The power of community

Angelica Mari Jareno and Matt Lightner
Angelica Mari Jareno and Matt Lightner

By Angelica Mari Jareno

My experience with epilepsy began many years ago, and it has been a roller-coaster ride ever since. Thinking about this journey, I am constantly reminded of the resilience and courage required to navigate life with this condition.

My first seizure introduced me to this new reality. I can still recall the confusion and panic of my college friends. None of us knew what was happening. They were shocked and unsure of what to do, and I felt helpless and confused as I regained consciousness. I could see the concern and confusion on their faces as they tried to make sense of the situation. After that, I adjusted my lifestyle and tried to live as carefully and normally as possible.

In the subsequent years, I managed to live relatively seizure-free. However, the dormant condition eventually resurfaced, marking a series of significant “firsts” – from experiencing episodes among coworkers, family members, and even with my boyfriend. Each seizure brought a mix of relief and vulnerability, especially when waking up to the unfamiliar faces of strangers. However, the worst-case scenario is when I’m alone.

While I was still working in Manila, I experienced a seizure episode with my colleagues. We had planned a Christmas celebration, with lots of drinking, eating, and singing. Amidst the festivities, I had an episode. I regained consciousness in an ambulance, with my manager holding my hand and reassuring me that my dad was on his way to meet us.

The first time my family witnessed one of my episodes was on a typical day. We were simply chatting and waiting for lunch to be prepared when I had an episode. I woke up to the sound of my brother getting ready to go to the hospital, as I had hurt myself during the seizure. My mother was telling me what happened, and my cousin was calming down her young daughter and assuring her that I was okay.

Similarly, my boyfriend Matt witnessed one of my episodes for the first time when he heard a loud noise coming from the bathroom as I was preparing to go to bed. He found me and comforted me, letting me know that I had experienced a seizure.

In each of these instances, I felt a sense of relief seeing someone familiar by my side. However, there have also been moments that left me feeling helpless and scared. For instance, there was an occasion when I experienced a seizure at a train station in Manila after work. Strangers came to my aid, accompanying me to the hospital, calling for assistance, and waiting with me until my dad arrived – all without expecting anything in return. Lastly, the first time I had a seizure alone, it just felt like time suddenly stopped. When I opened my eyes, I realized I had had a seizure because my arm was hurting, I had bitten my tongue, and I felt incredibly tired in front of my spilled coffee.

These experiences have highlighted both the kindness of strangers and the importance of having a support system in place. Whether it was the compassion of coworkers and unfamiliar persons or the comforting presence of family and friends in hospitals, their actions served as a reminder of the power of community and empathy.

At first, I hesitated to share my condition with everyone around me, trying to limit it to only those within my inner circle. However, as these events unfolded, I gradually recognized the significance of informing others about my condition for their own awareness and understanding. Seeing my mom and dad crying beside me in the hospital broke my heart into pieces. I could feel their fear and worry, and it pained me to know that my condition was causing them so much sadness. I realized that they would feel much more relieved if I had someone nearby who knew what to do in case of an emergency.

Organizations such as JoshProvides Epilepsy Assistance Foundation have helped me on my journey, providing, help, hope, resources and most importantly support from a community of people who know exactly what I am going through, because they, too, are living with epilepsy.

Despite all the challenges, I’ve come to realize that I am not alone in this journey. My experience with epilepsy has been a mix of trials and triumphs. But, through it all, I remain hopeful and determined to embrace life to the fullest, confident in my ability to overcome any obstacle with the enduring love of my family, the solidarity of the epilepsy community, and the kindness of the people around me.