Thursday, January 29, 2009
The reader may already be aware of my "bad box of Avonex" issue, the ensuing extremis of the flu-like symptoms I suffered from said bad box, and my growing feeling in the wake of all this that continuing to inject Avonex might be a downright stupid thing to do.
Two weeks without Avonex, and I have felt great. I haven't felt better in years. Two years and seven months, to be precise.
Until this morning.
This is the argument that my body makes, a rather pointed argument, an argument of stiff limbs and phantom pains. It is an argument forcefully made. Like a headlock. Like a fist in the face. My body does not pussy foot around. It goes straight for the solar plexus. Yes, my body has got me by the balls.
After slapping me around for awhile, all the way from the bedroom to the kitchen and back again, it pauses to state its point a bit more gently (i.e., I laid back down on the bed).
This, my friend, is why you are taking the Avonex. Remember? It could be worse, you know? Do you want me to make it worse?
Well, then again, maybe I just slept wrong, I say. It's just a matter of shaking the kinks out.
It could be.
Are you willing to take that chance? Could be, you say? What would you guess the percentage on that is? What are the odds on that horse, Dude? And what about that demyelination on your brain and spine. Just a once in a lifetime accident, you think?
Could be, yeah, I answer, unable to come up with a better response. After all, my legs are hurting, my hips are hurting, my neck is hurting, and I feel dizzy and disoriented.
Dude, you're pathetic, by body says.
Well, there's no need to get snippy.
Oh really! No need to get snippy? So here's what you're saying, right--you're saying that just because you're too much of a wimp to take a few flu-like symptoms, I'm left with running the risk of ending up crippled, rolling around in a wheelchair, depending on people to do every damn thing for me.
No, that's not what I'm saying.
Maybe it's not what you want to be saying, but it is what you're saying, it's exactly what you're saying.
But that's not what I want. All I want is for us to be in agreement on this thing.
SO SHUT THE HELL UP AND TAKE THE DAMN SHOT!
And so it goes.
Yesterday I received my two replacement doses of Avonex. Are they good ones? Are they bad ones? I don't know yet. I am supposed to take a shot this evening, yet I still just do not know. I guess I'll wobble around and think about it for awhile, stumble over to Starbucks for a coffee.
Did you hear something? A whisper just then . . .
**stumbling beats paralysis, Dude, seven days a week**
Wednesday, January 28, 2009
Most people will say 10 cents. This answer tends to look obvious at first glance, nonetheless it is incorrect.
This example is given in a book about the brain that I am reading. It is given as an illustration of how the brain thinks, which is really not at all like a computer nor a calculator. Rather, it appears that the brain will often run on intuition rather than logic, the reason for this being that the route to conclusions is shorter, faster on the intuitive highway than on the bumpier road of logic.
Now, on the other hand the damaged brain (i.e. the MS brain) falls into the habit of taking long-cuts. This is because multiple and various routes are blocked by scar tissue. The process runs up against a wall. It reroutes. This takes just long enough to create physical or mental deficits--spasticity, confusion, indecision, cognitive hiccoughs, feet that buzz, shoulders that twitch, hands that tremble.
Maybe you get lost in a parking lot while your brain is busy at sending thoughts through dizzying alternative channels, picking up the necessary information to arrive at a proper construct of sight and memory, motor response and accurate identification. Maybe you actually become dizzy in the process as well, adding a further impediment to the solution of your quandary.
Let us say that yesterday morning you fell down the stairs in your house. This is something that most all people will do at one time or another (unless they have no stairs in their houses), but with MS it is something you can count on happening if indeed you also happen to have a molecular beaver dam halfway down the stream between the lift foot instruction and the put foot down instruction.
We begin, therefore, after enough falls, after enough endless journeys around the parking lot, to commit ourselves to a deliberate sort of thought process. This is not to say that we succeed at all times (or even at most times), but it is a matter of practice, a matter of adjustment. In MS there is no straight route, and there is no intuitive route--there are only the routes that propose to navigate the damage that was done by the storm--whoops log-jam there, washed out bridge to the south, we will have to go north and then cut back again, down by the old river road--you know, the one that hasn't been used in ages. And so forth.
More and more I try to practice an artificial sort of deliberation as often as possible. This in turn often results in a physical slowness that mirrors the mental, a necessary trade-off. I stand by the door counting my way through a checklist--keys, cell phone, wallet, cigarettes, laptop, & etc. I stop before getting behind the steering wheel, collecting data on locale and recollection. I check notes that I keep in my back pocket, and whatever tasks I find that can be done on the instant, I do--for I will surely forget if I put them off for even five minutes.
