Adult Foster Care

Some twenty years ago--though it seems more like an eternity--my second wife and I lived in an operated an adult foster care home. We did this for about ten years of our marriage, finally escaping in the year 2000.

It was a hard job, doable only by personal compassion and grace from above. It was not an 8 hour a day job, but a morning to night job, day in and day out. The needs of unwell elderly people do not adhere to the pattern of a 40 hour work week.

On Sundays we often had the help of one or another substitute caregiver--generally terrified, rattled, confused young women who would decide within a week or two that they would be better off either to travel around the world or work at McDonald's.

We did not go out dancing on Saturday night, we slept, and closed all the doors to our section of the house, and pulled all the shades, and pretended we were not home. On Sunday we did not drive to the beach or go to baseball games, we went to church, mouths open like hungry birds, craving the food that would fill and sustain.

If I learned one thing about old people during those years, it was that I did not want to become one.

We had in the house anywhere from three to five people, depending upon how many had suddenly died and how many the State had been able to resupply us with. Edith, Ethel, Virginia, Donald, Grace. I remember.

To that point in my life, I had never been around older people. Both sets of grandparents had died before I was born. My mother was adopted and did not know her biological family. My father's tree had withered early on. Being thrust, therefore, into the constant company of these decrepit and somewhat smelly creatures seemed akin to having been dropped off on Mars.

On the first night of our residence I was awakened by a tap-tap-tapping on our bedroom door. My wife would not wake up, and I figured that if I ignored this knocking, it might just go away on its own accord.

But no, of course it continued, and was accompanied moreover by a voice now.

Hello? You? You? Hello?

And my wife would not wake. For all appearances she had either taken sleeping pills or simply passed away quietly in her sleep.

Well, I can handle this.

Struggling into my robe and slippers, I made my way through the dark of our bedroom toward the tap-tap-tapping sound. I would simply tell the woman to go back to bed. I would explain that it was the middle of the night. If there was some kind of mess out there, I would either clean it up, or if at all possible push it aside for my wife to deal with in the morning.

I opened the door, and there she was--Ethel, in all the glory and innocence of her original creation--in short, butt naked except for a pair of clunky black shoes, and of course her cane, which had been responsible for the tap-tap-tapping.

What in Christ's name . . .

"Ethel, what do you want?"

"Well," she said, "I don't know what I'm supposed to be doing."

And so you wander around the house naked? What kind of sense does that make?

"You're supposed to be sleeping," I said. "Ethel, you got no clothes on."

Worried, fearful, then indignant, Ethel surveyed her own sagging flesh.

"There's no one here," she said. "They took my clothes."

I was just wondering whether there would be any point in explaining the mutually negating structure of her statement when, praise God, my wife showed up at my side.

"Ethel, what the hell!"

She took poor Ethel by the elbow and led her away, back to her room, to where she was supposed to be, to what she was supposed to be doing.

So ended my first day and night as an adult caregiver. The good news, though I did not know it at that moment, was that we had only ten years to go.

The Poseur

When pride comes, then comes shame
--Proverbs 11:2

The trouble with being an accomplished poseur, while having a chronic incurable disease, is that you may end up convincing others that there really is nothing at all wrong with you--which is, by the way, something which others start out wanting to believe anyway. The efforts, therefore, that you make toward perfecting the appearance of function in both body and mind end up being all the proof they need to pronounce you as being in fact perfectly well.

At the same time, you have set a standard that you cannot ultimately hope to live up to. Failure is guaranteed, because success had never been any more than a trick of smoke and mirrors. Things happen, things come up. Suddenly you are called upon to function according to the competence you have pretended to, and the mighty fortress falls flat, having consisted of nothing but ashes to begin with. You disappoint not only yourself, but others whom you have fooled into faith.

You made your own bed, now sleep in it. That's what my mother used to say.

The poseur, who at the very base of things means to save his own pride and self respect, lays his own trap, nurtures the very revelation that he fears.

Failing oneself is always forgivable. Failing other people can be devastating.

We who have MS find ourselves in some sense running from what is already ahead of us.

The Man in the Mask

God has given you one face, and you make yourself another. ~William Shakespeare

I spend a lot of time these days masquerading as a normal person. And I'm becoming quite good at it, if I do say so myself.

You make various adjustments in your style of response, in what appears to be your baseline character. You become thoughtful rather than quick witted; you become deliberate rather than decisive. You learn to delay and divert, and you learn to reserve your mental resources in order to apply them to the expenditure of buying time--for you are continually behind the curve, continually catching up, and continually covering up.

