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one hundred (autobiographical) words or less for ideath

Bethany beach, delaware was being alone in the winter and having summer friends from filthy rich suburbs of washington which was cool. Getting beaten up by local farmers' sons was not. St. Andrew's School was escape but prison but love but depression but hormones but gorgeous suicidal poetry. Bee plus. Johns Hopkins University was Mental Notes and ROTC and the fantasticks and senior design project involving mostly stress but also some strain. Bee Ay, Mechanical. Three point five almost. Dayton, Ohio is being in love with a blonde who is a brunette and rocket science and military intelligence and of course everything, too.

So you thought the meaning of Christmas was dead and gone? Now just a mass marketed, consumer driven holiday? Fear not! The following conversation shows that (despite a little confusion) the true meaning of Christmas is alive and well thanks to the unflailing enthusiasm of my family. . .

Note: Various people entered and left this conversation at different times, thus I have forgotten who said what . . .but you get the idea!

TV: “When you think Jesus was born 2000 years ago . . .

2000? It was longer than that wasn’t it?
Er, no because –
Oh yeah we measure time from his birth.
That was the immaculate conception!
Yeah, look up ‘immaculate’ in the dictionary.
Will it have THAT in there?
Yeah, go and look it up – there’s a dictionary in the kitchen.
No, I can’t be bothered.
I can.

(exits room for undocumented amount of time)
. . .


Well, what did it say?
Immaculate conception: “Dogma that the Virgin Mary was conceived without original sin.” But it goes on to say that it has nothing to do with the birth of Christ.
Hmm . . .ok. But she was the VIRGIN Mary, right?
So doesn’t that mean Jesus was born without original sin too?


So was Jesus God?
No, he just had God in him.
He was the SON of God.
So what did Joseph have to do with it?
He was company.
He was a carpenter.
No! Jesus was a carpenter.
No, I’m pretty sure Joseph was.
Well, Jesus definitely was!
He took after his father.
Yeah we know that! That was the whole reason he was put on earth.
To build houses?
No! To teach Christianity! Preach the word of GOD - his FATHER!
Right . . .who was a carpenter!

It's Christmas Eve and I want to cry.

No one cares - none of my "friends."

I am all alone, and I want to die.

I am loved and unloved, and I don't know why.

I hope you, dear reader, are faring better than I, on this Christmas Eve.


It's Christmas Eve!

Christmas has been irritating me more this year than in any past year... perhaps because I have no money... or maybe my heart is 2 sizes too small... I don't know. In any case, I got all my shopping done, which is good.

the traffic was horrendous, though. spent 2 hours going 6 miles. Gotta love last minute shopping.

This is what I got my family:

For my Mom: A pair of leather gloves, lined with really soft turtle-fur stuff.
For my little sister, Jenny: the Avril Levrign CD. This was embarrassing. All throughout the Evanston Borders, I carried it nestled behind my hand, front side towards my body. And when I paid for it, the cashier laughed at me and asked: "little sister?" This was mildly amusing.
For my brother, Charlie: Some motorcycle racing game with hot chicks in it for Game Cube.
For my younger (but older than my other younger) sister, Katie; 2 trios of earrings (damned double piercings making buying earrings such a chore!.... hey am i one to talk???)
And for my father: A 3D Puzzle of Isengard. He will love it, I am sure. Last Christmas my mom got him a wedding band (he didn't have one before for some reason). It was just plain gold. He went around all Christmas saying "ONE RING TO RULE THEM ALL..." yeah, my daddy's a nerd :P
Grand total: $125, averaging $25/person. Damned Irish Catholic families!

Not that any of you cared.

a pet peeve of mine: how Purdue (a public universary) played a barrage of Christmas songs during the year. I saw one sign mentioning that Hanukah (Chanukkah) existed, and nothing about Kwanzaa.

Oh yeah... this is my 40th writeup! I'm proud of myself. I know thats dorky and tons of people have like... 900 or something... but 40 is good for me. I'm hungry and tired. Goodnight.

It's chrismas eve.

I've been sleeping.

My head is throbbing. My heart is pounding. There's a fire in my throat, and a pressure in my glands. There's an itch in my lungs, and a wall of force in my sinusoidal cavities.

There's a callous, on my thumb, from opening over-tightened coke bottles. There's slashes in the callous from opening bottles of beer.

There's a thin wall of cotton wool keeping all this from being a problem.

When I woke up today, next to the girl I love, I could barely breathe. Caught in that eternal conundrum - move, stir, wake her up, this incredible sleeping beauty beside me, or slowly gargle to death on my own lung juice, I waited.

I wheezed. She stirred. She was still beautiful, awakened.

Free of further moral issues, I coughed. And I coughed. And I hacked and wheezed. And I removed about half a cup of yellow death from my lungs.

There are several million extraneous bacterial agents currently in residence in my sinuses, above my soft palate, the back of my throat, and the top of my lungs.

In my stomach sits a white pill, amoxycillin and clavulanic acid. In my bloodstream courses codeine phosphate and pseudoephedrine hydrochloride, slowly losing the war of attrition with my liver. Soon, back-up forces will join them, or the wall of force keeping my sinuses in check will crack, and the precious life goo will flow from me, in a distressing fashion.

And I'll sneeze. I hate sneezing.

But that's not the point.

I've been sleeping.

This isn't something I do regularly, so it's a little disconcerting. My dreams have been filled with my current reading material, my current writing material, my current gaming material. Watching drug addictions and schizophrenia somehow express themselves as waving tentacles, on a map in my mind, superimposed on everyday life, has made sleep a somewhat unfufilling experience, of late. And tennis. I don't like tennis.

The point, the metaphor, the moral, is left as an excercise for the reader. I'm going to go, send chemical reinforcements, and sleep the sleep of the fitful and disturbed.

I am having a great day today.

The sooner I sleep, the sooner santa comes!

Hello, E2 and Best Wishes for this Holiday Season to Noders around the World!

This is my first real write-up, and I thought I'd take this opportunity to introduce myself. I humbly request that you please be patient and bear with me for a moment before you make any judgements about what kind of person/noder I am or what I'm doing. I go by the name astrobabbler here, as well as most places online, and in case you haven't noticed, I am here every single day, or night, or both. Whenever I can be. Sometimes, for health reasons, I don't make it. Other times I actually get to leave my house! But not very often. (More about all that in a minute.) Since I have all of this free time to spend in front of a computer, I have been studying E2 for more than a year now. It will be a year since I actually joined on Jan 4th!

