The Return of My Brain

My brain is back. I don't know how it happened, what I did, or did not do, but suddenly here it is, thinking, functioning, remembering, all as clear as a bell.

At first I thought this was maybe just some weird trick of perception--like the way an amputee feels a missing limb--but it cannot be so, for the organ proves itself in performance. The other day, for instance, my wife told me a phone number to call, and even though it took several minutes to go and find paper and pencil and cell phone, I actually remembered the number immediately and without flaw. I was astounded, amazed at the utility of the thing. I wrote down the numbers and read them back to her, just to be certain, as if to prick myself with a pin.

Am I dreaming? No, by God, it's real!

Not a month ago, had we been driving in the car together, my wife would have had to direct me from start to finish. Left here . . . straight now . . . right at the next traffic light. And yet now this sort of guidance, helpful--no, essential--before, has become suddenly acutely irritating, such that old objections return to the pilot's seat as if they had never released the throttle in the first place--I know, I know; you don't have to tell me; I've been here a hundred times before!

Surely I sleep. Surely I dream. Surely I have received without cause or merit. Shall I rejoice now, or tremble at the thought it might depart once again? Shall I tell people about this, or shall I be silent, careful of words that might shatter the gift? Can I trust my brain to stay, or does it whisper but a moment like a ghost, an echo, and arch wings of flight even as I speak.

And if it stays, then what I am to do? What to make of this brain? How should I live for having received this unbroken thing thing from the abyss?

The Brain Buzz

One of the most unpleasant of the myriad unpleasantries associated with multiple sclerosis, for me anyway, is what I will call the brain buzz, if only for the sake of alliteration, and at the expense moreover of descriptive accuracy--for you see the phenomenon experienced is really more of a hiss than a buzz, though yet again not so much of a hiss as a hiccough tucked somewhere within the electrical pulsations at work within the gray blob otherwise known as my brain (itself more blob-like I think than most).


This, happily enough, is not a common nor an ongoing symptom, but one which arises at its own pleasure, whenever it will; and is, I believe, something that accompanies an active state of MS--a warning whisper, a rumor of war. It has become according to past experience my own diagnostic tool for identifying a relapse, just as reliable as the MRI, though much cheaper.

This buzz/hiss/pulse--this heavy breathing in my brain--comes along also with a sense of light-headedness and disorientation above the norm, and also vague nausea. Whenever this hits, I wonder first off what I can do about it, then remember that there is nothing to be done but to wait. It does finally go away on its own. So far, anyway.

I wonder if anyone else has this. It does seem that MS makes its attempt in each person to present an original character--so as to make each of us feel special, I think; and also to confuse doctors and frustrate timely diagnosis--and yet there are some common threads to be agreed upon--numbness and tingling in the extremities, for instance; fatigue; imbalance.

But how about the brain buzz in particular? Anyone out there feel me?

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.

Space Cadet

Totally spaced out today--a condition which for me is a deviation from baseline spaciness. It's something that just jumps you, like a sudden dog, or a mugger. It is just there, and you find yourself realizing it rather than experiencing its arrival. It is rather like reaching for your wallet only to find you have left it behind.

This morning I left my brain behind and did not know it--which is actually not surprising, for if one leaves his brain behind, then he does not presently have a brain to know with.

There is a sort of process to brainlessness that has a character of its own--something like the laws that govern dark space and black holes. The first I knew of the absence of my brain was when I called the bank on my cell phone. My paycheck should have been deposited last night, and yet I find only $300 in my account. What the hell? What now? Have my wages been garnished by a photo radar machine? Has there been a mix up in the automatic deposit? Did my wife take my card whilst I slept?

So I set about figuring out what I'm going to do. And I instantly realize that figuring is presently unavailable. The function has been left back at home with the rest of my brain. I head for Starbucks instead. Usually I can substitute caffeine for the unavailable portions of cognition, or at least to some degree. It's better than nothing.

Next, however, after five or ten minutes, I realize that I have taken a road to Starbucks that is quite entirely the wrong road. Why? Where am I headed? The bank? I don't know.

This throws a switch, like the ones used on railroad tracks, conveying the train left or right. Clattering along the wrong road, I suddenly realize that the bank did not show the deposit of my paycheck because I had called the wrong bank.

