Category: lifestyle

Vincent And The Doctor And My Son

This post is part of the Epilepsy Blog Relay™ which will run from November 1 to November 30, 2017. Follow along!

I remember the first time I saw a Van Gogh painting. I mean, really saw a Van Gogh painting. I stood in front it the same way that I’ve stood in front of each of his paintings that I have seen since. I wondered about him. About his life. About his painting. About his anxiety, synesthesia, and depression. About how it all came together in brilliant color on a piece of canvas.

That was long before I knew that he had epilepsy or how much of an impact epilepsy had on his life. And on mine.

When my son was first diagnosed with epilepsy, I did what I imagine many parents do. I went to Google and searched for famous people with epilepsy. I needed to see examples of other people from history that were able to succeed in spite of their condition. I needed to know that the endless possibilities that my son came into the world with were not taken away because of the faulty wiring in his brain. I needed some hope for his future and I thought the way to find it was by looking to the past.

That my search brought me closer to Van Gogh was a bit of a mixed bag. On one hand, to learn that my favorite painter had the same condition that my son has was an incredible coincidence. When I look at one of his paintings now, I wonder how much of his epilepsy shows up in them. How much of the way that he saw the world was due to his epilepsy?

As I wrote this post, I pulled up an episode of Dr. Who where he visits Van Gogh. There is a scene where Van Gogh, the Doctor, and his companion, Amy, are lying in a field looking at the night sky. Van Gogh explains the colors that he sees and the wind in the stars and the sky transforms into one of Van Gogh’s most famous paintings. It’s hard to look at a painting like Starry Night and not think of the auras that some people with epilepsy see. Will my son see the world as beautiful as this?

“I’ve seen many things, my friend. But you’re right. Nothing’s quite as wonderful as the things you see.” ~Dr. Who

On the other hand, knowing what I did about Van Gogh’s life and how it ended filled me with dread. Did epilepsy or the medications he was on cause any of his other conditions or make them worse? Did it contribute to him taking his own life? I’ve met people with epilepsy who battle depression and I’ve read about people who lost that battle. Is that what lies ahead for my son? He’s only eight.

In the episode of Dr. Who, the visit from the Doctor is in the same year of Van Gogh’s death. In one of the final scenes, the Doctor takes Van Gogh to the present to show him what becomes of his work. The art curator describes Van Gogh as someone who “transformed the pain from his tormented life into ecstatic beauty”.

The Doctor and his companion return Van Gogh to his time and he seems refreshed. But when they return to the present, they learn that their visit did nothing to rewrite the past.

“The way I see it, every life is a pile of good things and bad things. The good things don’t always soften the bad things, but vice versa, the bad things don’t always spoil the good things and make them unimportant.” ~Dr. Who

While they were able to give him a few more good things, the bad things in Van Gogh’s life were still too much.

When I started this post, I wanted to write about epilepsy and creativity. I wanted to highlight Van Gogh as an example of someone who created amazing things in spite of his epilepsy. Or maybe because of it. I wanted to talk about my son and how he has an amazing imagination and an openness to share the way he sees the world.

But every life is a pile of good things and bad things. When I see my son’s anger rise or his mood darken, I sometimes think of it happening as a teenager or a grown man. I think about the years of seizures and medications and side effects ahead of him and I crumble.

But he is only eight. There is no way of knowing what is in store for him. So instead of letting the bad things spoil the good, it’s up to me to encourage my son to share the way he sees the world because there is beauty in that. Because there is beauty in him that the world needs to see.

When I was finishing this post, I had the episode of Dr. Who on the screen for inspiration. My son walked by and asked what I was watching, and I told him all about Van Gogh. I told him that he was a brilliant painter who also had epilepsy. I said that he saw the world in a different way and used paint to show the world what he saw because he was an artist.

My son smiled at me and said “That’s so cool. I’m an artist, too.”

NEXT UP: Be sure to check out the next post tomorrow by Leila Zorzie at http://www.livingwellwithepilepsy.com. For the full schedule of bloggers visit livingwellwithepilepsy.com.

TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.

November 26, 2017
Endurance

My son just turned 8 years old. It’s been amazing to watch the changes in him over the last few years. He’s reading more on his own. He put together a 500-piece Lego set by himself. He’s doing more things by himself that he used to need our help with. This stage of life and of development has continued to surprise me.

Many things have not changed, though, too. He’s still having seizures in the morning. He’s still juggling medications and side effects. He’s still on the strict ketogenic diet, which means he still can’t eat what he wants. He still gets constipated. He still feels different. He is still having a hard time making it through the week and sometimes through a school day.

We’ve been on this part of our journey for more than three years. More than two years on the diet. More than ten medications. Hundreds of doctors appointments, tests, and therapy sessions. We’ve seen countless seizures, and they keep coming with no end in sight.

