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What the Tortoise Said to Achilles

Paradox

Planetoid
Joined
Nov 13, 2009
I've never been good with the whole journaling thing. I'm just never able to follow through with it for any length of time. So, maybe putting it in a public place like this will help. Maybe not. We'll see.

As for tonight, I'm having a hell of a time writing an article about what the caregivers of newly diagnosed MS patients should expect. Guess I should have written it first and solicited it after. I've been freewriting (really more of a journaling) to come up with the tone and direction, but it just keeps taking me away from my goal of informing and into something more personal about my frustrations and emotions watching my wife deal with the disease for five years.

Oh well, maybe I'll end up posting some of it here so it won't be a total loss.
 
So I said I might post some of my MS ramblings here. Fair warning: this is long and not at all well organized or well written. It was all kind of stream of consciousness. I have gone back and taken out some of the whiny bullshit, though. After all, I'm not the one with the disease. I'm not completely sure why I'm posting it. Maybe it's because my wife is an amazing woman who deals with all this with an awe inspiring amount of grace, pride, and dignity and never let's me sing her praises.


I should be preparing for a huge party, but I’m not. In fact, the look in my wife’s eyes when I broached the subject a couple months ago told me that not only would the party not be happening, but should I move forward and make it a surprise I could expect to live the rest of my life severely hobbled and in extreme pain. I’ve learned to pay attention to her looks.

We first discussed the idea two years ago. My wife wanted to celebrate the five-year anniversary of being diagnosed with multiple sclerosis. The reason: in the old days, before the invention of drugs that can slow the progress of the disease, life expectancy for an MS sufferer could average five years. That anniversary is in two weeks and, while we won’t be having the party, we have been discussing her experiences more and more lately. What I refuse to discuss with her in great detail are my own experiences taking care of her through all of it. Besides, she already knows.

While I try to be understanding and usually succeed, I have to admit that I’ve lost it once or twice. Once, I made a frustrated and undeserved remark while we sat at an infusion center on Christmas, my wife receiving a two-hour solu-medrol drip. Instead of the anger that would be well deserved, she reached over (despite the excruciating pain it caused her to touch me) and said, “The only important thing is that you’re here with me.” I don’t know that I could handle it with such grace.

The specific symptoms of MS vary from person to person. It’s not my intention to get mired in technical details, so suffice it to say that the immune system basically attacks the brain and spinal chord, causing short-circuits in the signals between the brain and nerves. For instance, my wife once was experiencing pain in her arms from the breeze of the ceiling fan. She said it was like the nerves told the brain “breeze” but the brain heard “someone’s stabbing me with a knife.” It’s a crapshoot which part of the brain will be affected and, therefore, which part of the body will have problems.

The one symptom that all multiple sclerosis patients seem to share, though, is fatigue. Though it usually worsens as the temperature rises and later in the day, it really can be unpredictable. This is often one of the hardest things a caregiver will have to learn to accommodate. My wife and I can have an ambitious day of shopping planned only to scrap everything and return home minutes after arriving at the first store. Other times, she has the stamina to stay out all day. We’ve hosted parties where I’ve suddenly had to take over the bulk of her duties when the fatigue comes over her right in the middle of the evening. It took us a long time to learn to deal with, but we’ve gradually worked out a system of codes that allows me cover for her quite seamlessly. And we’ve learned to leave a lot of room in our schedule.

Speaking of codes, we’ve developed them for public gatherings as well. If we’re at a dinner party or family function, we have code words (for when we’re near each other) and gestures (for across the room) that let me know exactly what she’s experiencing – fatigue, partial blindness, an inability to walk on one side of her body – so I can smooth our escape and get her out of the building without anyone knowing what’s happening.

Multiple sclerosis is a disease that lurks and ambushes, especially the relapsing-remitting form. My wife can go a year without a flare-up or have multiple flare-ups within the space of three months. I’ve noticed there’s always a part of me continually on guard. When I’m away from her I unconsciously check my phone just in case. I never know when I’ll receive a call telling me she’s lying on the floor and can’t move.

