This article was written by Jon for Mentors Collective Magazine. You can read it on the Mentors Collective website here.
My journey with epilepsy is a bit of an anomaly.
New cases are most common in children – typically in the first year of life and then, with gradually less prevalence, through the age of 10. They pick up again after the age of 55, often triggered by strokes, brain tumors and Alzheimer’s disease. In the years in between, the onset of new cases plateaus, and is more than likely to follow traumatic brain injuries.
Then there’s people like me, healthy for the first three decades of my life, so blindsided by the diagnosis that my first two seizures went undiagnosed and when a third doctor gave me the news, I didn’t believe him – in part because he did it brusquely and then left the room. It didn’t help that even when more tests confirmed the diagnosis, I was officially labeled cryptogenic, or idiopathic, epilepsy, meaning there is no known cause – and likely never will be.
Dealing with adversity under those conditions has taught me some of life’s most important lessons. Without this experience, I know I would be different.
Whether you face a situation that is life-changing, or less drastic but still overwhelming in the moment, here are five lessons I’ve learned to help along the way.
Don’t linger on: Why me?
When I first tried to absorb that I had epilepsy, I was at the proverbial fork in the road. I could spend the rest of my life asking, “Why me?” Or I could turn my situation into an opportunity.
To be honest, I did go down the “Why me?” road for a bit. I think that’s human nature. I had worked hard building a career, considered myself a good person, and kept myself in top physical shape, even running several marathons. Epilepsy? At 30 years old? Just like that?
But “Why me?” goes nowhere fast.
Instead, I started challenging myself to find ways that epilepsy could be a gift, an opportunity to help discover passions I might otherwise never have explored. I learned that can be a controversial thing to say; some people don’t react well to the idea of a life-changing medical diagnosis as a gift. But let me explain.
In the nearly 17 years since the onset of epilepsy, dealing with its adversity has given me, for lack of a better word, a type of superpower. I’ve discovered in myself the ability to transform a life-limiting prognosis into a happier, more fulfilling existence. Granted, it hasn’t always been easy dealing with my various health challenges. But my diagnosis gifted me with the power to find my purpose in life, pivoting not just my career but my whole priority system.
I really am a better person because of it.
Take one step forward. And then another.
On my epilepsy journey, I experienced more than 500 seizures and more than 200 medical tests. I remember one week in the hospital turning into a second week and then a third, because doctors couldn’t find what they were looking for day after day after day. And I can still hear one of my doctors telling me that a neurosurgeon would be drilling 14 holes in my skull for the first of three surgeries.
I also can vividly recall the vacation morning when my daughter was panicking because, for the first time, she witnessed me having a tonic-clonic seizure. There’s nothing like that feeling of parental helplessness. Trust me, I know what it’s like to get down.
Still, regardless of how easy it would have been to give up, I wouldn’t do it.
I knew I had to work through the problem (and if I didn’t do it, my wife Julia was quick to give me a nudge!). I would study the issue in front of me, learn my options, put one foot in front of the other, take one step forward, and then another. Wallowing would get me nowhere.
You’ve heard it a thousand times, but it’s true: Don’t ever give up.
Find joy in unlikely situations.
I’m a believer in the power of positive thinking. I don’t mean toxic positivity, in which you refuse to acknowledge sadness or anger. What I’m talking about is finding the positive in situations that are otherwise adverse, and making the most of those moments.
During one of my hospitalizations, doctors monitored my brain in the hope they would catch it in the process of having a seizure. That meant they had to wait for one to happen, and I had to stay in a room with a cone of wires attached to my brain, waiting along with them. As time went on, they asked if there was anything that typically triggered a seizure, because the waiting seemed endless. Among other things, I mentioned alcohol. To my surprise, they brightened and said that was an option.
From then on, every night until the testing ended, a pharmacist sent up a “prescription” for a small amount of Jack Daniel’s, and a nurse brought me a ginger ale and a cup of ice.
At the time, it would have been easy to retreat into myself. I was alone and still had no clear path to managing my epilepsy. Instead, I chose to find joy in the unlikeliest of situations: my Jack-and-ginger every night before going to sleep. It became a funny ritual to savor, and thinking back to my hospital cocktails makes me smile to this day.
Shape your own world.
A number of years ago, in the midst of one of the worst stretches of my epilepsy journey, I went through a career crisis. I had a network of trusted colleagues and had built expertise in my field, but my passion was gone. My diagnosis revealed to me that with one precious life to live, this wasn’t my purpose.
On the surface, changing careers must have looked crazy. Why change one of the constants in my life when so much else had been upended? But after some soul-searching, I realized that I needed to recalibrate my professional direction. In my case, that meant becoming an executive coach, and the change has led to years of satisfaction and fulfillment.
Whether a chronic medical condition or something else, there are all types of adversity that can hold us back. The key is to get out of our own way, and shape our world in a way that works for us.
Adversity can illuminate our passions, and our way to a happier life.
Nurture human connection.
When we go through adversity, we emerge with a heightened sense of empathy. We have the ability to put ourselves in another person’s shoes, and stand alongside them as they go through their own battles.
Epilepsy, like so many diseases, profoundly affects the individual, but also the community of people who love and care for them. And so, as I’ve been able to get my epilepsy under control, I’ve come to realize that my capacity for empathy with others has grown exponentially and continues to be nurtured by this ever-growing community of people that has become like family to me.
I recently spent time with a person who helped me with my new book about my epilepsy journey. When we parted, he said he hoped we would keep in touch. “We will,” I told him. “You’re now a part of my life. It doesn’t end here. We’re connected.”
That’s the way I live these days. Some people gather money; some gather objects. I gather quality relationships. Dealing with adversity has highlighted what’s most important in my life, and that’s the relationships I’ve built and the community surrounding me.
Human connections make us healthier in every way.
These five ways to take control of adversity have served me well, whether I’m on an upswing or a downswing. I remind myself of them often.
They are grounded in reality, not magic. The best advice never is.
