It seems that MS is in some way a disease of acclimation. There's really not much of a choice, is there? You get used to its daily residence in your body, it's nothing new (and you hope that it never becomes something new).
Yesterday, for instance, both my legs were very stiff. I made adjustments to my gait. I watched where I was going.
Are you okay? Sant Louis asks.
Dude, are you having trouble walking?" Albert inquires. You look like you're limping or something.
Uh, hello. I have MS. Remember?
Today my legs are moving in a bit more of a human way, but they ache--in between the sharp pains that shoot from my knees to my shins, that is.
I may not like it, but the damn things are attached to me. What are you gonna do?
Acclimate. Get used to it. Do I even remember what my body used to feel like, a mere five years ago?
Would it matter if I did?
Visits
Saturday, November 1, 2008
Friday, October 31, 2008
Fifteen Minutes Of Fame
Everyone gets their fifteen minutes of fame. This is a quote supposedly coming from Andy Warhol, although I think I heard once, somewhere, that it is actually a misquote. In any case, it makes its point.
Kip Kinkle, for instance, was really no one until he showed up at high school, shot some fellow students, then went home and shot his parents. Everyone knew Kip for a short while. After that, he went to a mental institution and kind of faded away.
Tiny Tim had his moment also. Not the Tiny Tim known from Dickens’ A Christmas Carol, but the one who performed on a mandolin, singing Tip-Toe Through the Tulips in a girlish voice on the Merv Griffin Show and the Mike Douglas Show.
Merv Griffin and Mike Douglas. They had their fifteen minutes.
John Lennon and Yoko Ono once co-hosted the Mike Douglas Show.
Later on, the man who killed John Lennon got his fifteen minutes of fame too.
I remember the feeling I had when my first book was published, a feeling of having been extracted from the drab soup of life and held above the bowl, suddenly particular, a bit of substance. For a moment (fifteen minutes or so) I was no longer just part of the broth, but a particular ingredient, something specific. I enjoyed a short period of self definition.
What am I? Who am I?
I am the husband of my first wife. I am the father of my son.
I am the husband of my second wife, the father of three stepchildren who never talk to me again after their mother and I divorce.
I am the man who lives in apartment 44 and has a dog. I am the guy who prefers to sit at the south end of the bar, the guy who shows up at Starbucks every morning with his laptop, looking like he just drooled out of a pasta machine.
Before I know it, I am the husband of my third wife, father of a fourth stepchild. I have a Labrador.
And then along comes multiple sclerosis. Now this is something different, something fairly original. Not everyone has MS, just like not everyone has a million dollars and a Mercedes. There are only 400,000 or so people in American who have MS, give or take (people continue to be born, people continue to die).
Once again, I find myself identified, defined. I am the only one I know personally who has MS. Some may have a mansion, some may have a lofty title, some may have appeared in a movie. I have MS. I am different, unusual, deserving of sympathy, deserving of special attention. I can park in the wheelchair spot. I can sit at the “special” table at Starbucks, reserved for the disabled, without feeling like a sociopath or a criminal. I get to carry a cane without having to feel pretentious.
Because I have MS, I get to take a shot every week that makes me feel like I have the flu.
I get to forget where I’m going, and forget, when I get there, why I am there.
I get to be chosen last for important duties, things that really need to be done.
I get to know upon a morning here and there how it feels to have been run over by a truck without having actually to walk to the highway and throw myself into traffic.
I get to walk around like a drunk, and if stopped by a cop I get to laugh in his face even as he pulls out his breathalyzer.
I get to look forward to progressive secondary MS and paralysis in my limbs and other unpleasant complications.
Well … perhaps this fifteen minutes of fame is not all its cracked up to be after all.
Kip Kinkle, for instance, was really no one until he showed up at high school, shot some fellow students, then went home and shot his parents. Everyone knew Kip for a short while. After that, he went to a mental institution and kind of faded away.
Tiny Tim had his moment also. Not the Tiny Tim known from Dickens’ A Christmas Carol, but the one who performed on a mandolin, singing Tip-Toe Through the Tulips in a girlish voice on the Merv Griffin Show and the Mike Douglas Show.
Merv Griffin and Mike Douglas. They had their fifteen minutes.
John Lennon and Yoko Ono once co-hosted the Mike Douglas Show.
