Imagine you're at the office. You're sitting at your desk, debugging an app or building a UI. Your coworker suddenly falls to the floor and starts convulsing. They're having a seizure....what do you do? You roll them onto their side, protect their head from injury, but the shaking continues. Just when you thought things couldn't get worse, their breathing stops. You're a developer, not a doctor. Now what?!??
I've had epilepsy since I was 15 years old, almost 20 years. I've been that stranger-in-need on more than one occasion. At school, at work, at events, while driving....I can never predict when my next involuntary dance will be. I've crashed two cars and have hit my head on safes, doors, wall corners, bars, desks, and more. Some say epilepsy is an invisible illness, but I've had many painful bruises to prove otherwise.
I'm not one of those lucky people that is 'overcoming my illness' or 'living without boundaries'. My boundaries are seizure triggers and epilepsy will inevitably end up overcoming me. More than 1 in 1,000 people with epilepsy die from SUDEP- the sudden, unexpected death of someone with epilepsy. It is the leading cause of death in people with uncontrolled seizures. Did I mention I also have refractory epilepsy? Lucky me!
But seriously, chronic illness has a way of altering your perspective on life. Sometimes I wonder, when I'm camping with my family, playing ball with the dogs, or just debating politics in the morning....is it the last time? Sometimes I'll struggle to fall asleep; I'm envisioning my husband and kids at my funeral when I shut my eyes. Despite the negativity, I do feel that I enjoy life more overall...everything matters, everything means something.
So I plan. I prepare. I update my 'software' regularly. Much of my life with epilepsy is planning for the next big 'disc' failure.
Just this past Wednesday, I had another seizure. I stopped breathing for 45 seconds, longer than I knew I could hold my breath! But this time was different than the others: there were no hot fryers or grill tops to burn myself on, no hard corners to bump my head on - I fell directly onto my bed. That moment is what I've been planning for since 2015 when I first googled 'free web development courses'. At the time, I was a homeschool mom who had been denied disability assistance twice and didn't finish college because I became pregnant. I'd always relied on hard labor to earn a buck, working as a line cook, restaurant manager, and landscaper. But I was determined to work smarter, not harder, in an effort to extend my life.
Recently, I've been working to complete my portfolio website and have been finishing up courses on Udemy (check out The Modern React Bootcamp) and FreeCodeCamp. I also took a break to publish a simple Bootstrap site for my son's Science Fair project (an excuse to apply some of my skills): Testing Performance in Model Rockets. I feel very fortunate to be able to learn and create neat projects like this.
It's rare that I get excited about the future, but I am. Remote work is on the rise. The ability to contribute to the world, no matter your physical ability or location, is groundbreaking. It's changing the world - changing my world anyway.
Having my brainwaves recorded by an EEG head cap, 2017
My dream is to code while drinking percolator coffee at sunrise with birds chirping in the distance
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