IN THE TIME OF NOT QUITE KNOWING
“I will not cease from mental ﬁght… Nor shall my sword sleep in my hand.” -William Blake
The Oxford English Dictionary defines ‘cognition’ as the mental action or process of acquiring knowledge and understanding through thought, experience, and the senses and the mental activities of thinking, understanding, learning, and remembering. The negative side of this definition is what I felt during the first few years of my treatment for Parkinson’s. It is cognition or lack of it that played a heavy role in my actions and way of thinking at that time and still does today.
Up until now, I have painted a picture of reasoning and understanding what was happening to me. But this is far from true; to write this narrative I had to go back and piece together my thoughts and actions at that time because I wasn’t in full control of my facilities. It seemed as though I were living in a dream and now to remember that dream was of most importance to me.
I shudder at my lack of awareness to judge situations that I take for granted in ordinary daily life. My deficiency in thinking and understanding in a normal way is the scariest part of Parkinson’s for me. I felt like I couldn’t connect the dots in my head to the subject talked about on the outside. My thoughts are trying to ﬁnd words to reply with and if I found the words, I couldn’t get them out. Then at times I would go blank and forget my thoughts altogether.
This was not a thing of; “well everybody forgets sometimes”… no this was complete; total blackout. This felt like being lost in my mental processes… watching my mind as though it were searching for words in a black hole at the center of my brain where all my abilities to think and answer as a normal human being was being held, hostage. There is a disconnection like you’re on a diving board and ready to dive but you can’t, so you just stay there at the edge not knowing why.
We use language to communicate and the words originate in the mind from our thoughts. With this connection hindered, stress overcomes the spirit and along with this comes anxiety and depression and a dotted line drawn to an inability to sleep and thus more stress. So while my cognition caused a broken link to the outer world, my brain would alternately overload its circuits with a host of myriad considerations or a blank field of nothingness.
I would lie in bed at night, the clock beaming like a lighthouse beacon reading half past three in the morning, the train running on time in the distance as my mind was shuffling thoughts running around in my head, totally consuming my attention. Thoughts from the past would ﬂy by and then anxiety about what I needed to do the next day, now things that didn’t make sense rushed in and then nothing, I would go blank. I didn’t know what was worse; endless mindless thoughts that kept me awake and stressed or the black hole in my brain that scared the hell out of me.
This was my mindset in the year before my diagnoses and after while I was discovering just what was wrong with me and once discovered, the choices left to me as there isn’t a cure.
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