Obsolete Technologies

September 4, 2019.Reading time 6 minutes.

In the year 1979, we were all forced to make a life-altering decision. With technology rapidly expanding, the world of standardization that was to come hadn’t yet reared its lemming-head. We still had choices and one of monumental consequence was forced upon every household in America. It was tougher than Democrat vs. Republican, Coke vs. Pepsi, Burger Chef vs. McDonalds. We had to choose between VHS and Betamax.

My father enjoyed the electronics boom. He researched every technology purchase and in this instance, chose the Betamax. At first, I was fine with it. When I went to my local video rental store, it was split evenly between the two formats. But slowly, the VHS side began encroaching upon the Betamax section until I only had one wall from which to choose… and then one shelf… of really old movies I’d already rented multiple times. Who remembers the curtained off section in the back where I wasn’t allowed to go? As it turns out, that little room may have decided the war because the burgeoning porn industry selected VHS as its medium of choice. Proud of that tidbit VHS owners?

I’m not bitter, though. I was 12 and for the first time in history you could record and pause television. The world of technology began changing everything around me. While Sony would lose the videotape war, its release of the Walkman in 1979 was the first bold step in portable electronics.

Consider the revolution that has occurred in consumer electronics, technology, science, and medicine since that time. Nearly everything has changed. Instead of recording television on tapes, we now download it from any number of services or record it digitally. We don’t pull a World Book off the shelf because more information than we could ever explore is at our fingertips.

That dejected 12-year-old kid in Louisville, Kentucky could never have imagined what was in store while he was scouring the rejected shelf of old Betamax movies.

There is one thing that has changed little over the years, however. While science and technology has advanced at rapid speed, treatments for children with cancer is stuck in the Betamax era. I learned this when my 12-year-old daughter, Kylie, was diagnosed with Ewing sarcoma in 2014. The stunning reality was that had I been diagnosed with the same cancer in 1979, our treatments would have been virtually identical. Push pause for a moment and consider that.

There are many reasons for this, but it boils down to economic value. One could argue that the same reason Sony discontinued the Betamax is to blame for the fact that cancer claimed my little girl: There’s not enough money in it. Ewing sarcoma is one of twenty childhood cancers, and is considered rare by scientific standards. In the United States, only around 300 children are diagnosed with it each year.

So in the end, it becomes a numbers game and children lose every time. There is money and economic success in the finding a cure to breast cancer with its 268,000 new cases per year or lung cancer with 228,000 cases. Drug companies are drooling over the potential windfall a cure for either of those would bring. I get it, I was in business a long time. Profits are a good thing.

But that was hard to explain to my daughter as she died and hard to stomach in the wake of her loss.

The simple fact is that we need to do better for our children. Cancer is the number one killer of children besides accidents. Every year we spend in excess of $1 billion on child safety products designed to prevent accidents, yet many researchers are leaving the pediatric cancer space because other areas of study are more lucrative. Private investment in research is what we must demand.

September is Childhood Cancer Awareness Month and I believe that someday, a brilliant researcher will find the cure. You might feel overwhelmed and consider this a problem too big to solve. To that I would say we have no choice. Children are our most precious resource and we cannot leave a single one of them alone without a cure.

A good start would be to sacrifice a cup of coffee or fancy lunch today and give a few bucks to a charity that funds research specific to children. If you don’t know one, might I suggest one named after a precious little girl who never saw 13.

Smiley for Kylie is a non-profit organization that exists for the purpose of funding research that will lead to safer and more effective cures for childhood cancer.

You Seem Happy

February 13, 2019.Reading time 6 minutes.

He looked across the small table at me, eyes filled with emotion and said, “You seem happy. How?”

The observation took me aback. I wish I had something clever or meaningful to say. I’m not sure exactly how I replied but I spent the next few days considering what I should have said. How? How can I be happy? Have I smoothed over the hole enough that I can be happy?

Today marks four years since I held Kylie for the last time. Four years since she breathed her last and I carried her lifeless body from our house. I remember standing at the edge of our driveway as the hearse pulled away on that cold February evening. I stared into the blue night watching steam rise with each breath – unable to shout, unable to move. Planted. Frozen with only one question rolling through my troubled mind: “What do I do now?”

Now.

Now with this unnatural thing that has happened.

What do I do now? What do I do to lead my family through this? What do I do now for my wife? What do I do now my children?

All nature seemed to listen to my question that night; silence its only reply. And it’s been silent ever since. Four years have come and gone – highs, lows, tears, smiles, joy, and pain. We’ve had graduations, gone on vacations, attended weddings, held babies, changed jobs… and I seem happy.

Seem.

Am I truly happy?

If I am happy, am I betraying her?

When I was a boy I was given a kaleidoscope. My grandfather showed me how to hold it to my eye and turn it in my hand to reveal beautiful colors in the light. I was enamored with it – constantly staring into its colorful ever-changing patterns and marveling at how it worked.

A kaleidoscope makes magic with light and mirrors. It is usually a tube containing two or more reflecting surfaces tilted to each other in an angle, so that objects on one end of the mirrors are seen as a regular symmetrical pattern when viewed from the other end, due to repeated reflection.

What speaks to me about kaleidoscopes is that if you don’t like the pattern you see, all you have to do is turn it to reveal another. And sometimes you turn from something stunningly beautiful thinking the next pattern will be even better and find yourself disappointed. But you can’t go back. Every pattern is unique and gone with the turn of the tube.

Since Kylie died, one of the most rewarding things I do is sit with other fathers dealing with either cancer treatment or devastating loss. It is both cathartic and emotionally draining. There is little advice to offer; mostly I listen. I want them to know that I’m still here; my family is still here – whether I’ve done this right or wrong, we’re putting one foot in front of another and waking up every morning. There is comfort in knowing you’re not alone. When I was a month out from her death, there were men who did this for me.

The statement I started this post with came from a coffee I had with a new friend – a dad who finds himself confronted with a dreadful situation few can imagine. I wish I had thought to tell him about kaleidoscopes when we talked because I am happy… sometimes. And sometimes I’m very sad. Most of the time the two are intertwined. They coexist together in my mood and temperament like those pieces of colorful glass. Often the shift from one feeling happens on its own and there are also times when I must work hard to shift the kaleidoscope when the pattern hurts too much.

Taking from the basic science of the device, we need a light source, mirrors, and colorful objects. When Kylie died, she became the light source for my life’s kaleidoscope. There are constant objects: my faith, my wife, Kylie’s sisters, friends, work, hobbies, and more. And there are objects that will enter anew: weddings, sons-in-law, and grandchildren she will never meet. Whatever enters my life will shine in the reflection of her light.

Am I happy? Yes, at times. I sense that she wouldn’t want anything less. But the colors are ever-fluid and shift into a pattern that might make me very sad or hurt seconds after I was happy. These conflicting emotions live together in a fragile pattern. Everything – all of it – is held up to her light.

And that’s just how it goes now.