There I was, on my bed fully awake, and my wife was tapping me on the shoulder, I thought I was turning and speaking to her because that is what my brain told me I was doing. It became obvious to me within seconds that I could not speak, move my arms, legs, or any other part of my body. I was trapped inside my mortal flesh and no one knew it but me! there was no way for me to communicate that to my wife, who by this time was tapping quite hard, because she thought I was asleep. I was scared this had never happened what was I supposed to do? My eyes wouldn't even shut! Trapped! How do I get her to understand that I have full body paralysis? I can't Do it! I had seizures before where part of my body was paralyzed, but never my whole body, but some how she new I could hear her after the first panic was over! I was still in Panic, but no one would ever know it. She reached over and gently closed my eyelids and help them shut, and said, "When you can move again, or when you can open your eyes I will be here! Then she knew that I was aware because tears came out of my eyes and ran down my cheek, guess tear ducts still worked at that point, and she gently wiped them away.
My first thought was what a gift God has Given me. I have heard that Dystonia causes divorce, and when you have this disease you rob your spouse, children and everyone around of "What could have been", And you begin to think that way;it is not something that you can help your mind just wanders in that direction. should they just put me somewhere and adult daycare for instance or will she put me there, or should I just run away and let them have their normal life? This is very taxing mentally for me because my wife has to take care of everything, and I am lying in bed while she is doing it. No one knows the pain that she goes through everyday when she leaves and I can't go will she get a call to come home Quickly because her husband is having another dystonic episode.
I came to realize that when my wife said for better or worse at the alter she meant every word she said, and as my sister can attest to her husband meant every word that he said.
After about an hour of all kinds of thoughts racing through my head I was able to move first:my feet: my legs: my hips; my arms; my neck. and last my voice came back, and you know she was still there! She didn't go anywhere. I have memory gaps( lapses in time of which I have no remembrance). and my wife will have to tell me what went on maybe 12 hours ago or what we did the day before! it takes a mental toll on you, because you never know if you will get up in the morning or will I be paralyzed in the morning, and after I am able to move again and muscles begin to loosen, that is when the real pain starts!
I began to realize that this was my normal as crazy as it sounds this was, outside of a miracle going to be my normal. This was going to be my wife's normal, but what is normal? is there a definition. I have had people tell me they would invite me over for dinner, but they don't because... and then the "well you know" starts or we would come visit but.... "well you know". The only thing I know is they do not want to see my normal. What would be scary and downright terrifying, and believe me it is, that is my normal.
I do not write these thoughts so people feel sorry for me. I have a disease that is my families normal. I do, However wish people would accept my normal for what it is. I have felt my saviors Presence so many times during this disease, and I know he is right beside me every step of the way, but sometimes the way is rough and steep, and yes there are sometimes I don't know how I am going to make through to the next day, but His mercies are new each morning! I want to go back to work SSDI is not really enough to live of off for a family of four, even though Federal and state representatives tell you otherwise. They need to Live off of what they expect disabled people to live on. they might change there tune!!
yes sometimes I might be a little slow to keep up with what people are saying, but I will get it the pieces will come together. and I stutter sometimes my words can be slurred, but to someone who really wants to communicate with me after or during a dystonic storm, sometimes it is obvious that I am having one, sometimes it is not, it can be done. Do not fear me for it is my normal try with all your heart to understand me, understand my heart, understand my fear, understand my mental state, sometimes it is not good! Give me a smile, pray for me because I do not know what to do or how to handle this disease, but my Heavenly Father does, and I am fearfully and wonderfully made. In a song Amber Nelon Kistler, former Thompson, sings there is a phrase that is beautiful to my ears. "Sometimes it is in the darkest times we find God is always good.
Again these are Just random thoughts of an idiot with dystonia, but you can follow my journey by clicking the follow button at the top right, or you can subscribe by email, and feel free to comment on what I have written feeback is always welcome, and you do not have to be my family to comment