Earlier this year, I read [easyazon_link identifier=”0465062881″ locale=”US” tag=”epilepsydad-20″]Endurance[/easyazon_link] about Ernest Shackleton’s journey to Antartica. It’s an incredible tale of a failed overland expedition to the content. The title of the book was taken as much from what the explorers went through as it was from the name of their ship. They survived the loss of the Endurance, treacherous conditions, and a lack of food in an unforgiving part of the world. Along the way, groups were left behind to establish camps while others continued the search for help. Imagine the feeling of watching your best chance of survival disappearing in the distance, hoping they will return.

I called to the other men that the sky was clearing, and then a moment later I realized that what I had seen was not a rift in the clouds but the white crest of an enormous wave. ~Ernest Shackleton

Some days I feel like Shackleton, pushing through, fighting for my son, stopping at nothing until I can save him. We’re trying to function, to get up every day, to go to work, to try to live a normal existence. Because we have to. Because there is no alternative, even under the siege of enormous waves. Because, like Shackleton believed, there is too much at stake.

Other days, I feel like the men he left behind. Stranded on an island, waiting, and hoping that someday we will be rescued. Every day, they woke up, walked down to the shoreline, looking for a ship. For months, that ship never came. Like them, we’re afraid. Every day, we wake up and look to see if we will be rescued. Instead, we watch our son lose control of his body. Every day, we see how hard he fights. Every day, for three years, with no end in sight.

Most days, I fluctuate, rising and falling like the cold waves crashing on to the frozen shore. I am not brave enough or strong enough to face every day like Shackleton. It tears me up to see what is happening to my son. To see him struggle every day in so many ways. It strips away my courage and leaves me wanting to be rescued. But the unbounded love I have for my son and my family forces me to soldier on, to fight for everything we get, and to not let epilepsy take more than it has.

Eventually, Shackleton’s journey came to an end. After more than a year of impossible challenges, Shackleton and his team found help. They went back and rescued the rest of their men. One day, those men that were left stranded make their way to the shore and looked out on to the horizon to see their captain returning for them. To see their lives returning to them.

I can only imagine the glory of that feeling. We are standing rocks, piled together on the shore looking in the expanse before us. I long for the day when I will look out on to the horizon and see a different life than the one we have been leading. A life where my son doesn’t have seizures. A life where he doesn’t struggle to do what so many others take for granted. A life where he can be free.

November 21, 2017
The World Outside

I’m lying in bed next to my son who I haven’t seen all week. With my right hand on my laptop, I reach my left hand over and rest it on his back, making sure he is still there. I can feel his breathing, my hand rising and falling with each of his breaths.

On the other side of him is my wife, who I was also missing. The last few weeks have been a whirlwind. A new job. A new house. A new school year for my son. A new medication for his seizures. A new outlook. A new focus.

With so many changes going on, I’d been so consumed with my life that I hadn’t looked up to see the world outside. When I finally did, I wished I hadn’t. The world kept turning. Things kept happening. Hurricanes, mass shootings, fear, and hatred. Human beings being cruel to each other and using their power to silence their victims. It seemed that the world had been uglier than usual in the time that I’ve been away. I felt both selfish and grateful to be away from it. To not experience it. To not get involved. To focus on my life and to shut out the world.

But that couldn’t last. The world seeped in, overflowing an already stressed situation. The combined strain tested the strength of that connection to my anchor. Our stressful lives during a chaotic time in an especially cruel world. Survival became about pursuing the path of least resistance. It was easier to hide from the world than it was to be a part of it. It was easier to not write than it was to write. It was easier to use the excuse of being too busy in life to avoid being a real part of it.

I pushed myself away from the world but I had nowhere to go. My family is my anchor, and I was thousands of miles away in every meaning of that phrase. A cross-country trip that followed added physical distance to the emotional. But on the plane ride back, I could feel the weight of the last few weeks lifting. The world in conflict sped below me as I looked out the window from a familiar, distant perspective. But it wasn’t the world I was eager to get back to. It was my family that was pulling me back, and I couldn’t get to them fast enough.

And so here I am, restlessly lying in bed next to my family in our new home. My obligations to our new life and the workday ahead steal my focus. But my son’s breath serves as a metronome that brings my attention back to this room. The cadence of his breathing and the rising and falling of my hand on his chest connect me to him. I find my wife’s hand in the same place, so we’re all connected together once again. The world outside and my insecurity conspire to keep the attention of my head and my heart. In this moment, though, I know that it will be my family that gets me through.

October 31, 2017
Little Bricks And Shaky Hands

When I was young, I loved playing with Legos. At my grandparents’ house, my favorite toy was a box of loose bricks. I would turn them into houses, or animals, or fighter jets. I remember “upgrading” to the more advanced Technic set when I was about ten. It felt like a right of passage. You’re born, learn to walk and talk, play with kid Legos, then hit that milestone of playing with Technic. From there, it’s all downhill and the only things left are to do are learn to drive, marry, have kids and, finally, die.

