#KennedysDisease #SBMA #Success #ExtremeSpasticity, #AcceptanceWithoutSurrender
At the time of this article’s writing, I have been experiencing internal tremors for over 16 hours without a break. I was able to sedate myself to get some sleep, but every second of every waking out they are there.
Through EEGs we were able to discern the cause is not a continuous seizure. Like everything else about this confounded disease, they are enigmatic. They just are.
We believe their origin is a continuous series of microspasms of all the muscles in my body. There is no end to them. My neck gets the brunt of the damage caused by them. It must support my head. With the internal twitching of my eyes, my neck constantly is trying to make corrections. I can’t help but to put my head on a pillow after tens of minutes of it being upright.
It is during these periods of increased internal tremors that I am effected most emotionally. I don’t want to be around people. I don’t want to interact. The tremors are minute enough to not be seen. However, they are wreaking havoc on my body. Thus, interactions with the outside universe is very divisive . If you are unaware of what is going on in the inside, it is impossible for you to understand my reactions to a seemingly invisible assailant.
I get scared. I have objects that comfort me by giving me external foci. Of course, I have my penguins. I have music. I play my specially chosen video list. I chose them subconsciously, but after much introspection, I realize the connective tissue which made them chosen. The soundtrack is constant. There are very few surprises in the audio track. In some there are gunshots, but that is only for a very small portion of the movie. All the dialog is soft-spoken. There is no yelling. For action movies, they are sedate. These external points of focus allow me to escape myself and rest.
Monday morning, I had a destructive event. The spasms were severe enough to tear muscles over a good portion of my body. My head and neck are the only portions of my body that did not suffer damage. I am still trying to recover. The tremors are spasming on these damaged muscles. Consequently, my pain has not dropped below level 5 all week, even with narcotics. I am fatigued, mentally and physically. Nonetheless, I have been able to produce a few photos this week showing the beauty of the minuscule. I look forward to the day when my body can absorb the demands of astro-photography again. There is just too much equipment and positional demands to take photos of stellar objects at the current time. Looking at the macro-environments are much less demanding.
I don’t have an ending for this post. I’m sitting here, writing, shaking and drinking a cup of coffee. My fingers are numb. I use muscle memory honed over decades to effect typing. My pointers search for the indices on the “F” and the “J” keys allowing my fingers to fall into place on the other keys.
Life goes on.
Jay C. “Jazzy_J” Theriot
Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on Freenode.net –> see: irc://irc.freenode.net/ExtremeSpasticity. You will need an IRC Client such as HexChat to connect.