It’s Time To Stand Up

It’s been a while since I’ve sat in front of the computer to write. It’s also been a while since I’ve felt the need to engage with the outside world. But, to be honest, who would want to engage with the world in the state that it is in?

A powerful country invaded another in an ongoing war. There’s been a string of mass shootings, including another at an elementary school. The highest court in our country is slowly stripping away the rights of its people while, at the same time, making it easier to carry weapons of war capable of tearing through the children in that elementary school…children the same age as my son.

The outside world is a shit show.

It’s only going to get worse. Our country is reverting to a time when women and people of color didn’t have rights. Every group that clawed and scraped to get recognized and to finally see some protection or equality or benefit is going to have it taken away from them.

Our job as parents is to love our children, protect them, and prepare them to go out into the world. We try to help them understand what is happening and make sense of it. But that is hard to do when we don’t understand it ourselves.

That’s not entirely true. I understand it. There are people with money and power who are trying to transform the world in a way that gives them more money and more power. They’re dehumanizing the “other” so they can take away their identities and their ability to prevent what is happening, making it harder for them to vote. They’re rigging the game to create a world full of people who look just like them.

My son doesn’t quite look like them, and the thought that keeps going through my head is, “how long before they take away his rights?” Even in the gun debate, the side that wants to arm every person with an assault weapon says that the problem isn’t guns, the problem is mental health. They’re hand waving to distract us away from the carnage that these weapons do by pointing to a different villain and pretending that if we can defeat it that we won’t need to do anything about guns. The reality is that we do have a mental health crisis stemming from the way we talk about mental health, the stigma associated with it, and the lack of affordable, quality resources that we offer. And we have a gun problem. But the overlap between them is so small that solving only one of them won’t have a meaningful impact on the other. We need to address both.

My fear with the holding up mental health as the scapegoat is that, rather than investing in better health care and addressing the problem, we’re going to start taking away the rights of people with mental health issues. Taking something away is cheaper and easier than committing resources to address the problem. They’ll start with something easy like taking away guns from those with a diagnosed mental health issue, but its a slippery slope to taking away other rights, too, that eventually will include the right to vote. And it will be the people in charge who decide where that line is between “normal” and what constitutes a mental health issue that poses a threat. (Spoiler: we all have mental health issues to some degree…that is being human and IS “normal”).

I am not one who normally shares his opinion on these matters. My nature is to avoid conflict and to stay invisible stemming from trauma in my past. These issues are upsetting and, while I have an opinion about them, the impact of the issues is not immediately relevant to me. No one in my circle needs an abortion. No one in my circle was a victim of gun violence. At least, that’s the story that I tell myself so that I feel justified in staying silent. I layer on all the possible consequences of sharing an opinion…conflict, losing relationships, all the way to physical harm to me or my family. Those fears have kept me safe. But they’ve also kept me from being seen.

There is another problem with staying silent.

This is a poem with a complicated history by Martin Niemöller called First They Came written after World War II:

First they came for the Communists
And I did not speak out
Because I was not a Communist
Then they came for the Socialists
And I did not speak out
Because I was not a Socialist
Then they came for the trade unionists
And I did not speak out
Because I was not a trade unionist
Then they came for the Jews
And I did not speak out
Because I was not a Jew
Then they came for me
And there was no one left
To speak out for me

First They Came by Martin Niemöller, 1946

I’ve been thinking about that poem a lot lately. Different groups (for now) are being targeted, but history is repeating itself. The people in charge are systematically targeting the “other” under the guise of nationalism, convincing segments of the population that the “other” is evil and attacking “true” Americans. They spew lies about scarcity and how the “other” is stealing from them and pretend the current landscape gives every group a fair shot at opportunities. They believe themselves to be the victims, ignoring the hundreds of years of oppression and persecution, and so much so that they don’t want “that” history taught in schools.

Those in charge have also convinced broad segments of the population that they are victims, too. They’ve activated these groups to fight for their cause by making them believe that they are on the same side as the leaders of the movement. The irony is that these groups don’t realize that, while they might look like the ruling class, they’re an “other,” too. But our lack of critical thinking skills, our willingness to be a victim and to need someone to blame, and our lack of empathy blind us to this manipulation and cause us to focus only on our differences and need to “win” by making the “other” lose.

These groups mobilize and attack the source of their perceived struggles; usually the same people the ruling class has oppressed for generations. They continue the oppression because, somehow, giving rights and protections and recognition to the “other” takes away from the rights of the majority. Because, for some reason, it’s impossible to be equal. Rather than lifting the “other” to be on the same level, they believe that raising the “other” lowers the status and privilege that the majority has enjoyed throughout history.

