We All Need Help Sometimes

Growing up with a busy, single mother and a rebellious, angry sister, I was used to not having help when I needed it, even when I asked for it. Eventually, I learned to internalize my struggle and figure out a solution. Externally, I looked like a clever, self-sufficient boy. Internally, I questioned whether I could depend on anyone for help or whether I was worthy of being helped at all.

That early programming stayed with me all my life and served me. The truth was that I was a clever boy, and I could figure things out. Those skills helped me navigate my childhood and transition to adulthood and a successful career. I was low-maintenance, a quick learner, hard-working, and productive.

That’s not to say that I never had help. Throughout my life, I’ve had many good teachers, bosses, and friends who were generous with their guidance and assistance. But I rarely asked for it, and when it was freely given, it often made me feel uncomfortable and that there was something wrong with me because I couldn’t do it by myself. Receiving help made me feel ashamed. That shame motivated me to need less help in the future. That made me a better employee and resulted in more opportunities. I had it all figured out.

In the words of Marshall Goldsmith, ‘What got you here won’t get you there.”

In hindsight, the pseudo-reward cycle between shame and progress is neither healthy nor sustainable. No one can do everything and solve every problem, and that’s not a sign of weakness—it’s reality.

Nowhere was that more evident than when our son was first diagnosed with epilepsy. And I don’t mean medically. I could not have done what the doctors, nurses, therapists, and support staff did to keep our son alive and put him back together during the first few years.

There were other areas where I needed help, but rather than ask for it, I, again, internalized those needs. I needed to be strong and carry on. I could take care of my fears on my own. I could deal with the stress those years put on my marriage and still focus on my career. The more I realized I wasn’t doing any of those things, the more shame I felt and the more I turned inwards.

That cycle didn’t only affect me; internalizing it also distanced me from my family, especially from my wife. Not only was she dealing with everything I was, but she bore the brunt of the load and was the target of our son’s outbursts and anger. She also saw what was happening to me and was unable to help because I couldn’t let her.

That led to many hard years. When I finally sought help, it was almost too late. A family can only take so much before it crumbles.

That help came through therapy. That help came from an incredible wife and partner. That help is why our son and family are where we are today. It showed me that asking for help is not a weakness, that I am worthy of being helped, and that there are people who I can depend on for help.

It also helped me realize that people want to help. Being vulnerable and asking for and accepting help brings people closer. I’ve seen that in my relationship with my wife and hope to instill that behavior in our son. He’s going to need help as he navigates his life and I want him to know that asking for it is okay, that there are people who he can depend on to help, and that he is worthy of being helped.

Like every change, it’s a journey. I still have a lot of programming to unravel. I’m better at asking for and accepting help at home than in other environments, like work. But it feels like I am on the right path.

Happy Anniversary, Epilepsy

Four years ago this week, my son had his first seizure.

Four years.

Almost half his life.

He doesn’t remember the time before. Most days, neither do I. Our memories are of our new life that started the night his body contorted and stiffened on the floor of the arcade. It was the night that time stopped as we prayed that our son would come back to us and when I held his frozen body in a thunderstorm waiting for the ambulance to arrive.

Even though his second seizure wouldn’t be for nearly two months, the fear and uncertainty that the first one had caused lingered. It turned out that time was the quiet before the storm…that feeling you get when the clouds darken and the air changes and you know the storm is close. The air filled with the same electricity that would soon wreak havoc on my son’s developing brain.

And then it happened. The second seizure burst free just as my son sat in his seat onboard an airplane. Another thirty minutes and the plane would have been in the air but, thankfully, the crew got him safely off the plane and on his way to the children’s hospital. Within a few months, his seizures would be out of control and we’d be back in the same hospital learning firsthand what status epilepticus was.

It would take nearly two years before my son was stable. But even then, we were still adjusting medication, dealing with side effects and behavioral issues, and occasionally using his rescue medication. He was stable, but not living the life we had planned. But by then we were beginning to realize that we needed a new plan.

Four years in, we’re still adjusting that plan. There hasn’t been a day that has not been affected by epilepsy. He’s had countless seizures. He’s been on and off medications and suffered endless side effects. He’s had a barrage of blood draws, EEGs, and other testing and had a myriad of therapies trying to restore what epilepsy had taken away. He’s been isolated from his peers and falling more behind in a world that doesn’t wait for people who can’t keep up, or are different, or need help.

After four years, I thought we’d be further along. I hoped he would outgrow his seizures or we’d at least have them under control. I thought we would have figured it all out. I thought we’d be able to get back to normal. But, instead, we had to change our definition of “normal” and learn how to live life with different expectations.

In these four years, I’ve learned a lot of other things, too. I think I am a better man, husband, and father than I was before this started. And we’ve had so many wonderful experiences and met some amazing people on our journey. But I can’t bring myself to be grateful. I can’t allow myself to acknowledge the things that are good because I don’t want to reward the monster that continues to attack my son. Our life is what it is in spite of epilepsy, not because of it.

Four years is a long time. But I know we have many years to go. We didn’t ask for this, and we don’t want it. But it looks like we’re going to be together for a while.

So, Happy Anniversary, Epilepsy.

I didn’t get you anything.

Because I hate you.