Gordonnay Gaines: A Journey of Strength, Resilience, Self-Care, and Advocacy
PDC Family Consultant proudly recognizes Gordonnay Gaines, a remarkable young woman whose journey with epilepsy demonstrates the power of perseverance, self-advocacy, and determination.
Gordonnay is a model, entrepreneur, and creator of @seizetheday.e, a platform dedicated to sharing her personal experiences, raising epilepsy awareness, and providing encouragement to individuals navigating similar challenges.
Her story reminds us that living with a chronic neurological condition involves more than managing physical symptoms. It also requires emotional strength, a supportive community, self-compassion, and the courage to embrace life despite uncertainty.
My Journey with Epilepsy
My name is Gordonnay Gaines, and I am a model, entrepreneur, and epilepsy advocate. I created @seizetheday.e to share my journey, connect with others, and help raise awareness about what it truly means to live with epilepsy. My life changed in December 2014, when I experienced my first seizure at the age of 17. I was a senior in high school, preparing for graduation and looking forward to the possibilities of adulthood. Like many teenagers, I was discovering who I was, building friendships, and imagining what my future might hold. Suddenly, I was faced with something I had never anticipated: learning how to navigate life with epilepsy. What should have been an exciting chapter of independence and self-discovery became a journey filled with uncertainty, medical challenges, and emotional adjustments. I had to learn how to understand my condition while continuing to pursue the dreams I had for myself.
The Challenges People Do Not Always See
Over the years, I have experienced recurring seizures and medication side effects that affected my emotional well-being. However, one of the most difficult parts of living with epilepsy is not always the seizures themselves. It is everything that happens between them.
It is the anxiety of wondering when another seizure might occur.
It is struggling with memory loss and trying to regain confidence in yourself.
It is feeling isolated, even when surrounded by family and friends who genuinely love and support you.
It is learning to live with the uncertainty of a condition that can interrupt your life without warning.
There have been moments when I felt misunderstood and alone. Although I had people around me who cared deeply about my well-being, I sometimes struggled to explain what I was experiencing emotionally. I realized that epilepsy affects more than my physical health. It can influence my confidence, relationships, emotional wellness, and the way I see myself.
Facing Myself Through a Different Lens
One of the most emotionally difficult moments of my journey occurred when I watched a video my father had recorded of me experiencing a seizure. He recorded the episode to provide my physician with information that could help guide my medical care. Although I understood why he had taken the video, watching it was overwhelming. For the first time, I saw what happened to my body during a seizure. I felt embarrassed, vulnerable, and uncomfortable. The images stayed with me, and I struggled to stop thinking about what I had seen. Watching the recording brought back painful memories of my first seizure at school. I began worrying about how others might perceive me and whether they would see me differently because of my condition. It was difficult to reconcile the confident young woman I wanted to be with the vulnerability I witnessed in that video. Over time, I began understanding that having epilepsy did not make me less capable, less beautiful, or less deserving of respect.
Epilepsy is something I live with, but it does not define my worth.
Learning That I Am Worthy of Love
Living with epilepsy has also influenced the way I think about romantic relationships. There have been times when I questioned whether someone would hesitate to pursue a relationship with me because of my diagnosis.
Would they understand my condition?
Would they be patient during difficult moments?
Would they accept the uncertainty that sometimes accompanies epilepsy?
These questions created moments of insecurity, but they also encouraged me to reflect on my own self-worth. I have learned to remind myself that I deserve love, compassion, respect, and meaningful relationships just like anyone else. My condition does not diminish what I bring to a relationship. I am deserving of someone who appreciates me for who I am and is willing to navigate life's challenges alongside me.
Turning My Experience Into Advocacy
On my 21st birthday, I made a decision that would become an important part of my personal growth.
I launched @seizetheday.e.
Creating this platform gave me an opportunity to share the emotions, experiences, and challenges I had carried privately for years. It became a place where I could speak openly about epilepsy without feeling the need to hide my struggles or pretend that everything was always okay. More importantly, I wanted to create a space where others living with epilepsy could feel seen, heard, understood, and supported. I knew how painful isolation could feel, and I wanted someone reading my posts to recognize that they were not alone. Even during moments when I struggled with loneliness myself, I hoped my story could provide comfort and encouragement to someone else. What began as a personal outlet gradually became a meaningful form of advocacy.