Later on, the man who killed John Lennon got his fifteen minutes of fame too.
I remember the feeling I had when my first book was published, a feeling of having been extracted from the drab soup of life and held above the bowl, suddenly particular, a bit of substance. For a moment (fifteen minutes or so) I was no longer just part of the broth, but a particular ingredient, something specific. I enjoyed a short period of self definition.
What am I? Who am I?
I am the husband of my first wife. I am the father of my son.
I am the husband of my second wife, the father of three stepchildren who never talk to me again after their mother and I divorce.
I am the man who lives in apartment 44 and has a dog. I am the guy who prefers to sit at the south end of the bar, the guy who shows up at Starbucks every morning with his laptop, looking like he just drooled out of a pasta machine.
Before I know it, I am the husband of my third wife, father of a fourth stepchild. I have a Labrador.
And then along comes multiple sclerosis. Now this is something different, something fairly original. Not everyone has MS, just like not everyone has a million dollars and a Mercedes. There are only 400,000 or so people in American who have MS, give or take (people continue to be born, people continue to die).
Once again, I find myself identified, defined. I am the only one I know personally who has MS. Some may have a mansion, some may have a lofty title, some may have appeared in a movie. I have MS. I am different, unusual, deserving of sympathy, deserving of special attention. I can park in the wheelchair spot. I can sit at the “special” table at Starbucks, reserved for the disabled, without feeling like a sociopath or a criminal. I get to carry a cane without having to feel pretentious.
Because I have MS, I get to take a shot every week that makes me feel like I have the flu.
I get to forget where I’m going, and forget, when I get there, why I am there.
I get to be chosen last for important duties, things that really need to be done.
I get to know upon a morning here and there how it feels to have been run over by a truck without having actually to walk to the highway and throw myself into traffic.
I get to walk around like a drunk, and if stopped by a cop I get to laugh in his face even as he pulls out his breathalyzer.
I get to look forward to progressive secondary MS and paralysis in my limbs and other unpleasant complications.
Well … perhaps this fifteen minutes of fame is not all its cracked up to be after all.
Thursday, October 30, 2008
Wow!
Wow, I just read about a guy, a fellow Oregonian, with secondary progressive MS. Eight years younger than I, and all but completely crippled. No use of either leg, no use of right arm. Dude, that's messed up. I guess I take my rather benign relapsing and remitting type way too much for granted. On a positive note, I am already old, and so there is not that much time left for MS to do its thang. Good to be old, so good. It's all relative, right? Damn right.
Still, how old would I have to be for being crippled not to matter so much?
I don't think there's a good age for that. Even at 80, I'd prefer to still be walking on my own two feet.
Seriously. I mean, even when I'm 80, my wife will still only be 56. About my age now.
Gad!
Hold on. I have an idea. Maybe it's best just to live day to day. Yeah?
Still, how old would I have to be for being crippled not to matter so much?
I don't think there's a good age for that. Even at 80, I'd prefer to still be walking on my own two feet.
Seriously. I mean, even when I'm 80, my wife will still only be 56. About my age now.
Gad!
Hold on. I have an idea. Maybe it's best just to live day to day. Yeah?
Cure Or Curse, Part III, The Last
My mother had Alzheimer’s disease. In fact, she died from Alzheimer’s. She simply forgot how to breathe. Forgetting how to breathe is different than forgetting ones car keys or wallet. It is not a lapse in cognitive acuity, but the purest sort of catastrophe, and quite unforgivable.
I cannot help but celebrate the fact, therefore, that forgetting to go to the bank today does not preclude going to the bank tomorrow. Forgetting a word is not the same as forgetting a language. I may sometimes forget what day it is, yet I retain my grip on the month, the year, the century, the eon.
What day is this?
I used to quiz my mom this way.
What day? Today.
But what day of the week.
Yes.
Okay, what year, Mom. Do you know the year.
2000.
She had never gotten past the turn of the century. She always answered 2000, even if you were asking her what year she was born.
Who is the President of the United States?
Roosevelt.
She had never gotten past Roosevelt, either. He had made such a vital and lasting impression in her life, and in the lives of many in her generation, that he had risen finally to the status of the eternal. The Eternal President of the United States of America, Franklin Delano Roosevelt.
In the end, all she knew were the numbers one, two, and three, which she repeated over and over again, even in her sleep.
