In an instant, everything I had envisioned for my future was thrown into disarray.
For those of us who have experienced seizures, the aftermath can feel like waking up in a world that is both familiar and foreign. It's a world where people around us often say, "You've changed," and while their words may sting, the truth is, we don't fully recognize ourselves either and we just want things to go back the way it was.
The dreams that my husband and I had nurtured and the plans we had meticulously crafted were overshadowed by a new reality that we never anticipated. Yet, as I reflect on this past year, I realize that it has been a profound journey of recovery, resilience, and self-discovery.
Seizures are not just physical events; they are emotional and psychological battles that leave lasting and sometimes devastating effects. They can alter our perceptions, our emotions, and even our personalities. It's as if the person we once were has been reshaped, and we're left to pick up the pieces and figure out who we are now.
For me, this journey has been both challenging and enlightening. There are days when I look in the mirror and see a stranger staring back. The hobbies and passions that once defined me have faded, replaced by a new set of interests and priorities. It's a disorienting experience, and it's easy to feel lost in the process.
Seizures are often misunderstood, and I wish more people knew about the profound impact they can have on a person's life. In my case, experiencing two back-to-back seizures was not just a physical ordeal but an emotional upheaval.
Here are a few things I wish people understood:
Seizures Are More Than Just Physical Events: While the physical symptoms of a seizure are visible, the emotional and cognitive effects are often hidden. They can lead to confusion, memory loss, and emotional instability, making it difficult to return to "normal" life. Seizures can lead to confusion, memory loss, and emotional instability.
The Aftermath Is Overwhelming: The period following a seizure can be filled with fatigue, disorientation, and anxiety. It's not just about recovering physically; it's about regaining a sense of self and stability which varies person to person the length of time to fully recover and regain full cognitive abilities.
Every Experience is Unique: It's crucial to remember that each person's experience with seizures is unique and should be treated with compassion and respect. By taking the time to truly listen and learn about their individual needs and challenges, we can help break down the stigma and misconceptions surrounding seizures. Let's strive to be better allies and supporters for those living with this often misunderstood medical condition.
Support is Crucial: Having a strong support system can make a world of difference. Understanding, patience, and love from friends and family are invaluable during the recovery process and everyone recovers at a different rate. Honestly, I now have a little understanding of how dogs may feel when abandoned by those they love; the absence of support can be profoundly isolating and distressing.
Personally, I have consistently faced challenges with depression, anxiety, severe pain but this was an entirely different kind of suffering that I had never encountered before and I would not want anyone to have to experience it. However, I discovered the importance of relying on the support from my loved ones, who remained by my side during both good times and bad.
With the unwavering support of my husband, I choose to focus on all the things I still can do, rather than dwelling on what I can't. I have learned to adapt, find new passions, and embrace new opportunities that my circumstances have brought. I am constantly amazed by my own strength and resilience.
In the past, I often allowed myself to be walked over and would overextend myself, a pattern I now recognize as stemming from my upbringing in the Mormon religion. The principle of "Do as I say, not as I do" was prevalent, where I was taught that it is righteous to sit down and stay quiet, even when standing up for others. This mindset, while rooted in a desire to be humble and selfless, often led me to suppress my own needs and voice.
It's a realization that has empowered me to redefine what it means to be supportive and compassionate, both to others and to myself. Embracing my own voice and learning to set boundaries has become an essential part of my growth, allowing me to engage with the world in a more balanced and authentic way. I am not just an advocate for myself, but others as well.
This shift in perspective has been transformative. While it may sound silly for some, I’ve come to understand the importance of reciprocating the energy I receive from others. If someone brings positivity into my life, I strive to match that energy. Conversely, I’ve learned to distance myself from negativity and toxicity.
Life is too short to waste on people who don’t uplift you.
Of course, it's impossible to ignore the things that seizures have taken from me. There are activities and experiences that I once cherished now out of reach. The most impactful memory erased from my mind is the last year or so of my grandfather's life, including his last Christmas celebration and his final breaths on earth.
This feels like a missing piece of my personal history, a void where cherished moments and final goodbyes should reside. Yet, it is a reminder of how seizures can affect not just the present, but also our connection to the past.
Despite this gap, I hold onto the love and lessons he taught me, carrying them forward as a tribute to his enduring influence on my life. It's a loss that I mourn, and it's okay to feel that sadness however acknowledging losses is an important part of the healing process.
However, I refuse to let these losses define me. Instead, I choose to celebrate the fact that I am still here, thriving and learning along the way. Sure life may look different now, but it is still filled with moments of joy, love, and connection.
One of the most empowering lessons I’ve learned is to stand firm in my self-worth.
I am done with feeling like I am not good enough. The doubts and insecurities that once plagued me have begun to fade. I’ve reached a point where I can let others believe what they want, let them blame me for their perceptions, and allow them to remain stuck in their version of events.
I’ve faced my fears head-on with my husband by my side, embraced the changes in my life, and learned to advocate for myself. I’ve discovered the importance of self-care and self-advocacy, ensuring that I prioritize my needs and surround myself with those who genuinely support and inspire me.
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