Pensee

Funny thing about Pascal's Pensee--no matter how many times you read it, it remains almost wholly unread. This may be partly due to the abbreviated nature of much of the material--a jotting down of notes and reminders, suggestions and hypotheses. One finds himself included in the author's thought process, filling in, groping forward, linking this which is partial to that which is more fully developed. Because of the spaces we become in a certain way more fully involved. The picture takes a more vibrant shape because of the fragmentation itself. Curious experience.

Well, this week, once again, I am sick with the cold. Seems like I just got over one. I guess that's because I did. Great year for colds, 2009. And I am indescribably fatigued.

I have heard it said before that a person with MS is less likely to become sick with common illnesses because the autoimmune system is overactive and thus attacks actual invaders as energetically as it does the healthy systems.

Wouldn't it be pretty to think so.

But as is often the case, what seems neat in theory often fails to play out in practice.

Thus it happens that I have heard it said also that people with MS are more likely to suffer from common illnesses simply because the body is worn out and haywire, and the overactive immune system does its intended job just about as well as a fence made of Tinker Toys.

(my apologies here--because I could not think of a good simile, I used Tinker Toys).

The fact is, those with MS eventually die not because of MS itself, but from some other illness they might otherwise not have succumbed to if not for the MS.

(weird sentence ... like I said, I'm tired ... so shall I desist for now).

What Is and Is Not

What is MS and what is not? I know, I've asked the question 100 times already, and I presume that I'll ask it 100 more.

Take my recent back troubles, for instance, and the consequent difficulties with walking--caused by a compromised nerve complex, or a thing that is just simply itself, a bad back, a sudden movement positioning a particular disk such that it happens to sit on top of a nerve when I rise? Which was the actual cause?

Consider moreover the totally unreasonable amount of pain I have suffered since. Has the severity of the pain been exaggerated by MS as the already rickety central nervous system seeks to address the problem, or did I just really mess up my back this time around, without any contribution from MS whatsoever?

Why is this keeping me down twice as long as it had ever done before? Is it because the central nervous system has become less able, or is it because I am 10 years older?

And now there comes this strange pain in my abdomen. It is in the right upper quadrant and it is quite localized to one spot, as if a knife had been stuck up under my ribs. It is constant, and it wakes me at night (and yet it is bearable, unlike the pain that accompanies the passage of a kidney stone). I wake to find the pain bouncing rhythmically between my abdomen and my back, as if the devil was playing a game of ping pong with one of his demons.

What can this be?

Looking at my copy of Grey's anatomy, I find a big purple organ called the liver crouching lump-like in this very spot. So is this a liver problem? Then again, I am aware that right upper quadrant pain is often associated with gallbladder disease. So maybe that's it. Then again, maybe this is referred pain from the preexisting back injury.

Or . . . well, maybe it's MS.

How to sort the thing out? How to find the culprit's secret cove?

As I have generally done in the past, I decide once again that it may be more accurate to envision MS not as the causation for most problems and pains, but as an underlying predisposition toward trouble, the fatal crack in the foundation that has weakened every element of the dependent structure. It is, perhaps, that which potentially compromises every other function.

And it is MS which in the end makes its mark of finalization on the death certificate. Whatever the fatal process was, we find almost without fail that MS had its finger in the pie.

Complicated by, is the phrase. Chronic obstructive pulmonary disease, complicated by multiple sclerosis. Myocardial infarction, congestive heart failure, pneumonia, endstage kidney disease, cirrhosis of the liver, and so on and so forth, name your favorite, but don't forget to add that final punch line--complicated by multiple sclerosis.

If multiple sclerosis is found to complicate even death, is it not perfectly reasonable to presume that it has complicated everything else leading up to death?

Is It, Or Is It Not?

How does one know whether a problem he is currently experiencing is MS or not MS? Moreover, how does he know whether MS has combined with the problem with the result of making the problem worse, or indeed whether the present problem is making the MS worse?

Shall we see multiple sclerosis as something which consistently invades and infects all other parts and processes of the body--and of the mind too, for that matter--or does it sometimes stand aloof, disinterested in, say, the broken bone, the torn muscle, or what have you?

As recently mentioned here, I happened to hurt my back the other day. All it took was rising suddenly from a chair. The same thing has happened 2 or 3 times in the past, and so I wasn't surprised to find myself groaning with pain on the dining room floor. I remember this happening somewhere in my 20s, and then again at about the age of 40. It's not pleasant, but it goes away in due time.

