The Full Embrace of Life
Approaching Life’s Outlooks with an Invisible Disease
Blog written by Laura Greenwald
When I was in middle school, I spent the better part of a year making my life’s bucket list. I wrote of all the dreams I wanted to achieve, all the places I wanted to travel to, and all the famous people I wanted to meet. The infamous bucket list, originating from the term “to kick the bucket” or simply… die. I looked at life with wide eyes and an anxiously beating heart earnestly waiting for life to simply begin.
It was not on that lengthy bucket list to be diagnosed with a lifelong, incurable brain disease but now somehow, that was a part of my life.
At the age of nine, life was big and beautiful and I didn’t know it to be cruel. To live life fully is to live in embrace. The full embrace of the adrenaline from skydiving, the full embrace of falling in love for the first time, the full embrace of traveling to a new country and meeting bands of individuals who live a life so opposite, yet so beautifully. To the other end, life is full of pain and grief. To embrace the pain and soak in the grief is just as important for a life well lived. The full embrace of a new diagnosis, the full embrace of losing a loved one so deeply integral to your life, the full embrace of a heartbreak never thought possible.
“It is not miracles that generate faith, but the suffering of life.”
Fyodor Dostoevsky
Fyodor Dostoevsky is one of my favorite individuals who lived with epilepsy. He often wrote of his experiences with auras and seizures, and even wrote some of his characters to have the disorder as well. Dostoevsky brings up a wonderful point of life: our faith and joy doesn’t necessarily always come from the unseen or the joy that comes from life, but rather the pain and despair that our body feels and grapples with. What would life be if it was filled with only happiness, joy, and excitement? Our greatest lessons are often learned through our greatest struggles. Our purpose is so often fueled from our pain.
Take Dostoevsky as an example: he didn’t quit writing once he received a diagnosis, he leaned into it. He embraced it. He created remarkable characters that both thrived and struggled with seizures.
If you have an invisible illness as I do, I encourage you to embrace the pain. Embrace the grief. Let it hit you like a train rather than ignoring it. It is most important, I must say, to embrace and then set it free. There is a time and place to pick the thorns out of our hands and even allow our loved ones to pick the thorns out that we cannot reach. Once healed, we must now decide: what now? How can I live my life as a victor, rather than a victim?
I’ll give an example: one of my biggest fears is having a seizure in front of a stranger. The thought of being unconscious in front of an unknown person who may have no tools to help me was crippling at times. I took my pain, and found purpose in it. Now, I teach seizure first aid all throughout my community. I’ve hosted fundraisers and events with the sole purpose of providing free education to make me–and many other people with epilepsy–feel safe if a seizure were to break through. I created a platform on Instagram I named @seeingseizures where I speak on epilepsy and seizures with the sole purpose of making epilepsy visible. I advocate heavily in my community of South Florida and took part in the Miss Florida USA pageant to continue platforming epilepsy awareness.
Living with an invisible disease is not a one size fits all. It’s a journey trudging through the mountains, falling down slippery slopes, easing off into a clear and smooth path, and reaching peaks and valleys both expected and unannounced. The most beautiful views tend to be from the most difficult paths taken.
What would life be if it was just a smooth and straight line to the finish?
We may not be in control of our bodies all of the time (I know I certainly am not), but I do have the power to control how I respond to my seizures, setbacks, and injuries. And I choose victory every time–we have to.
The next time your invisible illness overwhelms your body, I encourage you to sit through the pain–whether physical or emotional. Let it wash over you. These are the ebbs and flows of life. Now, open your eyes and make your next move. Will I stand back up and finish my journey? Will I trudge through the rocky waters and push through the thorny bushes? Or will I stay back, and watch the other hikers pass by me?
Our life is ours. Our life is not epilepsy’s, or POTS’, or diabetes’, or the like.
Sit tight + take hold.
Have a safe and seizure free day! 🙂
