I do not know if I am winding down, winding up, or I'm just over wound, but this really hit me. Next week I go through the final editing of my book. This week I tried to clear my desk of ongoing projects, problems and issues, so I would not be interrupted next week. Perhaps I am a tad overwhelmed and tomorrow morning the tide will come or go out, whichever fits for you, and I will emerge in my Speedo ready to carry forth the message, rhetorically bash some scared or hard heads and make new friends in the process. The fact that I go to sleep wondering, "I just don't know" is unusual for me.

I like to believe I know. I like to believe what I know I know is known by others. I may like it, but I am no longer confident. Perhaps I am liking things that are beyond my ability to know. Perhaps I now know things I do not like. I wish there was/were someone(s) who has been there (where and whatever "it" is, came back, was on Oprah, and gave me her/his email address! When I speak with late second stage folks, their lives don't seem too bad as they understand them, but I don't know what they don't know they are missing. They seem less frustrated with themselves, others and life in general than do we ESAers [Early Stage Alzheimer's], especially the EOAers [Early Onset Alzheimer's]. I spend more and more time missing parts of me, and admittedly it is harder and harder for me to enjoy myself and my world. I change from moment to moment. I seem too much and too long at odds with others' view of our world and me.

I am too quick to want to find right or wrong. Hopefully I am right and still OK, and others are wrong. But at the end of the day, what difference does it make? Tomorrow is going to be more or less difficult to live in than today. The more realistic my view of myself, the more others try to convince me that I am really not that bad. The more unrealistic I am about myself, the more others try to convince me I am worse than I know. I am psychologically and socially failing. I do not know what happens to people who fail their own and others' expectations of who they are, what they should do and be. I guess that is when others start to hang onto who I am not. They try to see me as who I was before all this Alzheimer's stuff started. "I just want my husband back," bemoans my spouse. "I just want my wife back" I respond. The twain (two items of the same kind) shall never again meet or exist. We must settle for what we have, and we are not sure what that is.

Like an old banana left in my spouse's purse, I still smell good. In a dark room I still feel and look like a banana. A little softer than when I was younger, but still identifiable and useful. When the light of day appears, when the test results are announced and everyone hears how I have lost all my nutritional value, how I can no longer be used as a food item, how I will soon develop an odor which attracts ants, everyone pauses and reconsiders the value of carrying me around with them. We do not want to put it in the garbage, or send it to Africa to feed hungry people, or pretend it is not there.

What to do? How about making banana bread with it? But wait, then it will lose its original identity as a banana. It will become something else. We might not like the banana bread. That is a risk I guess we all have to take!

I just do not know what I know or if I know anymore. It is not a lot of fun and the unknown alternative is even less fun.

I have fallen off the plateau upon which I was firmly standing for the past ten or so months and am in sort of an unconscious free fall. I just had a battery of tests comparing my past four years to arm wrestling with Dr. Alzheimer's and he is clearly in the lead. My IQ has fallen from 148 to 114. I am in the bottom standard deviation in short term memory. My processing speed is slightly faster than a concrete brick, my self awareness is close to that of the green lizard crawling across the floor, meta-perceptive comes and goes, as does self-understanding. I can sit here and know what I want to do and do something completely different and not know I am doing it. It just happened. It has happened most of today.

There is more than one tear in my eye as I write this because I know I am entering the twilight into the darkness of Alzheimer's disease. I can still see what others see, sometimes. I miss it, sometimes. Sometimes I see something no one else sees but, still sometimes I can see what others see. I sometimes wonder if blindness isn't a better alternative to this! Not suicide mind you, just let's get on with it. Sometimes, sometimes, sometimes is not the world of certainty in which I want to spend the rest of my conscious life. Where is the curtain descending between the acts: telling me and all around me that I am moving from stage one to stage two.

Not only don't I see, hear, touch, and feel well: what I do see takes me agonizingly long to process and understand. When I just open my mouth and respond, as I did in the past, my chances of saying something wrong, inappropriate, hurtful, and/or confusing to my listeners increases every day!

It is increasingly more difficult for my carers to understand me or what is going on within me. I know that to be true from their increasing tears, anger, and frustration. I cannot understand or appreciate "it" myself when "it" (whatever "it" represents) is happening! Afterwards, my re-evaluation of whatever "it" is, does not make much difference. The harm has been done, the mistakes have been made, and the feelers have been tromped on.

I am weary of trying to understand others and myself. The information that I now use to understand my world and myself is faulty, as are my conclusions. What is the use of even trying to understand when you do not have accurate perceptions, recollections, information upon which you can make a rational decision? Feelings of insecurity undermine even the most confident of my conclusions. I can now better appreciate why some allow and encourage themselves to quickly slip away from other's here and now, and embrace their own versions of here and now. It's tempting. It's surely easier.

Living in and for the moment assumes the ability to know what is going on, what I am doing in any given moment. I don't always know either! Going with the flow assumes there is a flow, not a series of abrupt starts and stops.

Losing the ability to accurately think about myself, to confidently know what I am doing, to have some clues as to how and why I feel as I do; as I understand and accept this is who I now am and it's not gonna get any better; what is left for me to enjoy in myself and my surroundings?

Richard Taylor