Sometimes I feel like a game piece on a Monopoly board. I move according to the numbers, look at my cards, follow the directions, plan my strategy. But this is not a game, not a mere amusement--this is walking, thinking, talking, functioning, where poor planning sends you not straight to jail (do not pass Go), but flat on your face at the bottom of the stairway.
Tuesday, January 27, 2009
Strange world, this. Stranger yet the individual in it.
Have you ever smelled something, or caught a glance of something, or heard a sound, and found yourself instantly transported to the very core of another time and place? Suddenly you are five, or twenty-five; suddenly you are in a meadow by a river; suddenly you are sitting with your mother and the Cocker Spaniel on the back porch on a summer day regardless of these many years since they have died.
You smell something--something unnameable, and yet intact, complete--and you are suddenly beside your brother's hospital bed, holding his hand as his life slips away.
You hear a song, this voice, this pitch, and you relive how your heart sank so low, how your breath grew so short, how your soul reached then to the empty air where she had been. You can almost smell her skin again, you can almost touch her hair.
Strange world, strange world. Stranger yet the individual, this man, this woman, this perpetual child whispering well wishes in eternity to the unending cosmos.
Nothing whatsoever has been lost. Nothing ever comes to an end. People only imagine it so.
My wife and I had three things in common before we got married--before, in fact, we even knew each other. We went to the same nightclub, we attended the same church, and we frequented the same Starbucks. It might be inferred from the preceding that we also lived in the same neighborhood, so I will not count this as a fourth.
It so happens that our first actual meeting took place at the nightclub, but it could have taken place at any of the three locales, and so we tend to use all three in an interchangeable manner, each being equal to the other in potential, depending upon who is asking, why they want to know, our conceit at the moment, and other variables that may come into play.
My wife says that she came to the bar to order a drink. I was sitting on the other side of the bar with a pint of beer (being otherwise single and friendless). She says that when I looked up from my beer (which I tended to do every twenty minutes or so), my hand froze in midair, pint glass poised just in front of my lips, which had also frozen in a posture of readiness (to drink, that is).
I think this description is perfectly accurate. What I remember is looking up and immediately setting my eyes upon the most beautiful girl I had ever seen. So of course I froze. What man wouldn't? Our eyes met, and she smiled, and she raised her glass from across the bar. (As her story goes, I was still frozen solid during this period of time).
Well, she paid for her drink and disappeared into the crowd (and it was a crowd that night, of the shoulder-to-shoulder sort), and I sat there thinking (able to move, I believe, by that time), My God that was the most beautiful woman I have ever seen!).
Next thing I knew, someone was tapping my left shoulder. Somehow she had come all the way around the bar, squeezed on through behind me, and came to rest on my left. She wanted to know if I could give her a light. Now this is curious, because my wife does not smoke, and even if she had been smoking that night, she could no doubt have gotten a light from one of her friends at her own table.
I proceeded to fish through my pockets for the lighter that was sitting on the bar in front of me. She was still smiling, and I could clearly see, now that she was so close, that she was not as beautiful as I had thought, but more beautiful yet. Stunning, in a word (which was having, indeed, the same paralyzing effect on my mouth as before).
I finally managed to ask where she lived (having discovered, at last, the lighter which had been so completely hidden in plain sight).
At the Marriott, she said.
What, the Marriott Hotel? This seemed rather odd. What kind of girl was this? Perhaps I had not heard correctly. Maybe she had said Maryland, or St. Mary's Convent, or I'm married.
No. A second request for the same information elicited the same response.
The Marriott Hotel.
What sort of girl lives in a hotel? Well let's see, she is Asian, so perhaps she is just passing through, from Singapore to Brazil, for instance. Or how about this--maybe she works at the hotel. And lives there too. Or maybe . . . well, there were other possibilities that entered my mind.
But the long and short of it was that I was now frozen by this question of where she lived--my own fault for asking it, for it had been a stupid question to begin with. Before I knew it she was gone again. I looked around the room but could not find her. I looked around the room the rest of the night, but she had vanished.
I was later to learn that it was none of my business at the time where she might live. Thus her answer, The Marriott. Why would your first words to a woman you don't even know be "Where do you live," she asked. "Why would any woman answer that question coming from a complete stranger?"
This is where our three places in common ends up being fortuitous, affording, as they did, a three fold opportunity to redeem myself. Our meeting at the nightclub took place in the winter of 2007. We were married in May. A year later, almost to the day, I was diagnosed with multiple sclerosis, though that is a different story altogether.
We no longer have our three places in common, for we no longer go to the nightclub, we rarely go to church anymore, and only I have remained faithful to the neighborhood Starbucks. We have now, therefore, nothing whatsoever in common.
Isn't that what marriage is all about?
We do, however, have two dogs together, in joint ownership. These are our children.
And I can tell you this: I am not about to give them up without a fight.