My son has developed his own affinity for the little plastic toys. Late last year, he needed less of my help to assemble the kits. It’s one of those moments that both made me proud for his accomplishments and sad for my loss of usefulness. Now, he is putting more complicated sets together mostly by himself. He’ll spend hours working through the instructions until he reveals his masterpiece.

Sometimes he’ll still ask for help with some of the smaller bricks because he has a hard time taking them apart. When I go to him, I see his little fingers struggle to grasp the tiny pieces. Especially when he is tired, his ataxia is more noticeable. His hands shake and make tasks that need fine motor control almost impossible. On his face, you can see the attention he is trying to give to his efforts. But his body’s instability wins out over his mind.

It’s frustrating and sad to watch. Compared to the occasional seizure or handful of pills he takes twice a day, the shakes are always there. They’re visible playing with Legos, trying to use a fork, and coloring and writing. They make learning new tasks difficult and they make playtime harder than it should be. I can’t imagine the mask he wears and how frustrated he feels inside when he tells me “I’m just a little shaky.”

Those words cut through me. I can’t fix it. It’s hard to watch him struggle. These are some of the same activities he works on in therapy and the more he does them, the better he will get at them. But many of these tasks will never be easy for him. It’s hard to watch my son have a hard time with such basic tasks like using a fork. It’s hard to let him struggle through and not do something for him or let him take a shortcut and eat with his hands.

I want to encourage that mindset of pushing through because I hope it will get better. He already has such determination and I want him to keep it. Even when it’s hard. Even when it’s unfair. Even when there are easier options. Why? Because that’s what is going to help him survive and succeed with the challenges he has ahead of him. My job as his father is to prepare him for what is ahead. Even if it means watching him struggle and shake. But I also want him to know that I am there for him should it get too hard. I want him to know that he is not alone.

I’m struggling to find the right balance between helping and letting him keep trying. When is it helping and when is it cruel? It’s cruel what this disease has done to him. I worry that I’m being cruel too when I watch him suffer its effects when I could step in to help.

How much of this is me hoping he’ll struggle through it and that there will be another side? What if there is no other side? What if it gets worse? What does that mean for when my wife and I are gone? I try to focus on the positive progress he has made since his condition was worse. But it’s hard to do when I’m looking at my child struggle because of his condition. The thought of this being the rest of his life is too much to think about with a seven-year-old.

And there aren’t any answers, at least for now. His condition changes, his medicine changes, his body will continue to change. I try to remind myself to take each day as it comes and to take my son wherever he is that day. Doing that is one of the hardest things I have ever had to do in my life. But when I can do it, I see a little boy smiling as he creates something out of bricks. I see that sense of accomplishment on his face when he shows us what he made. And sometimes, I think things are going to work out okay.

September 5, 2017
Windows, Light and Hope

The last few months have been all about change. After a long search, I found and started a new job. We sold the house that we lived in when my son was born back in Colorado. And next month, we’re leaving the apartment we landed in when we moved to Philadelphia.

This is the apartment we lived in when my son’s seizures and side effects were at their worst. The couch by the front window is where we held him for hours during his mood and behavior. I would sit on this couch and stare out the window at the street as he spat, and hit, and screamed terrible things. I would watch the people walk by, normal families with normal lives doing normal things. I wondered if that would ever be us again.

I felt like the world was watching us from the other side of that window, too. We were in full view of the passersby who could see how ill-equipped and unprepared we were for what was in front of us. They saw us sitting on the couch reacting out of fear and desperation. They saw every mistake my wife and I made dealing with our son and with each other.

The way our apartment is laid out, the window by the couch is the only source of natural light. In an otherwise dark apartment during a very dark time, there was no other place to go. So we sat in view of the world outside so that we could see it and let in whatever light we could. We traded agony and exposure for light.

But sitting on that couch and in that light also gave us hope. No matter how dark our apartment and our life got, we could see that there was more. As our son fought against us, we could close our eyes and feel the light on our face and hope.

After a seemingly endless struggle, hope won out. Our son came back to us. He was weathered, as we all were, and different, and stunted in some ways, but he was our boy. Instead of holding my son on that couch to protect him, he would sit next to me reading or playing on his tablet. Instead of me staring at the people walking by with envy or feeling judged by them, I felt like we could join them.

Eventually, we did join them. And now, we’re taking the next step in our journey. We’re not moving to a new place with a blank slate. Our son still has seizures. He still suffers from the side effects of his medicine and the damage that they and his seizures did. We’re bringing our scars with us. But we’re bringing his progress, too. We’re bringing the lessons we learned and the closeness we feel from having survived it. And we’re moving into a place that is full of windows, and light, and hope.

August 29, 2017