Stuck In Old Lodi Again

If I could somehow predict the arrival of these intermittent days of heightened confusion, I would just stay home and do something less demanding--wash the dishes, or do the laundry, or vacuum the rug. Or sleep.

But their arrival is quite unpredictable, and moreover you don't even know your having one until you find yourself right in the middle of it. Suddenly you hear that familiar music. No point in adjusting your TV set--for you have entered the Twilight Zone.

It was my day off work, and my wife had given me a simple list of things to do, the accomplishment of which should have taken perhaps an hour, certainly less than two.

But folks, it took me the entire day, such that I finished the last chore no sooner than ten minutes before she came home from her own full day of work.

Much of this time was spent driving back and forth between my house and one location or another in order to retrieve whatever I had forgotten--the same item being crucial for the specific task at hand. This means arriving at the bank to buy money orders without remembering to bring the money. It means arriving at the postbox without the letters to be posted. It means taking three trips to the store in order to buy three items--0ne item at a time.

What have you been doing all day? she asks. I have heard this question so many times that they are far beyond counting at this point. She imagines perhaps that I have been sleeping, or maybe just sitting, or maybe watching TV. It seems quite clear to her that I cannot account for six or seven hours of my time.

And the truth is, I can't. Not in any reasonable way, not in a form of accounting that would seem even remotely believable.

So maybe I've been having an affair. Affairs take time, right? And they're much more fun than driving back and forth, over and over, within a radius of three square miles or so.

It is an answer that would fill in the blanks, that would seem to make sense, that would seem more satisfactory even to me. It's not the truth, and yet seems kinder somehow to the reasonable parameters of credulity.

Fixin' A Hole

I'm fixin' a hole where the rain gets in and keeps my mind from wandering.

Catchy words, those (courtesy of Paul McCartney). But of course I never knew how closely they would eventually apply.

Of course I'm thinking of the word wandering in this case according to its implication of a freedom to roam and range far and wide, and to do so in a smooth, well oiled manner, as opposed to the jerky, stop and start manner of the MS brain I've ended up with. Which, admittedly, may not have been what McCartney was thinking of.

My mind now achieves one thing at a time, usually through a series of errors and corrections, which often enough includes a certain ingredient of comedy. Thankfully. A prime example can be found in the daily routine of simply getting out the front door with everything I intend to take with me. The challenge is new every day, despite the fact that the routine itself is most often exactly the same as the day before.

The needful things include my car keys, my laptop, my cell phone, my cigarettes, my coffee cup, and of course my person. Oh, and my clothing, my shoes, and such-like. My brain cleaves to this task during the performance of the same like a dog about to be dropped into the bathtub. After anywhere from one to five or six return trips to the door, I finally reach the car and I'm on my way. Often enough having forgotten something despite my efforts.

Fixin' a hole where the rain gets in. Yes, my brain finds ways. The thought runs into a snag, teeters on the chasm where a bridge used to be, and then straightaway seeks an alternate route, the long and winding road, over hill and dale. It takes whatever way it can, and it gets where it's going, no matter how many times it has to restart the maze.

And it really doesn't matter if I'm wrong or right, it sings. Where I belong I'm right . . . where I belong.

Coming Soon, MS/PC

It strikes me this morning as suddenly appropriate that my laptop does does work very well, for in running very slowly, it keeps up (so to speak) rather nicely with the slowness of my brain. Were it a normally functioning laptop it would no doubt be way ahead of me, jumping to conclusions, loading pages according to spastic, unintended keystrokes, and so on.

It may be that I could produce an exact copy from this prototype and market the thing. The MS/PC.

If you feel challenged, don't worry--so is your new laptop! Here at last is manageable technology for the technically unmanageable mind. Remember dial-up? Well, it's back, and better than ever!

Dude, yer gettin an MS/PC!

Last night my wife got a new Apple. She need never worry about me using it. It was hard enough just opening the box.

