One of the most unpleasant of the myriad unpleasantries associated with multiple sclerosis, for me anyway, is what I will call the brain buzz, if only for the sake of alliteration, and at the expense moreover of descriptive accuracy--for you see the phenomenon experienced is really more of a hiss than a buzz, though yet again not so much of a hiss as a hiccough tucked somewhere within the electrical pulsations at work within the gray blob otherwise known as my brain (itself more blob-like I think than most).
This, happily enough, is not a common nor an ongoing symptom, but one which arises at its own pleasure, whenever it will; and is, I believe, something that accompanies an active state of MS--a warning whisper, a rumor of war. It has become according to past experience my own diagnostic tool for identifying a relapse, just as reliable as the MRI, though much cheaper.
This buzz/hiss/pulse--this heavy breathing in my brain--comes along also with a sense of light-headedness and disorientation above the norm, and also vague nausea. Whenever this hits, I wonder first off what I can do about it, then remember that there is nothing to be done but to wait. It does finally go away on its own. So far, anyway.
I wonder if anyone else has this. It does seem that MS makes its attempt in each person to present an original character--so as to make each of us feel special, I think; and also to confuse doctors and frustrate timely diagnosis--and yet there are some common threads to be agreed upon--numbness and tingling in the extremities, for instance; fatigue; imbalance.
But how about the brain buzz in particular? Anyone out there feel me?
Visits
Tuesday, November 24, 2009
Sunday, November 22, 2009
Many Mansions
Day by day Saaid is prepared to move out. The latest news is always that tomorrow he will be leaving--but tomorrow, in this narrowly defined, special sort of case, never arrives. It simply persists in being on its way.
At first Saiid was afraid of the dogs. Or anyway this was the official story. However, as the dogs fell into the habit of ignoring him, it became convenient to transition to another reason for discontent. His room, now, was too small, providing not enough room to pray.
So what's he saying? That God, the all powerful Creator and sustainer of the universe, He who knows no bounds nor limits, yet cannot find a way to fit into Saaid's bedroom?
But my wife shuts me up. She shooshes me. Through negotiation, and in the interest of reasonable accommodation, for both Allah and Saaid, it is decided that we should dismantle the desk and remove it from the bedroom. There is nothing in these arrangements, moreover, that presumes nor suggests in any way any need for Saaid to lift a finger.
But hold on . . . I thought he was moving tomorrow. Didn't he say he was moving tomorrow? And if he is moving tomorrow, why are we bothering with this desk tonight?
But of course the point is moot. The desk is dismantled, the desk is moved. Now there is a little more room for God in the corner, just as long as He doesn't gain weight or shift around too much.
Now it is only fair to say, in Saaid's defense, that at home he has 17 brothers (and I don't know how many sisters--they don't count 'em), and a house with 17 bedrooms, each bedroom being, as I assume anyway, large enough to accommodate both its human occupant and God Almighty, no doubt with room to spare. We are therefore humbled in the face of such circumstances, this kingdom with many mansions indeed.
How's that, we ask, better?
We are told that it is in fact No problem.
The next morning--the morning after the dismantling and removing of the desk--Saaid tells Hassan (our other student) that he feels he needs a change of scenery. He feels bored and depressed. For this reason he will book a room at the Marriott for the weekend. He wishes to be with his friends. He wishes to meet some girls. He wishes to go to some night clubs.
Although Hassan explains to Saaid that since he is only 18, he will not be allowed to visit the night clubs, Saaid is unconvinced. This is, as he says, no problem.
This soon becomes Hassan's favorite expression. No problem. No problem. He teaches us to utter the words with an Arabian accent.
And so it goes. Saaid has retained his suite at the Marriott for the weekend. He may return, he may not return. For all we know, the Marriott may also prove disappointing, who knows.
In any case, as far as we are concerned, it is No problem.
At first Saiid was afraid of the dogs. Or anyway this was the official story. However, as the dogs fell into the habit of ignoring him, it became convenient to transition to another reason for discontent. His room, now, was too small, providing not enough room to pray.
So what's he saying? That God, the all powerful Creator and sustainer of the universe, He who knows no bounds nor limits, yet cannot find a way to fit into Saaid's bedroom?
But my wife shuts me up. She shooshes me. Through negotiation, and in the interest of reasonable accommodation, for both Allah and Saaid, it is decided that we should dismantle the desk and remove it from the bedroom. There is nothing in these arrangements, moreover, that presumes nor suggests in any way any need for Saaid to lift a finger.
