Things we think we know...but what if............

Things we think we know; assuming we are the fixed point and that the knowing is subject to change.
But what if.........

This disease, this way of being takes us to places most people don’t go, might never go; why would you if you had a choice.
For me the worst experience was of a cognitive deficit and the mayhem that flows from this, the rest of it was pretty bad as well.
I watched my mother’s mind disintegrate with Alzheimer’s and its not the same, bits are similar but much is different; .....and I came back.

How to discern the onset of the process when my body was so ill, as the exhaustion reduced my life to coping and friends melted away.
I remember a lack of confidence, my judgement was erratic what once was easy became hard, that which was hard became impossible.

No one seemed to understand what I was going through, I thought I was going mad. Doctors were evil at a time when you were so vulnerable and so down I went into the rabbit hole. Three years of drowning, water-boarding of the soul, until I found what was right for me and slowly, so slowly I began to return.

My memory was shot, short term went first. I seemed unable to lay down memories; those years are a blank, episodic memory vanished. I couldn’t remember childhood, marriage, birth of children or much of anything. My mind was dark and empty. I could do things but didn’t know why and couldn’t explain what it was that I could do. I could hold a hammer and hit a nail but couldn’t work out where to put the nail.

Faces all looked the same, I couldn’t remember names anyway and I couldn’t cope with more than one sound source, so parties were out (that’s irony btw).

I didn’t remember enough about my life to know who I was and couldn’t think my way out of a paper bag. For a few years I ran along well worn tracks and got by and then my memory came back........

All this time I was getting stronger but so slowly, I can remember thinking ‘ how can someone have heart surgery and in weeks be close to normal when the tiniest improvement took me months and then it could be snatched away.

I started to get images falling across an interior field of view, like shooting stars across a dark sky. Like photographs of a life, but with no meaning or association and they came faster and this time I was drowning under images of another life.

I was a different person and these images were of someone else’s life. It has taken years to rebuild a ‘file structure’, to make sense of the information, but the way we remember is complex and the assumptions inherent in the memory seem to owe much to the perspective from which they are created. I am not the same person as my memories expect me to be, wrong codec.

This is about Identity and in an everyday sense I know who I am and what I am doing;...... what bends my head is who I was and why I thought I had to be that way.

I read and re-read this wondering whether to post, checking the angles. It’s an honest account and it has been people’s stories that have given me insight and hope, that filled the gaps between this supplement or that. This monster of an illness takes so much, it has shaped be but I won't let it define me even if I am not quite sure of who I am just yet.

Living in the UK options are limited, the ‘stiff upper lip’ seems the preferred treatment by doctors here or is that called neglect, hostility, arrogance and too much regard for the bottom line.


Thank you so much for writing and posting this. You have captured this falling into decline so well. I see there's a part 2, you have apparently healed a lot.
Thank you for your thoughts, I have come along way and I am resilient and pass for 'normal' but as I discovered on saturday a crash is only just beyond my everyday activity.
As someone who (hopefuly) is on the way out of dealing with this, I feel that I've kinda undergone some sort of 'coming-of-age ritual' or 'rebirth in the world'. On a good day my personality is quite different then what it once was and I have this seemingly rock-solid confidence in myself that isn't swayed by the actions of others. A lot of the things I once valued I now have discarded. In my more lofty, self-important moments I feel like one of Joseph Campbell's heroes, having returned across the threshold baring gifts of hard earned wisdom, with knowledge beyond my years.
Of course most days I'm just a grumpy frustrated kid who wants to block out the world, but hey, what can you do?
having returned across the threshold baring gifts of hard earned wisdom, with knowledge beyond my years.

Wow that is some phrase.

Is it the curse of those that explore, or experience, the little known to have insight that is so beyond the experience of the everyday that it is ignored or reviled?

When I was younger I lived close to the land, not easy in the UK. I learned so much, saw the natural world so clearly at a time when others seemed only to want to destroy it. This was knowledge that had been central to our lives only a few generations before but now was lost. It was lost because no one wanted to know and over the next 30 yrs the destruction has gathered pace.

That knowledge informed my life and ensured that it ran counter to the prevailing philosophy and has been uncomfortable and of dubious benefit, yet I cannot un-see it. That is the price of walking your own path.

It is not until people need what you have that they will value it or even listen, more fool them. When you pass through fire it imparts a temper to the body and soul; who knows where that could lead you.
thanks ahmo and battery muncher for your support,
I get shivers when I read this again because it was so tough. I have close family with Bi-polar and schizophrenia and supporting or even just coping with them can be mind-bending and a shattering experience.

To see the consequence of the shifting sands of reality on those you love and how their lives fall apart is terrifying and yet it highlights that severe mental illness is radically different to the cognitive deficit I endured though the outcomes can seem similar. Rational thought though broken and frayed has a pattern that mental illness does not. Mental illness does not have mind-numbing exhaustion at its core.

How I wish that psychiatrists would stop trying to lump it all together

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