So, here I am headed for my appointment with the neurologist. I have a lot of questions, a lot of complaints, which I have typed up for his viewing pleasure. I'm ready for the raised eyebrows, the blank stare, the doubtful mutterings, Hm, that's odd, I've not heard of that before.

The first order of business will be my deteriorating vision. This is not MS, he has already told me. Nor is it cataracts. So in any case, it is not his problem. Still and all, I cannot see. It's got to be somebody's problem, don't it? (Oh yeah, I forgot, it's mine).

On the phone a while back he entertained the idea that it might be strokes that are affecting my vision. Hm, that's odd. But then he ruled that out in nearly the same breath. We had a long conversation on the phone that day, wherein he thoroughly explained all the things it was not and why.

Edifying that. Fascinating too.

Given all the reasoning and evaluating thus far, it appears most likely that there is nothing at all wrong with my eyes.

I'm just a complainer.

It's A Wonderful Life

This morning my wife demanded to know where I had put the deposit slip for church funds she had had me deposit last week.

"On the kitchen counter," I said. "I always put it on the counter."

Obviously it was not there, yet and still I was certain I had put it there. Where else would I have put it? I always put it on the counter. I figure if actual memory no longer serves me, habit on its own is certain to do so (creature of habit that I am).

"Will you keep looking for it? she said, then gave me the deposit for the current week.

I had of course no intention of continuing to look for what I already knew had been placed on the counter, just as it always is. Normal people can forget stuff too, right? Normal people can misplace things, lose things, accidentally discard important documents, even money.

I know what I know. I said what I said.

Well, it turned out that the reason the receipt was missing was that there was no receipt, for you see the money had never been deposited. Rather, I found it, along with the deposits slips, in my glove compartment. This was predictable enough, given my recent history--and yet still managed to be absolutely surprising to me.

How could this money have been sitting in my car for a week? Other people's money, church money, God's money! Why had I been so certain that the errand had been accomplished? What was it that had convinced me not only that the money been deposited, but that the deposit slip had been placed on the kitchen counter?

My life becomes a pattern of seemingly reliable assumptions--a theory, an hypothesis. Guesswork and habit have replaced actual knowledge and deliberation. No longer able to call upon the surety of recollection, I turn to mere likelihood and the fidelity of habit.

Yesterday when I went to deposit funds of my own, I filled out the deposit slip, put my cash on the bank counter, swiped my card, punched in the pin, then returned the cash to my wallet.

"Um . . . I'm going to need that money," the teller said.

More and more, I depend on the kindness of strangers.

Remember the old film It's a Wonderful Life? Remember uncle Billy, who almost ruined George Bailey's building and loan institution? Right, that endearing though bumbling old fool with a crow on his shoulder and a squirrel in his pocket. People can put up with that kind of idiocy until it actually causes big problems, at which point exasperation becomes anger, and then anger becomes disregard and derision.

Now I am uncle Billy.

And though facts are facts, and though the verdict is in, I am still having a hard time accepting it. I do not see myself this way, and yet it begins to become clear that everyone else does. My objections are founded in a past aptitude and functionality that no longer exists, yet which continues to encompass my own sense of identity.

The rich man suddenly divested of his riches will yet for some time labor under the persistent illusion of wealth and the dignity it had endowed upon his life. So it is that I by the same token persist in the idea that I am still the man I was

Infallibility was a difficult enough standard to live up to, but constant failure is immeasurably more difficult to live down.

The Curse is Spreading

Another confusing day. Is it Tuesday? No, it's Thursday. OMG the curse is spreading!

One key to the problem seems to be interruption of routine. Summer, therefore, is a problem, for the first familiar routine of the day hinges on the task of taking my son to school, dropping him off (at the right school, one hopes, though this is certainly not guaranteed), and then driving over to the nearby Starbucks for the morning stint at blogging.

The removal of school from the daily schedule proves highly perplexing. It is a destabilizing element.