I become therefore a magician. My tools are diversion and slight of hand. There is most certainly a bird or two up my sleeve. The competence I seem to possess is a product of sheer illusion.

I am a shape shifter and a changeling. I may appear to be the prince, but I am in fact the toad.

My secret, that which I so carefully intend to disguise, is stupidity, ineptitude, forgetfulness, sluggishness; all that is feeble, slow, dull, unworthy--a mental impotence that eats away at personal pride and self-esteem as surely as mice eat at the block of cheese.

Some people apply their efforts toward designing the latest rocket engine, some toward winning the Nobel prize. I apply mine toward the goal of thinking straight for five to ten minutes at a time.

I am not so much the man in the mask, as I am the mask itself.

Healed (Again)

Today I received my third faith healing. Getting kind of tedious, honestly. But what can you say? No thanks, I don't want to be healed? No, you pretty much got to do it, if only for the healer's sake. Who knows, if you turned them down, they might curse you instead.

I was feeling pretty good right at first, but then realized pretty quickly that I hadn't actually been healed, given that I couldn't think straight and my wife became angry at me because of it.

I guess maybe you have to go to one of the big shots like Benny Hinn in order to get a first class healing. Kind of like going to Johnny Cochran for legal representation rather than to the Howard brothers, Mo, Larry, and Curly.

The funny thing--and the thing that pastors do not appear to see-is that MS has been for me as much an instrument of healing than anything else. It is one of those ironies, so prevalent in the life of the spirit, that weakness ends up being strength, and sickness ends up being health.

And Jesus said to him, "See that you tell no one; but go your way, show yourself to the priest, and offer the gift that Moses commanded, as a testimony to them."

This is Christ--the God who exists without need of your efforts.

Happy Trails (or is it Trials)

Had my first Complimentary Customer Care Conversation with the Copaxone Consultants yesterday (too bad yesterday doesn't start with a C). You know, the ones where a representative calls in order to share how easy, and actually fun it is to inject yourself with toxic substances. Got my free products coming, of course--a durable plastic storage container for 30 glass syringes, another plastic container for travel, and a gel pack for injection sites. I was hoping for some Cuban cigars as well, but it looks like these are no longer being offered (if they ever were).

I also had the opportunity to rate various aspects of treatment and personal satisfaction on a number scale--1 equalling No, not really, and 4 meaning Yes, I love it!

When asked about my level of commitment to the treatment, I answered 2.

This apparently caused some red flags to shoot up with the interviewer.

Why 2? Are the injections unpleasant? Is there something we can help with? Do you believe you really have MS, or are you unsure? Do you need more literature about Copaxone?

No, it's just this irritating, unreasonable gut feeling that I cannot seem to escape--the feeling that somehow when ones body objects so strongly to the introduction of this or that foreign substance, it could somehow mean it's not a good idea.

Your body objects? How do you mean? Is there something about the injections that you don't like?

Well, I uh . . . .

Would you like to have one of our nurses visit your house?

No, I'm just saying . . . .

Are you having pain? Are you depressed? Do you have questions? Are you dizzy, breathless, confused, disoriented, having chest pains, gangrene, paralysis, loss of vision or function in any body part?

You know what? I wanna change that 2 to a 3. It's really not a 2 at all. I don't know why I said 2. It's more like a 3, honestly, or even a 3-1/2. In hindsight, I'm changing it to a 3-1/2.

Now that's more like it, Mr. Boughton. Keep yer chin up, will ya?

Happy trails to you, until we meet again . . . .

Fresh Off the Boat

Today two new foreign exchange students will be getting off the train, so to speak (or boat may be better) to shack up with us for a while--one from Japan and one from Saudi Arabia. Looks like I will have to make reservations for the bathroom for some time to come.

I know there's not much of a chance that they will be as invisible as Mamdouh was. He had a real talent for that, not shared by many (human beings). Though he has left us, he is still floating around town somewhere. Every once in a while he will call. Hi Richard. How are you. I'm fine. Maybe I come on Saturday. And that's about it. As can be readily appreciated, he continues to struggle somewhat with English.

But that's okay. I myself continue to struggle with Indonesian. Part of the problem is that the language includes both the official textbook word for a thing, and then also the word that is not in the books but which everyone actually uses.

Money for instance. The correct word, the one you will find in the dictionary, is uang. The word that is used in speaking is duit. I suppose it is rather like dollar and buck.

So perhaps we speakers of English are just as guilty as they.

So now our house is to become the battleground of four languages--English, Indonesian, Japanese, and Arabic--and whatever sub dialects there might be. Add in Labrador and Chihuahua, and this could become a bit confusing.