Monday, January 26, 2009
My Kingdom is not of this world, Christ says. It is in heaven. Heaven, in fact, is not of this world, and yet it is in this world. It is as near as a breath is near to the lips (the Greek for heaven being often translated as breath).
But if I cast out demons with the finger of God, surely the kingdom of God has come upon you.
Since the representatives of religion had accused Jesus of casting out demons by the power of Satan, they made it implicit in their argument that they believed a supernatural power to be at work in Jesus. He had only to finish their own argument to arrive upon the truth--If Satan casts out himself, the how will his Kingdom stand? But if I by the finger of God . . . and so on.
How will the Kingdom of heaven come? So asked the ever obtuse disciples, always so perfectly characteristic of mankind. Will it come by war? Will it come by force of arms, by the crowning of a new King, by fire and destruction, by civil war or revolution?
Not by revolution, but by revelation--and revelation by crucifixion--the overthrowing of all things, a surrender to death itself so that new life may rise.
Unless a grain of wheat falls into the ground and dies, it remains alone; but if it dies, it produces much grain.
So it happens that in a world made of illusion and delusion, of pride and arrogance, of lies and conceits and fear, that our eyes are able to open and see very often only through pain and sorrow, through a series of mini crucifixions. We follow the Lord whether we like it or not. We follow whether we intend to or not. For this is life, pure and simple. One cannot live unless he dies, and truly we die daily, as the apostle Paul pointed out.
The core of life itself is composed of irony and paradox. Disease becomes a miraculous setback. In disease the weakness of the flesh is concluded, the pretense of power in the flesh is revealed. We fall back now upon what? Upon what is not flesh but spirit, what is not of this world, but of heaven. Disease becomes a key to health, a map which shows the short way to Canaan. We are not eternal, as we had thought, or had liked to imagine--and yet we see, though through a glass darkly, that something is, and always has been.
This is the blessing of infirmity, the glance afforded through the rent in the veil.
And we begin to hide our eyes no longer.
Saturday, January 24, 2009
It appears that the people went everywhere but the promised land during those forty years. They stopped for weeks of feasting on manna, and then on tiny birds. They stopped with parched throats, gasping for water in the middle of the desert (when there was likely a perfectly handy water faucet perhaps a mile further down the road). They stopped to see various marvels--a bitter stream made pure by a fallen tree, a vertical cloud by day, a fire by night, a bronze serpent on a pole which would heal those who gazed upon it, and the radiant face of Moses himself, just down from the mountain, the very sight of which was unbearable to the people. Behold, the skin of his face shone, and they were afraid to come near him.
Though God was with the people, it turned out that He made such a racket of thunder and lightening, fire and storm, and spoke, as it were, so loudly, that the people begged Moses to make Him go away, to meet with him thenceforth on one hilltop or another where there would not be such a confounded conflagration every time He and Moses spoke.
Well, the preachers are right. The destination of mankind has never been very far away, and the road has never been other than straight and narrow. It's just that we cannot see it, we cannot bear it. We must through the better part of our lives be wayward children. It is only as we near the end that our vision begins to clear, that the scales begin to fall away, and we find ourselves looking down from Golgotha, having entered at last into love.
Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ's sake. For when I am weak, then I am strong.
The treatment has been shown, in animals, to permanently repair scar tissue on the nerve and restore lost function.
Naturally MS comes to mind, since fried nerve tissue is our issue too, but of course repairing the damage already done would not preclude subsequent attacks and new damage.
So I guess maybe this in combination with a way to stop the occurrence of new attacks would be the key.
It is, nonetheless, encouraging news. I do believe that by the time most of us are dead, MS will be a thing of the past. (Actually, given the logic of this last sentence, I can say it will be so with perfect accuracy).
Today is my birthday. For those of you who feel like celebrating, go out and have a whiskey or two on me. Send the bill to the National MS Society.
I am 55 years old. I love almost everything about being 55. I could do without the MS and the MS treatments, and the cognitive deficits, and the MRIs, and the excessive financial stress, and the overwhelming fatigue, and the spastic muscles, and such-like--but otherwise, everything is Jim Dandy.
Thursday, January 22, 2009
I do believe the thing that distinguishes me above the common man, above the lion's share of human beings, is my poor dentition; for it is practically incomparable, purely set apart, a sort of avant garde art work of weird spaces and angles. Each tooth is one of a kind. So, altogether, that equals about 5 of a kind.
I count myself on an equal footing with Lydwina of Scheiden, the 15th century nun who apparently still holds the record for the worst teeth ever, and who also, supposedly, had the first documented case of multiple sclerosis.
Nonetheless, I have a few years ahead of me, so we shall see whose teeth are worse.
Aside from being weird and dysfunctional, my teeth are also resistant to dentists. By this I mean that you cannot expect to fool with one without having something go terribly wrong. It's a domino effect. The greater the effort at repair, the greater the disrepair that results.