One early morning my wife was up before me and doing crunches in the living room. Suddenly, the entire right side of her body seized and she could barely move it. I’m a heavy sleeper and when she called out for me I didn’t hear. She managed over the course of twenty minutes to find a way to roll over and drag herself into the bedroom. I finally woke up and lifted her into bed. It was the start of a flare-up.

I remember returning home from work during the first semester of my wife’s grad school. It was her first time acting as facilitator of her seminar and she’d put a lot of work into it. As I entered the house, I could hear crying in the office. She should have left for school long before. I walked into the office. She looked up at me with wet cheeks, her fingers splayed unnaturally in front of her. “I can’t type,” she said. She had been working on the last handouts for two hours and barely typed three sentences. If you live with someone with this disease, you never know what you’ll be called on to do. I became a very fast typist that day.

It infects every part of our lives. When touring houses to buy the primary consideration was where to put handicapped ramps in the event we need them, whether the house was easy to maneuver a wheelchair in, and where to put handrails. It hurts to have to make these considerations for a person who is only thirty-one and has always been physically active. The chances that she will eventually need the wheelchair are very high. And most likely long before she is elderly. Whenever we enter a room, I quickly scan for obstructions just in case she has problems walking. Around the house, everything is arranged for ease of movement during an attack.

The worst flare-up she ever had combined most of her usual symptoms (tingling, fatigue, loss of motor function on the right side of her body, spasticity) and added a new one: excruciating pain whenever most anything touched her. Even the feel of the sheets against her skin caused her to cry out. As a caregiver, the best tool I have is touch. As she lay in bed shaking with sobs, moaning in pain, sometimes even screaming when the air breezed her skin just so, for hours on end, my heart ached to know I couldn’t comfort her. I wanted to walk out of the room and cry knowing my wife was lying next to me and I couldn’t reach over and hold her.

Lately, the cognitive problems have started. She sometimes trails off in the middle of a sentence and begins a new one and is forgetting words more and more. When we met with the neurologist a few weeks ago, she complained of seeing people at work and knowing she was supposed to recognize them, but was drawing complete blanks. She was given a few memory tests and didn’t perform very well. I know long-term memory loss is rare in MS patients, but I can’t help wondering from time to time lately whether one day she’ll forget my name.
 
I really hate people sometimes.

Driving home from the store early this morning. I open the garage door and pull in. Puppy runs out excitedly and heads next door where her bff lives. Then, she spots a woman walking down the street. She runs up to the woman, tail wagging and happy.

Woman: Oh no, please don't come near me.
Me (chasing after the puppy): Don't worry, she won't hurt you.
Woman (as I grab and pull puppy back toward house): I'll kick you, you fucking dog.
Me (trying to keep cool): I'm really sorry about this. She must've got her wires crossed and thought you were a good person.
Woman (under her breath as I walk away with puppy in tow): Fucking asshole.

I've been working with her on retrieval quite a bit recently and on waiting patiently on the doorstep until the garage door is closed. Puppies have limited attention spans, however, and there will be setbacks. Thank God the rest of my neighbors are dog people.

People who have such a hard time with animals are always suspect to me.
 
I am of the same opinion. I have very rarely met people who hated animals--not feared them, but hated them--who I felt were all that trustworthy. I also tend to trust people who animals trust easily.
 
When replying in an historical rp, I'll normally play appropriate period music. I have two historicals going right now. The one set in 1953 is alright cause I love that era's music and have a lot of it. The one set in the 1920's though? Not so much. Maybe I'll toss the period jazz and go for some scratchy old blues.

Same problem I had when I used to run Cthulhu.
 
I had an amazing burst of creativity all of a sudden and actually made my deadline!
AND made the word count on the first edit!

I think it's time to open that new bottle of Maker's Mark...
 