I am fully aware that "who I am is not important here" and that GTKY nodes are frowned upon. The reason that I am taking this time (and risk?) to introduce myself, and to do the equally frowned upon act of posting a daylog, without even having earned any bullshit (yet), is because I honestly believe that what I have written for this daylog entry is actually informative, and is even more informative because it is a very personal account. I believe that a personal story can be a lot easier to understand than some cold, technical explaination.

So why have I been a member so long and never written anything until now? Well, I hate whining and I hate making excuses, but I will say, in all honesty, that it is a health-related issue. If you read this daylog entry, and follow the links to learn more about Multiple Sclerosis, if you or someone you know has MS, and/or if you really put forth some effort and did some heavy online research, you might understand. It's a very complex illness that is unpredictable, at best, and very different for everyone. Most people with MS have good days and bad days, like most people do, except the difference between a good day and a bad day can mean the difference between a wheelchair and a dance floor. All you are seeing here is the finished product, but what you aren't seeing are the good days, the bad days, (I've worked on this for almost 2 weeks now), or the extra effort it takes to produce it.

I remember back when I was a lot healthier, I was a very active, productive writer. I expressed myself with what seemed to be a gifted ease that gave me the confidence I needed to boldly face the intimidating blank page and write on it. With all of the praise that I received, I might have even become a bit arrogant. I had what I thought was an impressive vocabulary, and I referred to myself as a "word-crafter" when I was about fifteen. Pretentious, I know, but even then, with what I thought of as talent and a way with the English language, I still had the ADHD to contend with, so I'm no stranger to challenges. If I was arrogant, it was because I was so proud of winning my battles with adversity. Back then, when I was writing, I could be focused and coherent. (I'm sure the Cylert helped!) It was the only time I could ever really focus on anything so intently. I could write for hours but didn't have the attention span to read it all. I decided to go to Art College and express myself some other way, but I never gave up writing.

Then in 1994, at age 25, I went blind in my left eye and learned that I might have MS. The vision in both of my eyes has come and gone several times since then. In 1996 when the entire left side of my body went numb, a sample of my spinal fluid and an MRI confirmed it. The diagnosis was, indeed, Multiple Sclerosis; Relapsing-Remitting MS, to be exact.

The more I thought about it, the more I realized that I had probably had MS my entire life, and the ADHD seemed to be closely related, as did the depression, the "artistic temperament," and most of my other quirks, of which there were dozens. Although I had way too much time on my hands after the diagnosis, and more to write about than ever before, I was writing less and less.

Then in the fall of 1999, I had the worst MS attack of my life. My neurologist compared it to a major stroke. We estimated that I had lost the use of approximately seventy per cent of my vocabulary. (It actually seemed like more to me.) That was just one of the effects. I could think, but it was an entirely different kind of thinking, and it's still hard to get used to sometimes, as my mind sways to and fro between the "normal" thinking and the "affected" thinking. I felt like the kind of person Oliver Sacks would really like to meet. Maybe he could help me. Maybe he could explain some things.

During that nightmare of an attack, because of the "new way of thinking" I could barely express myself at all. It was as if I'd had a massive head wound. The aphasia was the worst. There are few things more frustrating than aphasia. Well, just try to imagine having entire sentences of words that are "on the tip of your tongue" but you just can't, for the life of you, find the words. I was like that for months.

The Sapir-Whorf hypothesis node offered me much insight into this "new way of thinking." The node has some strong arguments against the hypothesis. My personal experience tells me that the hypothesis is simply worthless. However, reading the arguments in this informative node helped me understand the way my mind now works a little better than I ever have, and I recommend it if you are interested in this sort of thing, as well as the excellent node Thinking without words.

With time, my brain slowly started repairing itself, for the most part, though never entirely. Some things just came back to me, even if just in fragments, but others I had to rebuild from scratch. It's taken me a long time to get this far, and I still struggle every day. I no longer call myself a writer. Now I'm just here. I aspire to write, and to write really well, but there is so much that this illness can take away from you, even though it can give you a new, sometimes very refreshing perspective. Still, not too far in the back of my mind is the reminder that everything I've tried to learn to do since I was diagnosed, and nearly every dream that I've had has been crushed by this illness. Still, I haven't given up. Now I just do the best I can and hope it'll do.

I really love this place. It is my dream to contribute nodes that are up to my (very high) standards and yours (that may be even higher!).
(This node is not an example of my very highest standard. Please read what I put at the end.)
Thanks for your time and attention!

and now...

The Relapse : Part One

Aw, jeez...
Not another relapse! Ugh!
I'm not even talking about the Multiple Sclerosis this time. Well, I'll talk about it for a minute, or however long it takes, because it is a factor. I am in one of those most hellish MS limbos right now. I am in neither relapse nor remission, but I am in a constant state of pain caused by severe spasticity. The latest MRI shows no really significant new lesions, although it does show some very "active lesions" that are not new. Thus there is an intense worsening of the symptoms I've struggled with for a few years now. But because none of the pain is new, and I have no new symptoms, this is not considered by my doctors to be a terribly significant event. Still, it was in stark contrast to the last time I saw my Neurologist, when he commented on how very well I was doing and that he didn't think I needed to be on any of the injectable treatments (often referred to as the "A-B-C drugs: Avonex, Beta-Seron, Copaxone) because the quality of my life would most likely be better without them if I didn't seem to need them.

It is true that A-B-C drugs are difficult to justify taking if you are in remission or if your case is a very mild one. They are very expensive, and even though they are free for me, courtesy of the taxpayers of Tennessee and a wonderful lifesaving health care program called TennCare, I know there are many who need them that simply can't get them because they are so expensive. With the Avonex and the Beta-Seron, the horrible flu-like side effects make one ill on days that might have been just fine. In the case of the Copaxone, there were none of those types of side effects for me, however, the injection sites would swell into huge, painful welts about the same diameter as a CD, and were sometimes even disfiguring. I have some pretty deep dents on my hips and my thighs that were once injections gone wrong. Of course, needles always suck...