That's where Starbucks comes in. My table, my laptop, my coffee, my sanctuary.

Is It MS, Is It The Medication, Or Is It Just Life?

Such are the three questions we who have MS are continually confronted with. The neurologist may ask "Have you had any problems since I last saw you?"

Well of course. But should I be talking to you about them, or to my PCP, or to my psychiatrist?

Who knows?

Since switching from Avonex to Copaxone, for instance, it seems to me that I have been significantly more fatigued. Given, however, that fatigue is one of my enduring MS symptoms anyway, is this just an exacerbation of that baseline condition, or does it actually have something to do with Copaxone, or is it my lifestyle of late, reduced sleep perhaps, too much activity, not enough activity?

Who knows?

MS is a stealthy creature, elusive, secretive. It is fond of disguises and trickery. It is like the song once sung by the surviving gestational twin--You got my brother but you didn't get me, 'cause I was hidin' behind the left kidney

I've been feeling depressed, doc. But depression is not generally associated with Copaxone. Is it? Then again, it can be associated with MS, with nerve damage. And it is also associated sometimes with simple day to day living. Or the weather. Or the bad attitude of your mate. Or the bad attitude of the national economy, and the fact that your retirement has just been cut in half.

Exactly how excited are we supposed to get about injecting a treatment that hurts like hell and leaves saucer sized bruises on the skin?

Doesn't this seem counter intuitive--the notion that injecting a substance that elicits an immediate objection from the body is nonetheless a wise thing to do?

Or am I just being oversensitive, a grumbler and a complainer?

I'm tired, doc, and my right arm was paralyzed yesterday for 2 hours and 14 minutes, and my feet feel like bricks, and I'm continually confused and disoriented, and for some reason I'm kind of bummed out, ya know?

Who ya gonna call . . . ?

The Heart of Carelessness

Knock on the sky and listen to the sound. ~Zen Saying

Sometimes I forget to protect myself. Most times, really. Well, lets be honest--I always forget. In fact, I cannot say that I even try to remember, I merely tell myself that I am going to, and then proceed straightaway to ignore my own advice.

Why then, given my own stubborn lack of prudence, do I continue to be surprised by unkindness?

Is there something to be gathered up, treasured to oneself in the wounds so carelessly inflicted by others? Does unkindness without recognition remain undone, something that never happened?

This is the heart of carelessness: To inflict pain or insult without acknowledgment or remorse.

What if people had no target, no victim readily available? They would, of course, curse God.

And yet, as the Kabbalists say, when you curse another human being, you curse God as well, for the object of the curse is His image. We are that which of He is visible.

God does not react. He cannot be touched. Therefore the individual is a far more satisfying objective.

Why does a man, because of kindness, feel stupid? Why does it seem a reasonable option to learn for ourselves the carelessness by which harm was in the first place inflicted?

Do you remember me, the one you love, the man you made of words and kisses?

Strange world, ours. World of questions and riddles, and the answers all of mist and enigma.

Eyesight as Opposed to Vision

When my wife was a teenager and living in Jakarta, she lost one of her eyes in a car accident. I say "one of," because I cannot actually picture just now which one it is. One does not really notice it, and this is not only because of the medical competence nowadays in supplying artificial eyes, but also because of the competence of her own personality and self esteem. The fact is, I did not know she had only one functioning eye until she told me so.

In this way, among many others, she is an inspiration to me. She complains not at all, never even mentions this deficit in vision. And here I am thinking myself unlucky for having to have cataracts removed--missing the immensity of the difference between a corrective surgery and the traumatic loss of an entire eye.

Life is a challenge from the outset--physically, emotionally, spiritually--and the individual personality either devotes itself to overcoming or to complaining. It is perhaps the central delusion of living that life itself should be without trouble. We are surprised at adversity, though it stalks us relentlessly from the cradle to the grave.

Those who are hardiest among us are those who understand that life is not a stroll in the park but a struggle to attain the end of each day with our faculties intact, to borrow a phrase from JD Salinger.

I may sometimes find myself lamenting the damage I have suffered from MS instead of acknowledging amazement at the capacity of my body to heal itself. In other words, I appreciate misfortune while making myself blind to miracle.

And so I remember my wife's spirit, her resolute refusal to be defined by anything other than her own hopes and dreams.

Goodbye Doesn't Mean Forever, But it Sure Can Come Close

Indonesians abbreviate everything. This makes it very hard for a guy who is trying to learn the language. They abbreviate in writing, and they abbreviate when speaking.