Last month I had a tooth pulled (well, part of a tooth--that's all there was). This naturally resulted in dry socket, days of exquisite pain, and a course of antibiotics.
Three days ago I had a root canal. This can be painful, surely, but it is something most people will get through without too much trouble. Yet I find myself once again distinguished by my teeth (or in this case a single tooth). Standing against the best efforts of modern dentistry, this lone tooth, having been rendered dead by the eradication of its roots, nonetheless has managed to strike back in the form of a gross and painful swelling of the entire left side of my face, such that I can actually see my face now without a mirror!
On comes the penicillin--an antibiotic which, as I am just now discovering, makes me feel rather nauseous. An antibiotic which also, apparently, has no effect on my facial swelling.
And here I keep swatting at something in front of my eye, forgetting that it is my own face.
MS and bad teeth. Which is worse? It's a toss up. I wonder if my teeth would be healthy if not for MS. I wonder, in fact, whether I would have MS if not for my teeth.
But this is a question for greater minds than mine.
Life is full of ironies. Little ironies and big ironies. Ironies of varying size and character; gentle ironies, harsh ironies, humorous ironies, heartbreaking ironies.
I realize this may sound like an attempt to describe various dog breeds. You have your Terrier, your Sheepdog, your Shar-pei, and your Ironie.
But bear with me a moment.
The other day I was invited to write for an online community network devoted to good health and healthy living. It seems that the director, a doctor, had seen my blog on MS and etcetera, and liked it.
Now here is where the irony comes in. The fact is that even though I have the credentials for being genuinely ill, thanks to MS, I am, as far as healthy living goes, rather more of an advertisement for what not to do.
The truth is that even as I write, I am as likely as not to have a cigarette tucked between my lips, obscured from the world by a wispy halo of tar and nicotine, and all those other strange additives we've heard about (and maybe some we have not).
Chances are that I have just finished a wholesome breakfast of frosted strawberry Pop Tarts and coffee, and will later, for lunch, enjoy a large bowl of Butter Finger ice cream. With chocolate syrup.
But it was not always so. Time was, back when I was healthy (ironically), that I ate mostly healthy foods. I did not even like ice cream. Never did my shadow darken the door of McDonald's or Burger King. I liked rice, and potatoes, and pork chops, and broccoli. For a snack I would eat tortilla chips rather than caramel corn.
This present diet of mine, as far as I am concerned, is a direct result of multiple sclerosis. How else could it be that I have suddenly, in the last 2 years, no taste for nutritious foods? The idea of a normal meal may occasionally sound good, and certainly I know it is proper; yet when I sit down to the table, I find that I have no appetite at all.
This is something the dogs are happy about, for they are at least one step above the garbage disposal as far as the leftover contents on my plates go. Someone always benefits from another man's trouble. It's a cosmic law.
I consider my having ended up with multiple sclerosis to be an irony in itself. It is an irony in the same way as when a concert pianist, for instance, loses nine of his fingers, or when a race car driver loses an arm, or when a seeing eye dog loses his sight.
I have always wanted to write. I have always wanted to put down my feelings and thoughts in a cogent, artful way, with competence, with a consistent sort of grasp--and now here I am with a cognitive disorder, struggling to maintain my grip on the basic mechanics of language. Here I am looking up words like want and boat and jump in the thesaurus!
This is one of the funny sorts of ironies. Funny like a Chinese Crested dog--you know, the kind without hair, except for a shock on the head and tail--the kind that always wins the ugly dog competitions?
So maybe I can't talk much about good health. But I sure as hell know about irony, and irony itself is surely one of the first children of multiple sclerosis.
Wednesday, January 21, 2009
I am a fairly trusting sort of person, not a fault finder, not inclined to be suspicious of the system. I take the Platonic view that the work of one person is ultimately for the good of another.
And yet, try as I might, I cannot get past the feeling that there is something wrong in the notion that one could get “a bad box” of Avonex. This was the explanation for my recent illness as conveyed over the phone by a healthcare worker at the MS Center here in my town.
Now I’ve heard of a bad crate of tuna, a tainted can of peaches, an out of age pack of double A batteries—but a bad batch of interferon?
A bad box? I mean, isn’t this a pretty serious sort of thing, a pretty potent sort of thing even in a good box? What might a bad box mean down the road? How bad might a bad box be? Maybe a really bad box will take the unlucky user beyond the flu like symptoms. How about a seizure? How about organ damage? How about foaming at the mouth and then going brain dead?
Sometimes a box gets mishandled the woman said. Sometimes you get one that is old, or just hasn’t been prepared properly.
Really? Can it be? Sometimes dynamite gets mishandled too. You get a bad stick of dynamite. It goes off prematurely and your arm goes with it.