Ultimately I end up at Hollywood Video instead of Starbucks. Obviously I have stopped here to return a movie, though a quick search of my person and my car reveals that I have no movie to return.

I start to think about the last movie I saw, and yet discover that I know nothing whatsoever about it, not even the name.

The last movie I watched was last night, about 8 or 9 hours ago.

Caffeine, they say, is good for quite a number of ailments. It is good for heart disease, and for headaches. It has even been found to be good for MS. So here I am at Starbucks, sucking the life from my cappuccino. See now much better I'm thinking now?

My Little Corner of the World

I had the strangest experience this morning, which of course will be difficult to describe, as are all things concerning the crap MS dishes up.

I had gone out as usual to drive my son to school--generally an automatic sort of thing, you know? Not something one really thinks about, but just does.

And yet as soon as I turned onto Prescott street (3 blocks or so from our front door), everything suddenly looked wrong, out of place. It was a weird sort of spatial rearrangement, like everything was tilted, or had been shifted during the night, so that the streets seemed to be pointed more to the North than to the East, where they used to be. Everything seemed jarred loose from the familiar pattern, cross streets too acute in angle, buildings and houses displaced. It was a little bit like being on LSD, minus the feeling of euphoria.

Things looked so wrong in fact, that I was not sure I was going the right way. I found myself concentrating, watching for familiar landmarks, having to convince my mind that this was the proper route.

This disorientation persisted all the way to school and all the way back home. My mind continued to entertain two opposing perceptions--first that everything looked wrong, and secondly that I knew it was right.

I cannot help but feel, even as the confusion of perception fades, that this has been merely a peek at the world to come, a world where disorientation arises more and more frequently and the confidence of awareness looses ground. And it is a terrifying scenario, against which I ultimately have no defense.

It may be that my recent trauma with kidney stones and surgery has caused a relapse in MS. I note also a new aching in my legs--the same sensation that has long been present in my calves, but now having jumped to the backs of my thighs as well. It is an aching and a spasticity, as if the muscles had been tied in tight knots that cannot be undone.

So what do I do? Go back to Copaxone and add more kidney stones to my miseries as well? It doesn't seem like much of an answer to me.

Maybe there is no answer. Probably, rather. We are inclined to believe that every malady has a cure, that there is something we can do about this. All it takes is a call to the doctor, or more exercise, or a better diet, or 8 cups of water a day. We believe it to be so, even as we know it is not so. We believe it, because the alternative is unacceptable.

The Daily Drift

I went to Starbucks this morning, as I do most every morning, to sip a cappuccino and scribble down some thoughts (in as far as one can scribble on a laptop--it becomes more a figure of speech). The things that were needful for me to bring along were as follows:

1. My laptop.
2. My cigarettes.
3. Whatever book I happen to be reading.
4. My personal grande-sized cup.
5, My cell phone.

Now, despite standing around in the doorway making sure I was equipped, and despite coming back from the front gate to get my cup, I nonetheless lacked the following items upon arriving at Starbucks:

1. The cord for my laptop (the battery for which is quite useless).
2. Whatever book I happened to be reading.

In addition, there was a hospital bill I needed to call about, tucked into whatever book I happened to be reading, and so of course this too failed to make the trip.

Therefore, I was left with essentially nothing to do at Starbucks other than drink my coffee. (Imagine that).

I swear to God, no matter how often this happens, it continues to surprise and amaze me every time. How can it be that such a simple list proves so challenging? It is a theme with me, and there are variations on the theme, but the tune of the piece is always the same. One day it is the laptop itself that does not make it, another day it's the cup or the book. It's like a CD that always skips, but skips in different places, quite randomly.

This is my brain, a damaged CD, playing whatever music it will, but rarely the whole cut start to finish.

How is it that a creature of habit such I, can yet find himself so un-moored from what is habitual?

Oh well, perhaps it will become a blessing over time. A drifting ship must end up somewhere. I just hope it's on a white beach in Tahiti.

Blank

Another blank day, but different in some way than others. I don't feel confused, just blank. It's probably just life, as far as that can be differentiated from MS. Everything has a way of getting shuffled over time, so that what used to be readily apparent becomes just this or that card mixed in with all the rest.

