The Approaching Horizon in The Stuff That's Not Interesting But Is The Most Interesting Stuff I'll Write

I remember writing the last entry thinking that I had so much to write about, but really, none of it matters. And that’s the problem.

I miss when I felt like my life mattered. I wish everything didn’t annoy me so that it wouldn’t seem so daunting when I want to write about something irritating that happened to me. But that’s just not my life right now, and that’s what has to change.

I’ve decided to take my time and figure out where I want to go, what do I want my life too look like. And that sentence reminded me exactly of what I wanted to write about. Perfect.

When I was getting my health back in order, I not only got a doctor, but I also registered with the national organization that keeps track of those who have my disease. At first it seemed harmless, my doctor recommended it because it allows me to still have verification of my illness in case I find myself without insurance again but am still in need of services. It seemed like a good idea, and it is, there has just been an interesting side effect of it.

On my birthday, I was contacted by the University of Missouri about participating in a study for those who have my disease. They are doing a study about the effects on adults because there has never been a study focusing on adults and all of the information available is based on children and adolescents. That is mostly owed to the fact that there were never adults with the disease.

My anxiety was compacted when they informed me that I am one of the oldest living individuals with my disease. Seriously. They showed me the data and asked me a very specific question, “Were you given a life expectancy at any point in your life? And if so, what was it?” I replied that when I was 10 years old, my doctor at the time sat me down and told me that as of then (the early-90’s) my life expectancy was 37.

Now, just imagine telling a child that he’s only expected to live another 27 years… what would that do to a child? If there is ever anything that explains my behavior and why I’ve made the choices I’ve made in my life, it would be this specific moment.

They happily replied to me that that was grossly inaccurate: my life expectancy is actually 42.

So if I’m lucky, I have roughly 7 years left to live.

Now I know why I’m one of the oldest living individuals with this disease.

So when I talk about what am I going to do next, I’m not saying it as some kind of abstract question, I literally mean, what am I going to make with the rest of my life? Whatever I do, it will probably be the thing I do for the rest of my life, however long that will be. So I want to take my time and make a correct choice.

So I’m booking flights and trying to find corners unexplored so far in my life. In some ways, I feel young all over again. I know that eventually, I won’t find everything so annoying. There is an end in sight.

Last updated November 14, 2018