Then there is the whole issue of who will be giving the injections. Ideally, I suppose one would inject one's self, but there are two major problems with that: 1) Not all of the sites you have to chose from can be reached by the patient. Giving an injection is quite a bit more complicated than scratching that one square inch of your back you can't seem to reach without really straining hard. 2) A fairly common symptom of MS is tremors. I learned the hard way that my hand was not steady enough to give myself these injections, even if I used the handy-dandy "auto-injector"; a spring loaded device that will deliver the subcutaneous injection at the proper depth and at the proper speed and all you have to do is push a button, and hold it very still for 10 to 15 seconds. Finding someone who will give you your injection at the same time every day is very difficult for a single person. I'm guessing that if you're married or have a live-in mate, a real sweetheart of a roommate, or something equally convenient, it might not be a challenge at all, but I wouldn't know. My boyfriend has volunteered, but he lives in another town and I don't see him every day.

Besides all of that hassle, the A,B,C, drugs don't offer any relief of the symptoms. All they do is slow down the progression of the disease, by thirty percent, at best, whatever the hell that means. I will admit, however, that while taking them last fall, I did feel better a lot of the time. But, well, I was madly, way out of my mind in love, too, and I've noticed that a hot new love affair can have profound healing effects, just as much, if not more, than stress can make the MS so much worse. MS can be extremely psychosomatic, and because of that, I have learned a lot of startling things about my "true feelings."

At the time that I was taking the Copaxone last fall, I figured it was most likely a placebo effect, because I was told flat out that it would not make me feel better and that I wouldn't notice any difference. Understandably, it's really hard to say how affective the two of the A-B-C drugs that I've tried might have been. (I also took Avonex for a while, but was too healthy then to spend three days a week in bed with fevers and body aches) All I knew for sure was that the side effects weren't worth it because I had days that were 100% symptom-free back then. But now I can't remember the last time I've had a symptom-free day, and so I have plans to start taking the Copaxone again as soon as I figure out who's going to pull the trigger for me.

The plan is for my boyfriend (not the one I was seeing last fall) and I to get a place together by February, hopefully. I am desperate for a one-story home, or, at least, a room on the ground floor. As it is, I struggle against the stairs every day. Living on the second floor... makes... no... sense... but my parents are a little thick, and they can't seem to come up with any ideas to help me out. They just watch as I go, ever so slowly, one step at a time, as if they were slowing down to look at a car accident. It's tragic, but what can they do about it? Although there are other rooms on the ground floor, two of which are never used, they won't let me have them. So even though I said I'd never move in with another boyfriend ever again, at this point, it looks like my best option. He is willing to give me the injections... (heh heh), and he does take the very best care of me he can. He really wants to help me. I've never known anyone like him before. Maybe it won't be like the other times I've made the mistake of living with someone. *gulp*

Please, light a candle or pray for me or something! It's all so scary these days! And that's saying a lot for a ballsy bitch like me! *sigh*

As for treating the symptoms, there really isn't a whole hell of a lot my doctors can do... The most they will do about it is give me the usual 600mg Ibuprofen and ten 5mg Percocet a month. The high dose Ibuprofen, even mixed with aspirin, acetaminophen, the occasional Darvocet, an anti-seizure drug called Neurontin to calm the spasticity, a small dose (if taken as prescribed), or even higher, of the highly addictive drug, Klonopin, and the Percocet taken all at once still won't make a dent in the pain these days. It used to be that a Percocet would do just fine, and that ten times a month was only slightly less relief than I needed. Even a half of one helped some. I'm not at all sure why my doctor is so stingy with the narcotic painkillers. Why almost no Percocet, yet so much Klonopin? Maybe it's the tattoo?

Ten Percocet a month is hardly enough to build up a dependency upon. A Percocet can provide relief for maybe four hours. So, to sum it up, my doctor gives me ten 4 hour vacations from my agony per month. Lately it's not even that. What about the remaining 680-704 hours of the month? Lately the inescapable agony either has me crumpled up, weeping, helpless, and broken, or I am enraged, screaming about mercy, amputations, and euthanasia, howling, and wanting to break things. I used to be a lot stronger than this... I used to have remarkable strength and poise before the MS became so serious. In the last few years, however, I find it a real challenge to conduct myself with grace and dignity in helpless, painful situations, be they physical, emotional, spiritual... Yeah. Just ask my last lover and his girlfriend about how much grace and dignity I have. Oh... the horror...

It has finally become so bad, so unbearable, that I am very seriously considering an option of elective, temporary, paralysis using Botox injections to my legs, and maybe even my back and part of my left arm. My right arm does act up just as much, but I am doing my best to ignore that, being right handed and all...Yeah... umm, well... I use the term "elective" loosely, just as I do when I speak of my tubal ligation. I certainly didn't volunteer for this illness, and I certainly never wanted to be spayed like a fucking cat any more than I want to have my freakin' legs paralyzed to spare me the pain, and go 'round "Waist High In The World" with limited access, mobility, and... and... you name it, it's limited. I have no trouble admitting to anyone at this point that I'm scared to death. It's very difficult to imagine how difficult and stressful life is when you must rely on others for so much help. The loss of my independence is just as difficult to deal with as the pain.

It's such a challenge to see anything other than the loss. I've lost my independence, my career dreams, my ability to have a family, to have children of my own. OK, so I wasn't exactly spayed like a cat. The procedure is quite different, and wow! I have no scar whatsoever! Even though I wasn't spayed, but merely had my tubes tied, the results are the same. Not exactly the same, because I could still, theoretically, have a child... with a lot of help, but why would I change my mind now?

