Category: community

Repeating History

In case you haven’t heard, we have a big election coming up in the United States. To be fair, many countries are seeing their politics follow the same loud, divisive, truth-adjacent bullying trend that was made popular by the success of one of our “candidates” in 2016.

It’s even worse this year.

It’s also terrifying to think this is the world my son will grow up in.

Candidates are being elected and staying in power by peddling fear and hate for the “other.” The easy group to target is immigrants. Falsehoods about their choice of protein and taking over small towns across the country continued to spread long after they were disproved. But it’s a slippery slope to go from immigrants to those who support immigrants to any group that is different or believes differently. History has not been kind to people like my son, for example. People with disabilities were lumped into the “other,” the inferior, and the unworthy of life.

Too many people believe and repeat the blatant lies coming from these candidates, either because they align with the way they want the world to be or because we have lost the ability to think critically, question what we are told, and discover the truth for ourselves. Even when all the data and science support a particular fact, if it goes against what they want to be true, they’ll lean into their doubt. They’ll claim the other side and media are biased for saying the same thing (e.g., facts), and they’ll listen to the pundits in their echo chamber because surfacing “alternative facts” makes them “unbiased.” They think their doubt makes them clever. They’re mistaking cleverness for ignorance.

They think their doubt makes them clever.
They’re mistaking cleverness for ignorance.

Single-issue voters are willing to look the other way and ignore the unpalatable aspects of a candidate as long as the candidate holds (or says they hold) the same position on a specific issue. “Sure, this candidate is a felon, racist, sexist, fascist dictator, but they’re pro-life, which is the only thing that matters.” Worse, they’ll combine their logic with the doubters above and try to justify their position by convincing themselves that the other labels are misunderstood, out of context, or “just politics.” They can’t believe someone who agrees with their position on a key issue could be a monster, even if the candidate only claims to agree to get enough votes to push a much more dystopian, self-serving agenda.

This includes people who believe that our political system is broken and that bringing in an outsider is the way to fix it. If one candidate represents the establishment, regardless of their policies or fitness to lead, they won’t get the vote. Even in a crisis where the country would benefit from someone who understands the system, and even if the non-establishment candidate is unqualified, a criminal, incompetent, and dangerous, they believe that voting for and electing an outsider will make the country better.

When I was in history class, we read about World War II and asked how a country could elect a party and a person who would ultimately commit such atrocities on the world. I couldn’t understand how millions of people could minimize or normalize the extreme rhetoric, the hate, and the violence. It seemed so unfathomable that anyone could look the other way or fully support their country’s direction.

But here we are, nearly a century later, repeating history. People are spreading the idea that our country has lost its way and that we need to go back, that outsiders are a threat to our national identity, and that the other side is what will cause our country’s collapse. Fear, hate, us versus them—it’s the same playbook. And the party and its people are going along with it because it’s more important to win and be in control than to be good and do good. When you’re willing to win at any cost, humanity loses.

It makes me wonder if, 100 years from now, students will sit in a history class wondering how we let this happen. They’ll have the benefits of time and hindsight to see the similarities between parties trying to make their countries great again at any cost because they were too focused on looking back at what they thought their country was instead of looking forward to what it could become.

Perceptions of Time

A nurse led us into the recovery room, where the first thing that struck me was the stark change in my son’s appearance. His familiar Bryce Harper haircut had been replaced by a closely shaved head, but it wasn’t just the missing hair. As we rounded the bed, my wife and I froze. There, across our son’s skull, were the sutured incisions, and beneath the skin, the faint, raised outlines of the leads that connected deep into his brain, extending down to the generator implanted in his chest.

We both gasped, instinctively reaching out, trying to bridge the chasm between shock and reassurance.

I don’t know what I was expecting. Maybe nothing could have prepared me for the reality of seeing those physical marks—a visceral reminder of just how serious his condition is. It was more than jarring. It was a harsh collision with the truth that no matter how much we try to normalize life, this—his reality—is never far away.

Seeing him reminded me of the last time he was in a recovery room after having his VNS implanted. The visible signs of that surgery were less intense. However, it was still our little boy sleeping on a bed in front of us who had, only hours earlier, been sedated and opened up on an operating room table, then carefully stitched back up after inserting a few extra parts.