The people that are being attacked may try to speak up, to organize and rally and raise awareness of what is happening. Some just take it because that’s how it has been for them all along, anyway.

Then, there are the rest of us, not directly affected so we stay small and silent and hope that they don’t eventually come for us or someone we love. (Spoiler: it’s only a matter of time.)

The frustrating thing is that if you watch the news, you’re led to believe that these opinions come from the majority. They don’t. If you asked every person whether they think it’s a good idea to continue to allow assault weapons with extended clips to be handed to civilians, I’d bet the answer would be “of course not.” If you asked every person whether the woman should have the right to decide for herself what to do with her body, the majority would say “yes.” But we don’t ask everyone, and the majority don’t offer their opinion or don’t think it matters. Hence, the people with the money and the power manipulate the system to force their view on the rest of us until it becomes our reality. But, again, it doesn’t affect us, so we stay silent.

Staying silent is a choice, and I think about how my choice to stay silent affects my son. Not just for the inevitability that he will be impacted by these changes, but also the example that I am setting for him. I worry about him a lot. I worry about him fitting in. I worry about him being hurt because of his differences. For me, the solution when I was young was to be invisible, but I want so much more for him. I want him to love himself, to be proud of who he is, and to surround himself with people who feel the same. I want him to feel confident and brave enough to show his full self, to believe in things, and to be willing to stand up for those beliefs.

But if I want him to do those things, I need to do them myself. Not just to model the behavior for him, but also to be seen myself. I don’t want to look back on my life and simply have survived it, I want it to have meant something. That’s not to say that I have to have an opinion about everything or always be standing up for something. But if I stay silent and stand for nothing other than myself, then I will have been part of the problem, and my son will likely repeat the pattern.

If you’re reading this blog, you probably have someone in your life who is considered an “other.” You might be benefiting from assistance to give that person a better quality of life or an opportunity to thrive in this world in spite of having a disadvantage. You are probably also empathetic because you’ve seen how hard life can be and the struggle that comes from being different. I know it feels safer to stay safe, to stay invisible, and to not speak up. But we’re all going to have to speak up, either because we find the courage to stand up now when so many are under attack, or because eventually we’ll need to because they finally came for us.

This post is my choice to stand up now.

 

Our Story – National Epilepsy Awareness Month

Recently I attended a class where I needed to give a 4-minute talk. Inspired by National Epilepsy Awareness Month, I took the opportunity to share our story with my classmates.


A little over 6 years ago, my company offered me a new position that would move my family from Colorado to Philadelphia. I had been to Philadelphia for work many times, but my family’s first visit was shortly before our move. We flew there together and my wife and son explored the city and hunted for houses while I worked.

One night, after a long day of house hunting, we went to an arcade to play games and have dinner. My son had a fascination with Guitar Hero and spent a good chunk of the night shredding the plastic guitar to AC/DC.

When we were done, we headed down to the exit to wait for a taxi. I remember there was a thunderstorm, and we stayed inside the lobby watching the rain and lightning. Before it arrived, my wife and I both noticed that something was happening with our son. He stopped responding, and his body had stiffened. At first, we thought he was joking but, when he wouldn’t come around, we knew something was wrong. I held my son as my wife called 911. Instead of a taxi, we left the arcade in an ambulance and headed to the hospital.

Finding yourself in a strange city, late at night in the hospital waiting for the doctor to tell you what happened to your toddler is an experience that I wouldn’t wish on anyone. The rooms were full so my son was on a bed in the hallway as we watched the chaotic energy of an urban hospital and the activity around us. Eventually, the doctor confirmed what the paramedics had told us what likely had happened, and that was that my son had a seizure. Because it was his first one and because he was slowly recovering, they sent us home.

A few days later, we left Philadelphia to go back to Colorado. There were no other signs or lingering effects from his seizure, so life went back to normal. We packed up our house and headed east.

Once we moved, we spent time exploring our new home. Eventually, we stopped worrying about epilepsy and seizures. But epilepsy wasn’t done with us. A few months later, my wife and son were boarding a plane to visit friends in California when my son had his second seizure. Fortunately, the flight crew was able to get my family off the plane and they found themselves in another ambulance, this time headed to the children’s hospital.

The second seizure came with an official epilepsy diagnosis. At the time, I didn’t really know what epilepsy was other than what I had seen in the movies. Even though seizures and epilepsy are common, that is true for many people, so I want to share some information with you.

First, what is epilepsy? It’s a seizure disorder characterized by uncontrolled seizures.