::trying very, very hard not to think up any answers to that question.::
Just because I weep damn near any time I see a baby? It really feels like involuntary sterilization, and as my duty to my family, and to society. Yeah. You're fucking welcome. On top of the MS thing, I'm ever so slightly bitter about the "no babies" thing... It's probably a good thing that I'm a virtual shut-in and only very rarely see any real-life, 3-D human beings and their young. An ex of mine whom I went out with for nearly four years, and whom I've been close friends with in the three years since we broke up, became a father yesterday. His son's mother is a girl who could/would be perfectly healthy, but has chosen a lifestyle of heavy, habitual, yet purely recreational drugs: mainly coke and pot and alcohol. She also has a very reliable, monthy bout of hysteria, psychosis, violence, and promiscuity. I swear, it's so reliable that you could set a clock by it. A lifestyle that she did not even alter much at all until late in the pregnancy. We were all in great suspense about who the father of this baby was. I am sad to say, it wasn't anyone she picked up at the local "meat market." And despite the pot, cocaine, nicotine, and alcohol use, the baby appears to be in perfectly healthy condition. Well, I'm sure that even though there doesn't seem to be any damage done prenatally, even graver dangers lie ahead for this poor innocent child. Ugh... Ouch. I feel as if I've been bitchslapped by the fates once more. Did I make a mistake when I decided that I really didn't have much choice other than to have my tubes tied? Did I make a mistake when I decided it wouldn't be fair to that child I could have had in '94 to be brought into a world where the father didn't want a child at that time,(or, at least, not mine) or to have a mother who might constantly be struggling with an illness as potentially horrific as MS? (At the time I made that decision, all I had been told by the doctors was that there was a chance I might have MS, but in my heart, I knew that I did.)

If I make this decision to have the Botox injections to relieve the pain of the muscle spasms, and I decide I made the wrong decision, at least I'll get a second chance. The Botox wears off after a few months. In the meantime, I'd get to be a real, full-blown, card carrying cripple! People won't look at me so harshly when I get out of a car parked in the handicap spot. I do have a permit, but, other than a slight limp, I don't appear to have anything wrong with me. But, wow! A wheelchair! I wouldn't be 100% paralyzed, so getting in and out of it would probably not be too hard. I wouldn't need anyone to come into the bathroom with me and wipe my ass for me. At least, I hope I wouldn't. It would be selective, temporary paralysis, but enough to make walking if not impossible, then so challenging that I would be a fool to not just get some wheels.

I want a pair of red pointe shoes. I've decided that when I end up in the chair, I want to always either be wearing spike heels, like the 5" kind they sell at those fun adult stores that sell everything from lingerie, to swing sets, to anal beads, to inflatable friends, to thigh-high boots or wear real dance shoes, like taps, or ballroom dancing shoes, or a beautiful pair of genuine ballet pointe shoes. My whole life I've always danced like a maenad, becoming the music and feeling as if the music is what is in control, and I am merely channeling. It's the most beautiful feeling I know... at least as good as most sex... And so I have this obsession with The Red Shoes; the Hans Christian Anderson version, though the 1948 film is poignant as well. In the Anderson version, the girl with the magical, yet evil, beautiful red dancing shoes can never stop dancing once they are on her feet. She finally has to ask some man with an axe to amputate her feet. I've never had any red shoes. Not yet, anyway. But soon... I hope that by the first week in January I will have my pointe shoes.

I can totally relate to not being able to stop dancing. While completely sober on NYE, Y-2-Trey at Big Cypress, I was on my feet and dancing for the entire eight and a half hour set. I just couldn't stop. It was typical of me to dance uncontrollably and wear myself out in a hurry. It was unusual because I have MS, and I am so easily fatigued, and I danced longer and harder than 95% of the people there. And I was sober. It's unlikely that many, if any of the others who danced as energetically as I did were sober! I mean, it was a phreakin' PHiSH concert! It was Y-2K! It was the largest concert on the planet that day because of all of the fear. Very few folks at that show were sober, and even fewer kept up with the band and stayed on their feet all night.

Please pardon the interruption, but I feel the need to humbly request, well, insist, really, that the reader refrain from making any assumptions about me, any assumptions at all, based upon the fact that I like PHiSH. Pretty much all I have in common with the majority of the "phan-base" is that I really love PHiSH. And I am something of a tree-hugging liberal very concerned about the environment. I am not a chronic dope-head. I am sober much more often than not, though not always, and not always voluntarily! I do not dress like them. I do both wash and comb my hair. And, contrary to how this must sound, I believe I am more tolerant and accepting than the average "phan" on the lot. It's all about appearances there, believe it or not. If you look clean, seem clear-headed, and aren't wearing the proper attire, most phans won't even speak to you. Pity, really. I'm sure there are some wonderful people that I'd really love to know that are typical PHiSH phans, but I've only been able to make friends with them over the internet because I refuse to dress like them just to fit in. I only dress like me! I don't know how many of them are into Tool, Nine Inch Nails, No Doubt, Radiohead, David Bowie, David Byrne, Ella Fitzgerald, etc, and do not like to listen to the Dead or most of those other jam bands. Now and then, there is a surpising variety of music being played out in the lots, though. I think that's where much of the diversity begins and ends. And then there's me. ::sigh:: I felt the need to clarify that I am really difficult to label, and it only takes a moment to realize that although my love for the band and seeing them live is huge, very few people would consider me to be one of those typical PHiSh phans. Yeah. Even though I act like one when I'm typing about them, even though I know most of the words, even though I own many shows, even though I am an official Phunky Bitch, even though my name is in the acknowledgements at the beginning of the book "The Phish Companion" (for writing reviews), PLEASE don't think of me as "one of them". There's only one of me. When I meet another, then I can be labeled and be called "one of them" but until then, I am very much an individual, even though we are all one. I'm sort of like a Wiccan that's a solitary practitioner, except it's PHiSH.

Thank you, ever so, for putting up with quite a hefty dose of my "Gee!-I-hope-they-don't-get-the-wrong-idea-about-me!"-neurosis!

We now return to the prior stream of consciousness, already in progress.

I feel as if I've certainly earned a lovely pair of red pointe shoes. I also love the irony of it, the profound, multi-layered, symbolism and from the "glass half full" perspective, I can look at being in the chair as an opportunity to wear any kind of shoes I want! As is is now, I don't have the strength or the balance to wear heels or mules. When I'm in the chair, I will wear only the grooviest, sexiest, most dangerous shoes I can find! I wore my super-sexy high heels while I was in a wheelchair for Dragon-Con this year. (photos @ http://photos.yahoo.com/astrobabbler ) The shoes and the mini-skirt also kept me from being as "invisible" as one usually is in a wheelchair. And I mean, let's face it: there are times and places where one wants to be seen. Dragon-Con was one of those times and places for me, but I had to be in a wheelchair. I think it might have even made me more visible, being on wheels.

Oops. Oh my gosh... My Freakish Pollyanna is showing, isn't it? Well, if I didn't have my "glass half full" voice, I'd be long dead by now. Not to be morbid or anything, but MS isn't the only life-threatening challenge I've had to face, or that I still face. Every once in a while, my inner Pollyanna makes an appearance to save the day.