My wife and I had a discussion last night and she dragged out of me my feelings regarding her cognitive problems.

I just opened my lunch box and there was a real nice love note from her in there. What a sweetheart! Guess that means I owe her a date?
 
darkangel76 said:
Awww.... reading this made me smile. :)

Yeah, she's a good woman. I definitely got the better end of the deal in this relationship. Don't get me wrong, she did well, but I did even better!

The note was nice. Turned a shitty day into a great one and made me remember to savor what we have now, which is where my mind should have been all along.
 
Paradox said:
darkangel76 said:
Awww.... reading this made me smile. :)

Yeah, she's a good woman. I definitely got the better end of the deal in this relationship. Don't get me wrong, she did well, but I did even better!

The note was nice. Turned a shitty day into a great one and made me remember to savor what we have now, which is where my mind should have been all along.

Sounds like a definite keeper to me. I love how spouses can surprise you with such wonderful things at just that right moment like that. It shows you how in tune they truly can be and it definitely puts things into perspective. :)
 
It's kind of interesting to me how inspiration works sometimes. A few months ago, I started a roleplay with someone and came up with a name for a fictitious small town in the mountains. It wasn't based on any name I'd ever heard, or so I thought. This weekend I was invited to go camping to a place I'd never been. The name of the place was nearly identical in every respect to the fictional place I'd created. When I got there, it even looked like the place I'd been writing about.

Had I heard the name before and just didn't realize it? Seen it on a map? Had someone described it years before and I'd forgotten? Or is it all just coincidence?
 
I've often wondered why seemingly unrelated people in society tend to cycle their activity levels together. For instance, people will all rush to the grocery store at the same time. At work, there will suddenly be an influx of customers at the exact same time, when the could have been only one customer the entire rest of the day. Or the phone could have been quiet for hours, but suddenly three lines are ringing at once.

Of course, many of these instances can be explained logically. A rush of people at lunch time makes sense: everyone's using that hour off to get personal things done. July and August can be quiet because many people take vacations at that time. It's the other times that are harder to explain. Why the rush at 9:45 am one day but not the next?

Roleplaying runs the same way. Because many people on rp sites are in school, lulls can be expected at the beginning of semesters, during finals, etc. I'm hard pressed, however, to explain the ebb and flow of replies at other times, when there's no apparent connective events. It's only frustrating in that my energy cycle tends to run counter to everyone else's. This usually leads me to take on more rp's to make up for the lack of responses. Then, when the responses start to flow again I'm left incredibly overwhelmed. Lately, I've set a hard limit on the number I'll do at one time (unfortunately too few for my liking, but something I can handle). I won't be overwhelmed when the responses start coming faster again, but it sucks in the interim.

I still wonder what the mechanism is that governs this phenomenon...
 
I'm feeling much older than I am the last two days. Last night there was a football game at the high school near my house. After, there was a huge party down the street from me. Cars parked up and down the street, teenagers making lots of noise as they walked to and from the party, people loitering in my fucking driveway. I live on an extremely quiet street, so this was out of the ordinary. I found myself getting irritated in a way I never have before. I felt almost like I should take one of my wife's canes and stand on the porch waving it at the high schoolers and cursing.

The feeling came back today while I walked the lawn picking up empty beer cans and trash.

My wife says I should go with it and just embrace my inner old man. Maybe she's right.
 
Honestly, I <3 you for this recent post. Why? Because I get the same way sometimes. This past winter, about every other night, some kid in a car would drop of his girlfriend or whatever and leave the car on and running. The music was blasting at levels that I swear should destroy eardrums and it didn't help that he had the bass jacked up either. The worst part was that he'd do this at around 1am and the car would stand idle like that... thumping... for nearly an hour! AN HOUR?!?! @_@ What's hilarious though, is my hubs, who is SIX YEARS OLDER than me just laughed at me for getting annoyed. And I'm a quiet one and seriously contemplated going downstairs, opening the door and throwing something at them to make them turn the shit down. lolololol. Hooray for agitated/irritated old-person behavior! XD
 