They will write, for instance ng when they mean nggak (no). They will write nunggu when they mean menunggu (wait). I have often seen them use the abbreviation gw. I still do not know what this means, though I am pretty sure it is not a reference to G.W. Bush.

Given this rampant habit of abbreviation, it seems strange to me that the same propensity does not translate to the matters of everyday living. Something as simple as saying goodbye, for example, would seem a perfect opportunity for employment of abbreviation. Sampai jumpa. Bye. See ya round.

But no, it soon becomes quite clear to anyone who has spent time with these people, that goodbye is a process that can last anywhere from twenty minutes to an hour. The native English speaker, therefore, learns to ignore all words in bahasa that translate to the notion of goodbye, as we understand it. The words are meaningless. They do not indicate any part of what is meant or what is done.

When first uttering any word or set of words which in bahasa Indonesia indicate that a parting is about to take place, the Indonesian person has no actual intention of going anywhere. He or she has merely instituted the first phase of a process. One will note that on the first instant of declaring an intent to depart, the Indonesian will move away from the door rather than toward it.

Lets say that my wife is at a church function or at a party of some sort, and there happens to be one person in the room whom she has not yet introduced herself to. It is the surest wager in the world that, having expressed her intention to depart, she will straightaway cross back to the far end of the room in order to initiate a conversation with that person. What did she mean when she said goodbye? Nothing whatsoever, you see?

Why they do not use the same word for goodbye and hello, as the Hawaiians do, I cannot say. Perhaps it is just a thing that is presumed.

One cannot fully learn the language without adding on the culture. So it is that when my wife says goodbye, and my son heads for the door, I catch his arm, shake my head, and tell him to go back and play with his friends.

Because the fact is, we are not going anywhere, any time soon.

This Love, So Long Ago

So, last night I was looking around for my missing flash drive. My wife had kindly advised me, some time back, that I should back up all the files on my laptop, just in case. She's that kind of a girl. It is not only the computers that get backed up, but also soaps, and deodorants, and toothpaste, and toothbrushes, and air freshener, and shampoo, and . . . well, you name it, it's backed up. Except for the toilet, that is, because we have backup Liquid Plumber.

Unfortunately, however, these flash drives are rather small, and they have a way of wandering about when you're not looking. Kind of like socks.

In any case, I was looking here and there in all the likely, and some of the unlikely, places for this flash drive when I discovered an old floppy disk drive--the portable kind that you plug into a USB port. Remember portable floppy drives?

Lo and behold, there was also a floppy disk in the floppy drive (neither of which, as anyone knows, is floppy).

Hm, what could this be? I cannot have seen it for at least 5 years. Why, this is not a floppy drive at all--it's a time machine!

Forgetting the hopelessly elusive flash drive, I brought instead the portable floppy one to my laptop and plugged it in.

What went ye out into the wilderness for to see? A reed shaken with the wind?

What popped up on the screen, rather stubbornly so, dragging little floppy feet, were some twenty files, in the old Word Perfect, of poetry. Yes, these were love poems to the woman who got away.

And more than that--they were multiple little windows opening onto a time, so alive, so vital then, that has slowly faded over the years like red sheets which have hung too long in the sun. Here was the record of life as it was, the fullness of hope, the sadness of dissolution. Here the heart of a younger man, questioning, falling, fighting, dreaming.

My God I was in love with that girl. Or at least with who she seemed to be. Or at least with what I myself might one day be.

Yet that is still not right, there was something else--the thing that is lacking, the face of desire, the freedom which beckons--for freedom itself is a female thing, and the wind to which poems are always addressed.

Were you there,
there to meet me,
tall leaves trembling,
black hair shimmering,
seeming touching,
soft lips meeting
underneath the oak last night,
and did it seem
in sun we swayed
just like the oak leaves
overhead
and was your skin
like satin then
(or was this in another dream?)
Did you know
as much of me
as what you offered
willingly,
or truly lay
between my knees,
your summer hue
receiving me?
Will you come now,
come with me,
in our bed
of oak tree leaves?

I remember that when I wrote those words, I had not even met her yet--and yet it somehow seemed I had. It was like that--as if not knowing the flesh, our spirits fed on passion alone, sharing beforehand what flesh could not, and never would.

You breathed in me
I came alive
You said rise up
I did arise
You made me new
a rib of you
gave back the gifted kiss,
and held for me
in muted time
within your bosom
sleeping rhyme
hushed beyond
a graceful finger
faithful to the day
when lips would part
impress on mine
the breath that was
revived in me,
You breathed essential poetry,
my soul did live again

Such were the awakenings of that summer and autumn, in the year 2004. Reality, in hindsight, could only have paled when placed beside such passions.