It happens. Is that what she’s saying? It happens?
What is the solution? I am to return the bad box and get a new one.
Sort of like a returning a jar of peanuts to the Fred Meyer store after discovering it had already been opened. Yeah, like that. Like a jar of peanuts.
Can you imagine how freaked out I am now about receiving my next bad box of Avonex?
I remember how my brother’s oncologist, some twenty-five years ago, pronounced him cured of his cancer. And then two weeks later he died.
Perhaps he got a bad IV bag of chemo.
I don’t know, folks. From the very beginning I have gone back and forth on the MS drug question. To shoot up or not to shoot up? What are the proper weights and measures? What is the true ratio between disease suppression and quality of life?
I am struggling yet, adding up the columns—but let me tell you, a big minus just went to the interferon side.
Tuesday, January 20, 2009
I look back and realize that my life has been a serious of false starts. I find that I often ran blindly, or ran without confidence, or ran without poise. There were times when the finish line was not worth the race, and there were times when my effort was not equal to the goal.
And so I begin again--though this time, this last time, the course to be run has changed. It is shorter, it it straighter, and its limits are not only of length, but of time.
It is a race against time. But time to do what?
Something, anything, everything.
There are a million things to do, a million people to meet, a million places to see, a million ends to be tied and a million knots to be freed. I have wasted far too much time, not knowing how short time would turn out to be.
And yet I could not until now have run with the same assurance, an assurance of good measure, pressed down, shaken together, and running over. To take, at this point, the merest thing for granted would seem a luxury open only to the young and the well.
One thing more about the course shall I mention. There is not now a single competitor to be seen. No, not one; though there be countless companions by my side.
Monday, January 19, 2009
Or let's put it this way--If a person has it in mind to redeem himself in her esteem, he will find it an uphill struggle. Straight uphill. I mean the kind of hill that requires climbing gear.
I remember asking her, during one lively discussion of personal philosophies, whether she had ever heard of grace. She answered in such a way as to leave no doubt as to where I might store that notion.
Grace for her, as for many people indeed, is something that is earned, not simply given without justifiable cause.
It's funny. Though Sant Louis is a better Christian than I, more outgoing, more involved, kinder, friendlier, cleaner, she knows at the same time almost nothing of the doctrinal basics.
For by grace you have been saved through faith, and that not of yourselves; it is the gift of God. (Eph 2:8)
Why then God is surely a fool, she might say, but that doesn't mean you have to be one too.
But I am. I am.
If anyone among you seems to be wise in this age, let him become a fool that he may become wise (1 Cor 3:18).
Well, I poke fun at my wife, and I exaggerate (somewhat); and yet honestly I begin to wonder, after having been a fool for so long, having personally explored so many aspects of foolishness, of both the world and of God, whether maybe she is right after all. Maybe people are much simpler than I make them out to be.
You see, I have tended to see people more in the light of potential than in the light of day. I have believed that there is a pristine goodness into which they may by and by proceed, given patience, faith, encouragement, grace.
I have not yet seen this happen. Why, therefore, do I persist in what may be no more than delusion?
Now faith is the substance of things hoped for, the evidence of things not seen.
That's why. It is poetry, it is hope, it is assurance, it is ideal--it is the very sustenance of fools like me.
Saturday, January 17, 2009
OMG, I was so sick on the Avonex last night. Just like the first injection, 1-1/2 years ago. This has happened for the past three weeks now. Sick after I take the shot, feel like road kill all the next day. Why I am suddenly reacting so severely to the Avonex? Who knows?
In any case, I put in a call to my neurologist this morning. Unfortunately he will not be back in the office until Monday. As it stands right now, though, I am thinking that I am not going to take another shot. Maybe change to Copaxone. Or nothing. This is like two damn days out of every week, and in my mind it is adding up to an unacceptable compromise in quality of life.
My wife asked me (again) if I was going to die. Well, not from MS, but maybe from the Goddamn Avonex, yeah.
Let me tell you, I was shaking so bad that it was getting to be more like a seizure than a flu-like symptom. I tried to light up a cigarette, but my arm was so wild that I was just as likely to stick the thing in my eye as between my lips.
Teeth chattering, shaking almost uncontrollably, I climbed into the bathtub. A good hot bath always calms down the shakes. But guess what? The hot water runs out.
So I am sitting there in about 2 inches of water, still shaking. My head feels like it's going to explode. My neck feels practically paralyzed. I crawl over the edge of the tub like some sort of worm, dry myself off (what little water I got on me anyway), and head for the bedroom.
This is when Coco, the Chihuahua, comes to the rescue. He's a little dog, but he is incredibly warm. Coco gets under the covers with me and snuggles himself into my chest. Then Smokey, the Labrador, comes in. He lies down on the other side.