One, two, three; one, two, three; one, two, three ….
What the hell?
When it comes to diseases, my mom sure as shit drew the short stick. Or at least that’s how I feel about it. It’s like you have to reach into the grab-bag of life not knowing what you’re going to come out with. There’s a lot of serious crap in there. Alzheimer’s, cancer, heart disease, diabetes, Parkinson’s, leprosy (and these are some of the more pleasant among the possibilities).
You reach into the bag, closing your eyes, heart thumping, sweat forming on your brow. And you come out with …
Multiple sclerosis!
Well bless my soul! Someone else gets the Old Maid, the Black Spot, this time around. Hallelujah, praise the lamb!
I am, as I said, saved by grace, smiled upon by the imp of chance.
At least until my turn comes around again.
One … two … three ….
I cannot help but celebrate the fact, therefore, that forgetting to go to the bank today does not preclude going to the bank tomorrow. Forgetting a word is not the same as forgetting a language. I may sometimes forget what day it is, yet I retain my grip on the month, the year, the century, the eon.
What day is this?
I used to quiz my mom this way.
What day? Today.
But what day of the week.
Yes.
Okay, what year, Mom. Do you know the year.
2000.
She had never gotten past the turn of the century. She always answered 2000, even if you were asking her what year she was born.
Who is the President of the United States?
Roosevelt.
She had never gotten past Roosevelt, either. He had made such a vital and lasting impression in her life, and in the lives of many in her generation, that he had risen finally to the status of the eternal. The Eternal President of the United States of America, Franklin Delano Roosevelt.
In the end, all she knew were the numbers one, two, and three, which she repeated over and over again, even in her sleep.
One, two, three; one, two, three; one, two, three ….
What the hell?
When it comes to diseases, my mom sure as shit drew the short stick. Or at least that’s how I feel about it. It’s like you have to reach into the grab-bag of life not knowing what you’re going to come out with. There’s a lot of serious crap in there. Alzheimer’s, cancer, heart disease, diabetes, Parkinson’s, leprosy (and these are some of the more pleasant among the possibilities).
You reach into the bag, closing your eyes, heart thumping, sweat forming on your brow. And you come out with …
Multiple sclerosis!
Well bless my soul! Someone else gets the Old Maid, the Black Spot, this time around. Hallelujah, praise the lamb!
I am, as I said, saved by grace, smiled upon by the imp of chance.
At least until my turn comes around again.
One … two … three ….
Wednesday, October 29, 2008
Cure Or Curse, Part II
Let me explain.
Yesterday I wrote of the built-in caveat afforded by MS to the MS sufferer, which goes something like this:
I would really like to rake up those leaves in the yard, but the MS fatigue has just totally wiped me out today. Perhaps I’ll feel better tomorrow (or maybe it will rain and render the idea moot anyway).
I would really love to work overtime for the next five days, but my body simply will not cooperate. As a matter of fact, I need some time off (and, btw, you’re required by law to give it to me). Damn MS!
Honey, I absolutely intended to take your car to the DMV and to stop by the bank and to pick up those things you wanted at the craft shop, but I just simply forgot. It all just fell through a hole in my brain.
You see?
Now have I ever used my disease in such an insincere and dishonorable manner? Of course not. God forbid. I’m just saying.
The thing is, there is really no need for dishonesty, for the conditions referred to above—fatigue, exhaustion, confusion, limitation—are baseline with MS, always present. These are the things we struggle daily and hourly against. We may sometimes feel a bit better (in fits and starts, anyway), and we may sometimes feel a bit worse. Sometimes we feel a lot worse.
We may be slow, lazy, and stupid, but at least we have a good excuse for it.
But, of course, people don’t like excuses (when they are, that is, the excuses of other people), nor do we who have MS like excuses, even our own. We make choices on a daily basis whether to give in to our illness, and thus end up feeling guilty and worthless, or whether to press on against the increasing solidity of the wall thrown up in our path by the symptoms which define our disease.
We have, to begin with, our own expectations. As healthy, non-diseased people, we were used to coming at least somewhere near to satisfying our own expectations. Now, with MS, what we expect from ourselves has not changed, but the ability, or anything like it, to live up our expectations has deteriorated quite significantly (kind of like the present economic situation in the US). It would be nice if our investments could reach anticipated goals, as they used to do, but the fact is that the bank is broke, the market has crashed, and our resources are sadly diminished.