But hold on . . . I thought he was moving tomorrow. Didn't he say he was moving tomorrow? And if he is moving tomorrow, why are we bothering with this desk tonight?
But of course the point is moot. The desk is dismantled, the desk is moved. Now there is a little more room for God in the corner, just as long as He doesn't gain weight or shift around too much.
Now it is only fair to say, in Saaid's defense, that at home he has 17 brothers (and I don't know how many sisters--they don't count 'em), and a house with 17 bedrooms, each bedroom being, as I assume anyway, large enough to accommodate both its human occupant and God Almighty, no doubt with room to spare. We are therefore humbled in the face of such circumstances, this kingdom with many mansions indeed.
How's that, we ask, better?
We are told that it is in fact No problem.
The next morning--the morning after the dismantling and removing of the desk--Saaid tells Hassan (our other student) that he feels he needs a change of scenery. He feels bored and depressed. For this reason he will book a room at the Marriott for the weekend. He wishes to be with his friends. He wishes to meet some girls. He wishes to go to some night clubs.
Although Hassan explains to Saaid that since he is only 18, he will not be allowed to visit the night clubs, Saaid is unconvinced. This is, as he says, no problem.
This soon becomes Hassan's favorite expression. No problem. No problem. He teaches us to utter the words with an Arabian accent.
And so it goes. Saaid has retained his suite at the Marriott for the weekend. He may return, he may not return. For all we know, the Marriott may also prove disappointing, who knows.
In any case, as far as we are concerned, it is No problem.
Sunday, November 15, 2009
New Student
Today we have a new exchange student, Saaid from United Arab Emirates. Saaid, as becomes instantly obvious, is terrified of dogs. I wonder if the agency told him we have two? Hassan is trying to reassure him, but so far to no avail.
Hassan is the only Arab we have hosted thus far (among four now) who is not afraid of dogs. In fact, he seems to like them. He seems even to like Coco, the Chihuahua, who makes himself generally pretty unlikable to all races, sexes, and cultures. But Hassan is different. He is, as he says, an "American Saudi." Which is getting to be about the same thing as a breath of fresh air.
Roy, the Japanese student, having eaten all the available food stores in the house, left some weeks ago for bigger, better refrigerators. And Abdul went back to Saudi Arabia.
Mamdouh, as elusive as ever, may or may not still be in the US. May or may not still be maintaining his vampiric hours and habits. We simply don't know. And although he does continue to receive mail at our house in the form of overdraft statements from the bank. These continue, as ever, to be of no concern to him.
Next time around I wouldn't mind having a student from southern Alabama or Mississippi--still foreign countries, but English speaking to some extent and sharing a culture with our own--including a love of football and of pork in any form.
I also wouldn't mind a female for a change, for members of that particular sex tend by and large to be familiar with such habits as the washing of dishes, clearing off the table, cleaning of bathroom counters, and such like.
They are also inclined to like dogs, thanks to an innate maternal proclivity.
Also they are easier on the eye. By and large, I mean.
Hassan is the only Arab we have hosted thus far (among four now) who is not afraid of dogs. In fact, he seems to like them. He seems even to like Coco, the Chihuahua, who makes himself generally pretty unlikable to all races, sexes, and cultures. But Hassan is different. He is, as he says, an "American Saudi." Which is getting to be about the same thing as a breath of fresh air.
Roy, the Japanese student, having eaten all the available food stores in the house, left some weeks ago for bigger, better refrigerators. And Abdul went back to Saudi Arabia.
Mamdouh, as elusive as ever, may or may not still be in the US. May or may not still be maintaining his vampiric hours and habits. We simply don't know. And although he does continue to receive mail at our house in the form of overdraft statements from the bank. These continue, as ever, to be of no concern to him.
Next time around I wouldn't mind having a student from southern Alabama or Mississippi--still foreign countries, but English speaking to some extent and sharing a culture with our own--including a love of football and of pork in any form.
I also wouldn't mind a female for a change, for members of that particular sex tend by and large to be familiar with such habits as the washing of dishes, clearing off the table, cleaning of bathroom counters, and such like.
They are also inclined to like dogs, thanks to an innate maternal proclivity.
Also they are easier on the eye. By and large, I mean.
Friday, November 13, 2009
My Newly Discovered Potentially Healthy Diet
Another thing I decided after my MS diagnosis was that I should pay more attention to my diet. I should become conscious of what I eat. This is not to say that I have changed the diet itself, but only that I take more definite note of the things that go into my mouth and down my gullet. It has actually heightened the pleasure to be had in partaking.