And straightway one of them ran, and took a sponge, and filled it with vinegar, and put it on a reed, and gave him to drink (Matt 27:48)

Life can be bitter nectar indeed.

Youth Can Be An Awful Thing

Having seen the ophthalmologist this morning, it appears (a visual term) that I will need cataract surgery. although first the doc wants to make sure this is not MS masquerading as a cataract--so more tests to come first.

My neuro-ophthalmologist has already done these tests, of course, but why believe a neuro-ophthalmologist when you can order the tests again for yourself and charge twice, right?

Well, you're awfully young to have all these cataracts, he says.

I apologized, of course. What else could I do?

I've said it before, and I'll say it again: New body, new body!

I suppose the good news is that I am awfully young-- especially at my age. Unless you put the emphasis on the awful part.

Unspoken

This aching I will keep to myself nor whisper once of the straddling demon nor speak of thinking that has fled its office No, nor breathe the constant complaint that cries for the highest seat-- I am not the man I appear to be and that is the way I want it

Progress Report

So things are not so far going well with my book. I shouldn't be surprised. My agent done told me. But I guess one anticipates the best, despite the odds. Or anyway, I've always been that way.

But the word is, received just this morning, that no publishers have so far expressed interest. Neil tells me that we still have a lot more to send to, but still I can't help feeling bummed.

Why?

Well, as the day passed, and as I had nothing better to do, I started to kind of parse this out. Why does the possibility of not being able to publish this book make me feel depressed? What has been the nature of my hopes, what has been anticipated, what changes would take place in my life?

As for the latter question, having published a book some years back, I already know that nothing of essence really changes in life. I mean, you have a period of high spirits I suppose, and pride, but there is nothing really to sustain it over time. You find eventually, in fact, that you rather dislike the book, and so you begin to work on something else. Or you find something better yet to do with your spare time.

Writing this present book was to begin with something of an accident in itself. The thing sort of rose to existence at the suggestions of people who had read my entries in online MS communities, so that eventually I took the cue and thought, Well maybe I should. And so I did.

Did a lot of sweat and effort go into the project--hours of struggle, painful doubts and soul searching?

No.

The fact it, little more effort was required day to day than putting my pen to the paper (or rather, my fingers to the keyboard). It was not only fairly easy, it was fun. And this, as I concluded while sitting on the toilet, is the key.

Of course, I would like to do something for my wife which would result in the form of honor, not to mention money (or wait, I just did). I believe it would be of great importance to her for me to make money through these efforts. And I wouldn't mind the money either, if only to be able to give it to her.

And of course I would like to be able to leave her something--in the same sort of way that I left my ex-wife (though sort of accidentally) $200,000 dollars and a house. It would be something that she could put away, a security I had been able to leave.

Nonetheless, when it comes right down to it, what bummed me out most of all was the thought of losing my reason for all the pleasant mornings I have spent at Starbucks, or in the yard at home in the summer, writing, remembering, philosophizing, searching, and sharing. It has become a part of who I am, of what I do. How else am I to spend my time and garner like reward?

And so it happens that while still on the toilet I realized with some relief that failure to publish need not be translated as a lack of reason for writing. If, after all, I have failed to please an editor, or editors, I have to remember that I did not intend to please him, or them, in the first place. I wrote what was in me. I explained myself.

And I do not think they fault me for that. They're looking to make money, and that is the basis that they buy upon. Money is nice. I like it too. But money and writing are two different things. Just like apples and oranges.

cross posted to here

Breast Feeding for Men

Well, if you stick your neck out in life, be ready to have your head lopped off. So said someone. Or should have if they didn't.

Lets start out with a really bad sentence. Why not? It seems fitting enough, because I feel like a really bad sentence this morning. Maybe it's the Copaxone. Maybe it's MS. Maybe it's just the weather.

I read in MS Central just now that breast feeding may prevent MS. Maybe I should start. I dunno . . . it's a big step, with but small resources at hand.

Perhaps someone more amply equipped could do it for me. Maybe that would work just as well.

It seems like after one has MS he can no longer live a normal life of common circumstances and events without connecting every little thing to his disease. I catch a cold virus, for instance, and find myself suspecting that the newly started Copaxone is at fault. I feel bummed out and straightaway decide that I've developed depression due to nerve damage. Obviously the axon that conveys the smile response has been compromised by the disease process.

Now hope does not disappoint, Paul tells us in Romans (5:5).