Nonetheless, I find myself wondering this time around, The pain seems more persistent, more severe, and has begun to radiate to my ribcage and my upper thighs. Was it like this before? Well, had I been blogging back then, I guess I'd know. But on the other hand, I guess there was no such thing as blogging back then.

In short, I begin to connect all things to MS. Was it MS, for instance, that had caused me to fall in the first place? The truth is, it happened so fast that I cannot now remember the mechanics of the thing. Did I fall first, and then feel pain; or did I feel pain first, then fall?

This is why we should all have camera crews to follow us around, kind of like Bear Grylis, only not so entertaining. Actually more like America's Funniest Videos.

Come to think, along those lines, it would likely be beneficial for each of us to have his own MRI scanner. That way we could take a look for any events that may have happened in the brain or spinal cord and therefore be able to say with some certainty whether MS had something to do with our latest mishap or not. Not that we could do anything about it one way or the other--but still, it would cut some corners, and some costs, and would be certainly more convenient than lining up at the hospital. Right? And when not in use, the thing could be easily enough disguised as a couch or a sparring bag.

Just a thought.

But for now I am left to merely wonder whether this problem with my back is the same old slipped disk that I've suffered in the past, or whether I'm feeling the effect of raw nerves newly stripped of their myelin sheath.

Time will tell. And that, in itself, is about the only sure thing there is with MS.

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.

In This Life, It Never Ends

I'll tell ya, folks--once they got ya down, they just keep on poundin', no mercy.

A year or so ago I had to assign all my old debts to an agency called Credit Solutions, because with the expense of MS diagnostics and treatments, I simply had no money to continue monthly payments. Herein the old credits cards are, of course, closed, and new interest supposedly does not continue to accrue.

Nonetheless, I have today received a summons to appear in court by one of these old creditors. They are suing for the amount owed plus interest.

They don't seem to like the idea of the credit solutions route.

This is disheartening, frightening, and stressful for me. The idea of appearing before a court as a deadbeat is not appealing. Where will the money come from? Am I supposed to stop all treatments, discontinue visits to the neurologist, forgo any further MRIs? Sadly, even were I to take those steps, there would still be no money, as we are still paying on the MS bills so far incurred.

Add on top of this the hospital cost for my recent surgery for kidney stones. I don't know yet what the insurance will pay, but the straight, unadjusted bill so far is $13,000.

It may as well be 13 million.

These are the financial, the morale effects that come with MS--those that lurk like storm clouds on the periphery of the day to day struggle--just living with the disease. These are the locks on the chains, the electric fences, the surplus in reality that says No, you are NOT going to be okay after all. Because of MS, you will be hunted not only by symptoms and relapses, but by poverty and legal action.

Life is hard, right? Life's a bitch, and then you die. We've heard it over and over, and yet somehow, deep down, will not believe.

Pendulum

If the pendulum swings this way, it must also swing the other. What goes up must come down. I guess our minds are no more than Newtonian processes after all.

Here I am one day rebelling against the current wisdom of medical treatment, and then the next day swinging back again because of the witness of a friend as to the crippling price MS can exact on the body.

Why fortify the castle in time of peace? Who prepares for war when the enemy sleeps in a distant land?

The wise? The prudent? The obedient?

Does the effort at prevention merely admit to the ultimate attack? And if I say that prevention is wise, and call myself a fool for not making a simple investment in the same, then why do I continue to smoke? Am I a product of statistics? Are statistics greater than God? Can I pick and choose which statistics will ultimately apply?

No matter how I seek to protect my life, will it not be eventually taken anyway according to what is either transcendent will or meaningless whim?

Lots of questions, and a poverty in answers. That's life, ain't it?

Vacation

Two things that do not work with MS.

1. Heat.

2. Activity.

Heat and activity combined could probably put me in the hospital 9 times out of 10.

Activity is more or less avoidable. Heat is not.

Two weeks of vacation at my disposal, and all I can do is lie on the bed and sweat.

I had certain vague plans--a trip to the mountains, swimming in the river, maybe a day trip to the beach. As it happens, however, my legs are not working, and every time I stand up I feel like vomiting.

Distance + energy required = a two week vacation in Portland.

I become, therefore, my wife's sopir, which translated from the Indonesian means driver. All day long we traveled about Portland and the surrounding area in her air conditioned car as she attended to business appointments and client meetings. As can be imagined, it was a heck of a lot of fun.

My wife and I are very unalike. Have I mentioned that before? Of course I have. In her mind a vacation is a period of time during which one can get even more work done than usual.

I myself had always pictured lying on the beach under the shade of an umbrella, reading a book.

