What change, big or small, would you like your blog to make in the world?
The vision was simple for this blog. Share my knowledge and experience surrounding epilepsy so that others may feel empowered and seen. The stigma surrounding epilepsy continues to hold much misconception.
How little did I know that my commitment to the blog only fed my feelings of failure. The fatigue of my chronic illness didn’t allow me to write on the manner and as often as I originally envisioned.
White lilacs and the color purple represent epilepsy awareness
So often with chronic illness, life drastically changes, and you find that you can no longer do something that you used to do with ease. This may not be the grand writings that I imagined, but it’s what I can do right now.
Perhaps someday, as medicine and technology advances, I will be able to do more.
If you are interested in learning more about epilepsy visit my frequently asked questions post to become informed and help stop the stigma.
Epilepsy will never be cured. Especially mine, not in my lifetime, not this intractable, unknown caused, epileptic brain.
All living things are mortal- life is too short, live and enjoy it while you can. Go explore, learn, and experience while you still have the capacity to.
The Second Law of Thermodynamics – The Second Law is often cited as the reason for the “arrow of time.” The universe is observed to be evolving from a state of lower entropy (the Big Bang) to a state of higher entropy, giving time a direction. In simpler terms, heat flows from hotter to colder environments. This is how I keep myself warm, by sucking the warmth out of others.
Change is constant – you are a speck on top of a world rotating around the sun. This sun is rotating around a universe, rotating around a galaxy rotating around a solar system rotating several galaxies. All plunging through space together because… we exploded together. That is wild to think about. So technically on a base level, you are truly forever in motion. So if someone tells you to “get off the couch and get moving” you can tell them you have! But I wouldn’t recommend the response unless you want to keep your job, relationship, or allowance.
You are reading this sentence. This is a direct, undeniable experience you are having right now. At some point, you had past experiences that led you here. And you will make choices from this moment that will influence your path forward. Your life is partially a creation of your choices.
Photo by Sergio Scandroglio
Every person is unique. Even those who share the same DNA. Their perspective and their communication is entirely their own and should be respected within reason.
To learn, you must admit you do not know. This is extremely difficult, especially as you become more well versed in a subject and your ego gets in the way.
The energy spent on the focus of what others may think is useless. It is very likely that they are spending a lot less time thinking about you than what you are assuming they are. Dress, put on makeup, dance for you, no one else.
You can only control your own emotions, actions, and decisions.
Beliefs should conform to one’s best scientific understanding of the world. One should take care never to distort scientific facts to fit one’s beliefs. – TST
“The Greatest Thing, You’ll Ever Learn, Is Just to Love, And Be Loved, In Return.” – Nature Boy by Nat King Cole
Your thoughts?
Do you agree with any of the above? Why or why not?
My formal education background is in STEM. I grew up in a household where there was always analysis and a solution. Naturally, when there is a problem in my life, whether it be professional, romantic, or fiscal, I approach it with logic.
Recently, I have started to watch the show Mr. Robot. If you happen to never have heard of it, it is about a young man, Elliot, with social anxiety who works in cyber security, yet is a vigilante hacker. He is very against corporate America despite working for it. He falls into an intense situation where his morals are questioned. I refuse to give any spoilers, but so far the show is phenomenal.
It’s all just 1s and 0s
At one point in the show Mr. Robot is telling Elliot that life does not have any grey areas; It is all 1s and 0s. This has been a concept I have been struggling with for some time.
Not because I disagreed, but because I agreed.
Photo by Rada Aslanova
Let me give you an example using my relationships. I’d perform an assessment, and if I detected – or if the other person vocalized – anything less than 100% commitment, a “1,” I would end the relationship immediately. There was no grey area: if it wasn’t a “1,” it was a “0,” a complete “out.” I refused to dedicate my energy to a relationship lacking that full investment. Some might interpret this as Anxious-Avoidant Attachment, though I haven’t undergone any formal assessment.
Security or Adventure?
Recently, my binary approach has been thrown into question. Security and adventure are not mutually exclusive. As my partner says, it’s about balance.
I am seeking security and adventure. It is possible to have a reliable relationship with emotional stability with somebody who you can share wonderful adventures. I know it exists.
The ideal blend of the two will likely change as life progresses, and priorities change. But I plan to be intentional on not letting my binary approach let my pursuit of stability undermine my need for adventure and stifle my love for growth and learning.
What Are Your Thoughts?
Do you see the world in 1s and 0s? Do you prefer to live in the grey?
What could you let go of, for the sake of harmony?
Getting a diagnosis of a chronic illness, or even experiencing an injury that fundamentally alters your life’s path, can be absolutely devastating. The initial shock, the grief, the fear – these are powerful emotions that are unlikely to remain static. Your feelings today are not what they were yesterday, and they will almost certainly evolve in the months and years to come.
My first piece of advice is simple: take things day by day.
Photo by @epil_epsy_ogue
It takes time to process such a monumental shift. For me, it took five years to truly begin resetting my way of thinking. I had once made plans to move far away, back to a place I’d lived before, but that location was distant from my family and my vital support system. My career aspirations also underwent a radical transformation. As I came to terms with the possibility that I might never drive again, I began researching careers that significantly reduced the need for me to be driven frequently.
This journey is one of constant development. It’s about gently letting go of who you used to be, and with it, all your original plans and expectations. This isn’t an ending; it’s a powerful shift. “This is who I am now,” I tell myself, “and I am okay with it.”
It will indeed be a long journey, filled with days that are better than others. And it’s perfectly okay to not be okay! Feelings of frustration, disappointment, and even anger are normal.
There will be things you once enjoyed doing that you can no longer participate in, and it is right and healthy to mourn those losses. But remember, you are still that same great person. Your contributions to the world may simply take a different form. You can absolutely still be a dignified, social, and beautiful person, despite an illness.
In the context of these feelings, achieving harmony refers to a state of inner peace and balance that can exist despite challenging external circumstances or waves of negative emotions. I admit, this is far easier said than done.
Photo by Shiva Smyth
It’s about cultivating an equilibrium within yourself, where diverse emotions, thoughts, and experiences can coexist without spiraling into internal conflict or distress. This often involves practicing positive self-talk, leaning into your core beliefs, and grounding yourself with the support of friends and family to maintain a stable emotional state.
For the sake of this inner harmony, I am actively working to let go of my expectations of perfection for my future. I encourage you to join me on this journey.
How would you answer the question above? Let me know in the comments.
Epil(epsy)ogue 
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