Thank God for dogs.
Today I just feel kind of wasted and worn down, still a bit feverish, with a bit of a headache. The thing is, I'm going to have to work until 11 tonight, and I know I'm going to be tired as hell. Time to take a Provigil or two.
Thursday, January 15, 2009
Because of MS, my brain seems to work right along these same lines, so I suppose this revolution is a good thing for me. Still, I do not remember very much of what I read, or even of what I write myself, so the whole pursuit of knowledge thing, regardless of venue, appears to be a fairly pointless exercise anyway.
New information is a particular problem. I can remember very well things from five and ten and twenty years ago, but would be hard pressed to tell you what I did yesterday, or what I wrote in the first sentence of this post.
It is for this reason that I am hanging on to my job by my fingernails. Whatever lies outside the realm of the purely automatic becomes more and more challenging, more and more worrisome. I try to find artificial ways of storing this sort of information--yellow post-its, a notebook, a phone message to myself--but they just don't cut it the way the functioning brain cuts it. I find myself prevaricating, feigning ignorance, displacing blame.
Ten years to go. Can I make it? It seems rather doubtful sometimes.
This morning a beggar came up to my car window while I was stopped at a traffic light. He wondered if I could spare a cigarette (which of course I could). He said that he had left his cigarettes back at camp, with a couple other bums. Never leave your cigarettes with bums, he said.
Words of wisdom, those. But my God, it is freezing outside. There is ice on the grass and on the sidewalk. Here is a hardy man indeed, and I can't help admiring him for it. Nonetheless, I really do not care to join him. Nothing personal. I'd just rather be safe and warm.
Wednesday, January 14, 2009
Three times have I tried to think, three times failed. This morning the MS in my brain will not have it. Three sentences have I begun, three have collapsed. My mind itself is pressed to a corner by the void, the paralysis of disease.
Concerning this thing I pleaded with the Lord three times that it might depart from me. And He said to me, "My grace is sufficient for you, for My strength is made perfect in weakness."
That's it! Paul's mysterious affliction was MS.
Good thing there is so much weakness in the world, and particularly in me, in order that the Lord might be strengthened.
It seems this morning that I can actually feel the scars on my brain. I sense them, I know them. They are evident according to what they will not allow, just as the wind is evident only in those things which are actuated--the swaying of tree limbs, the paths in the tall grass.
This comes without warning, without reason, other than itself--not reason, but condition. What functioned yesterday functions not today. Two parts of me have been chosen: My brain and my right knee. Both are frozen.
Two parts chosen,
two parts frozen,
and tomorrow a dice game,
snake eyes or boxcars,
grace is Lucifer's word for disease
I keep fighting, even though the battle is lost. This is the Alamo. This is Custer's last stand.
History has given Custer short shrift. Honestly. Some say that he was careless, over confident. But in the cavalry of his time those same words might have been courage and daring. In the Civil War, before Little Big Horn, Custer was known as one of the rare hard fighters among the otherwise timid Federal cavalry commanders. At Gettysburg his brigade frustrated the efforts of Jeb Stuart's famous horsemen to turn the army's right flank.
This is the conclusion of scars. These are what the plaques have to say. My Little Big Horn waits. I am on my way.
Tuesday, January 13, 2009
Now, I have thought about either a tattoo on the forehead or a card that one would carry in his wallet or her purse. The strength of the first notion is that the identity could not be lost (without the loss of ones head as well), but of course not everyone desires a tattoo, and moreover having one on the forehead might put the bearer at risk of accidentally taking the mark of the beast. You never know.
So, all considered, a card seems preferable.
Instead of merely looking like an idiot, one could pull out his card and prove that he is one. End of story. Instead of avoiding the disabled seats on the train because you don't look crippled enough, you could sit your ass down with complete confidence, card at ready for anyone who looks at you sideways.
As a matter of fact, such a card of authentication would come in handy often enough in my daily family life. Instead of trying to explain the same thing again and again (and remember, I am already profoundly fatigued to begin with), I could just flash the card in front of my wife's face and maybe raise my eyebrows a couple times.
I have however in this case some uncertainty about the safety of the card.
Perhaps the whole idea warrants more careful thought. I'll work on it when I have the energy.
Has anyone of you ever suffered such an insult? I wonder what could be more dismissive, more hateful, more calculatedly cruel? Someone once said this to me. Someone I loved. I have never forgotten it (as you can see).
How horribly we people treat one another sometimes. It makes you wonder if we were not really God's single mistake, as Mark Twain suspected. The only thing wrong with humanity is the human being.
