I deactivated my Journey site because I could not stand to see it anymore. It was a reflection of me, and I could not stand to see myself anymore.
Since the decision, there has been a tumult of emotion. I have decided, in conversation with my beautiful wife, to start the Journey again. However, with a more positive spin on it.
We have learned a bit since my last post, and I could not deal with it. I could not stand to see myself type the words on the page that ultimately would be describing myself.
I do not have Kennedy’s Disease. However, if KD (SBMA) is the first house on the block, the disease I have is one or two houses down. I remain an enigma to my neurologist. He is determined to give me my life back. However, I see the doubt in his eyes. He is a good man, but every man has limits.
I’ve developed some new symptoms. I have something similar to TIA strokes. I’ve had about five or six of them so far. They come and go in waves. The symptoms are like TIAs, but longer and in waves. The final wave resulting in a massive spasmodic event. To say the least, they are not fun.
Additionally, something I have not thoroughly shared, is my incontinence. Not just #1, but #2, also. It’s not consistent. The incontinence only occurs when I’m having, or on the late end of a spasmodic episode. However, I don’t even feel it when it happens. I can smell it, as can everyone else. Then, I go to the bathroom, and there it is, a mess.
A third symptom, is that my legs just quit without warning.
Primarily for these three reasons, I have a barrage of tests next week. Five in four days. Transportation is an issue as I have grave concerns about my ability to not have a spasmodic event while I am driving.
But, more disconcerting, is the bare fact that new symptoms are appearing at all. Their appearance means progressiveness. The disease is progressing. I don’t think that it is progressing quickly, but it is.
I had a very dear friend that passed from ALS. I am trying to schedule a sit-down with some of her closest friends that were with her in the final stages of her life. I want to see what I can learn from them.
The pain of my mind far exceeds the pain in my muscles in joints. I am in counseling to deal with the deactivation of myself. My wife and youngest child are equally distressed.
The way I plan on putting a positive spin on my “Journey” is to do two things:
- On Wednesdays, an article detailing an accommodation or adaptation that I have made to facilitate some mundane activity of mine. I feel that this could have value to others, in that the articles may spark a bit of creativity in their lives.
- On Fridays, an article addressing a bit of scripture or other spiritual writing and how it applies to my Journey. As much of my Journey is through spiritual chaos, I will try to make sense of it in these pages.
So, there you have it. A new page of a new book of a new Journey.
We still do not have a name, but it is evil, indeed. And, I am a soldier. Soldiers, always, soldier on.
Jay C. “Jazzy_J” Theriot
PS: You can usually find me on irc://undernet.org as “Jazzy_J” If you still use the wonderful protocol, drop me a line.