The first rule of having to disappoint others is that this comes only after disappointing ourselves.
This is the key most often overlooked by those who do not have our disease. Often I find myself wishing that people would think this through a little more completely.
What, are we happy with being lazy, happy with being weak, happy with being exhausted, happy with being stupid?
Think again, right?
Please try to remember me as I was before. If I seem different now from what I was then, please ask yourself what happened in between. And believe me when I tell you that I'm trying, and that I am trying much harder now than I would have then.
Yesterday I wrote of the built-in caveat afforded by MS to the MS sufferer, which goes something like this:
I would really like to rake up those leaves in the yard, but the MS fatigue has just totally wiped me out today. Perhaps I’ll feel better tomorrow (or maybe it will rain and render the idea moot anyway).
I would really love to work overtime for the next five days, but my body simply will not cooperate. As a matter of fact, I need some time off (and, btw, you’re required by law to give it to me). Damn MS!
Honey, I absolutely intended to take your car to the DMV and to stop by the bank and to pick up those things you wanted at the craft shop, but I just simply forgot. It all just fell through a hole in my brain.
You see?
Now have I ever used my disease in such an insincere and dishonorable manner? Of course not. God forbid. I’m just saying.
The thing is, there is really no need for dishonesty, for the conditions referred to above—fatigue, exhaustion, confusion, limitation—are baseline with MS, always present. These are the things we struggle daily and hourly against. We may sometimes feel a bit better (in fits and starts, anyway), and we may sometimes feel a bit worse. Sometimes we feel a lot worse.
We may be slow, lazy, and stupid, but at least we have a good excuse for it.
But, of course, people don’t like excuses (when they are, that is, the excuses of other people), nor do we who have MS like excuses, even our own. We make choices on a daily basis whether to give in to our illness, and thus end up feeling guilty and worthless, or whether to press on against the increasing solidity of the wall thrown up in our path by the symptoms which define our disease.
We have, to begin with, our own expectations. As healthy, non-diseased people, we were used to coming at least somewhere near to satisfying our own expectations. Now, with MS, what we expect from ourselves has not changed, but the ability, or anything like it, to live up our expectations has deteriorated quite significantly (kind of like the present economic situation in the US). It would be nice if our investments could reach anticipated goals, as they used to do, but the fact is that the bank is broke, the market has crashed, and our resources are sadly diminished.
The first rule of having to disappoint others is that this comes only after disappointing ourselves.
This is the key most often overlooked by those who do not have our disease. Often I find myself wishing that people would think this through a little more completely.
What, are we happy with being lazy, happy with being weak, happy with being exhausted, happy with being stupid?
Think again, right?
Please try to remember me as I was before. If I seem different now from what I was then, please ask yourself what happened in between. And believe me when I tell you that I'm trying, and that I am trying much harder now than I would have then.
Tuesday, October 28, 2008
Cure Or Curse?
Lets say that they come up with a fix for MS. Lets say that they shoot you full of the newest poison and suddenly your autoimmune system is rebooted, and suddenly you don’t have MS anymore. Moreover, lets say that this magic potion goes even further and actually reverses damage that has already been done, restoring all the roads, repairing the washed out bridges, slapping on a new coat of paint to boot!
How then will I excuse myself in the future? How to explain the low level dementia that creeps affably about in my everyday life? What convenient, *regrettable* condition can thereafter *sadly* exempt me from employment in hard labor and other distasteful tasks that I would really deep down rather not do?
Would I have to give up my extended leave of absence from work, which has taken so much time and paperwork to obtain? As it is, I have wrangled out for myself the permission to work a short day every Thursday, and the right to use special time for illnesses or doctor visits (EIT) instead of my own coveted vacation time (PTO).
Are you saying that I would have to work a full eight hours again? Every day?
God forbid.
Let us be careful, therefore, lest we fail to appreciate the good fortune bequeathed upon us by disease—received through none of our own doing, but by grace. So to speak.
How then will I excuse myself in the future? How to explain the low level dementia that creeps affably about in my everyday life? What convenient, *regrettable* condition can thereafter *sadly* exempt me from employment in hard labor and other distasteful tasks that I would really deep down rather not do?