I no longer ask quite so often "What am I so tired?" It has become a state of being, part of who I am. I am no longer surprised that I cannot feel my feet. Rather, it would seem odd if I could feel them, for the old feet walked out of my life more two years ago. I have not seen them since. I am now used to the ones I have.

One thing I am asking, however, is why were my Copaxone shots today and the day before SO DAMN PAINFUL!? Did I go too deep? Not deep enough? I mean, they were not painful when the needle went in, but within seconds this deep down aching showed up, and grew and grew until I could hardly stand on the leg, let alone walk around on it.

As always, I ask myself "Is this a good idea? Can it really be a good idea? To inject something that makes your leg feel like it's going to fall off?

Common sense would appear to provide its own clear answer--and yet I continue, day after day, for my faith is locked up in the conclusions of "the experts."

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.

Loading In Progress . . .

Mornings are sometimes like this for me--where tying ones own shoes is a challenging enough task in and of itself. Functioning on a level any more demanding than this is initially out of the question. It takes time--time for the system to restart itself, for all the tripping, rattling programs to reboot and load. In this sense, my old Compaq and I are perfect partners in a common ineptitude.

There are things to do. I am to take my son to school, I am to go to one bank and deposit money and to another to withdrawal money, I am to pick up something at the store (I know not what anymore), and then later I will need to work.

So far I have managed only the application of my shoes and a stop at Starbucks, where I sit at this moment wondering why it is taking so damn long for anything to show up on the blank screen, otherwise known as my brain. It's like staring at that little revolving wheel--program loading--and ending up mesmerized by the same, turning, turning, turning, without reason or result.

Now my wife has called with another errand, and the dial-up part of my brain that is now working, more or less, has become fixated on these errands, so that I can think of nothing else, knowing that I will soon forget what I am supposed to be remembering.

The other day I got an I-Phone. You can write messages to yourself, set reminder alarms, and even send yourself e-mails. I could even send myself an e-mail here at Starbucks and pick it up on my laptop before I finish my coffee.

The only trouble is, I can't figure out how to work the damn thing.

Confused and Disoriented--Status Quo

I am once again experiencing a day of confusion and disorientation--a step above the usual, that is. I always find myself thinking that something must have triggered this. What did I do, or fail to do? No enough freshly squeezed fish oil lately? Did I forget my vitamin D? Did I sleep too long? Not long enough? Is this going to be permanent, or will my brain return tomorrow?

But I suppose it's just MS. I suppose I'm just feeling the lesions today, falling into the holes.

I become aware that I need to watch myself from here on out for the day. I have already driven around in circles, passed the places I was supposed to go, forgotten the errands I was supposed to do. Just five minutes ago I left my wallet sitting on the table at Starbucks while I went outside for a cigarette. Good thing the world is so full of honest people. Or blind people. Whichever is the case.

The frustrating thing is that the day itself becomes a waste of time. I had big plans this morning, but it has now become apparent that accomplishing the simplest of things is going to be a significant challenge in itself. And it's going to take two or three times as long as it should, given the time my brain insists of devoting to staring into space.

There seems no other option than to surrender this one to the abyss, reserve my energy for tomorrow, go home, take a nap.

The Simplist of Creatures

It seems so very difficult for people to understand how we with MS can be fairly functional one day and so spaced out or otherwise unplugged the next. Of course, this is just as difficult for we ourselves to figure out, so I suppose it is not surprising that the disease can seem schizoid to others. Perhaps when we feel well and competent, mentally and physically, we unwittingly foster unrealistic expectations, not only in others but in ourselves.

I think I shall never get used to waking up in the morning and feeling as though is my body and soul had been taken over by a giant sloth or by one of these eyeless fish that live in the dark at the deepest depths of the ocean. How much sense will this make to others? I feel rather prehistoric today. I feel like an amoeba.

How to describe the curtain of dimness drawn by MS? It is like walking knee deep in flood water. An all encompassing trudginess has consumed the form and character of being, a certain cotton of obscurity has transformed the fluidity of light and air, and one finds himself struggling as in a dream, to move, to walk, to think, to speak. It is as if one has been rolled up in a carpet and left against the wall.

Such a day is this day. Sluggish, fuzzy, vaguely worrisome. Perhaps I am a clam, or a snail, or a hermit crab. Yet surely not a man