darkangel76 said:
Honestly, I <3 you for this recent post. Why? Because I get the same way sometimes. This past winter, about every other night, some kid in a car would drop of his girlfriend or whatever and leave the car on and running. The music was blasting at levels that I swear should destroy eardrums and it didn't help that he had the bass jacked up either. The worst part was that he'd do this at around 1am and the car would stand idle like that... thumping... for nearly an hour! AN HOUR?!?! @_@ What's hilarious though, is my hubs, who is SIX YEARS OLDER than me just laughed at me for getting annoyed. And I'm a quiet one and seriously contemplated going downstairs, opening the door and throwing something at them to make them turn the shit down. lolololol. Hooray for agitated/irritated old-person behavior! XD

Yep. My house was built in the early 60's and still has old school aluminum windows, so they were rattling all night.

There is a part of me that embraces my old man side, though. My wife and I have discussed the dream of, in our retirement years, becoming "that" house, where all the neighborhood kids dare each other to go ring the doorbell. Since we live on a corner lot, the kids already try to cut across our lawn, so the dream may not have to wait for retirement.
 
Paradox said:
darkangel76 said:
Honestly, I <3 you for this recent post. Why? Because I get the same way sometimes. This past winter, about every other night, some kid in a car would drop of his girlfriend or whatever and leave the car on and running. The music was blasting at levels that I swear should destroy eardrums and it didn't help that he had the bass jacked up either. The worst part was that he'd do this at around 1am and the car would stand idle like that... thumping... for nearly an hour! AN HOUR?!?! @_@ What's hilarious though, is my hubs, who is SIX YEARS OLDER than me just laughed at me for getting annoyed. And I'm a quiet one and seriously contemplated going downstairs, opening the door and throwing something at them to make them turn the shit down. lolololol. Hooray for agitated/irritated old-person behavior! XD

Yep. My house was built in the early 60's and still has old school aluminum windows, so they were rattling all night.

There is a part of me that embraces my old man side, though. My wife and I have discussed the dream of, in our retirement years, becoming "that" house, where all the neighborhood kids dare each other to go ring the doorbell. Since we live on a corner lot, the kids already try to cut across our lawn, so the dream may not have to wait for retirement.
Oh geez! No wonder you were as annoyed as you were! If I'd had that coupled with the noise you'd described, I'd have been livid. I know I would've. XD

LOL! Love it. Hubs and I already give 'death glares' to the boys up the road who ride their bikes all over our lawn. Drives us nuts that they do that and even more so b/c their parents watch them do it and never say anything. *facepalm* And the bikes these kids ride aren't your typical 2-wheelers. No. They are those motorized nonsensical vehicles with four very wide wheels that leave imprints in our lawn as the 'drive' over it! UGH! Do they find it cute? Ummm... no, it isn't. It's after this experience that I vow to never let my kids ride one of those things. Ever. And these kids are young too. Often times I wait for one of them to drive the thing into the road and get hit by a car. I swear, one of these days that will indeed happen. So sad.
 
Yeah, we have some kids on our block who do that with their razor scooters. I think everyone in the neighborhood has fought with the parents at one time or another. Thankfully, their house went up for sale a couple weeks ago. Here's hoping it gets sold as quickly as possible!

I'm of the solid belief that young kids shouldn't use motorized versions of anything that has a pedal version. Get out of the house and exercise! Wear yourself out! Mom and Dad will thank you for it!
 
Paradox said:
Yeah, we have some kids on our block who do that with their razor scooters. I think everyone in the neighborhood has fought with the parents at one time or another. Thankfully, their house went up for sale a couple weeks ago. Here's hoping it gets sold as quickly as possible!

I'm of the solid belief that young kids shouldn't use motorized versions of anything that has a pedal version. Get out of the house and exercise! Wear yourself out! Mom and Dad will thank you for it!