We should all be more conscious of the simple things. After all, you don't eat when you're in the grave, but rather are eaten--which are two totally different things. In addition, one does not have the opportunity to be conscious of the latter (or hopefully so, anyway).
Whereas a hunk of ice cream covered with chocolate syrup seemed once nothing more than an indistinct blob, a matter of little purport on its own, the same has now become a miniature universe of untold wonders, such that I spend more time admiring the thing on its way to my mouth than I do with actually clamping down my jaws and imbibing. For this reason, I have begun to lose weight--what with the time spent on scrutinizing rather than swallowing--but that is all in all a good thing, as I could stand to lose a few 10 or 15 pounds.
When was the last time you truly watched as a butter horn, skewered just so upon your fork, arose from its plate to make its journey to your tongue--this elegant dance of cause and effect, intention and target, beginning and end (for the butter horn, that is).
Have you ever just stopped to purely observe what a pork chop will do when left to its own devices?
Food for its own sake--the very foundation of diet. To begin at the beginning is my maxim nowadays. Be the buttermilk cruller, be the buffalo wing. All the rest (by which I mean the dietary particulars as they pertain to good health) will fall into place by and by.
We should all be more conscious of the simple things. After all, you don't eat when you're in the grave, but rather are eaten--which are two totally different things. In addition, one does not have the opportunity to be conscious of the latter (or hopefully so, anyway).
Whereas a hunk of ice cream covered with chocolate syrup seemed once nothing more than an indistinct blob, a matter of little purport on its own, the same has now become a miniature universe of untold wonders, such that I spend more time admiring the thing on its way to my mouth than I do with actually clamping down my jaws and imbibing. For this reason, I have begun to lose weight--what with the time spent on scrutinizing rather than swallowing--but that is all in all a good thing, as I could stand to lose a few 10 or 15 pounds.
When was the last time you truly watched as a butter horn, skewered just so upon your fork, arose from its plate to make its journey to your tongue--this elegant dance of cause and effect, intention and target, beginning and end (for the butter horn, that is).
Have you ever just stopped to purely observe what a pork chop will do when left to its own devices?
Food for its own sake--the very foundation of diet. To begin at the beginning is my maxim nowadays. Be the buttermilk cruller, be the buffalo wing. All the rest (by which I mean the dietary particulars as they pertain to good health) will fall into place by and by.
Thursday, November 12, 2009
My Newly Discovered Active Lifestyle
The first thing I decided to do after being diagnosed with multiple sclerosis was to climb a mountain. Why? I don't know. I guess because it was there, and it just seemed like the natural response to being essentially crippled.
Curiously, as I flipped through the pages of various MS magazines, I found that almost everyone else having MS had already decided to do the same thing, and moreover had for the most part already done it. (I know this because there were pictures).
I determined therefore to not only climb a mountain, but to do so in the dead of winter, preferably in the midst of a blizzard. A blizzard of unprecedented proportions. And a hurricane on top of that, if at all possible.
Just now I'm still waiting for the proper weather conditions, and in the meantime collecting the needful supplies in anticipation of the day. Ropes, for instance, grappling hooks, a decent pair of boots, a stocking cap and ear muffs, mittens (naturally), a loaf of bread for a crumb trail, and of course my various medications, as well as candy bars and cigarettes. I figure the Copaxone will stay cold enough in the expected climate (which is good, because I certainly do not intend on lugging a refrigerator up the side of a mountain--not in my condition).
In preparation for the big day--by way of toning up, I mean--I have begun to look into the idea of marathon running, as I see (also from the magazines) that this form of endurance exercise, though seemingly quite out of the question, is actually quite common among MS sufferers--preferred, though only slightly so, above hang gliding and minor league baseball.
Who knew that a disease would turn me into a sporting fanatic? God works in strange ways indeed.
Curiously, as I flipped through the pages of various MS magazines, I found that almost everyone else having MS had already decided to do the same thing, and moreover had for the most part already done it. (I know this because there were pictures).
I determined therefore to not only climb a mountain, but to do so in the dead of winter, preferably in the midst of a blizzard. A blizzard of unprecedented proportions. And a hurricane on top of that, if at all possible.
