My Story, My nightmare: Fragments of Memories This repesents a good day in that I could produce a voice and I could move my arm and hand to click record. I was generally unable to move my limbs, hold my head up, swallow food, speak. Saying words wasnt always the issue, communicating my thoughts and needs as my brain intended was the issue. I was unable to write any sensible thought due to the severe brain issues, besides the weakness. And when I lost my ability to produce a voice, I was truly locked in, unable to communicate in any way. My entire existence would dim like a light bulb. Brain, heart, eyes, breathing and body clearly included. All these symptoms happening at the exact same time, I had no way to understand. I still dim today and almost 6 years later I am still hardly what youd call functional, but at least my lows arent this low. Ive been able to keep my batteries charged just enough to keep me from discharging enough where I get this dim at least. Even when I had a voice, it was soft and quickly my voicebox fatigued as did my heart. I could not scream out in pain. I coult not move my body to even react to the pain. I couldnt dial 911. I couldnt tell Nikki - (or anyone) what was happening, and by this point I had already been kicked out of ICU, unable to get the Mayo clinic to hear me on the ugliest parts of this... I had no idea who to call, or more importantly, what to say. I was so confused and unable to escape my own mind enough to communicate the thoughts in my head. And it was (and still is) like living in a movie, or a dream-like state. The world seemed so foreign, and communicating was/is like being intoxicated, talking to voices in the dark - but I can see. Sort of. How do I find help? What do I tell them? I had no other choice but to sit there and take it. I didnt understand what was happening enough to say much, couldnt communicate and was too weak to even move my arms or head most times. I faced pain, I faced terror. I faced myself here, in this chair - far away from my family, at the very back of our house. I learned shame beyond all reasonable description through this whole journey, but without a doubt this is where I began. It is in this chair I faced the most indescribable, excruciating, horrific pain that is not of this Earth - including but no way limited to several layers of sharp/intense electrical pain from head to toe. Pounding heart beating at 120+, weakness causing me to even be able to hold my head up, chew my food or swallow without choking. I couldnt scream for help or tell m family I loved them. A Nuclear Bomb had just gone off in my body and medical help of any meaningful type was impossible for me to find. So many symptoms at the same time... Ive clawed my way back from what was certainly and clearly a very long, near-death experience. Ive come a long way but the reality is that Im not too far way from being back in this chair. I fight hard in every way I know how, every single day. I have too much to say about this period in this prison, I will be writing a lot before I post this for real. But right now Im in a state where I MUST get momentum. And looking at this video forces me to see that Ive come far by sheer will alone. And that reminds me that I CAN do this. Please, watch and see why Im so very grateful for the smallest of moments. *Audio boosted so you can hear me. Actual audio is so low as my voice was so soft * Im alive. And so are you. Your Brother in Fight, /M
Posted on: Tue, 16 Sep 2014 16:12:15 +0000
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