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): “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; we wrestle 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 to 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 a 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 lost our minds out of excitement, passion, or love, yet, after the diagnosis of dementia, it is not the same. Of course, we could discuss what really the "mind" is, there is so much more to the mind than the cognitive aspect of it, yet for any purpose - the mind someone loses to dementia is THAT mind - the one holding memories, pains, and joys. It is ready to go with the wind.
In reality, with the plaques and tangles created in your brain, after a certain time you will not even remember the diagnosis. Just as Clark Gable stated while playing Rhett Butler in Gone with the Wind, you may well say: "Frankly, my dear, I don’t give a damn.” But the clock is ticking.
Professionals will offer all that 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 a person with dementia is going through? What you or your loved one are going through? Do they know that you are going through the tunnel? In and out of the darkness. Do they know about the uncertainty and the challenge of living an existential tale of the here and now, for which, you did not sign up, and have never practiced for?
Then come the drugs, the optimism, the clinical trials, the walking to fund more research. Hopefully, before it is too late for you. There is so much that is done, said, so much still to do, yet nobody really knows what you are going through.
We try and theorize about the phenomenon of dementia - 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 and 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 this is 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