Well, each to his own.

In any case, for the time being, like it or not, it's all about nausea, sweat, and profound fatigue.

A Scorcher

Hooooooey! Somewhere around 107 degrees now, and I've been driven from my house, in search of air conditioning. Old fantasies of moving to Arizona one day have now wholly evaporated. No Frickin Way!

Heat like this is also another first in my relationship with MS. I had thought in the past that heat really did not affect me very much--or as much, anyway, as I had heard other people describe. Now I know better--for this sort of heat pushes MS and the overtaxed nervous system way over the hill of no return. It's like a certain point comes where there is no way to cool the overheated wires, and little fires begin to break out all over. Sensation in the toes, never veyr good in the first place, gets shut off altogether--what toes? The brain begins to drip like hot wax, calf muscles simulate silly putty.

But Oh this Starbucks feels so fresh and cool. I fully intend to hide behind the counter later and sleep here overnight.

Earlier on I felt like I was going to be sick. Felt nauseated, dizzy, off balance, developed a splitting, throbbing headache, and felt as if I might at any moment vomit. But see, I had always loved the heat the past--the pre-MS past. It had never bothered me--no, not even heat such as this. So obviously something has changed, right? Well, of course it has.

If there is one feeling in all the world that I really, really hate, it is nausea. I have always felt sorry for those with MS who have ended up with the vertigo/dizziness/nausea symptoms. Yikes.

Well, sorry if this sounds like a weather report. I'm just finding any reason I can to stay in this cool air for as long as I can.

R&R

Need to recuperate somehow, take some downtime. A lot of stress recently has given the MS a couple of good hard twists, and I end up entirely sprained--mind, body, and soul. Feels like a combination of mononucleosis and Parkinson's disease. Just want to sleep, but muscles keep hopping all over. Feel kind of like something that's dead, but its nerves keep on twitching, ya know?

I had to take two hours off work last night. Just shut down, unable to think, feverish, aching. I just crashed. Fell over into bed in my clothes and the lights went out.

No such luxury tonight. Must find a way to stay awake and function.

In the meantime what I want to do, what I mean to do, my freedom of action outside of work gets shoved to the back burner, delayed, postponed until further notice. There are not enough resources to go around. Obviously this makes life rather dreary. But there you have it. It's the old up against a brick wall scenario.

I read recently that the Japanese nation during the last year of World War II, desperate for oil to fuel its war machine, employed tens of thousands of her children in digging up roots that produced a small amount of a substance that could be turned into oil. Drop by drop. Literally a drop in the barrel.

That seems pretty close to my present level of functioning.

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."

Like a Thief in the Night

My trip to the neurologist on Thursday has left me with a lingering sour taste in my mouth. He had seemed always friendly in the past, personable, and thorough, and yet this last time I felt he was hurried and dismissive.

Maybe I'm just bummed by a new realization--yes, still new after more than 2 years, still dawning on me--that there is really nothing much to be done about the problems I am experiencing other than just the same old things--the same pills, the same tests, the same struggles.

The truth is, I don't feel like having another MRI. I mean, what's the point? What will it change? Nothing at all. What do I care if there are new lesions or if there are not new lesions? What are they going to do, surgically remove them? It's just more money out of my pocket, lavished upon, of all things, two hours of buzzing and blaring in my ears. I can get that shit for free by walking out to 82nd avenue.

Maybe what I need is comfort care--you know, palliative care. Even if I live to 85, treatment with demand access morphine seems more reasonable sometimes than these endless tests and pointless expenditures in order to gather data that is surely more interesting to the doctors than to me.

Do I seem in a bad mood? Well, I guess I am. I can sense the presence of depression, lurking nearby--I hear it rustling where the grass grows high, I know the meaning of the crows which flee from the walnut tree. Something is wrong. I listen to the shadows, strain at vision as if midday had become suddenly the dead of night.

I am tired of this disease.

Postscript

After yesterday's visit with the neurologist, examination and discussion, it would appear that for all practical purposes there's nothing much wrong with me. Whew, what a relief. It's all in my head.

But hold on a sec . . . that's just the problem! That's what I was trying to say. It's in my head, in my brain. There's something wrong with my brain!

Lordy, Lordy.

Well I got some new pills, and the doc ordered another MRI.

Other than that, I'm on my own.

Having mustered the boldness to fuss and complain (not easy for a chronic stoic), to tell the doc straight out that based on my symptoms now as opposed to my symptoms a year ago, even a month ago, it seems clear to me that most everything has gotten worse--the stiffness in my legs, the aching, the imbalance, the fatigue, the eyesight, and the confusion--yes, most of all the confusion--he left me with the clinical gem that most patients (perhaps 70 percent) will rate the symptoms they are suffering as worse over time, when in fact they have remained clinically at baseline.

