Diagnosed at a young age, Skye’s journey with epilepsy has been anything but easy. Throughout her life, she has repeatedly been told, “You can’t do that if you have seizures.” Rather than letting those words define her, Skye has used them as motivation to defy expectations, both others’ and her own, and to live life to the fullest. She continues forward by embracing an important truth: “Epilepsy is unpredictable. It can be exhausting. Living with epilepsy means I am always aware of my body, my limits, and the things that can affect me in ways other people don’t have to think about.”
Now 27, Skye has been seizure-free for three years. She relies on structure and consistency, prioritizing self-care and leaning on her incredible support system. Skye openly shares how epilepsy has shaped and continues to shape her life in real, tangible ways. There are daily realities she must think through more carefully, plan around, and at times even miss out on because of her diagnosis. Every aspect of her life requires added intention and precaution, including medication, diet, exercise, sleep, and support.
Skye has become diligent about self-care, following specific routines to protect and maintain her health. Even with the extra preparation her epilepsy requires, Skye emphasizes, “It does not erase my ability to experience life. It does not take away my joy, my curiosity (and there’s plenty of that), or my desire to live fully.”
Although life may look different for Skye, it has never stopped her from experiencing it to the fullest. Her support system continually thinks of creative ways to ensure her safety while still allowing her to participate fully in life. Her girlfriend has made and continues to make a wide range of handmade accommodations to give Skye the best possible chance to experience everyday activities safely. Some of the accommodations that have made a significant difference include homemade light-blocking eye masks, medication trackers, medical alert tags, and medical alert jewelry.
One of the greatest challenges Skye has overcome is learning not to be afraid to ask for help. Advocacy did not come easily to her and was one of the biggest challenges she had to face. Over time, she found strength in learning how to speak up for herself and to speak with confidence. This growth has transformed her life, impacting everything from everyday conversations to navigating doctors’ appointments.
Like many individuals living with epilepsy, Skye shares that some days are harder than others. Some days require extra caution, and some days she simply does not feel strong at all. “I feel like I am always missing a piece or a step behind,” she admitted, yet she chooses to show up anyway. “But for today, the day I represent 1 out of 26, I am choosing to show this side too, the side where I am still here, still growing, still showing up for my life in the ways I can. Epilepsy is part of my life. It is not the limit of it.”
Beyond managing epilepsy-related challenges, Skye has accomplished many personal life goals. She works in a role she loves and continues to nurture her passion for movement during her free time by attending a weekly tap class. She has established a full life with her family, moved into a new apartment, purchased a new car, and has been able to travel frequently. She intentionally seeks out experiences people do not always expect someone with epilepsy to pursue, including riding roller coasters, swimming, traveling the world, and building a family. Recently, she has even been able to attend shows and performances with lighting effects by using multiple accommodation tools. All of these accomplishments help her regulate both her body and her mind while also boosting her confidence in her ability to do typical and even new things while living with epilepsy.
“I have made an intentional effort to live,” Skye shares. Not because her seizures have disappeared, but because she has learned to live alongside them, to adapt, to listen, to push when she can, and to rest when she needs to.
Skye is also a passionate advocate for epilepsy awareness, building up confidence in her ability to advocate not only for herself but for others like her. She regularly shares education and her own lived experience with friends, family, and students, and has distributed informative goodie bags in her classes to promote understanding. Her journey as an advocate continues, alongside her personal goals of living fully. Among her hopes are becoming a homeowner and spending meaningful time doing self-renovations with her family.
What Skye Wishes Others to Know About Epilepsy:
“Seizures are not one size fits all, and neither are the people who have them. We are capable. We are complex. We are still living full, meaningful lives- just in ways that might look a little different.”