I suppose that depends upon what one places his hope in.

All I want is a tall ship, and a star to steer her by.

But what ship, what voyage, what star?

I have a dream . . .

Don't we all. Amen. Can I get a witness?

Impress your friends and family. Write a book, win the lottery, purchase a penile implant.

How desperate indeed are the investments we make in the temporal things.

While hope itself does not disappoint . . .

because the love of God has been poured out in our hearts by the Holy Spirit who was given to us.

The Uncommon Cold

Having a common cold when you also have multiple sclerosis is just about the same as feeling like you're one step away from the grave. A baby step at that.

Those things that you already suffer from at baseline--various muscle aches and pains, unsteadiness in the legs, a fluctuating though ever present sense of fatigue, the constant challenge of clear cognition--grow monstrous as the body tries to deal with the symptoms of this new illness.

From the outset you are overwhelmed. Your system was already working at peak capacity just to deal with the MS, and now this! No, it is not just a cold, not just a common winter virus--it's a tidal wave, a tsunami, a landslide.

First the right, then the left, and you're down for the count--blind sided, sucker punched--it's a TKO.

And so there you lie upon your bed, an inanimate lump, a boneless slug.

Are you sick? someone asks.

Erg, you answer.

Do you want some soup?

Merk . . . "

Would aspirin help?

Glubb.

Your desires cannot be deciphered. Speech is beyond your means. Language itself has been bound and gagged by illness. If only you could vocalize your true desire--

New body . . . new body.

Gnats and Camels

A fellow Copaxone sufferer pointed out in a comment yesterday that Copaxone is associated with the development in the long term of certain cancers. It says so in the very, very, very small print on the packaging. I am taking her word for this, as the small print on pharmaceutical packaging is far beyond my ability to decipher, glasses or no glasses.

Naturally, I'm thinking Oh, no way! The last thing I need is cancer, right? I mean, cancer runs in my family to begin with. It has in fact made its own comfy home in our tree. Would it not be the height of stupidity to persist in injecting cancer into my body?

But the funny thing is that while I'm thinking these things, I am also puffing on a cigarette.

Once again I find myself gazing blankly upon my own hypocrisy.

Ye blind guides, which strain at a gnat, and swallow a camel!

Well, it's a habit. Hypocrisy, I mean, and tobacco as well, though I have not literally strained at gnats or swallowed camels. Yet.

I tend toward what is convenient, in deed and in belief. Convenient for me, that is.

I will bring this information regarding Copaxone to my neurologist, though I will not mention tobacco consumption. So there you have it. I ought, actually, to be ashamed.

Stupid Is As Stupid Does

I just noticed that there is like no one reading this blog. Am I really that boring, folks? Well, I guess my life is not all that exciting. Neither is MS all that exciting. So duh. No brainer, right?

But what can I do? I mean, I'd rather be writing from some exotic foreign locale, say the top of Mt. Everest. Well, on second thought, I wouldn't. Lets say maybe the little hill down the street from here, the one you can drive to the top of and park.

The one positive thing I can say for Mt. Everest is that there are no parking lots up there, which would lessen my chances of getting lost. I have particular trouble with parking lots for some reason. One would never have guessed, before MS, that a parking lot could be so mystifying. But there you have it.

My wife said to me this morning that she had just noticed yesterday that I have trouble thinking. Uh . . . okay. Two years after the onset of MS, she notices this? Better late than never, I guess.

But perhaps this says something about the power of appearance. It's the old You don't look sick routine. The confusion rattling around in my brain is of course perfectly obvious to me, but what does confusion look like from the outside. Perhaps I seem just a bit befuddled sometimes, a bit absent-minded--too much on my mind, no doubt.

My stepdaughter concluded the other day that I was just getting old. I suppose that people attempt to minimize the disease by suggesting there's nothing profoundly wrong--it's just a natural thing. You're getting old.

No, I'm not getting old, ya little punk!

Maybe part of it is that people don't want to face things any more than we do. The difference is that they have a choice, whereas we do not. Illness often has a way of seeming illusory, right up until it slaps you in the face.

Or maybe I'm just playing stupid. Maybe it's convenient sometimes to be stupid.

But of course playing stupid would be a luxury. I don't have to play at all. Or if I do play, it is in pretending that I'm not.

The Moon and the Sun do Matter

Maybe the problem is with Tuesdays.

I can go back and check easily enough, look through my records, do some research of my own. The doctor's have their theories, I can have mine as well.

What if my confusion comes mainly on Tuesdays? What would this mean? Would it mean, perhaps, that there is nothing wrong with me, but something wrong with Tuesday.