So, uh . . . yer calling me a liar?

So I am to double up on my baclofen and also begin a new prescription--NuVigil, a new improved version of Provigil, more potent, long acting.

Well hell, if they'd make this stuff available over the counter, I'd forget the doctors and treat myself.

Honestly, I'm just about to scrap all this--except for the MS, which seems rather doggedly attached to me--and keep my troubles to myself in the future.

I guess there are not a whole lot of good things to say about MS, but at least there is this: It is faithful to the bitter end.

This is a faithful saying and worthy of all acceptance.
1 Timothy 4:9

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.

The Beginning

Yesterday my wife said she does not love me anymore. Then later on she said she does. The reason she said she did not love me was that I had forgotten to do something. I have already forgotten what I forgot, but specifics don't seem important. To me, anyway.

Well, it's really not that I forgot to do one thing, but that I forget to do most everything. I guess the frustration builds up.

She says she is tired of dealing with MS. That makes two of us. But here again my own fatigue is beside the point.

I can't deal with this anymore, she says, I can't deal with raising two children. Sasha (our 9 year old) will grow up, but you just keep growing down!

What can I say? How true, how true.

What can I do other than identify with her frustration? What can I do other than to agree that she would be best off without me?

What does she mean by I don't love you anymore? Isn't she really just talking about the man she married as opposed to the stranger she is now stuck with?

It seems that women use words differently from men. In her mind, on her tongue, love and hate are somehow able to play at mutual inclusiveness, contradictions become concepts rather than absurdities. Expression is a matter belonging to the moment, not to eternity.

I feel, therefore I speak, she says.

And I think, therefore I am.

I remember walking one time in the park with my second wife. We had been married some 12 years at that point, and things had been going downhill. It was hard to get her out of the house, it was hard to get her to talk. It was hard to get her to do anything at all other than sit on the couch with her laptop, lost to our family in games and chat rooms.

As we came down the hill, our dogs trailing behind, she turned to me and said I don't think I'm in love with you anymore.

Deja vu, right?

What was she saying, really? She was saying she missed the romance, the newness. She was saying she missed the sparks and fireworks of courtship. She was saying she missed being young, missed being thin, missed the flirtations of men, missed having a choice. In cyberspace she gazed hours on end at the reflection of the world--a different world, a world of dreams and possibilities.

I knew all this, and comprehended according to the patterns of the world. And yet deep down it stuck with me, those words, after so many years, I don't think I'm in love with you . . . Deep down, where things are judged and discerned according to the most rudimentary laws of living, the words themselves nested and remained.

I think of that now as the true beginning of the end.

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.

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.

Strike Up the Band

"Arise, and do not be afraid."
--Matt 17:7

Today in Portland the world famous Rose Festival Parade takes place. Sant Louis has gone downtown with Roy. I myself am content to experience the thing secondhand.

It is raining, as usual. In 55 years, I think the day of the parade has never been sunny. It's some sort of jinx. All these Oregonians standing on the sidewalks in the rain, unwittingly starving for vitamin D, growing MS in our central nervous systems like dry rot in wet kitchen corners.

Gee, that was an unpleasant sort of thought, yes?

Yesterday I happened to be sitting quite a while in a hard sort of chair, a chair with a wooden seat, reading Jojimbo, a comic book in the Indonesian language, when I noticed that my legs had by and by gone all but dead, but for a sort of thrumming feeling, if you know what I mean.

Now I don't know if this was related to MS, or to sitting in a hard chair, or to sitting in an awkward position, or to sitting too long, but whatever it was from, it afforded an opportunity to experience in a purely physical sense what it would be like to lose ones ability to walk.

Feeling (or rather not feeling) is much more complete than imagination when it comes to things like this. This loss of proper sensation and function is not paralysis, but it is the next closest thing, and I suddenly understood what it is about MS that puts people into wheelchairs.

It is not that you cannot walk at all, it is just that doing so, even from one end of the house to the other, would take hours and eventually result in multiple injuries.

Well, eventually my legs returned to normal--normal for me, that is--more of a low level, manageable sort of thrumming, and I was glad to be stumbling about at my baseline. It was almost like being perfectly healthy. It is all relative, you see.

And I had learned something, experientially, such that my appreciation in real time had deepened.

MS, after all, is all about learning, right?

Yeah right. Sure it is.

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.