The DBS and the VNS were only two of the many procedures that our son has had at this hospital, the same hospital that saved his life and the same hospital that continues to look for ways to improve it. He’s had almost every type of scan, given gallons of blood, taken piles of pills, received tons of therapy, and otherwise been poked, prodded, and tested in every way possible.

After he woke up, he was moved to the neurology floor, which had been our second home for a long time. Once we settled into his room, a wave of comfort washed away the shock and anxiety of the surgery. With that comfort also came the familiar change in the perception of time.

Time on this floor doesn’t pass the way it does in the outside world. Inside these walls, it feels suspended, each moment stretching out between visits from the doctors, nurses, and support staff. We’d sit on the blue couch that doubled as a bed, gazing through the windows at the city rushing by below. We’d try to fill our time with distractions—phones, TV, bingo—but no amount of distraction makes the intervals between visits any shorter.

Minutes stretched to hours stretched to days as they monitored our son, and we waited our turn for the final scans he needed before we could go home. To our real home, not this second home. To the real world, not this isolated, supportive, comfortable world. To the place where we would now wait, again, for our son to recover and to see if the procedure and the device make a difference.

Looking at the past, at everything that happened to get us to this point, time passed in a flash. In the hospital, in our bubble of comfort and support, time stood still. Looking at the future, waiting for another answer, time stretches out for eternity.

Milestones

The Latin is “milia passuum,” meaning a thousand paces. The Romans also erected stone markers at mile intervals to notify the passerby of distances covered or the number of miles to go to reach their destination.

The Lower Merion Historical Society

We sat in our chairs among other parents, siblings, grandparents, and friends. The gymnasium was filled with nervous energy as we waited for the ceremony to begin.

It was a day that we weren’t sure would ever happen. For 10 years, my son struggled with unrelenting seizures, medication side effects, and behavioral issues. After he was stabilized, although never seizure-free, he faced social and intellectual challenges in learning environments tailored for students who were not like him. At the same time, my wife and I fought school districts that seemed motivated to make him disappear. That was until we found his current school.

For the past 3 years, he was in a place where he belonged. He was in a place that saw him for who he was and celebrated it. He was surrounded by peers on similar journeys and was able to bond, make friendships, and learn. When we received the results of his recent neuropsychology test, it showed progress. He was below his grade level, but there was progress. After his testing a few years ago, the doctors predicted only regression. We started looking at functional schools, assuming the academics would be too challenging. That was until we found his current school.

As I took it in, Pomp and Circumstance began playing, and the room collectively turned to face the door. Our son, dressed in his blue suit and tie that matched the school colors, led the procession of 8th-grade graduates to the stage.

I looked at the faces of the families around me in the gym. I listened as they spoke about their experiences with the school and how proud they were of their children for reaching this milestone. My heart swelled as I watched the video the school made, combining pictures and videos of the students being interviewed about what they learned and what they would take away from their experience at the school.

When it was time to hand out diplomas, I walked to the back of the room and hid behind my camera. I’ve gotten to know many of the graduates and their families, and I knew it would be emotional for everyone.

There is a tradition at the school where the teachers put together an acrostic poem using each student’s name. As each student stood on the stage, teachers took parts to read. Every line of every poem showed how well they knew each student with a great mix of pride, humor, and recognition.

My son was the last to the stage. He stood tall as he climbed the steps, but I could tell he was nervous. The anticipation of this day and this moment had been building for weeks. As he stood to the side, the teachers read his poem, which, appropriately, included a Marvel reference. He looked so happy when he received his graduation certificate, and he and his teachers exchanged big, warm hugs.

And then it was done. Students, faculty, and families came together and filled the gym with love, and pride, and gratitude. I found my son in the crowd and he fell into my arms as I gave him a long hug. My wife came over and we all embraced and shared the moment as a family.

There are milestones and there are MILESTONES, and this was definitely the latter. It is a moment set in stone to let us know how far we have come along our journey, even if we don’t know how far we have to go.