What about Tuesday would cause pseudoneurological symptoms of clumsiness and confusion? Could it be somehow astrological, the positions of the planets, the attitude of the moon? Surely there is something to this, for they have been talking about it since the beginning of time. Is it really just witchery and superstition, or is it the foundation of science itself?

Am I grasping at straws here, or are the straws grasping at me?

I suppose the critical test would be to somehow find whether everyone is affected in a like manner by Tuesday--in which case, were this to be a positive finding, we would have not only a scientific curiosity on our hands, but an actual conspiracy--though the identity of the conspirator will remain an enigma.

But I guess nothing is ever this simple. A more likely scenario would be that different people are affected by different days--depending upon the shape of the cosmos and ones particular relation to it that is. For instance, a person born in August may be more sensitive to Thursday, May to Sunday, and so on.

My day is Tuesday, or rather I am its. Every Tuesday I am stricken with cognitive disorder, memory loss, general confusion and clumsiness--all very easily mistaken, admittedly, for symptoms of multiple sclerosis. But that's how it goes with medical disorders. You give something a name, and so it is known. My dog, for example, used to be just another Labrador before we bought him, now he is Smoky, a family member.

Tuesday-itis, that's what I call it. Cut the day from the week, and I'd be just fine.

Global Warming

Well I swear, if we get any more of this global warming here in Oregon, we're all going to freeze to death. Or did I miss a month? Has my mentation gotten that bad? I was thinking it was March, but here it is snowing like January outside.

This sort of event, more evocative of global freezing, seems a stroke of particularly bad luck for Al Gore's theory of melting ice caps, parched dust bowls, the earth turning upside down, and such-like. Frankly, I'm so tired of snow and sleet, bone chilling winds and frigid nights, that I say bring it on, Al, and get a move on! Even though we might end up extinct, at least we'd be warm along the way.

What's better--a short life in the tropics, or a long life in an igloo?

It so happens in life that we often appreciate the face of the moment and miss the aspect of the eon. Catastrophe wears the mask of illusion right up to the moment of revelation. Poor Al finds himself in the place of Noah, a modern day visionary turned laughingstock by the overwhelming illusion of the moment.

For when they say, "Peace and safety!" then sudden destruction comes upon them, as labor pains upon a pregnant woman.

In this same manner, I sometimes decide that I do not have multiple sclerosis at all. For I feel just fine, you see--especially since going off Avonex, the treatment having been worse than the disease. I mean, sure, something happened a couple of times over the last couple of years. The evidence resides in my legs, in my stumbling gait, in a permanent confusion of thought and a stubborn companionship of baseline fatigue. But maybe that's it, that's all she wrote. Why go back on medication, why bear the burden of those excessive costs, why presume the worst case scenario for the future rather than the best?

And yet the apostle Paul, as quoted above, spoke of the persuasiveness of illusion in the face of the inevitable reality. Shall I believe in what seems most convenient. Is the man of faith wise, or merely callow?

(more)

Pasteboard Masks, III

In Auschwitz during World War II certain Nazi "doctors" performed an experiment on an unwilling subject supposedly designed to measure the effects of progressive brain damage. Ultimately what was revealed, as in all such Nazi efforts, was the experimenters' own identity as members of an inferior race.

In any case, their study involved banging a young man over the head with a hammer two or three times, and then standing back to watch what he would do. Having cataloged the effects, they would then repeat the sequence, taking aim, bringing down the hammer, stepping back to observe.

Soon the young man began to go blind. He continued to struggle at his tormenter's command, trying to walk, turn to the left, turn to the right, pick up an object. He had, after all, no other choice than to be as cooperative a patient as possible.

This horror was actually filmed, for the future glory of science no doubt. I myself have seen the film, and it has haunted me ever since.

Now did the young man's personality change as well? Did the doctor's take aim at the personality chamber in the brain? Then again, this was not likely a goal of the exercise. What was the goal? No more than a perverse amusement, I would guess. A pastime of evil.

We have all seen cartoons wherein a character will be knocked silly by a blow on the head, then smacked again so as to return him to normal. But we know now beyond a doubt, thanks to those Nazi doctors, that this is not the way it works.

Damage to the brain, to the spinal cord as a result of MS becomes manifest quite clearly in the physical realm. It may affect sensation, it may affect gait, it may affect muscle tone, it may affect cognition, and all of this is perfectly observable.

But what about the personality, that which cannot be objectively observed.

