Safe And Sound

It was another rough night. My son had a seizure shortly after going to bed and at least three the next morning. Fortunately, he was sleeping in our bed. It’s easier to catch the seizures and take care of him when he is with us.

Lately, he started doing this thing where, after he has a seizure, he’ll sit up and try to climb out of bed. He’s not awake, it’s more of an electrical impulse that triggers the circuits in his brain that signal him to move. We comfort him during the seizure and then perform early morning Aikido and redirect his impulse to move in the direction of his pillow. Within a few seconds, he is back asleep.

I went through the process for two of his seizures that morning. Comfort, Aikido, sleep. After the last one, I laid in bed with my eyes open and stared at the ceiling. My mind drifted to the question that I still can’t face.

What would happen if we weren’t there? Who would be there to comfort him? Who would be there to keep him safe?

The idea of him doing this alone seems impossible. The idea of him never being able to be on his own is heartbreaking. The thought that I will someday not be here to take care of him, to keep him safe, and to comfort him is what keeps me awake.

The early morning mind is cruel. It is also calculating. It takes advantage of my incoherence to pose unanswerable questions when my defenses are down. It plants unanswerable questions and then sits back to watch the show.

The two solutions I usually come up with are curing epilepsy or becoming immortal. One is just as likely as the next but neither is likely be to solved in my lifetime. And so I am left with the fear of the future. Not for my sake, but for his. Because I was supposed to be the one that took care of him, that showed him how to be a good man and sent him into the world to make his own way.

But I don’t know how to do that when I watch his body seize over and over. The more seizures he has, the more impossible it seems that he’ll be able to make his own way. I’m fighting back the inevitable reality that no matter what I do, I may fail.

I hope I’m wrong.

But even if I’m not, I’ll never stop fighting.

The Art Of Disappearing

I’ve perfected my ability to disappear. Only, it’s not a magic trick. It’s the way I have trained myself over the years to deal with difficult situations.

I developed this ability at a young age. For most of my childhood, I navigated the world alone. I figured things out by myself. Sometimes, I figured out really hard things and I was rewarded with praise that reinforced my growing belief that this was the way to operate in the world.

I wasn’t quite a loner. I had friends, but I found comfort in being alone. Friends were for making mischief and playing sports. But when it came to solving problems, I worked alone, whether the problem was a difficult project or the increasingly complex emotions that come with growing up. I solved those, too, internally, in my way, and away from everyone else.

Again, I was rewarded with harder projects and better opportunities. At the time, I saw my detachment from other people as an asset because it made it easier to shut them out when I faced a problem. But as the matters of the heart got bigger and more complicated, I started to put those matters on a shelf and not deal with them at all. I would find distractions or try to solve other people’s problems so that I didn’t need to face my own. Even then I was rewarded by better opportunities and more people coming to me for help, feeding my ego if not my soul.

But in the last few years, it became clear that what got me here was not what was going to get me there. Where I wanted to be. Who I wanted to be.

I had this moment of clarity after taking a leadership class that included a behavioral assessment. When the results showed that I was a thinker, I beamed with pride. It described me perfectly, solving hard problems, concentrating on my thoughts. But then the instructor talked about how thinkers are perceived by the people around them and I felt a wave of reality crash into me.

The thing about disappearing is that it leaves the people around me alone. It leaves them wondering where I am. It leaves them wondering if they are important to me. It leaves them disconnected in times when being together…being connected…is what is most important.

Clips from my memories started playing in my head. My wife and my friends told me in their own way that they felt alone or wondered whether they were important to me. Bosses wondered if I cared about the project or the job. And my response to these big questions was to disappear so that I could think and process. I thought about how I would feel if someone did that to me and it made me sad. I thought my wife as we watched our son get poked and prodded and seize and as we listened to doctors tell us more bad news. I thought about how when she turned to me for comfort or connection how I wouldn’t be there because I would be off trying to deal with it by myself. I felt sick.

What got you here won’t get you there. ~Marshall Goldsmith

It’s not easy to face the realization that such a core part of who I was had such a negative impact on the people around me. It’s even harder to change more than forty years of programming. But there is no question in my mind that it needs to be done.

Even with the small progress that I have made, I can see changes in my relationships. I may not be able to stop myself from disappearing, but I feel it happening so I tell the people around me so that they know I am still there. I’m more aware when I am in that place and it’s less comfortable than it was, so I don’t stay there as long. I’m getting braver and facing challenges instead of avoiding them. Most importantly, I’m starting not to do it alone. Because no one can. And no one should.

Questions Without Answers

Like many fathers, when my son was born, I had a list of things that I wanted to teach him. I wanted to be the sage, the guru that imparted to him wisdom drawn from my life experiences. I looked forward to the opportunity of leaving him feeling like his old man was a fountain of knowledge for all things. I longed for the bond that the transfer of knowledge would create between us.

How do I tie my shoes?

How do I throw a ball?

How do I tell a joke?

How do I ride a bike?

How do I catch a fish?

How do I program a computer?

How do I ask a girl out on a date?

How do I drive a car?

But after he was diagnosed with epilepsy, I began to fear the questions that I knew he would eventually ask. I went from wanting to be the person he went to for answers to the person afraid to disappoint him when he asked questions for which I didn’t have an answer.

Why is this happening?

Will it ever go away?

How do I live with epilepsy?

These questions may be the biggest questions that he will ever ask because they are the biggest questions that I have ever asked. I’m also on a search for answers, but I don’t think I’ll have them before he poses the questions to me because not every question has an answer. We may never know why this is happening to him, but it is clear that this is our path. We may never know if it will go away, but we know that is here now. And we may not know how to live with epilepsy down the road, but we are doing the best we can today.

Rarely does life go according to plan, but we are facing a life that can’t be planned. How my son is each morning, depending on seizures and side effects, determines what we can expect from the day ahead. It’s impossible to predict anything in the future when you can’t predict the next day.

In the beginning, this uncertainty shut us down. I’m not sure it could have gone differently when my son was first diagnosed with epilepsy because we were fighting for his life. But even after he was stable, we were consumed with finding answers. After four years, it has become clear that there aren’t going to be any. But instead of letting that pull us back into hopelessness, we’re trying to allow it fill us with gratitude for what we do have. Because we have today, and for a time we didn’t think that we would even have that.

I went into fatherhood expecting to show my son the things he needed to know. But maybe the most important thing I can show him is how to live without having all the answers.