Ever since I first found out I was ill, people have told me, nearly every day, it seems, how "brave" I am. Am I? Compared to what? I always thought that was odd. I heard it a lot when I had cancer, too. It seemed so absurd. It was as if they were suggesting that I was so brave to have cancer like that. And to be able to deal with it so courageously. It was very minor cancer, but only because it was caught on time to be operative... Oh, yes! I was SO LUCKY! (ha!) otherwise, as the oncologist at Vanderbilt told me, it was a rare, but usually swift and deadly kind. So I had a couple of little surgeries, no chemo, but... brave? One thing's for sure: the cancer was not the least bit frightening in comparison to the idea of this MS, and this pain. I must say, there is no greater challenge I have ever had to face than to try and find the will to go on when it all hurts as much as it does right now. The pain is so distracting that I find myself holding my breath, as if I'm forgetting to breathe sometimes... I write this now, very slowly, as a last ditch effort to fight distraction with distraction. In my whacked-out mind, two distractions add up to be the closest thing to what I imagine it must be like to possess the ability to concentrate... This is not the type of thing you can sweep under the rug, "think about tomorrow", or escape! It must be faced! It is my personal philosophy that one should always face everything, to just DEAL, for freak's sake! preferably in "real time," but I know how extremely rare and unpopular that notion is, so I won't rant about all that here right now. I will say that I do believe that "what we would try to avoid comes to meet us". I sure can't run away from this. (No sick pun was intended there, I swear!) I most definitely wish I could sometimes, but only because of this pain. But this pain, like most pain, be it physical, emotional, spiritual, etc) seems so difficult to avoid.

...and coming up next time in...

The Relapse : (Part Two)

" There is no enemy more formidable and relentless than chronic pain... except, well...

"Heartbreak makes this kind of physical pain comparable to a papercut or a hangnail," she groaned as she folded her arms tightly over her middle and bent over as if she'd just been punched in the gut. Repeatedly."

I hope you've gained something from this daylog write-up (unless it's a headache, or worse) and I hope you'll come back for Part Two! Not sure when it will be available, but it's almost done.

Since this is my first ever read write up, I would really appreciate any comments, advice, criticism, etc. I am particularly concerned about my grammar and punctuation. I realize that one is usually expected to start out with factual nodes, earn one's bullshit, and that daylogs are usually pretty unpopular. I would not have submitted this one if I didn't think there was nothing to learn from it. Since it was a daylog, I didn't think it hurt that it was subjective. This is really just a test drive. I am curious to see how this does. I don't expect it to be embraced and cooled or any of that... Like I said, this is only a test to see if I've got the mechanics right, and to see if anyone has any reaction to it. (MAN! What a time I've had struggling with all this Java/HTML whatever the hell this stuff here is. And I don't get it either, because last week I thought I understood it completely. Or at least well enough to do this, but it looks as if I was quite mistaken. Maybe it's one of those MS malfunctions... *shrug*) And if anyone out there would like to adopt me as their young apprentice or anything like that, I would be most grateful! I had a mentor I was assigned to but they sort of vanished! I never see them online. I figure the "mentor" who finds me and choses me would be much better for me and for E2! Perhaps I ought to mention that I can write short, (yes! short!), witty pieces, as well as very informative pieces, or just about any type of piece, really, although I confess that the factual earning of bullshit appears to be my biggest challenge right now. That one and aquiring the accurate birthtime of P.J. Harvey so that I can write about her astrological chart!

Well, Happy Holidays and May At Least One Dream Come True For You This Magical Season! I'm wishing for snow, a pair of red pointe shoes, a coat, and most of all, for a friend's forgiveness, and/or for a reminder of what it feels like to have no pain, no pain at all, for about 20-30 minutes. Whew. One pain free moment would be a Holiday Miracle at this point...

Wishing you Comfort and Joy,

An update: Monday, December 30th, 2002

Even though I was horrified by all of the initial mistakes I made on this node and was extrememly eager to get back here to correct them, I haven't had time until now. My boyfriend has left town for a few days, and I have some welcomed, much needed solitude. Please don't get me wrong. I love him, it's just that... well... let's just say that I prefer a cat as a pet, whereas he likes dogs. I am enjoying this little vacation. I really needed this time and space to think, to work on this and to write more! I am so eager to write more!

As for my x-mas... (I'm a Winter Solstice type person, but my family are "Christmas" people...), of all of the wishes that I listed above, I got one! SNOW! I love snow, so that was really wonderful!

On the downside, my wish "for a friend's forgiveness, and/or for a reminder of what it feels like to have no pain, no pain at all, for about 20-30 minutes. Whew. One pain free moment would be a Holiday Miracle at this point..." was something I did not get. (The friend is a noder, by the way, and may or may not have read this.) I'm not sure which I wanted more, for they were equally valuable to me. To receive either one would have seemed like a real miracle, and I'm willing to bet just about anything I have that the friend's forgiveness would alleviate the physical pain for at least a little while... perhaps even for a few days... In fact, I'm damned sure it would! The "lack of forgiveness" (for lack of a more accurate term, it's a very long story) is more painful than this crushing physical pain. (More about how that works in "The Relapse:(Part Two).") Well, I've apologized all I could... I've done all I could possibly think of to make up for it, to fix things, and yet I am still cut off. I am powerless to do anything about it now and I have been for quite some time, yet it haunts me, always. Perhaps my New Year's Resolution should be to forget about the whole damned thing, except, I literally wish that I could every single day as it is, and I don't make resolutions. Since I quit smoking last November, I don't know what I would try to do if I did make resolutions. If I think of anything, I'll let you know. And if anyone has any brainwashing or banishing techniques or recipes to cure one's self of such a painful affliction as being haunted by an unforgiving person in one's past, (it's not what I would call guilt, really, like I said, it's very complicated, but if you want details, msg me) please! I beg you! msg me with your possible cure. I so rarely ask for help, especially when I need it, but I've come to realize recently that drastic measures may be needed to fix my head and mend my heart from this ordeal that is really sapping the precious life out of me. I can't understand why someone as powerful as I can be, as powerful as I usually am, is so helpless in this situation... I've run out of ideas... Anyone...? Beuller...?