Just now I'm still waiting for the proper weather conditions, and in the meantime collecting the needful supplies in anticipation of the day. Ropes, for instance, grappling hooks, a decent pair of boots, a stocking cap and ear muffs, mittens (naturally), a loaf of bread for a crumb trail, and of course my various medications, as well as candy bars and cigarettes. I figure the Copaxone will stay cold enough in the expected climate (which is good, because I certainly do not intend on lugging a refrigerator up the side of a mountain--not in my condition).
In preparation for the big day--by way of toning up, I mean--I have begun to look into the idea of marathon running, as I see (also from the magazines) that this form of endurance exercise, though seemingly quite out of the question, is actually quite common among MS sufferers--preferred, though only slightly so, above hang gliding and minor league baseball.
Who knew that a disease would turn me into a sporting fanatic? God works in strange ways indeed.
Wednesday, November 11, 2009
The Best Parts
"It would be nice to talk to the Bud we knew growing up, not the Richard guy whose wife and disease have taken the best parts of him."
So said my younger stepdaughter from my second marriage within the course of an e-mail exchange-- this among other gems of a like nature.
By wife she means my third wife, the woman I am married to now. By disease she means MS.
I hardly know what to make of this--only that it has rankled ever since. What is meant in saying that my disease has taken the best parts of me? And what would the solution be? To suddenly, by choice, simply not have the disease anymore?
But of course, to ruminate along these lines is to add complexity to something that is really quite simple. We have all been here before. What we hope to convey by way of explanation, by way of education, is seen as mere excuse. The struggle we maintain day by day to function despite the comprising process we have to live with is seen by others as a cowardly sort of convenience, a sham, a ruse, essentially a lie. It is a lie employed to gain leverage by way of sympathy so that we do not have to face the real truth.
We have learned this nearly from the start--we have learned it as one of the very first things--People do not want to hear about it. It seems to make an unfair demand upon their stores of compassion. It is something that would require a sort carefulness and charity beyond the scope of their own convenience.
Again and again I have learned the hard way to just not mention MS at all. It tries the patience of healthy people beyond all endurance. Are the effects that this disease has had upon our abilities, upon our emotions, upon our energy, upon our minds, upon our capacity to bear stress mere inventions? No, of course not. Do these people have any idea how maddening it is for them to suggest that we choose to live this way, that we enjoy these limitations? No, of course they don't. Nor do they want to.
We are painfully aware of our weaknesses, of our deficits, and so we attempt to explain in the interest of what is factual in order that continuing relationship may take account of the situation as it is and proceed accordingly.
But my friends, it is a waste of breath, ending only in an extravagant expenditure of energy that is in short supply to begin with.
Perhaps it is best after all to simply agree--Yes, you're right, my disease and my wife have taken the best parts of me. So sad.
And then change the subject.
So said my younger stepdaughter from my second marriage within the course of an e-mail exchange-- this among other gems of a like nature.
By wife she means my third wife, the woman I am married to now. By disease she means MS.
I hardly know what to make of this--only that it has rankled ever since. What is meant in saying that my disease has taken the best parts of me? And what would the solution be? To suddenly, by choice, simply not have the disease anymore?
But of course, to ruminate along these lines is to add complexity to something that is really quite simple. We have all been here before. What we hope to convey by way of explanation, by way of education, is seen as mere excuse. The struggle we maintain day by day to function despite the comprising process we have to live with is seen by others as a cowardly sort of convenience, a sham, a ruse, essentially a lie. It is a lie employed to gain leverage by way of sympathy so that we do not have to face the real truth.
We have learned this nearly from the start--we have learned it as one of the very first things--People do not want to hear about it. It seems to make an unfair demand upon their stores of compassion. It is something that would require a sort carefulness and charity beyond the scope of their own convenience.
Again and again I have learned the hard way to just not mention MS at all. It tries the patience of healthy people beyond all endurance. Are the effects that this disease has had upon our abilities, upon our emotions, upon our energy, upon our minds, upon our capacity to bear stress mere inventions? No, of course not. Do these people have any idea how maddening it is for them to suggest that we choose to live this way, that we enjoy these limitations? No, of course they don't. Nor do they want to.
We are painfully aware of our weaknesses, of our deficits, and so we attempt to explain in the interest of what is factual in order that continuing relationship may take account of the situation as it is and proceed accordingly.
But my friends, it is a waste of breath, ending only in an extravagant expenditure of energy that is in short supply to begin with.
Perhaps it is best after all to simply agree--Yes, you're right, my disease and my wife have taken the best parts of me. So sad.
And then change the subject.
