for us are also very strong. Connecting with the Epilepsy Foundation has also been a source of great support and community, allowing me to participate in activities like the annual Epilepsy Walks, which are fantastic opportunities for awareness and unity.

My hopes and dreams for the future are to stay seizure-free and help those newly diagnosed. It’s so hard to go through it alone and not knowing anyone with epilepsy. Nobody can really relate to you, they can try, but they don’t truly understand. I love being there for anyone with epilepsy and sharing different stories. The advice I’d give to someone who is newly diagnosed is to feel your emotions. I tried to act like it would just go away and was in denial. Try to understand that it won’t go away, but that doesn’t mean your life is over! Feel those emotions, and just know, you’re stronger than you think you are.

Getting diagnosed with epilepsy is a life-changing event, and I am so grateful for all the epilepsy communities and advocates out there. It needs more awareness and funding altogether. Thank you for reading my story!

Thank you for reading Ashley's inspiring journey. At India Goes Purple, we believe in empowering individuals like Ashley to share their stories, spreading hope and understanding about living with epilepsy. If Ashley’s story resonates with you, or if you know someone who is navigating similar challenges, we encourage you to connect with our community.

Join us at India Goes Purple to help increase epilepsy awareness, support ongoing education, and advocate for those affected. Participate in our events, engage in our initiatives, and contribute to our mission to ensure no one faces epilepsy alone. Together, we can create a supportive network that empowers every individual affected by epilepsy.