Anyway, other than all that muck, my holiday was ok. I dressed up really silly. My doctor gave me a Christmas present of a larger prescription of Percocet for the Holidays, so, even though the pain was still there, I was doped up enough on pain meds to be able to deal with the whole mess. I survived it. *and it snowed!*

I hope your holiday (if you had one) was fantabulous, if not better, or at least tolerable, and I send out my very best wishes for the New Year! :}


20 Shawwal, 1423 Hegira

So it is Christmas Eve at last, and I've been gone for three whole months.

Sana'a is, as always, oblivious to the outside world, and one could be excused for forgetting about the whole Christmas thing altogether. Sure, there are fairy lights, but then there always is, leftovers from Ramadan or the latest Revolution Day celebration. I keep on forgetting which revolution it was we were celebrating a month or so ago - Yemen has had so many. The only thing I can remember from the day is a shooting incident near the al-Shahidun mosque, hardly reported by the local press despite three people dying, two of them women. Like revolutions, deaths have been too numerous of late for anyone to take active interest in them.

"'Eid al-miladi al-mubarak", the qat-seller greeted me today when I emerged coughing from the cloud of dust blanketing Sana'a every morning, when the 4WDs yet again start grinding the unpaved streets of the capital. "Blessed Christmas to you." So they know, and they know I'm feeling lonely today. Ask any Yemeni, and they will tell you nothing is worse than being alone, without allies, without a home. Yea, verily, they will say, it is the lot of a foolish foreigner. Solitude, says the seller of qat, is a thing of the West.

So it is Christmas Eve, but the muezzins of the hundred minarets pay no heed to the date. Every month, every day they invite the people to bear witness that God the Most Great is one, sending their haunting cries forth from hundreds of loudspeakers. Every day, five times a day, I feel alien to these people and this culture with its mixture of faith and violence, fierce pride and extreme poverty, and the religion I cannot understand any better than the one which supposedly is my own.

Roaming the streets after the noon prayer, one can see the feeble expatriate community of Sana'a coming together for this one lonely night. Candles are lit, mince pies are baked (from raisins, for there are no plums), someone has managed to secure an illegal bottle of red wine. All the while someone is reciting the Quran in the next apartment, giving the party an eerie, otherworldly feel. The ajnabiuun, the foreigners - students, traders and travellers - bear their desolation bravely though. A teacher of medicine from France plays Christmas carols on the old, battered piano, which probably was left behind by the British when they left Aden for the last time in 1967. Merry Christmas, dear friends, merry Christmas.

It is Christmas Eve, and I'm still worlds apart.

Its wierd being at my fiancee's parents house for Christmas. (Its the first time we have done this in the 3 years of dating.) I had to beg to get on the compter and get on thier dial-up account from Juno. Its a pain only one phone line in the house, one computer and everything. Welcome to the stone age....

The best part is that my boss was willing to let me take today as a vacation day or I would have been at work today and then would have had to rush over to her house in Livonia in time for the family Christmas party. It's not the first time that I have spent with the extended family, its just the first holiday. So I hope everything goes well and things work out and I'm not too bored. Chances are we will sit around and pretend to laugh at all the stories of the year, pretend to understand all the inside jokes and pretend to have a good time. (At least I will....)

Oh well, time to get off the dial-up because they only have one phone line. My future father-in-law is either to cheap for broadband or too afraid of "hackers" or as he puts it a little from column A and a little from column B.

Merry Christmas to all my friends here as it will be after Christmas that I will get to login and check my messages.

"Whatcha reading?" He was about six years old and his face was freckled, blue spheres dancing around, looking for his thoughts that were somehow floating about the MAX. Grouped with children his age, sitting across from me.

"It's called Requiem for a Dream." I could tell that this was going to be an interesting conversation. I haven't had the opportunity to have a serious discussion with a youngster since I was working at a preschool.

He paused and his eyes danced, and the round vowel noises of his words struck my heart: "What... what is he dreaming about?"

My first thought was surprise that the boy, already at such a young age, predicates that a male is the main character of the book I am reading, that he may not understand the word requiem but hearing "for a dream" he could make the connection that someone was dreaming about something. I decided to simplify, but quickly: "He's dreaming about a better life."

"What's wrong? Does he not have enough stuff?" And then I thought about it, and on one hand it is true, Harry Goldfarb is technically suffering because he doesn't have enough heroin to keep him going. Technically. The tragedy of that is that he never needed it in the first place, but the reality of the situation is that now he has that need, that desire. All of this I obviously could not communicate to this warm-hearted child.

"Well... he's poor. And he's worried about his mother. And his friends are poor too, and they all keep getting sick.

"Maybe he should get a job. My mom was poor but then she got a job and we have two dogs..." Our conversation went on from there, and I joyed in the ease with which one can talk with a boy of that age. He told me about his pets. About his grandparents, and how one of them is gone now. All the while he was inclusive. He asked me about my grandparents. He was a christmas gift that I will treasure. I kept thinking, while finding my way home after transfering to a bus and reading further: I hope he never knows this life. I hope he never needs to. I hope his mother is good to him, and that he will always be good to his mother. I hope that he is welcomed by friends, challenged in his education, and is never willing to take a position of mediocre intelligence to match the predominate statistic around him. I hope that he enjoys the Oregon Zoo as much as I do, for years to come. That he never lets go of the six year old inside of him.

I wish him, and all of you, a very merry christmas. Despite whatever you feel about the holiday, whatever hesitations and preoccupations you may have with it (and I have my own), remember a child's love, and love your child, inside, outside — everywhere.


6 o'clock on Christmas Eve, I get a call from Edward, my best friend, telling me to look outside my front door. There I find one of his self-designed cards that we spent Sunday evening printing. That made me happy.

When I was out with him doing his Christmas shopping, he coyly tried to add some picture frames to the basket. It was pretty clear that they were intended for me, as earlier I had been complaining that I couldn't find the kind I needed to house some of the pictures that I have of him. Hoping I wasn't wrong, I obliquely thanked him but asked him to put them back. But when he's spoken over the last two days of his card list, I was silently hoping that I was on it.

Upon reading it, my elation so eclipsed the happiness of just a few moments before as to make it nearly invisible by comparison. The message he wrote was so sweet, it blew me away. That card is the best present I've ever gotten. I was leaving a message on his phone, telling him how much he means to me, when I suddenly found myself tearing up and barely able to speak. He is such an incredible person, and I am so lucky to be his friend.

