Posted on January 5, 2020
Well, I have some ideas I would like to put into reality for this year. There are no advocacy groups on social media for idiopathic neuro-muscular disorder. There are advocacy groups for named disorders, but none for the unamed varieties. I feel there is a big grooup of people out there that would love to have a place to converse about their issues.
The group will be heavily moderated. As, if someone attacks someone, they will be gone. It will be a haven for those that need to speak of their issues. I have guidelines to write before I make the group publicly available. My hands don’t always like to type. My voice is not always conducive to voice recognition. Thus, the writing of the needed guidelines will be my biggest hurdle. Not because of lack of direction, but be the physical logistics behind making said guidelines.
I don’t wish to speak of my issues any longer unless it is to help someone else. This will be a challenge for me as many times, my issues are all that I have. But, my hypothesis is that communing with others in similar situations, we will begin to share a camaraderie transcending our issues.
We will see out that goes.
Another idea I would like to bring into reality is a local advocacy for physical accommodations in the infrastructure of my home parish of Terrebonne. The structural accommodations for the mobility impaired are severely lacking. This will require me to address the parish government and exercise diplomacy to sway their ideas to including mobility issues as default in their machinations.
A lofty goal. Jay as advocate for the voiceless. Going to be a rough goal to accomplish, but it is time to try.
God bless us, all.
Jay C. Theriot
Posted on December 4, 2019
A few days ago, my cage was rattled. I was attempting to stop a naive and innocent event from causing my youngest to cry. My attempt was met with my classification as “shameful” and “pitiful.” Followed by this classification, I was given a dissertation from another member of this grouping. The subject of this dissertation was how evil I was. I would say that I have since severed all ties with these people, but my situation is more than that. I had put up my defenses years ago and started lowering them about 8 months ago, thinking a potential reconciliation was possible.
I no longer think that is possible. For some reason, unbeknownst to me, I have completely angered this faction. What ever I did, dates prior to my date of confinement. Consequently, I see the last few days as a return to the status quo.
I am no angel. That is a fact. However, am I not the only one to share blame. Frankly, I don’t know what blame there needs to be shared. They may know what started their hatred of me. The signatory event is lost to me. I want to reiterate, that I am no angel. But, I’m lost at what actions I could have committed that would have remanded me as ostracized. There I am, and will remain. I won’t let my guard down again.
Three years into this disorder being critical and we have limited answers. My daily routine includes about 2 hours during which time my pain level is below 7/10. I don’t have time to play. I have come to accept and understand continued intense and extensive pain. It milks your mind and your soul. If I seem that I regard myself “Godly” it is because I have surrendered myself to my Savior. There can be no other way. It definitely doesn’t mean I am sinless. It means I am sinful and looking for forgiveness from the only One that can grant it. I seek solace in His cloak.
I don’t know what I am doing, nor do I know where I am going. But He walks with me when it is dark, and light. For me, it is easier to see Him when it is dark. When it is light, I try to recognize His gifts in the birds, insects and flora He has granted me access to. He gives me peace.
No, I am a sinner, and I need His light in my life, always.
In His Name,
Jay C. Theriot