If we are not being what we say we are, then we are not authentic, or as Robyn Moore (The Power of The Word) would say, we are being a fraud! Some days, dementia makes me feel as if I am not being authentic to myself, as I start towards a new thought or a new project, then have no memory of what the hell I was intending to do, write about or even think of! There are moments when all I want to say is Dementia is such a shit of a disease! No, not a pretty word, Dementia! Authenticity is yet another thing dementia is trying to steal. How dare it? How fucking dare it? It makes me feel like a fraud. It makes me feel as if I have plagiarised myself. My husband assures me he sees me tapping away at my trusty little pc, but not always remembering this simple joy is a real pain in the arse! How the hell can I be authentic, feel authentic, act authentic, when I can’t remember the last few moments, hours or days? I can’t remember the history of my life, my friends, my family, or the moments that make all of those times and relationships special. WTF, this is not what I call fun! And yet, the will to go on, to seek the lessons in this experience, remains strong.
Sharing this with you, opening up my world of despair, with a snippet of foul language, is not meant to offend you. This spewing out of how I feel right now is to remind me during the good moments that it is ok; this mad, cross blog is a guide or marker for gauging how much better it is during the good moments. You may think I need the swear jar, but today, right now, I don’t care if the F words offend you. I sometimes use the C word too, the word that provided me with the knowledge some of my friends had nicknamed Snobby bob girl once (but that is another story!!! ). Dementia offends me, and the language I might use to describe how I feel about how much Dementia offends me can surely only help you understand the depth of my anguish. On my good days, in my good moments, I dive into denial, not the type of denial that doesn’t accept reality, but the one that allows me to slip into a bubble that hides the truth for a while, gives me the energy to keep facing the future, when the denial bubble bursts. This bubble lets me take a rest from what is happening, from the fact that I don’t know if tomorrow, I might slip into the twilight zone, and that right now, I have a terminal illness.
Some days it feels as if I am only living in the future, not the past or present, as I often can’t remember them. Sometimes I can’t even remember the future, as I’ve forgotten why I’ve gone somewhere. Blogging allows me to transcribe the scribblings of my notebooks and post it notes, and turn them into words offering me memories and meaning, and authenticity. Being authentic is important to me, and the placing of words on pages for the world to view is the soundest motivator ever that I will try to live up to and honour what I write. As I write, I am being authentic. You are hearing my truth. You are listening to my soul. To write truthfully, with love, integrity and authenticity, is perhaps, all I have left?
I find this post the most thoughtful, the most challenging.
Is your articulate self, less or more authentic? As an observer I only see the articulate you, the one who can pump out several thousand articulate words per day. I don’t see the Kate that has forgotten anything at all!
I only see the articulate gaps. I wonder if I will ever see the inarticulate Kate on this blog? How can one write about the forgetful moments, forgotten moments, the process of forgettfulness? Could you actually write during your bad moments. For example is dementia like two minds, one that operates for periods normally and the other, for want of better, abnormally. Or are the abnormal moments still operated within the realm of the normal rational mind,. and hence a single mind, operating poorly, knowlingly so? So you feel the despair in the instant?
Paul
Your response is challenging and thoughtful too thanks Paul. I am not sure where to start, or what to think about the questions you offer for consideration. My very sick friend has amongst other serious illnesses, severe vascular dementia like symptoms. His cognitive decline has been happening for other reasons too, and we used to say we’d head off to the nursing home together, as we were progressing at a similar rate. He has declined significantly in the last few weeks, and some days is completely incoherent, has no idea of where he is, who I am, and so on. On other days, it can be partial coherence, and on others, complete cognitive ability, albeit very slow. It has been like watching a time bomb, and facing a mirror I’d rather not look into. It is very sad and confusing being with someone who can function one moment, and then not the next. It gives me a glimpse of what my close family live with, and allows me to feel their sadness and confusion, and occasional frustration, and a glimpse of what you are saying about your observations of me.
I wrote an article published in 2008, and in it I said this: “My high functioning mind has slipped away, sometimes showing itself like a ghost, trying to tease me into believing it will be okay, but now outside of my reach. My thoughts fly around inside my head like helium balloons high inside an auditorium, also out of my reach.” It is still much like that, but everything is getting more difficult, taking a lot more time. I spend an inordinate amount of time making my writing articulate; if you were to read any of the NaNoWriMo writings, where the goal was to pump out quantity, not edited quality, you would see clear evidence of the dementia symptoms. To preserve my dignity, I choose not to make public any writings before I edit them (repeatedly). My November novel blog was, and still is, private, and the writings will need many hours of reworking and editing before I would consider sharing them. There are incredible blanks in my memory about my life, and I will need to speak and interview many people to have any hope of filling in my gaps and completing this book.
I’m not sure if I could write during bad moments; perhaps I will try one day. It is a provocative question worth exploring. I’ve been pondering your words, and suspect the answer lies in the last comment, and that the abnormal moments do operate within the realm of the normal rational mind… knowingly. I sometimes do feel despair in the instant, and have often wondered if it will be better when the mind won’t know what is going on at all. I’ve volunteered with a lady with very advanced dementia, who the staff say is “away with the faeries and not worth wasting my time on”, but I have spent quite a lot of time with her, and she has told me a lot of her personal history. She is shocked, and delighted to discover I gained the information from her, and always says when I remind her of her past, “so I’m not all crazy in there after all, my brain does still work”. It breaks my heart. It also makes me wonder and question what is actually happening to those of us with dementia. It seems each person’s experience is very unique, but I feel sure our inner knowledge stays with us. At least I hope so! And thank you for making my brain work hard in its effort to respond properly to you.