He had said that he doesn't write much on holiday cards because people don't really appreciate them, and certainly don't keep them. My task now is to somehow get this one laminated or encased in transparent aluminum or something, so I can read the inside and enjoy the design on the outside for at least the next twenty years.

When the truth is
I miss you.
The truth is
That I miss you so.

Warning Sign

No one knows why these things happen, but say them aloud at the right moment and no one will doubt your integrity. For many years have passed, and each year at that twinkling anniversary I would ask myself why in all the hours of hapless rambling I've done have I never written a Christmas story for my children.

It has always been my favorite holiday and I have not hidden the silly tickling I still feel in my stomach when I see those endless cartoon reruns. They remind me of my childhood. Of laying beneath the tree, smelling the pine, and watching the tiny glowing lamps reflect off glass spheres, creating a small galaxy inside my world around which orbited everything I dreamed.

Despite the religious significance and my Catholic upbringing, Christmas never held any parochial significance for me, but rather, was an exercise in kid hedonism that eventually led me to the presumption that anything, anything at all, was possible if one asked correctly.

And the more pious would provide the scorn of which my greed makes me no doubt worthy. As a child there was little else in the holiday except the wonder of the receipt of gifts.

So it never surprised me that as time went on and I could no longer be amazed or made grateful by the moderate material goods dispensed to me by others, that I buried myself in my work and lost the spirit of the holiday I thought I'd had. First it was college. Working until the 24th, late at night, lab reports, my thesis, take home tests. One hour I'd be poring over books, and the next, have to bring birth to a thorough gratefulness in return for a pen or leather binder I'd have no use for and would inevitably lose.

I didn't see it happening. I felt the spirit of the holiday was indeed buried somewhere in my heart and that I need only mine my conscious intent to bring it back.

But for now, it was work.

Undergrad. Grad school. Then the onset of my career. The continuation. The pursuit of wealth.

I became that accursed lender whose name one applies to the miserly and the loveless. I knew it. It didn't bother me to become Scrooge.

After all. We were all Scrooge. We all worked weekends. We all missed our kids birthday parties, cursed our fellow motorists in Christmas shopping frenzied parking lots, cut in front of each other in line at the grocery stores.

But we were different. Our living rooms burst forth with gifts on Christmas morning. We dropped twenties into the Salvation Army pots and handed out witty gifts to our work mates. We gave our spouses diamonds, and made sure our children had the toys that would make them the envy of their peers.

Our Christmas was a myth we held for the hour per season we allowed ourselves to enjoy reruns of "It's a Wonderful Life", "A Christmas Carol".

And then we got back to the work that needed to be done. After all, Scrooge reformed, handed out his gifts, and remained wealthy and happy for the rest of his years.

This would be us. This would be me.

Into this numbing life sorrow descended like freezing rain. Four years ago I lost my father to terminal cancer. I watched the man wither over two years and die miserably. Over the thirty plus years of my life I had grown to understand him. He'd shepherded me through business. Passed down his hard-learned business know-how, and had become my colleague and my best friend. His death left a hole in my heart that remains unfilled to this day.

Still, I had my wife and children, and the love they provided was the rock upon which I stood to weather the pain of my dad's passing. It was more than enough.

With a lump in my throat I went back to my job and my life, and provided Christmases which I thought could rival any ever enjoyed by the Rockefellers or the Windsors. I showered my family with gifts, remembering the meager fetes my father provided on his small wages as first a shoe salesman, then an office clerk in heavy industry.

They would have things I dreamed of. I would be Scrooge reformed. No amount of money would limit the wishes I would fulfill.

And so, dear ones, what I tell you now you must believe I know to be true, because it happened exactly as I'm about to tell you. As all miracles must seem like dreams, this one started that way.

Two years ago at this very time I was sitting on the sofa, having finished wrapping and admiring the pile of gifts I could provide, a mountain with a peak taller than a small child. Our house guests had just departed. The haze of scotch and wine still lingered but I had one or two more gifts to dig out of the car before my work as a Christmas elf was finished.

My eyes were heavy, burning. I thought I would rest them a minute, then continue.

My lids had hardly closed when I felt someone kicking my foot. I thought at first it was my brother's dog. He'd gone back to the east coast for the holidays and so, as usual, we were dogsitting for Christmas. The dog must need to go out.

Another kick. Firm.

Now I knew it was my wife and I would have to ask her to go upstairs to the bedroom while I finished collecting the last of my booty. I opened my eyes to tell her this when the image and the voice I heard stopped my heart.

"Hey kid."

When I opened my eyes I did not understand what I was seeing. There in the dull reddish orange glow of the Christmas tree lights was a shape. At first I saw only the two blue eyes, and then the body.

In front of me was a young man, no more than eighteen-years old. He wore a sweaty, sleeveless T-shirt. A thin gold chain suspended an Italian horn and a crucifix below his neck

He wore loose chinos, white socks, and penny loafers.

"Kid. Wake up," he said, in a thick New York accent that made me think at first Billy Joel had broken into my home. Then I realized I had been somehow transported into rumble scene in "West Side Story" and at any moment this Italian punk would pull out a gravity knife and threaten my life.

My nerves alight with electric fear, I scanned the room for a weapon. The heavest object at hand was the wrapped razor scooter I'd bought for my youngest daughter.

I grabbed it and held it between us.

"Honey? Call the cops," I screamed.

"You gotta problem, kid?" the youth said.

"Get the hell out of my house. Get out now before you have to spend Christmas Eve in the Santa Clara County lockup," I said, as loud and deep and scary as I could summon. Then I added, yelling again to the stairs, "Honey. Nine one one. Fast."

He ignored me, looked around at the gifts, and said, "Nice spread." I was going to clock him with the razor scooter, but he looked up quickly.

"What's that?" he asked, reaching out with what seemed to be genuine curiosity.

"I'll kill you, you son of a bitch."

"Merry Christmas to you, too, man," he said.

"Screw Christmas. Take what you want and get the hell out before the cops come."

"Screw Christmas?" he said. He ran a hand through his dark curly hair. "Is that what you've learned? All these years, nobody taught you better?"

I picked up the desktop stereo I'd bought my middle kid, knowing full well I could replace it in a post-Christmas sale on the twenty sixth.