There are of course other unpredictable interruptions that also destabilize. Say, for instance, my wife has an errand for me to do--go to the bank, buy something at the store, or what have you. Or perhaps I myself have an appointment--doctor, dentist, a meeting for work. Peripheral demands such as these require the application of attention to detail, to time, to location, to the specific nature of the tasks to be accomplished.

The effort of attention instantly taxes the MS brain. It calls upon reserves that do not exist. Confusion sets in, and things begin to go wrong. You show up at the bank without the money. You show up at the store with a pocket full of deposit slips. You forget the dentist.

You stop at Starbucks and sit with your cappuccino, trying to gather yourself together, trying to remember what you're supposed to be doing. You remember an errand, and yet now you cannot find the car.

It used to be that my dog, Norman (God rest his soul) would follow me wherever I went, even if it was just from one room to another. I guess he was confident that I knew what I was doing, and so he followed.

Now it is Smoky who leads me. When I get up in the morning he goes before me down the hallway to the bathroom. He stops by the door and pokes his nose in. After that he leads me to the kitchen, where I will put on water for coffee.

It seems that my cognitive problems are obvious even to a dog.

Coco the Chihuahua, on the other hand, would just as soon lick me as bite me, and does not care a fig about my well being. Coco follows my wife, his mother--apparently perceptive enough to know a fully functioning person when he sees one.

I don't blame him. Nothing wrong with good reasoning.

Fried Myelin With Anemone

. . . a wise man's heart discerns both time and judgment,
Because for every matter there is a time and judgment,
Though the misery of man increases greatly.
For he does not know what will happen;
So who can tell him when it will occur?
No one has power over the spirit to retain the spirit,
And no one has power in the day of death.
--Eccl 8:5-7

Wake up calls.

I have already written of my recent hour-long brain fart fiasco with forgetting my user name and password. That happened the day before yesterday.

Remembering one thing, however, does not lead to remembering another. Remembering one thing does not restart nor restore the brain--it simply sits in your head waiting to forget the next thing.

Yesterday, having left the Winco store along with Albert with our bags of goodies for a barbecue, it happened that I could not make the car move out of its parking spot. Perplexed, I checked the brake, I adjusted the gear shift--drive, neutral, reverse--right. Everything seemed to be in order.

"Uh, Dude, you need to start the engine first," Albert observed.

I begin to see, slow as I am, that there is no respite now, there is no delay, there is no recovery as from a common illness. Broken bones will mend, and be stronger moreover in the broken places, but the brain just lies there in the head, curiously unaware, as defenseless as a sea anemone.

"Fried myelin, anyone?"

"Umm, what else is on the menu?"

"Sorry, that's all we have."

Honestly. Has a strip of bacon ever unfried itself? Has an egg ever returned to its shell?

And so this is it. My lot from here on out. This, and more of the same.

Redeem the time becomes therefore the phrase of the hour, and of every hour remaining. It is the only reasonable approach to the reality that is upon us.

Will my spirit eventually hide itself as well in the same sorts of dim corners and crannies to which my memory has already fled?

O banish the thought, for it is too harsh for the morning to bear.

Please Enter User Name and Password

Yesterday afternoon I had one of the most frightening MS moments (or rather, hours) in my illustrious MS career thus far.

At about 2:25 I sat down at my desk to start work, powered up the computer, waited for the login screen, took a couple sips of coffee while waiting. The user name and password came up, I lifted by hands, and then . . . nothing!

I could not remember my user name to save my life! I had no idea whatsoever. I have been doing this job for 17 years, I have been using this particular system, and user name, and password, for at least 4 years. And yet suddenly I had no idea in the world what to type into the field.

At first it was a Wow, that's weird sort of moment, but as the moments passed and nothing clicked, as the moments passed and became minutes and then a quarter hour and then a half hour, as the moments passed and every stab in the dark I took at typing in a likely user name failed, weird became frustrating, then maddening, then terrifying.

I suppose this is difficult to convey to anyone who has not experienced it. I suppose we have all had these moments where we just suddenly draw a blank--a name, a date, a memory--but of course such information temporarily misplaced soon pops back, and we chuckle and proceed.