Grief, Stress, and a Difficult Season
Following the death of my grandmother, I experienced an especially challenging period. During the six months after her passing, I had seven seizures. Before that time, I might have experienced approximately two seizures in an entire year. The increase was frightening and emotionally exhausting. I was grieving the loss of someone I loved deeply while trying to continue with my everyday responsibilities. On the outside, I attempted to keep moving forward as though everything was okay. Internally, I was struggling. That experience helped me recognize how important it was to pay attention to my emotional well-being and discuss changes in my seizure patterns with my medical team. I began to understand that taking care of myself meant acknowledging my grief, recognizing my limitations, and making my health a priority.
Choosing Myself Through Self-Care
Eventually, I realized that I needed to make changes in my life. I decided to return to a medication that had previously helped control my seizures, despite my concerns about the side effects I had experienced. That decision was not easy, but I recognized the importance of working toward better seizure management. I also began making intentional lifestyle adjustments. I reduced my social alcohol consumption, made more time for rest, and became more mindful of situations that affected my physical and emotional wellness. I learned the importance of protecting my peace, establishing boundaries, and giving myself permission to slow down. Most importantly, I began taking my own needs seriously. I came to understand that self-care is not selfish. It is an essential part of maintaining my well-being.
Taking care of myself became an act of strength, responsibility, and self-love.
Celebrating Progress, Even After Setbacks
One of the most meaningful milestones in my journey was reaching three years without a seizure. That accomplishment represented more than a period of improved seizure control. It reflected the effort, adjustments, and commitment I had invested in caring for myself. Then, in May 2024, I experienced another seizure. In the past, a setback like that would have caused me to question myself. I might have spent weeks feeling discouraged, frustrated, and asking, "Why me?" But this time was different. Instead of allowing that moment to overshadow everything I had accomplished, I chose to recognize my progress. I reminded myself that I had achieved three years without a seizure. I acknowledged the changes I had made and the strength it had taken to navigate my condition. Having another seizure did not erase those accomplishments. It did not mean that I had failed. It simply meant that my journey was continuing. That shift in perspective represented tremendous personal growth. I learned that progress is not always a straight line and that setbacks do not diminish the effort we have made along the way.
The Power of Family and Community Support
Throughout my journey, my family's unconditional love has been one of my greatest sources of strength. Their encouragement, patience, and support have helped sustain me during some of my most difficult moments. Living with epilepsy has taught me the value of having people who care, listen, and offer reassurance without judgment. It has also shown me the importance of connecting with others who understand the emotional realities of living with a chronic condition. Through sharing my experiences, I have gradually worked through feelings of embarrassment and shame while discovering a community built on understanding and encouragement. Advocacy has given me an opportunity not only to support others but also to continue healing and growing myself.
More Than a Diagnosis
Today, I continue navigating adulthood, relationships, professional responsibilities, and personal ambitions while living with epilepsy. I am passionate about fashion, creativity, modeling, and entrepreneurship. I have dreams, goals, and aspirations that extend far beyond my medical diagnosis. Epilepsy is part of my experience, but it is not the entirety of who I am. I am still learning, evolving, and discovering new ways to embrace life.
Through @seizetheday.e, I want to encourage honest conversations about living with epilepsy, including the accomplishments, challenges, emotional struggles, and moments of uncertainty that are not always visible to others. I want people to understand that someone living with epilepsy can be ambitious, creative, confident, successful, and vulnerable—all at the same time.
My Message to Others
To anyone living with epilepsy or another chronic health condition, I want you to know that your experiences matter. You deserve to be heard, supported, respected, and understood. Do not allow your diagnosis to convince you that you are less deserving of happiness, love, success, or meaningful opportunities. Celebrate your accomplishments, even when they seem small. Give yourself grace during difficult moments. Advocate for your health, communicate openly with your medical team, and seek emotional support when you need it. Surround yourself with people who recognize your worth beyond your condition. Most importantly, remember that a setback does not erase your progress.
You are more than your diagnosis. You are more than your difficult days. And your story has the power to encourage someone else.
My journey with epilepsy continues, but I refuse to let fear silence my voice or prevent me from pursuing the life I envision for myself.
I am Gordonnay Gaines.
I am a model.
I am an entrepreneur.
I am an advocate.
And I am a warrior who continues to seize the day.