This was recorded during part of the most severe portion of reaction in that my body was so heavy that it was impossible to move out of the chair – not even to use the bathroom, and it felt like my body was shutting down completely. It repesents a good day during that time in that I could produce a voice and I could move my arm and hand to click record or to think well enough to make this. I was rarely this lucky. I was generally unable to move my limbs, hold my head up, swallow food, speak. Saying words wasn’t 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 got very slow, problems with my heart, eyes, breathing, progressive weakness of my body included. All these symptoms happening at the exact same time, I had no way to understand. I would describe it as like being in an awake coma.
I still ‘dim’ and weaken similarly today and almost 6 years later I am still hardly what you’d call functional, but at least my lows aren’t this low. I can walk upright most of the time (short distances) but I am generally too weak to leave the house, and fatigue very quickly even though I do nothing all day. Simple things like walking to the washroom or even showering can wear my batteries quickly, but I’ve been able to keep my batteries 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 and speaking caused horrible pain in my heart which would stop quickly as soon as I was still or quiet. I could not scream out in pain. I coult not move my body to even react to the pain. I couldn’t dial 911. I couldn’t tell Nikki – (or anyone) what was happening, and by this point I had already been kicked out of ICU. Been to the Mayo Clinic where they found a few important issues but they seemed to think no one could have a symptom list as long as I did, in so many different systems.
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 far away, so foreign, and communicating was/is like being intoxicated in some way, 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 didn’t understand what was happening enough to say much, couldn’t 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+ w intense chest pain, weakness causing me to even be unable to hold my head up, chew my food or swallow without choking. I couldn’t scream for help or tell my 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… and my mind was so slow. I spent many months in this condition or worse.
I like to think I’ve come a long way, but the reality is that I’m not too far way from being back in this chair. And I’m continually wasting away. But I fight hard in every way I know how, every single day.
I have too much to say about the chair, what I’ve written hardly describe all that was happening at the time. But right now I’m in a state where I MUST get momentum. And looking at this video forces me to see that I’ve come far by sheer will alone. And that reminds me that I CAN do this.
Please, watch and see why I’m 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. The original untouched versions can be found on this site here *
I’m alive. And so are you.
Your Brother in Fight,