Skip to main content

Trapped In My Own Body

 

   Ever had a charlie horse and not known what to do? Ever had a full body charlie horse? ever had a moment that you could not speak, When just a second ago you could? Ever had full body paralysis. You could hear everyone talking you every little noise, and it caused more pain than you could ever imagine?
    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

Comments

  1. There are definitely scary times where you feel trapped. I have had those too. Although I hate that so many in our family suffer, in a way it is nice that someone else knows how it feels. I love you!!!

    ReplyDelete
  2. Been there so many times. It’s why I often wonder if people who have disorders that make it so they can’t speak, Can they think like I can and just can’t say it? Do their minds work, but they are just trapped?? I hate that we all experience these things. Daniel has been through so many of these with me- he will check my pulse and breathing. A hubby shouldn’t have to worry so many times if his wife is alive. My hubby sure has been through so much “worse” with me. He never complains. Last Sunday, I had to call hubby at church and he had to leave church- I was in seizure mode. Yes, Melissa is right...having each other is a blessing. However, it’s difficult to watch each of my siblings follow some of my path. Love you...and I’m so thankful for you!

    ReplyDelete
  3. ....and yes, it becomes “normal.” Eventually, accepting that just makes it easier. I never imagined, tho, what DANIEL would have to suffer.

    ReplyDelete

Post a Comment

Popular posts from this blog

Living with Dystonia My Story. Follow me on my Journey for a cure

My Life With Dystonia It was about Ten years ago, My sister was going through a Hard time with this disease. I did not understand it. For some reason we don't take up a cause until we are affected by it. She had undergone DBS surgery you can read more about that from the Link. 
  She began to have Dystonic Storms, Link to what one Looks like to come later, I would take care of her it was a tough Job, but even tougher for her. I never dreamed I would later have the same disease. There will be more to come financial struggles, and yes there will be some triumph. I Just want to take you on this journey with me. this is a Terrible Disease it affects the whole family. Please this may be boring at first, but will you follow the Journey  

My Life With Dystonia These First few writings, or musings, I guess some would call them are going to be about My Daily life Some of the Struggles that People around do not Even realize we have. Close Friends do not Understand the Daily Struggle.     I was Working at Pioneer telephone and was a Network Technician. The Job was not always fun, But it was better than not having one at all. I was close to getting My CCENT for the techies out there they know what that it but just to say it would have meant very Much to me to get it. I was much like everyone else, but after work I noticed I was exhausted. It was normal at first, I thought, everyone was tired after work Right? Then I began to notice what my fellow employees could do after work. It was amazing to me and I began to wonder. at sixteen years old my sister Got the Disease, but she could handle it better, she was more equipped. I was a man who had to support my family. So I continued. Ignoring the signs of the Disease. Thinking i…

Springtime in "Tornado Alley"

Springtime in "Tornado Alley" Spring time in, "Tornado Alley as it is called, is not a particularly great time for those who suffer from my type of dystonia. The Electricity in the atmosphere can drive the electrical signals in your brain crazy. This will be a short post. Well, because of storms and electricity in the air. It is very hard to concentrate during these times.   My wife and I used to sit out on the porch and enjoy these "Lightning Shows" together, While we where rearing our six children, and it was a getaway for us after the children had gone to bed. That time is long past even lightening 10-20 miles away can cause a Dystonic Storms.., Like today. We have since moved into a house with a basement which helps,
and I can wear Puma hats because of some material in them that helps a little as well, But after awhile you get it feels like kind of a prison when you have on day to a week like these. It is hard on my wife as well because she is constantly ru…