Category Archives: Restrictions

Bored? — Warning — Whining Follows

#KennedysDisease #PsyhchologicalEffects
Bored? — Warning — Whining Follows

OK. I should be happy. We are getting this disorder under some measure of management. However, I’m not. I’m going to follow this under “got an inch, want a mile.”

I am driving short distances. I attended a 2-hour seminar last night on Digital Marketing. It was phenomenal, not only the information, but being able to be free. There, of course, were additional meds involved, but the result is that I made it. I survived it. I took notes and contributed some bits of information to the seminar.

I’m involved in publicizing the effects of Kennedy’s Disease to a global audience. That is cool. I’m gaining global recognition for my frankness and my ability to get the word out. Great.

I’ve contributed to beta-testing of a release of AmiKit and have received recognition in the credits for working with a global team to pick out bugs and work to validate the release. Wonderful.

So why am I so …. blah, or meh?

I want to do things like I used to do. I can’t and likely never will.

My loving wife says I got a taste of freedom and it triggered these emotions. I say that I got a taste of what was, and I want more and I can’t have it.

I love digital communications. I’ve been involved with them directly since 1992 and indirectly several years before. My first webpage was published in 1994/5 (I can’t remember exactly when I learned HTML.) My first time on a chat client was during the Oklahoma City Bombing, April 19th, 1995.

What I want is interaction with people, outside of my home and to be able to do things for them.

I was working on a fireworks display for my friends in another city. I can’t do that now. I am hopeful that I may be able to travel in the future, but I can’t do that now. At this point, I feel like Veruca Salt, shouting “I want it now!”
A-veruca-salt-270x250
I should be ashamed of myself. But, I’m not. Not yet. I want to do something physical of merit. And, I can’t

O.K., I’m going to try to stop whining and get on with life.

What I hope people understand, is that a disease like #KennedysDisease doesn’t just affect you medically. There are financial, physical, social as well as emotional issues to be addressed. I know, I should heed my own words in the article “Why Not to Despair” and I will. I’m going to read them now.

Hopefully, I can teach me something.

In Christ,

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.

2018 February 4th: Friend Definition, addendum

This “journey” is definitely educational.  I’ve got to extend my definition of “friend” to include people who do not a big deal when my legs go out and then even less of a big deal when I can’t continue to play cards.  They handled it better than I did.

Wow.  That is all I can say.  They made me feel like my disability was just a “thing” and a little one at that.  No drama.  “Oh, you can’t throw cards anymore?  Cards were only part of the evening.  Talking was another part.”

I didn’t want to leave.  I didn’t want to run and hide, ashamed of the wretch my body has become.  It was just a “thing.”

I pray when this world is over, their maker remembers this and says, “Yep, you’re good. Go on.”

Small drops of kindness create a tidal wave of compassion.

I am learning how to lean on friends.

I have friends that I can talk to at 2 am (when they should be sleeping, but I’m glad they don’t).  I have friends that show me the beauty of the world, either painted, photographed or videoed.  I have friends that push me to further my knowledge in my interests. I have friends that keep me in stitches with idiotic memes that touch my heart and tremble my soul. I have friends that become my mother when they have to and stop when no longer needed. I have friends, long passed, that come to me in my dreams and tell me they held their faith to the end, they expect the same from me.

I am undoubtedly leaving some out.  And, for this, I am truly apologetic.  They deserve to be listed and rewarded.

Above all, I have a friend in Christ.  He continues to walk with me (carry me like 98% of the time).

The interesting thing, is that not all my friends consider themselves Christians or even believe in God, or even a higher power.  Diversity is what makes them strong.  They are my warriors. They do battle against this enigmatic wretched disease and put it in its place.

Thank you all, I adore each of you,

Jay C. “Jazzy_J” Theriot