My journey with epilepsy has been a long one. The twenty years that I have spent with this condition have been educational, pragmatically and emotionally. Epilepsy’s unpredictability ensures that I am always prepared to make a rapid exit when in public. I am eternally conscious that mere seconds (and a few misfiring neurons) are all that separate a fun evening, from a highly charged medical emergency. At the tender age of ten, I learned the difficult lesson that life isn’t always just, and that some problems are beyond resolution. That the age-old maxim, ‘If you have your health, you have everything,’ can cruelly sting the chronically ill.
Yet, ironically, epilepsy has taught me a great deal about humanity’s capacity for perseverance. The stigma of this condition often precedes any definitive knowledge of it. It’s not uncommon for epilepsy to be fodder for cheap comedy, or a source of spectacle in public spaces. Preconceptions and misconceptions plague us neurologically challenged, socially and professionally. But, despite these hurdles, the epilepsy community that I’ve come to know and love, is unwaveringly a place of hope.
Through social media and blogging, I have been able to connect with others like me. Those people who we are told don’t have ‘everything.’ People who have woken up in ambulances more times than they care to remember, exhausted treatment options, and lost friendships or careers to their condition. People who are losing their memories, their driving privileges, and are medicated beyond belief. But despite all these factors, they are some of the most positive people I have ever known. They occupy an unenviable, yet choice position. Having experienced life’s hardships, they have a pronounced appreciation for its beauty.
My community doesn’t have the privilege of complacency, for tomorrow is not a given. The people with whom I connect, are deeply passionate about their personal ambitions, and find joy in life’s simple pleasures. They accept their limitations with grace and find alternative mediums of expression. Their stories are an endless source of inspiration, reflecting the power of unity in adversity.
They never cease to remind me of how profound the epilepsy community is.
While, their stories incentivise me in my own struggles, they also continually renew my faith in the human connection. There is something rather specific that emerges when you connect with others who share your circumstances – a unique kinship and an unconditional affinity is born. While society portrays us as living in lack and loss, those of us without our health are gifted with a surplus of wisdom and share a camaraderie. In an experience that can be isolating and demoralising, community offers a rare respite. It is a reservoir of empowerment, since there is nothing quite like being seen by your own people.
My life would certainly have been easier without epilepsy, but a healthier me would undoubtedly have been lacking in emotional intelligence. I would never have had the opportunity to connect with the remarkable individuals who have shaped my understanding of the world. Epilepsy might be a hindrance at times, but it has been quite the education. Without it, I would never have realized that while not having ‘everything’ in the classic sense, the chronically ill possess so much more.
Maria Elizabeth is a literary critic and blogger. She is passionate about supporting others in their health journey. You can find her musings on life with refractory epilepsy at therealeword.wordpress.com