"Here. It's a stereo. Take it and go before I bash your brains out. I'll cripple you, you bastard."

He shrugged, raised his hands, and turned a lazy circle in my living room like kids do when nothing they say is understood.

"I don't want the goddamned stereo, idiot."

He reached forward and smacked me on the side of the head. The motion was so fast I had no time to react.

It hurt. I yelped like a puppy.

He laughed.

"I didn't come for this stuff. Is that what you think?"

It passed through my mind I was standing in front of a serial killer. I prayed my wife had managed the call to the police, picked up the scooter and drew it over my shoulder like a baseball bat. My aim was never very good, but I remembered to keep my eye on the ball, that being his head. I hit him as hard as I could. At the very minimum, the pain would disable him. At best, I'd damage his brain to the point his senses would no longer allow him to motate, and commit his heinous evil.

Somehow though, as must always happen when violence is brought to bear in fear against the infinite, when I swung the Razor missed its mark completely, and he appeared two feet to the right of where I had aimed.

"Be cool, man. Chill out," he said. Adrenaline turned my blood to lightning.

Then he said, "You can swing all you want. You know you can't hit me. So think a minute. Use that big brain of yours. Take a break. Cool it."

The words, "cool it," were still running through my mind when he added, "Put down the toy, Joe-babe."

My hands relaxed as if I'd asked them too, but I hadn't.

The difference between dreams and your real life is that when you are dreaming, you don't know you are. But you always know when you're awake in your real life.

"What did you call me?" I asked him in the dream I knew I was having.

"This is a lot of good stuff," he said, ignoring me. "A whole lot. You buying for the whole city?"

"My family," I said.

"How are they?" he asked as if he knew them. "How are the girls? They still doing okay in school?"

"Good," I said. "How do you know my kids?"

He reached forward as if he was going to put his hand on my shoulder but I pulled back without thinking.

"Okay," he said, holding out a palm. "It's cool. I'm not here for them, anyway. I'm here for you."

"Me?" I said, wondering if I hadn't died. Was my guardian angel Bobby Darin?

"You can probably figure out how this works," he said. Then he asked me if I minded if he sat. I told him it was okay and looked down onto him while he dropped onto the sofa.

"You've seen 'A Christmas Carol', what, two hundred times?" he said.

"And you're the ghost of Christmas wop, I suppose," I snapped.

"The last guy who called me that wound up in Bellevue with an arm missing," he said.

"Came to give me a Christmas whacking, then?"

"Aww, cut the crap. You know why I'm here,"

"Sure," I said, getting impatient. "You're going to show me shadows of things that only happen in pizzarias."

"This is going nowhere," he said. He got up, and stepping gingerly over a pile of packages, turned once and said, "It's too bad. There only ever was one ghost, you know. I'll see you later, Joe-babe."

Maybe it was the twinkle in his eye, the way he looked when he knew something you weren't ready to hear. The way he'd sounded like he'd just said he was proud of me. The way he called me what his best friends called him.

I wasn't expecting him as a young man. I'd never known him that way.

"Wait," I said, guts melting. "Are you okay? Please..."

"Don't I look good?" he said.

"Great," I managed.

"You too, kiddo," he said. "I just wanted to tell you one thing. You know how it is? You get to come back once, just to let people know what's going on. I decided this was a good time for you. You always liked Christmas Eve."

"Yeah," I said, my throat tightening.

"You need to cut it out," he said. "This," he pointed to the gifts. "They don't need a frigging pile. But you know that, right?"

I nodded. I did my best. I'd be strong. This was not coming out.

"Do you realize how blessed you are? Open your eyes. You would be just as blessed if you didn't have two cents to your name."

He stepped toward me and put his hands on my shoulders the way he did when I was a kid. This time I didn't back away.

He said, "You think you're so smart. You gotta live your life with these people." He tapped my chest, then looked around at the gifts.

"Inside. You can't get any of that shit in here. Cabish?"

I nodded, because I couldn't speak anymore.

Then he kissed me on the cheek and started away, stepping over the clots of wrapped gifts on the floor. As he went he told me, "You remember I used to write? Wrote that play in college?"

Somehow I told him I did. He opened the front door like a normal person, and paused for a moment.

He said, "You're not so bad yourself," then smiled and went out into the night.

I tried to say, "thanks," but couldn't. It probably didn't matter.

I had to close the door behind him. There was no one outside when I did.

When I turned, my wife had come down the stairs.

"Who the hell was that at this hour?" she said, standing in her nightgown. Her face contorted to alarm when she saw me. "Oh my god. Are you okay? What happened?"

I said the only thing I could think to ask.

"Are we awake?"

She said, "Of course," and wiped a finger against my cheek.

"When was the last time I said I love you?"

"Oh, I don't know," she said, then added, "Come in the kitchen and let me get a tissue. Who the hell would come over at this hour on Christmas Eve?"

You get to be a certain age and you stop believing in things. You think the world has been fooling you and you've grown out of all the myths.

Then things turn. Then you realize how wrong a person can be.

I kissed my lady. I hugged her as tightly as I could.

I told her, "Santa Claus."

The Night before Christmas, and all through the house, nothing was stirring, not even my parents...

My parents still don't know I smoke, so I have to wait till they're in bed before I can go out to waft away.
They'd just come home from midnight mass, and I was watching 'A Nightmare Before Christmas' with a pre-rolled joint in my pocket, itching to get out.

I walked outside, carefully closing the door behind me, not making a sound. I sat on the wet ground, with my back against the wall, soaking up the water into me pants! i pulled the joint out of my pocket and sparked it up.

Staring up into the boundless stars, I let the cool breeze wash over my skin. The weed was already working on my brain, I could feel every hair on every inch of my body alert to the breeze. The moon, a clear semi-circle, floating through a clear inky curtain, millions of indistinct pricks of light, rigid behind wisps of cloud.. a constant against the ever changing faces of the clouds. I gazed up into the untold space of the galaxy, wishing I was out there with Ford Prefect and Zaphod Beeblebrox, walking the surface of other worlds and gazing into the faces of distant stars..

I felt the roach burn under my fingers. Reaching down I stubbed it out on the cold damp stone. Standing up and reaching for the doorhandle, I gazed up one last time, for one last look. One last wish.

Happy Christmas, I wished the stars, and walked back into the house. They twinkled on regardless.

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