Here there was no resumption, no revival, no retrieval, but only a quickening of the heart, a rising heat on the brow, a growing stuffiness in the brain, a dawning sense of panic.

The minutes marched on, ever away from revelation. The blank slate became if anything blanker. I began to search next for someone I could call, a coworker who might provide some sort of mnemonic, a phrase, a hint.

Now I had learned long ago that sharing ones troubles with MS among managers or supervisors in ones workplace is not the best idea. The sympathy that one somehow automatically anticipates does not in fact generally exist. There is, however, a friend and coworker who has been helpful in the past, who moreover will keep my terrible secret of incompetence, and so I sought now to locate her telephone number.

The idea that my current state of distraction could be further compounded had not occurred to me--until, that is, I found that I had not the slightest notion of where this person's phone number might be. Most certainly I had it. Somewhere. But where? I have, in fact, a printout of every phone number of every coworker in my department. Somewhere.

Knowledge, of course, is not presence. Two thorough searches of the desk drawers produced nothing--or rather, it produced everything conceivable other than that list of phone numbers.

By now a full hour had passed, and still I had not started work. My user name, my password, had fallen quite off the face of the earth, along with my brain.

Well, there is no amazing or edifying end to this. I wish there were. As it happens, the missing information simply popped back into my mind as abruptly as it had popped out. Sixty-five minutes later. I typed it in and began work. Later on I wrote the information on a strip of masking tape and stuck it on the side of the CPU.

What is left now is just a simmering sense of dread, a sense of just how bad things could become. And the knowledge that there's not a damn thing that I can do about it.

In the Aftermath of Lego Land

Carlsbad, CA
7:10 p.m.

There is a general level of functioning for the person with MS (aka brain damage) that is brittle to begin with, and quickly breaks down under the stress of demands that exceed the capacities of the baseline level.

One functions, in other words, within the parameters of a mild confusion--which is at least consistent and reliable--but when one or two additional matters of taxation are admixed with the preexisting dough of mentation, the whole structure wobbles, becomes Jell-O like. It droops and slouches, drunkenly weaves and stumbles.

Given the incompetence of the descriptions above, it will be readily clear that I am at this very moment suffering the debilitating effects of just such an overload.

Take the everyday matter of communication for example. Multiply the number of people with whom one is called upon to communicate by 5. A difficult enough task on its own, but doable.

Now make 2 of the 5 a father in law and a mother in law. Things begin to become more difficult. The wires are becoming dangerously hot.

Now then, cause 3 of the 5 multipliers to speak to you in a foreign language with which you are only marginally familiar, and to speak it very rapidly at that.

The result is silly putty. Capability has been far exceeded, function takes a total nosedive. It is not a matter of simply returning to a safe baseline, for the gaskets have blown, the pot has boiled over, the legs have been cut from under the whole notion of functionality on any level more sublime than that of the eel or the potato bug.

The only hope now lies in the chance to recharge. To sleep. To find a bed. Anyone's bed. Anywhere. And to sleep ... sleep ... sleep.

An Apology, Excuse Included

Having read this morning my last few blog entries, I find that I owe an apology to whatever readers there may be out there.

You see, I have had a very bad cold (no, not swine flu), and this, on top of the usual MS brain challenges, apparently brought on a temporary fit of delirium.

It would seem that at some juncture my brain (what there is of it anyway) became inextricably tangled with a science news report about a mysterious blob near the dawn of time. As it happens, my thought processes, already blob-like where focus and distinction are concerned, were in some way activated by the light of this mysterious space blob--a gigantic star (apparently) which (apparently) had exploded just after the advent of the Big Bang,

It is theorized, moreover, that at the center of this giant mysterious blob is a gigantic black hole. Near the dawn of time. An un-blob, one might say, as a black hole is a negation, an antithesis.

But let me stop before I get started. In Indonesian the word is maaf, in French it is pardonez moi. In short, and in English, I apologize.

Sincerely.