What we can say with assurance is that personality change is a product of experience, a response to a change in personal reality. Because our circumstances have changed, our viewpoint changes also in order to comprehend what is new. We describe ourselves according to who we seem to be at any given time. Jupiter is suddenly more like Mercury.

And yet, is our response really the same as personality, or is it personality that determines the nature of our response?

I have seen the gamut of reaction to MS in the past few years--ranging, person to person, from anger to insult, from malaise and depression to inspiration and enlivenment. I have seen growth toward faith and bitterness toward death.

Far from being damaged, it would almost seem that personality becomes activated, charged. It stands at attention, opens its eyes, searches both self and heavens. It becomes, in short, as overactive as the hay wired autoimmune system.

I think that it does not change, so much as it invites us to truly become. Here is the perfect moment to grow. Adversity is playing its catalyst role. Therefore, seize the day, and reap the riches disease has unveiled.

Pasteboard Masks, II

Assuming there is such a thing as a baseline personality for each individual, can the very existence of nerve damage, in and of itself, with no qualifying factors added, cause a change in the same?

I suppose that any compromise to the integrity of a thing is likely enough to alter in some way the essential nature of what it is, how it works--a loose spark plug in a car engine, a lamp cord that has a short, a book from which a page is missing. It would be, of course, a matter of degree, and the deficit may fall anywhere between insignificant and catastrophic.

Consider, for instance, the case of a missing tile on the space shuttle. Consider a rocket engine part that malfunctions at 10,000 feet in the air.

Then again, consider the missing page. Lets say that it is missing from ones copy of War And Peace. Such a thing might be a frustrating discovery, and yet not something likely to cause a complete collapse, a critical error in the integrity of a 2000 page plot and theme.

Where has MS happened to strike? Where has the damage occurred? In a hunk of gray matter that wasn't doing much of anything anyway, or in that other hunk that just happens to move your legs, wiggle your fingers, maintain your left eye?

Is there a place in the brain that maintains and monitors personality, some sort of neuro-electrical gaggle and gear-work of tissue and nerve, synapse and conduction that conveys who we are, not only to ourselves, but to the world at large?

Is this where the soul is too? Shall we say that the soul is nothing more than a conspiracy of anatomical tissue and blood, molecules and neurons, the trickery of electronic activity? People mistake lights in the sky for UFOs all the time, and yet these are found, again and again, to be nothing other than weather balloons or flocks of birds.

In short then, is personality a matter of spirit, or of flesh?

(more to come in part III)

Pasteboard Masks, I

What is man that You are mindful of him
Psalms 8:4

I've been reading lately, in communities here as well as in other media (remember 'books'?) about the so called personality changes which may or may not take place in a person with multiple sclerosis. It is certainly a subject which, if nothing else, resists unambiguous conclusions.

I guess the most effective way to approach the question would be through the evaluation of another person, well known to the examiner on a long term basis, both before and after MS.

Unfortunately, no such person is available to me.

I turn therefore to myself--an interrogation more likely to cast shadows than light.

Walker Percy once wrote an essay about self knowledge in which he posited a scenario wherein a certain man is reading through his horoscope, and the more he reads, the more he thinks Yeah, that really is just like me. Of course, the punchline is that he ultimately discovers he is reading the wrong zodiac sign. He is reading Capricorn, not Leo. The man turns, therefore, to the proper sign and, well, how about that, this one is just like him as well!

So who are we to begin with? That's the first problem. What are we like, how can we accurately describe personality?

Percy went on to describe all the things an observer may be able to objectively state about the planet Jupiter by looking through a telescope, observing the atmosphere, counting moons, appreciating the chemical composition, the data of astronomy. And yet faced with himself, the man may as well be like Virgo or Taurus, Aquarius or Sagittarius. In short, he knows more of a certainty about a planet over 500 million miles from earth than he can confidently say about himself.

If MS has changed us, therefore, what exactly has it changed us from, and what to?

It occurs to me also that those of us who appear most stable on the outside may actually be the least stable on the inside. Jupiter, for instance, would appear to be a big, solid, mass in orbit, and yet we are really not seeing Jupiter at all, but merely its atmosphere. It is a sort of physical facade.

Hark ye yet again--the little lower layer. All visible objects, man, are but as pasteboard masks.

Or so said Captain Ahab in Melville's Moby Dick.

How many white whales out there? One alone, or one for each member of the crew, one for each episode in the voyage of life?

I am Hyde, and Jekyll too. But how do I parse out the interplay?

I guess my point is this (yes, I have to guess my own point!): It is difficult enough to lay a finger upon personality to begin with, much less say whether a medical condition can change it.

(more to come in part 2)

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.

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