Superman And Me

When I push through the huge revolving doors at my office, I undergo a transformation. Superman had his telephone booth where he changed from a reporter to the Man of Steel. I have a spinning wall of metal and glass where I morph from the father of a kid with epilepsy in to the Man of PowerPoint.

epilepsy parenting family work superman

Once I step to the other side, I hide my true identity. No matter how little sleep I got the night before or many seizures my son had that morning, I smile at the guards as I pass through security. I say ‘Good morning‘ to my fellow passengers in the elevator and the people I pass in the hall. Inside the walls of my own Daily Planet, I separate my two lives and only show the person that my colleagues expect to see.

The thing about leading two lives is that they are impossible to separate. Clark Kent doesn’t stop being Superman when he wears his glasses. Both identities share the same thoughts and emotions and super powers. He thinks about saving Metropolis while sitting at his desk. He listens for the call of someone who needs him while he grabs coffee in the breakroom. He can’t be one or the other when he is both, regardless of which mask he wears.

For an ordinary person, it’s exhausting maintaining this separation every day. On bad seizure days, I struggle to keep my focus on my work. My thoughts often find their way back to my son, wondering if the seizures have stopped or how he is doing in school. I check my phone constantly to see if I missed a call or a text from my wife letting me know that I am needed somewhere else. Superman only had a city to protect. My son is my world.

With every interaction, it takes energy to adjust my mask and ensure that it hides the turmoil inside. After a night without sleep, it’s especially difficult but there is no other option. I have to be able to focus on my work. My job is what pays the bills and provides us with health insurance. The weight of responsibility and the need to perform often feels like it would be too much even for Superman. And yet, somehow, this is my every day.

I don’t always succeed. There are days where it is all too much. Try as I might to hide it, pieces of my reality are visible to the outside world.

Their planet crumbled but Superman, he forced himself
To carry on, forget Krypton, and keep going
~Crash Test Dummies “Superman’s Song”

On those days, I do my best to carry on and keep going, too. I will myself to get to the end of the day so that I can go back through those revolving doors. When I step out onto the concrete, I start to undo my disguise. With every step that takes me closer to home, I shed the layers of my corporate costume. No longer needing to exert the energy to maintain my facade, I drop my mask to the ground.

As I take those last few steps up to our front door, I open myself up and let the joy and fear and hope and love wash over me. Turning the doorknob, I can already hear laughter from the other side of the door. Pushing the door open, I’m rewarded for my impossible effort during the day with “Daddy!” and I let out a cleansing exhale that I’ve held in all day.

This must be how Superman feels when he takes off his glasses at the end of the day. Finally, I can be who I am supposed to be.

Always Running

Our new home city has a notable kite-flying history, and last weekend we went to the Philadelphia Kite Festival. Separated by only a few miles (and two hundred and fifty years) from where the festival was held, Benjamin Franklin performed his famous electricity experiment, as the story goes, with a kite, string, and a key.

Inspired by historical events, we forewent the store-bought kites and headed to the tent where visitors could decorate a simple paper kite. My son sat at one of the long, wooden tables, in front of a blank kite. A volunteer slid over, placing weights on the corners of the kite and handed my son a white, plastic basket of markers.

epilepsy philadelphia kite festival

Sticking with his go-to move, my son wrote his name in the center of the kite. Then he rotated through the markers and adorned his kite with lines and shapes and squiggles in every color. Only on one side, though. The volunteer explained that the side my son was decorating was the side that he would see when his kite was in the air. When she offered to flip the kite over so that he could draw on the other side, he told her that he was done.

The volunteer took his kite and put on the finishing touches: a few folds and tape to create airfoils and string from wing to wing. As she did, she leaned over the table and gave my son a lesson in flying a kite. “Keep the wind at your back,” she said, brushing his hair from back to front with her weathered hands.  “Otherwise, it will fall to the ground.” He stood, listening intently, as if he were a pilot about to take the controls of an airplane for the first time.

epilepsy philadephia kite festival

After a few more pointers, my son grabbed his kite and headed to the field.  He placed his kite gently on the ground and unrolled a few feet of string. It was not a particularly windy day and most of the kites on the field sat limp on the ground. The breeze was barely enough to move the blades of grass and cause an occasionally flutter of the paper that comprised our hand-crafted kite.

“Go!” I told him. He held on to his roll of string and started to run. After a few feet, his kite lifted in to the air. He would turn to look at his kite high in the air but, as he did, it would start to sink slowly towards the earth below, so he would turn again and race across the field and his kite would climb back in to the sky.

epilepsy philly kite festival

My son and I took turns over the next half hour running across the field keeping his kite in the air before I called for a break. He stopped running, and his kite fell to the ground.

We sat on a bench near the river, watching other people fly their kites, and I thought about how we have to keep running to keep everything up in the air. We are constantly running, adjusting and managing medicine, measuring everything he eats for his diet and cooking meals, making sure he’s not too tired, hunting for other triggers, and always observant, watching for seizures. We’re running and trying to normalize his day for school, and racing between appointments, and trying to give him as normal a life as possible. If we ever stop running, everything, like his kite, will come crashing back to earth.

I wish so much for him to feel the wind at his back…to watch his kite fly in the air without the need to run so that he can lay back in the grass, watching his kite in the air, and simply enjoy the sun. My son didn’t complain because there was no wind or because he had to run across the field to keep his kite in the air. He doesn’t often complain about his seizures, or his medicine, or his diet. Through everything, my son has been a trooper.

He runs because he doesn’t know or remember any other life.

We run because he is our son, and we would do anything for him.

epilepsy philly kite festival