For some unknown reason, I’m fascinated by technology lately. Not current technology, but upcoming technology. I read that by the year 2030 (which sounds so far away, but do the math) there will be so much pressure on people in America not to drive, that we will mostly be a country of self-driving cars. From 30,000 car fatalities a year, to a fraction of that number nearly overnight.
The internet has basically had about three iterations. It started with what is now called Web 1.0. The internet for us was essentially an online encyclopedia. If you wanted to look something up or find something out about a company, like its number and open hours, you could search for it. Then came Web 2.0 which was the social media craze- where you and I began to interact with one another, a borderless world of instant pen-pals. Web 3.0 is called the Internet of Things. Where everything in the world will be interconnected and talking to each other. We’re starting to see it in our cars, our thermostats, our refrigerators, our cell phones- I even have a garage door that I can open with my cell phone from anywhere in the world. I’m not sure the usefulness of that, but can any of you open your garage door remotely from Liberia?
In thirteen years, we could have a country filled with driverless cars that communicate with each other to minimize traffic, accidents, and bird flipping. We’ll have to figure out another place to channel our road rage. An entire industry will be built on in-car entertainment.
And medical technology will see advancements at a rate that healthcare has never seen. Mark Zuckerberg, you know, the Facebook guy, and his wife just declared their intention to put in place a plan and initiative to cure, prevent, or manage all human disease before the end of the century. Did you see that little three letter word? ALL.
Tiffanni’s longtime neurologist just retired a few weeks ago which sent us into a kerfuffle trying to decide where do we go from here. My parents went to an informational meeting with a young Huntington’s specialist who asked to see Tiff. So, Friday we have her first appointment with the new guy. But I’ve heard some pretty amazing things about him so far. I have a former student in medical school at UAB that had a neurology lab with him that she said “inspired her”. In that lab he told the students that he believed Huntington’s would be the next neurological disease to be cured. In fact, there is a drug that is in Phase 2 testing now that inhibits the disease from ever actualizing. I have no idea what Phase 2 testing is. Could be the rats, I guess. But exciting nonetheless.
It doesn’t take a lot to put two and two together about my greatest fear. I’m certain that many of you have thought it and just not asked. Huntington’s is a neurological degenerative disease that is passed down through heredity. My children have a 50% chance of having it. I have three kids. The math stinks. The disease typically shows up in the mid-thirties, so I’m in an 18 year window of hope and fear- not sure what the word is for that unique emotion. Eighteen years sounded like a million when I was a kid. Now that I’ve lived over two of those windows, Time feels like a spoiled brat demanding his way at the Walmart checkout line.
Over the last week my brain has made me think a lot about the finality of this disease. That my kids will hopefully see the end of it forever and that Tiffanni will just see the end. That my kids will see the end of it from one angle and Tiffanni will see the end of it from the other. Like standing on two sides of a chasm. It makes me think of Jack and Rose in the ice cold waters of the Atlantic just after the Titanic sank. I remember thinking as he drifted to the bottom of the ocean, you couldn’t wait one more minute? The rescuers are right there!
I once read that thousands of soldiers died after World War II had already ended. They just didn’t get the news in time. And I feel this hole in my heart for Tiff. In the grand scheme of the history of the world, she was born just a minute too early. Just seconds before someone arrived with the antidote. Just moments before rescuers rowed up with life jackets and warm blankets. An instant before the pardon came through. This tiny little minute between life and death. All of our lives would have been different. If she, if we, could have been born just a minute later.