Friday, November 6, 2009
Glad To Meet You . . . Again
Last night I had a dream. A variation on a theme. I had just gotten up in the morning (in the dream, that is), had walked down the hall toward the kitchen, and was startled at the sight of my brother coming down the stairs from the top floor. My brother, you see is dead. Has been since 1982. And yet he persists. In my dreams he is never dead, and in fact seems never to have so much as heard of death.
But anyway I was startled, shaken.
What the hell? I said. What are you doing here?
He seems always to have patience with me.
I've been here all along, he says.
This makes me feel oddly sheepish. I feel confused, vaguely uneasy. I keep waiting for him to share, or at least to acknowledge by bewilderment.
But he does not. And never will.
But anyway I was startled, shaken.
What the hell? I said. What are you doing here?
He seems always to have patience with me.
I've been here all along, he says.
This makes me feel oddly sheepish. I feel confused, vaguely uneasy. I keep waiting for him to share, or at least to acknowledge by bewilderment.
But he does not. And never will.
Gone Fishing
Through meadow tracks
beside the stream
which winds
from where the forest burned
my father's boot soles
yet persist
as common as the silty springs
and confident
they lead the way
to all the places
trout have been
It is as if he left his print
upon my heart
to serve as sight
beside the stream
which winds
from where the forest burned
my father's boot soles
yet persist
as common as the silty springs
and confident
they lead the way
to all the places
trout have been
It is as if he left his print
upon my heart
to serve as sight
Wednesday, November 4, 2009
Stuck In Old Lodi Again
If I could somehow predict the arrival of these intermittent days of heightened confusion, I would just stay home and do something less demanding--wash the dishes, or do the laundry, or vacuum the rug. Or sleep.
But their arrival is quite unpredictable, and moreover you don't even know your having one until you find yourself right in the middle of it. Suddenly you hear that familiar music. No point in adjusting your TV set--for you have entered the Twilight Zone.
It was my day off work, and my wife had given me a simple list of things to do, the accomplishment of which should have taken perhaps an hour, certainly less than two.
But folks, it took me the entire day, such that I finished the last chore no sooner than ten minutes before she came home from her own full day of work.
Much of this time was spent driving back and forth between my house and one location or another in order to retrieve whatever I had forgotten--the same item being crucial for the specific task at hand. This means arriving at the bank to buy money orders without remembering to bring the money. It means arriving at the postbox without the letters to be posted. It means taking three trips to the store in order to buy three items--0ne item at a time.
What have you been doing all day? she asks. I have heard this question so many times that they are far beyond counting at this point. She imagines perhaps that I have been sleeping, or maybe just sitting, or maybe watching TV. It seems quite clear to her that I cannot account for six or seven hours of my time.
And the truth is, I can't. Not in any reasonable way, not in a form of accounting that would seem even remotely believable.
So maybe I've been having an affair. Affairs take time, right? And they're much more fun than driving back and forth, over and over, within a radius of three square miles or so.
It is an answer that would fill in the blanks, that would seem to make sense, that would seem more satisfactory even to me. It's not the truth, and yet seems kinder somehow to the reasonable parameters of credulity.
But their arrival is quite unpredictable, and moreover you don't even know your having one until you find yourself right in the middle of it. Suddenly you hear that familiar music. No point in adjusting your TV set--for you have entered the Twilight Zone.
It was my day off work, and my wife had given me a simple list of things to do, the accomplishment of which should have taken perhaps an hour, certainly less than two.
But folks, it took me the entire day, such that I finished the last chore no sooner than ten minutes before she came home from her own full day of work.
Much of this time was spent driving back and forth between my house and one location or another in order to retrieve whatever I had forgotten--the same item being crucial for the specific task at hand. This means arriving at the bank to buy money orders without remembering to bring the money. It means arriving at the postbox without the letters to be posted. It means taking three trips to the store in order to buy three items--0ne item at a time.
What have you been doing all day? she asks. I have heard this question so many times that they are far beyond counting at this point. She imagines perhaps that I have been sleeping, or maybe just sitting, or maybe watching TV. It seems quite clear to her that I cannot account for six or seven hours of my time.
And the truth is, I can't. Not in any reasonable way, not in a form of accounting that would seem even remotely believable.
So maybe I've been having an affair. Affairs take time, right? And they're much more fun than driving back and forth, over and over, within a radius of three square miles or so.
It is an answer that would fill in the blanks, that would seem to make sense, that would seem more satisfactory even to me. It's not the truth, and yet seems kinder somehow to the reasonable parameters of credulity.
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