Most of us spend a big part of our life searching for meaning, trying to find our identity, and although Thomas Szasz said in The Second Sin (1973) said “…the self is not something one finds, it is something one creates…” we set ourselves for the pursuit of that elusive identity and our meaning as human beings. What is life all about and overall what is our role in life? What do we really live for? Who are we?
We pass many of our prime years looking for our identity, fighting for one, trying to assert one if we are ever given a glimpse of it, wrestling to have our needs met and to have our dreams come true. That search for identity comes sometimes in a puzzle of circumstances, challenges and exploits, and like the overprotected Nemo, we need to swim the oceans of uncertainty and grow until finding ourselves
Through the journey in search of our identity, we attempt to unfold our potential, our desires, and to adjust at the best of our abilities to the challenges of daily life. We build our life upon joys, shadows, and sorrows and fill that life with the mementos and the facts we carve in our memory, those we gathered throughout our journey but one-day, zas! You are diagnosed with dementia. There you are, all of the sudden lost, confused and soon to be stripped, if not of your identity, at least, officially, of your mind.
I know, hopefully, we all have been lost in our minds out of excitement, passion, or love and yet, after the diagnoses you will not be lost in your mind, anymore, since now, your are losing yours. Of course, we could discuss what really mind is, there is so much more to the mind than the cognitive aspect of it and yet for any purpose is THAT mind the one holding your memories, mementos, treasures, pains, and joys that is ready to go with the wind. Well in reality, with the plaques and tangles created in your brain, in a certain time you will not even remember the time of diagnosis. Just as Clark Gable stated while playing Rhett Butler in Gone with the Wind, stated, you may well say: Frankly, my dear, I don’t give a damn….” But he clock is ticking.
Professionals will offer all what they have. They talk and teach how to calm you down, how to deal with your mood swings and your challenging behaviors but do they really know what we are going through, what you are going through? Do they know that you are going through the tunnel, in and out of the darkness, the uncertainty with the challenge of living an existential tale of the here and now, for which, you did not sign up and for which, effectively you have never practiced. Then come the drugs, the optimism, the clinical trials, the walking to fund more research, hopefully before it is too late for you. Looking now for a different meaning. There is so much that is done, said, so much still to do and yet nobody really knows what you are going through.
We try and theorize about the phenomenon, the neurological, psychological, emotional, and practical side of it, even the spiritual side of it. Needless to say, we appreciate all the nice legitimate attempts people make writing new books about breakthrough treatments and findings; they present lectures, write articles about you but what if you could really explain how it is to know that your life is slipping away, fading away? What if you had a voice? What if they found a cure?
I wish I could be more helpful, but I really do not know how it is, all is in my best efforts to explain a phenomenon, I can only observe and witness with powerlessness, compassion and horror. I do not have dementia and I wonder if I had it how I would feel? What would it be like? Again, I do not know but if I could, if I were you, I would not like to go there. That said, I hope I would react calmly and with patience for myself, although I doubt it but let the journey continue and keep on swimming.
For now, I find some solace and motivation to keep ‘on swimming in Thoreau’s wisdom:
“…I went to the woods because I wished to live deliberately… only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived. ~Henry David Thoreau, 1854