See how great a forest a little fire kindles! 6 And the tongue is a fire, a world of iniquity. The tongue is so set among our members that it defiles the whole body, and sets on fire the course of nature; and it is set on fire by hell. 7 For every kind of beast and bird, of reptile and creature of the sea, is tamed and has been tamed by mankind. 8 But no man can tame the tongue. It is an unruly evil, full of deadly poison. 9 With it we bless our God and Father, and with it we curse men, who have been made in the similitude of God. 10 Out of the same mouth proceed blessing and cursing. My brethren, these things ought not to be so.
Yet so they are.
We are inclined, in the corruption of our nature, to be careless and not careful, hard and not tender, judgmental and not tolerant.
"Hear and understand: Not what goes into the mouth defiles a man; but what comes out of the mouth, this defiles a man."
So said Jesus. And yet we have still not heard.
Monday, January 12, 2009
for all my dreams to come true,
and a part of me that hopes
I'll wake up over you . . .
--From a country song
And so it goes. It would seem that we are all houses divided. What are we really sure of in the long run? What about my life, my decisions, my choices makes consistent sense? What warrants the confidence of absolute approval? It seems that I know for a certainty only of those things that do not. Why? Why the certainty of what is wrong above the conviction of what is, or might have been, right?
In the Jewish wisdom tradition, Kabbalah, there is the idea that the creation, as a result of the act of creation itself, exploded and fell through the cosmos as countless sparks of light, and it is these sparks that we are to retrieve in our lifetimes by descending, rescuing, redeeming. When all the sparks are accounted for, heaven will appear (or resume).
I must admit to being sketchy on the details. But then so is the Kabbalah. When we set our minds upon the unknowable G-d, we must do so knowing that He will not be revealed.
For what then do we search? Sparks in the cosmos. We search for what we are, for essence at the most elemental level. We peer into our own stories for clues to the identity of who has been living our lives. What did he mean? What did he want? What right had this intruder to snatch the breath from our lips, perfect as it had been without him?
We are made at least equally of error and and competence, along with a yeast of happenstance. What chance, therefore, of success did we ever have?
Or has that ever been the real point?
These sparks, you see, are not as easy to grasp as agates on the beach or apples from a branch. Rather they flicker and hide, and dart away like swift finned fishes.
Catch a falling star
and put it in your pocket,
save it for a rainy day . . .
Imagine the reward, if you can, of holding securely even one.
Saturday, January 10, 2009
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
Thursday, January 8, 2009
Oh well, I guess that's what they made guns for. Run all ya want, sucka! Yer not gonna outrun my .45!
But as the apostle Paul once observed, if one is obedient to the powers that be, one has nothing to fear from them.
It seems like Paul had something to say for every occasion. He is always slipping into my posts somehow. Stealthy little bugger. I wish I had half his charisma.
On the other hand, even if I had the charisma, it would soon fall through the holes in my brain, or become otherwise crippled by MS, so I suppose I had best leave the charisma to people who can make good use of it.
Has anyone guessed yet that I have nothing whatsoever to say this morning?
Oh well ... I believe I'll just go home, take a few pills, and polish my cane or something.
(Oh, Mamdouh is back. Sort of. He says he does not want to move away after all. He says he wants to stay with his family, i.e., us. That, I think, was on the 2nd of January. We have not seen him since. The mystery continues).
Wednesday, January 7, 2009
There is this notion that somehow we are going to recover, as though we had been suffering from a head cold or a sprained ankle and will gradually heal. Hey, you're looking good, they will say. Hey, no cane today! Good work! (again, as if I had been rehabilitating an injured leg through exercise and clean living).
People don't like the notion of not getting better. This is not amenable to the sorts of chipper salutations they hope will pass for real conversation. People don't like conditions that have no resolution. The reason I know this is that I am also a person.
The onus therefore to supply satisfaction is placed upon the sufferer. He may provide comfort--Yes, I do believe that I am feeling better--or he may tell the truth--No, you idiot, people with MS DO NOT GET BETTER!
Ultimately, as so often happens, it comes down to how we deal with MS ourselves, and by extension how we deal with life, misfortune, other people, our problems, their problems. We weigh the individual case, we measure our current supply of energy against that to which it is to be applied.
Hey, you look like you're feeling better today . . .
Well . . . yes and no.
Tuesday, January 6, 2009
So let's say that my neighbor does not like me for some reason. Perhaps he feels I have done him wrong, or perhaps he just doesn't like the way I look. Maybe I'm the wrong color for him, or the wrong religion. Or maybe my dog barks too much.
So what does he do? He begins to throw rocks through the windows in my house. At first I think maybe it's a mistake, but then it happens again, and then again, so that I find that on a daily basis rocks are pounding the sides of my house and shattering my windows.
I have talked to him, I have screamed at him, I have even called the police and had them pay him a visit. Yet all to no avail. The rocks continue bombard my house.
