I'm here.

I have wanted to share more, to be more transparent, in an effort to help others who may be in a similar spot to me to not feel so alone. I’ve wanted to do this via Youtube because there is something about seeing another human that helps us feel not so alone in our struggles. And I’ve tried. But I have to be honest, for the moment and maybe forever, it’s too hard. Too hard to actually film and then edit. To not only feel my struggle through the filming but experiencing it again through editing. It’s too much of an emotional toll.

So, I’m here again. Writing. Not sure if I’ll press publish on this because it’s all so personal. To struggle, to be disabled, to feel hopeless so much of the time, and yet not giving up. To try again and again because maybe one day it will be better. Maybe one day there will be a cure… or a miracle.

Quick recap for those new here: I have trigeminal neuralgia. Primarily I experience type 2 - constant pain, but I also experience type 1 which is sudden shocks of pain (like an electric shock through your facial nerves). I experience chronic fatigue, exercise fatigue, brain fog, insomnia, etc etc etc. There are also a whole host of other physical symptoms I experience I am assured have nothing to do with trigeminal neuralgia as a cause or outpouring of that experience and as such cannot be explained.

Every day I am in pain, exhausted, and barely getting by. And every day, despite the pain, I try to find what is beautiful. Lately it’s been the crepe myrtles blooming. Their blossoms fall to the ground like nature’s confetti. It’s so sweet and it makes my heart feel open and lighter. So for five to ten minutes every day I look at the flowers, the ground and the table and chairs by my old grown-over garden, where the blossoms lie and forget for a moment that I’m in pain, that I will go back to bed after this, that nothing in my life is anything like I expected it to be.

And it may sound trite to find the beauty but it is often the thing that helps me bridge my days together when so much of my days are simply centered around managing pain. So I keep doing it. I keep looking for the small things that have become the big things like tiny blossoms that became nature’s confetti.