#KennedysDisease #SBMA #Success #ExtremeSpasticity, #AcceptanceWithoutSurrender
Luke 4:24 New Revised Standard Version (NRSV)
24 And he said, “Truly I tell you, no prophet is accepted in the prophet’s hometown.
I can never doubt the truth of that statement. The people that are closest to you are the ones that believe you the least.
There are many reasons for this. I believe the major one is they know your history. They know who you were, not who you are.
I remember the times that I was not disabled, and the idea of a slow-progressive neuro-muscular disorder (NMD) of genetic origin was not in my vocabulary, nor my dreams.
Now, the reverse is true. NMD is in my vocabulary and those times are only in my dreams. I wake to the horror that is me.
Kennedy’s Disease, as is the case of many NMDs, is a thief. The disorder robs you of your health, your abilities, your finances, your confidence, your loved ones and your independence. I hate it, but it is who I have become, and I must accept the evil that is within me.
My closest relatives, do not have to do the same. They do not see the evil inside. I am very frank on this blog. However, there are attributes of this disease that I won’t even write. I save those for my wife, kids and closest of the closest of people. Only those that have seen the horror of someone they love lose themselves to a disease can even begin to accept. I originally wrote “understand”, but that is a lie. I am the target of this NMD and neither my neurologist, nor I, understand this. Thus, it is an impossibility that anyone can truly understand this.
I think of Jesus in His days. What it must have been like when he realized he was different than everyone he knew, even the person he thought he was. His parents tried to tell him he was just like all the other kids. He always tried to fit it, but he never did. Blaming himself for the inability of others to see and respect him for who, or what he was, he must have lived a life of solitude.
I must insist that, although I am comparing my mentality to Him, I do not consider myself even worthy to gaze at His feet, less clean them. No, I am not He. I just I an idea of what a minuscule portion of what it must have been like for Him.
One-by-one, my friends gave up trying to teach me how to play sports. Football, baseball, softball, tennis, volleyball, and the list goes on. I was always uncoordinated and spastic. I rarely play video games that demand fast reaction times. I rarely survive the first round. The only action-based game I ever partially excelled at was the Atari 2600 version of Pac-Man. I memorized the first levels of the game. There was no reaction time. I just knew the pattern to travel in to avoid the ghosts.
I learned muscle memories and driving techniques. I have been in a side-spin on black ice in a curve on the side of a mountain with an oncoming tractor-trailer and one behind me. I recovered the vehicle and was lauded praise by my passenger. I never wish to do that again. The snapping back into the forward motion broke the differential of my BMW. To say the lease, it was terrifying.
Fast forward twenty-five years, and a trip to the local grocery store has me upset if all the handicapped parking spots are taken. I wonder if I can make it inside to the mobile carts before I have to sit on the cement because my legs have given out. I leave, and go home, saving the shopping for more able-bodied members of my household…that is, my wife. When my time is done, she should receive her angel’s wings, not me.
Where I am finding success
Success is how high you bounce when you hit bottom.— Gen. George S. Patton
Sometimes I get accolades with the work I do putting my church on-line and creating accommodations for others so that they may attend services, virtually. It started as an ideal. I seemed to have a lot of friends considerably older than I. I would watch them drop from the ranks of service and then die. I saw the Internet publication of the services as a way of giving them comfort. That was my mission, that became my goal. My phrase was “Computing Through Christ”, followed by “because I can do all things through him who strengthens me.” an alteration of Philippians 4:13. I thought it was doing it for them. I enjoyed the integration of technology. I had received state-level certification in teacher-training years ago and the concept always fascinated me. The idea that technology should be seamlessly integrated into our mundane activities, always with a backup, so you can still get the job done, without electricity, was a killer theory. I have since forgone the “without electricity” bit as I realized its existence was due to bureaucratic mandate and not true reality.
Little did I know, a few years after I would take up that path, my own journey would become. I guess God saw unrefined talent and thought if I were a little more involved, my efforts would be better refined. Indeed, I prayed that I would be able to be more involved in the church. I couldn’t figure out how that would happen, but I knew I wanted to serve others. Well, here I am. That prayer was answered. Largely, the church comprises a large part of what I have. I was able to attend only a few services over the last two years. Even now, I am dedicated to attending. My attendance is about 50%, at best. For me to attend, two days recovery time is required. The exertion needed is incredible.
For that reason, I am designing and programing systems that will record and forward the service to my servers for me to produce, when locked in at home, and unable to attend the service. I have achieved success in the individual parts of the plan and now, I am assembling the pieces as fast as my body will allow. However, what used to take hours, takes weeks.
But, with the power of Him, who strengthens me, I will get it done. Although ever-present in my mind, the Nazarenes do not control who I am, or do. They only control the memory of who I was, because I let them.
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.