What am I to do? I have much invested in this house as its owner, I am having to repair the window glass over and over, and I worry about the safety of my family.
What shall I do? I cannot move. Everything I have is invested in this house. Reasoning has proven fruitless. I cannot even afford to fix many more windows, and I certainly cannot keep running the risk that my loved ones might be injured.
What shall I do.
The answer seems both obvious and unavoidable. Doesn't it?
Case in point: Having stopped at Starbucks this morning, as is my usual habit, gotten my coffee, and started up my laptop, I found upon sitting before the screen that neither I nor it were receiving nor loading any information whatsoever. In short, we were not functioning as designed to do.
So it happened that what is corporeal, my brain, experienced a certain fellowship with what is inanimate, the computer, in as far as we were equally unable to function. Moreover, we were unable to do so for what is essentially the same reason--to whit, the circuitry and mechanics of ability had been infiltrated and compromised by other obstinate processes, turning the whole system on its head, adding a prefix, and resulting in disability.
Since function precedes dysfunction (rather in the way that love precedes marriage), we (the computer and I) cannot be said to be suffering a foreign invasion, for the dysfunction is in need of the function to begin with--a conundrum which was put best by the military officer who said "I have seen the enemy, and he is us."
To be so concluded, however, lends hardly much in the way of consolation. I guess the difference is that the computer doesn't care, while my own caring is moot.
Sunday, January 4, 2009
Saturday, January 3, 2009
But we will miss Mamdouh. Actually, we missed him even while he was living with us.
Not to worry, though. Another exchange student from Libya is on his way. It is said that this one knows more of English, and desires interaction and cultural exchange. We shall see.
Avonex once again kicked my ass last night. Strange. I had gotten to a point where it was often hardly noticeable, and now suddenly I'm back to the flu like symptoms again. This being the first of the year, I must see again whether I can get financial aid in order to afford another year of misery. Oddly enough, I'm not real excited about it.
Thursday, January 1, 2009
The best thing for me, given the number of MS holes in my brain, would be to somehow plan on making mistakes in whatever I do before they are actually made. I don’t know if this is actually possible. It would take a level of concentration and vigilance not easily attained because of those same brain holes, not to mention a certain sort of surrender to disability.
Nonetheless, if I cannot soon find a way to negotiate my own stupidity, it’s going to end up causing some kind of serious trouble eventually.
It’s just little things. Like misplacing the movies I had rented this morning. It was clear they had not gotten home with me, but that was all that was clear. Their whereabouts were otherwise a perfect mystery.
The first necessity in trying to unravel the mystery of the missing videos was to determine in my mind just exactly where I had been in the last couple hours. This is not an easy task when the better part of recollection has disappeared in black holes. I sat at the dining room table and went over and over the question of my own activities. I employed the aid of certain clues, such as the papers and sales receipts in my pockets. I asked my son if I had mentioned anything regarding my plans.
It appeared, after investigation, that I had gone to the movie store (well, of course I had—I must have, right?), I had gone to Starbucks (fresh foam in the bottom of the cup on the kitchen counter), I had gone to the bank—actually two banks (the papers in my pocket), and I had gone to the pharmacy.
But in what order. At what point in this unknown chronology had I rented to movies, at what point had I ended up without them?
The only thing to do was to embark upon further investigation—to visit the actual scenes in question, to follow my own tracks, no matter how hard my brain was trying to cover them. In short, I would put a tail on myself.
Was it Colonel Mustard in the study, or Mrs. Peacock in the ballroom?
Well, I found the movies—or rather, a bank teller found them and returned them to the video store. But they might just as easily have been picked up by a stranger and kept, without charge. Free movies for him, as I would have been paying to own what I was unable to find.
You see what I mean?
At that bank earlier that morning (where the movies had ultimately been found), I had made a fairly simple transaction—simple, that is, for anyone with a functioning brain. I was to withdraw $670 from my son’s custodial account, put $300 for his rent in my checking account, and take the rest in cash to deliver to him. I have done it hundreds of times.
And yet, when the teller asked me how I would like the money, and found myself completely paralyzed by what she could mean by this.
How do I want it? Well, I guess you can just hand it across the counter?
No, in what denominations. She wanted to know if I wanted it in 20s, or 100s, or some combination of the two.
I guess unless you’ve been there, it is simply impossible to convey the nature of the inescapable rut ones mind can fall into. Or maybe it’s like getting your car stuck in a snow bank. . You can’t go forward, you can’t go backward. You just spin your wheels.
How do I want it? How do I want it? My goodness, what an interesting question. Hmm, let me think here. . . . Oh, I know—why don’t you just decide for me!
So here is a New Years resolution. I will from here forward plan on not knowing what I’m doing, and shall refuse to be fooled by old notions of being a normal person. I resolve to keep a close eye on myself.