Striving L̶i̶v̶i̶n̶g̶ With a Neuromuscular Disorder

Touching the Dark, but Showing the Light

Jay’s Neuromuscular Disorder (NMD)

The most destructive force in all of this mess is that the muscles do not ever let up with or without medication.  Medication helps, but I would have to take enough to kill me to stop the pain caused from the tight, stolid and spasming muscles as evidenced by recent discoveries.

Four years ago, multiple internal images: radiographic, MRI, CT and ultrasound, gave little evidence of spinal issues save a small patch of osteoarthritis in my neck. Here I am, now, with many operable issues with my spine. The first of two back operations is scheduled for February 7th. I have a vacuum disk in L5-S1 and a dessicated disk at L4-L5 which are causing a spinal block to my pelvic cage. There are multiple other issues that my ortho would like to fix, but these two have gone beyond critical. I can’t describe the levels of pain that a spasm next to these vertebrae caused last week. I was left screaming for IV sedation when the spasms started in the early morning hours.

The early morning has always been a crazy time for me. I wake at 5 am to take a self-assessment and take a barrage of medications, wait and take more if I need them. I woke up last Wednesday with spasms in the area. I took my morning meds and misread the situation. The spasms persisted and increased in their intensity.

At some point, my wife found me and quickly realized I was in trouble. It is amazing how long two oxycodones take to work. It was not until about 6 hours later that I realized some measure of relief. During that time, I saw and heard things. My mind takes me away from where the pain is, as a blessing, a side effect of some serious meditation. During the super-high pain levels, I am not of this Earth, but hovering somewhere beneath it, in the bowels of Hell.

With God’s Grace, I no longer fear Hell. I’ve been there too many times.

All muscles in my body are affected: Facial, cardiac, toes, you name it. That muscle is affected. Thermoregulation and sensory feedback are all messed up to some degree. Regulating my core body temp is difficult. I generally have a low core temp and it occasionally drops further, causing full body or regional drenching sweats. Many times, during these “sweats” my sensory nerves interpret the salty perspiration as a rash, sometimes as glue, sometimes lighted kerosene. It is among the most miserable times of all in this NMD as there is no escape. Showering gives relief, temporarily, as long as I am under running water — which is usually interpreted as fire. I shut those thoughts out, if I can. My scalp burns and my skin stings when the cool shower water hits them. But, still, a measure of relief is there. Drying off and dressed, the sweat and sensations quickly regain their fervor.

Mental health, notwithstanding, I have a great counselor, wife, daughters, son and mother-in-law that help with the mental agony.  I can’t say that I’m good. I’m far from that. I can no longer say that I’ve never dreamed of, or wished for death. Would it not be for all the phenomenal support I have from these people, I fear the thoughts could turn to action. But, then a doctor finds something, and for a while, we have false hope.

The upcoming operations on my spine are one of these “false hopes” that we cling to like Indiana Jones holding on the end of a rope, over a chasm, trying, just trying to hold on and swing until he gets a finger-hold on the cliff on the far side of the chasm. Only, once he regains footing on solid ground, quickly realized the cave is in collapse all around him, so he runs, and runs, and runs.

The surgery will only fix what is done, but cannot prevent the future damage my muscles are causing and will continue to cause to my spine and every other joint in my body.

Still we continue to fight. In my life, I’ve competed, and placed, in international “ruck-march” competitions. I would not quit. I’ve stayed 36 hours with critical IT issues affecting quality of care for thousands of patients across South Louisiana. My team members would regard me as an animal for my ability and tenacity at sticking to an issue until the resolution.

I am a fighter. Quitting in the face of defeat is not contained in my soul. I will fight for the last drop of air that enters my longs and the last blood coursing through my veins. I may be defeated, but I will not be silenced and I will not quit. If this disorder wants to crush me to death, then it has a job to do. I will not go silently into that good night.

I talked to a doctor that said if he were in my condition, he would end it so he wouldn’t be a burden to his wife, children and grandchildren. I pray for his soul and wonder how he ever ended up in medicine. That is as nice a thing as I can say about him. Shame on him. That is not me. I dreamed of death. Prayed for it, that it may release me. I realized that could not happen. It is contradictory to every fiber of my being. Death, will have to wait. I have some soldiering to do.

“Once a Marine, always a Marine.” I was in the Army for two enlistments. But, I seem to be a soldier for life. My soldiering skills coupled with my faith in God have gotten me here and will carry me unto the next state of being.

Thanks for reading,

Jay C. Theriot