Would I have to give up my extended leave of absence from work, which has taken so much time and paperwork to obtain? As it is, I have wrangled out for myself the permission to work a short day every Thursday, and the right to use special time for illnesses or doctor visits (EIT) instead of my own coveted vacation time (PTO).
Are you saying that I would have to work a full eight hours again? Every day?
God forbid.
Let us be careful, therefore, lest we fail to appreciate the good fortune bequeathed upon us by disease—received through none of our own doing, but by grace. So to speak.
Monday, October 27, 2008
Lost In Translation
If you have ever thought that multiple sclerosis is hard to understand, or to describe to others, try explaining it to an exchange student from Saudi Arabia.
Mamdouh has been living with us for about a week and I figured he must have noticed by now my halting gait, my general incoordination, my recurring moments of cognitive breakdown. I decided to tell him all about it over a cup of coffee at Starbucks.
This is where the trouble began. Lost in translation from the outset. I had hoped that the words multiple sclerosis, or even the initials MS, would have a sufficient world-wide following to count as a given, an automatic beginning, a linguistic springboard to a more complete comprehension--like the general agreement which exists with terms such as OK, or AIDS, or JLO.
No such luck. The utterance of these two words, as far as Mamdouh was concerned, might just as well have indicated that I had something stuck in my throat and was trying to schpit it out.
Next I tried the word disease. I believe he understood this word. But the grasp of meaning where one word is concerned, as I quickly realized, cannot have extended to an understanding of why I was sitting there pointing to myself and saying disease, disease. If anything, he was probably wondering whether he should get in touch with his advisor at the exchange program.
Forging onward, where any sane Saudi might have wisely opted for silence, I began to caress my own legs and ankles, explaining that I could not feel them (even, ironically, as I sat there feeling them). They are numb, you see? Numb.
Say that word enough times and pretty soon it doesn't even make sense in English anymore.
Did I give up? Of course not. It was time now to talk about my malfunctioning brain. Leaving my numb legs behind, I pointed to my head, sort of forward from the ear and toward the temple, as one would do in positioning a pistol.
I was not only continuing to fail in my efforts, but was doing better at it all the time.
I cannot say that Mamdouh ever came to understand that I have a disease called multiple sclerosis. I do believe, however, that he did at least come to understand there is something wrong with me.
Surrendering at last to the uncrossable gulf, I took out my pack of Camels, shook out two, and together we smoked, united at last in a fellowship of bad habit. Perhaps one day I will end up with a disease that is more familiar internationally and thus avoid all this trouble in translation.
Mamdouh has been living with us for about a week and I figured he must have noticed by now my halting gait, my general incoordination, my recurring moments of cognitive breakdown. I decided to tell him all about it over a cup of coffee at Starbucks.
This is where the trouble began. Lost in translation from the outset. I had hoped that the words multiple sclerosis, or even the initials MS, would have a sufficient world-wide following to count as a given, an automatic beginning, a linguistic springboard to a more complete comprehension--like the general agreement which exists with terms such as OK, or AIDS, or JLO.
No such luck. The utterance of these two words, as far as Mamdouh was concerned, might just as well have indicated that I had something stuck in my throat and was trying to schpit it out.
Next I tried the word disease. I believe he understood this word. But the grasp of meaning where one word is concerned, as I quickly realized, cannot have extended to an understanding of why I was sitting there pointing to myself and saying disease, disease. If anything, he was probably wondering whether he should get in touch with his advisor at the exchange program.
Forging onward, where any sane Saudi might have wisely opted for silence, I began to caress my own legs and ankles, explaining that I could not feel them (even, ironically, as I sat there feeling them). They are numb, you see? Numb.
Say that word enough times and pretty soon it doesn't even make sense in English anymore.
Did I give up? Of course not. It was time now to talk about my malfunctioning brain. Leaving my numb legs behind, I pointed to my head, sort of forward from the ear and toward the temple, as one would do in positioning a pistol.
I was not only continuing to fail in my efforts, but was doing better at it all the time.
I cannot say that Mamdouh ever came to understand that I have a disease called multiple sclerosis. I do believe, however, that he did at least come to understand there is something wrong with me.
Surrendering at last to the uncrossable gulf, I took out my pack of Camels, shook out two, and together we smoked, united at last in a fellowship of bad habit. Perhaps one day I will end up with a disease that is more familiar internationally and thus avoid all this trouble in translation.
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