Bedtime Soon

I want to say that I know you might wonder why I write this blog. It sounds crazy. I totally agree. The problem is that it isn't crazy. Someone just removed the science. If I removed knowledge of something extremely rare from science especially something this complex and rule-breaking, it would sound crazy if I tried to explain it.

Is it morbid? Perhaps, but science comes first. Plus, I want to properly explain my condition to my family and friends. Perhaps someone will take this all and find the original science. There were numerous subjects. Easily more than 100. Enough for the researchers to figure out all the steps and science. They knew of each step before most of the subjects got to it, which meant they had seen it play out over time previously. The first stage is the longest, so perhaps that's why more people went through it. It appeared to be a solution but instead it was a temporary reprieve with a horrible if very consistent progression and ending.

They knew what might cause the patients to progress faster or die sooner. They took pictures and documented everything. All that work, gone. Leaving anyone with the condition without a hope from modern medicine.

As for me, knowing it's a progressive, irreversible terminal condition without anyone in medicine that will believe me, I can make my own choices and live the best life I can. That's what I've been doing since my 2012 transition. I've been much happier and more free knowing that my time was limited and I had to make the best of it.

I've known all year that it would continue to worsen and its actually been true but there have been sharp downturns with some better moments thrown in and I've persevered.

The worst is still ahead, but I've had a lot of practice getting prepared for it. I live one day at a time and take nothing for granted. I imagine I have tomorrow, but I have no idea how it will go. It could be my worst day yet. That's just how it goes.