More than 3 million people in the United States have epilepsy. 1 in 26 people will develop epilepsy in their life. 1 in 3 people lives with seizures that aren’t controlled by treatment. Sometimes, there is an identifiable reason why someone has seizures, but 6 out of 10 people with epilepsy don’t know the cause.

Unfortunately for my son, the last two bullets apply to him. We have not been able to figure out what causes his seizures and, even though we’ve tried different medicine, put him on a special diet, and had a device called a VNS implanted, he still has seizures almost every day.

The reason I wanted to use my time today to talk about epilepsy, in addition to it being such an important part of my life and my family, is because November is also Epilepsy Awareness Month. If you didn’t know anything about epilepsy before today, I hope I gave you a glimpse at what it is. And if you didn’t know anyone before today who was affected by epilepsy, now you do.

While epilepsy is a big part of our life, I wanted to end my talk on a positive note. While my son does still has seizures, he is also a very happy, energetic 11-year old. He loves hockey and baseball, and last year he was selected to the All Star team for his baseball league. This picture is one of my favorites, and that’s him sliding into home plate underneath the tag of the catcher. He scored and wound up receiving the game ball as the game MVP.

Thank you for listening to our story, and if you have any questions or want to learn more about epilepsy, please reach out!


Resources:

Epilepsy Foundation – National Epilepsy Awareness Month

Epilepsy Foundation and Epilepsy Foundation of Eastern Pennsylvania

Epilepsy Dad

 

A Really Big Week

Over the summer, two huge things happened during the same week.

Professionally, I delivered a keynote speech at a conference. I’ve given many presentations before, and public speaking is something I want to do more. But this was much bigger than any talk that I had given previously.

I started to prepare for my talk weeks in advance, but, at the same time, another important event was looming on the horizon. The same week as the conference, we would be dropping our son off at sleepover camp for the first time.

Our son has rarely spent a night without either my wife or me there. And, when I say rarely, I mean once. No sleepovers with friends. No nights with the grandparents. One night in his entire life he spent with our nanny so my wife and I could go on an extended date night in the city and stay in a hotel, three blocks from our home. And now, we were going to send him away for a week.

Our local Epilepsy Foundation affiliate runs a program called Camp Achieve that is tailored to the needs of kids with epilepsy. It’s a week-long summer camp where the kids do proper summer camp activities. They swim and play tennis and have water balloon fights. They’re surrounded by other kids that are like them. Many of the counselors are former campers, and they are rounded out with volunteer doctors and nurses and other medical professionals. We knew and trusted so many of the volunteers because they were our nurses and friends we met through the Epilepsy Foundation.

Even so, the idea of leaving him for a week tore at my soul. I was worried about him, not just medically, but emotionally. I wondered how he would do away from us. I was worried about my wife. I was trying to be strong but leaving him was one of the hardest things I’ve ever done…right up there with giving a keynote speech.

When I was still weeks away from the overlapping events, working on my speech provided a distraction. But as we got closer to camp week, I was having difficulty focusing. I didn’t work on my speech as much as I wanted to. I also wasn’t dealing with the impending separation from my son. Before I knew it, it was time to drop him off.

In life, there are easy days, and there are hard days. The day we dropped our son off to camp was a tough day. I was so focused on the process of checking him in that I was unprepared for when it was done, and we were shown to our car. The rest of drop-off day was a waste, as was the next day as my wife and I checked Facebook every two seconds to see if the camp had posted any pictures of our son.

But the conference was still happening, and it was only a few days away. I needed to focus and, thankfully, my wife helped, and her performance background proved instrumental. We spent the next few days shifting our attention away from Facebook (it helped that we started seeing pictures) and towards my talk. But each of those days was an exhausting marathon trying to keep my attention where it needed to be. Every night, I felt like I had given everything and crashed hard, only to repeat it the next day. Eventually, there were no more days.

The day of the conference was the day before we would pick up our son. It felt like I just needed to get through this one, really big, last thing. Even though that morning, I couldn’t remember any of what I was going to talk about, I somehow managed to calm my nerves enough to deliver what I was told was a solid talk. The euphoria after the conference was a mix of relief and excitement. My wife and I celebrated making it through the week with an intense ping pong competition, then went to bed knowing we’d see our boy in the morning.

We made it.

Pickup day was an orchestrated event, so even though we saw him outside his cabin, we resisted the urge to run over to him and hold him. But my heart felt so full when he signed “I love you” to us with a tired smile. When the ceremony was over, I held him so tight, and it felt like the perfect reward for making it through the week.

My son had a great time and wants to go back. Next year, though, I won’t sign up for anything the week of the camp. Maybe my wife and I can even go away together.

Just not too far away.