Here's to that indeed! I'll keep my fingers crossed for you.

EXACTLY! THANK YOU! Kids nowadays definitely need to get out and play and exercise. The naps they get as a result are WONDERFUL! Not only does it give me some free time, but it makes them much more bearable when they've gotten the rest they need on top of the fun. Plus, I love how they laugh when they have fun like that. How could you not? And where's the fun in teaching your kid how to use one of those things if it's motorized? Ah well....... At least I know I won't be one of 'those' parents.
 
darkangel76 said:
Paradox said:
Yeah, we have some kids on our block who do that with their razor scooters. I think everyone in the neighborhood has fought with the parents at one time or another. Thankfully, their house went up for sale a couple weeks ago. Here's hoping it gets sold as quickly as possible!

I'm of the solid belief that young kids shouldn't use motorized versions of anything that has a pedal version. Get out of the house and exercise! Wear yourself out! Mom and Dad will thank you for it!

Here's to that indeed! I'll keep my fingers crossed for you.

EXACTLY! THANK YOU! Kids nowadays definitely need to get out and play and exercise. The naps they get as a result are WONDERFUL! Not only does it give me some free time, but it makes them much more bearable when they've gotten the rest they need on top of the fun. Plus, I love how they laugh when they have fun like that. How could you not? And where's the fun in teaching your kid how to use one of those things if it's motorized? Ah well....... At least I know I won't be one of 'those' parents.

Good! One parent down, millions to go...
 
Paradox said:
darkangel76 said:
Paradox said:
Yeah, we have some kids on our block who do that with their razor scooters. I think everyone in the neighborhood has fought with the parents at one time or another. Thankfully, their house went up for sale a couple weeks ago. Here's hoping it gets sold as quickly as possible!

I'm of the solid belief that young kids shouldn't use motorized versions of anything that has a pedal version. Get out of the house and exercise! Wear yourself out! Mom and Dad will thank you for it!

Here's to that indeed! I'll keep my fingers crossed for you.

EXACTLY! THANK YOU! Kids nowadays definitely need to get out and play and exercise. The naps they get as a result are WONDERFUL! Not only does it give me some free time, but it makes them much more bearable when they've gotten the rest they need on top of the fun. Plus, I love how they laugh when they have fun like that. How could you not? And where's the fun in teaching your kid how to use one of those things if it's motorized? Ah well....... At least I know I won't be one of 'those' parents.

Good! One parent down, millions to go...

Oh I know! lolol! Let's start a campaign!!!! XD
 
Anyone who's stuck with a rp with me for any length of time knows I put a great deal of effort into exploring the internal lives of my characters. I love character-driven plots above all, so it's only natural. Therefore, whenever an extraordinarily good one ends, either through the natural conclusion of the story or via abortion, there is a sort of mourning on my part. I never reuse characters, so for all intents and purposes that one is dead.

I hated Charlie when I first created him. Not only did I dislike the fact that he was a selfish bastard, I despised his weakness. He wouldn't face his responsibilities the way I thought he should. He wouldn't own up to the person he hurt most, the one who depended on him more than any other. When she sought him out and confronted him, he chose silence. I screamed at the screen for him to just open his mouth and apologize, but couldn't find a way to type it out.

Then a switch was thrown inside and he began to speak in other small ways, and I finally started to understand him. Charlie had allowed every small slight in his life to push him down and hold him back until he finally had withdrawn into a hermit-like existence. I finally started to understand that he was trying, in his own way, to live up to his responsibilities. No one had taught him to do it right. He was making use of the only skills he had, muddling through something with no guidance or example. I started to feel the immense pressure he'd placed on himself, the guilt he kept hidden from everyone.

I guess I learned something about abandonment and the people I'd always judged in my own life. I guess they were doing their best, too.
 
To everyone I'm planning with right now: I've been sick for a few days now. Therefore, replies have slowed. Don't worry, I'll eventually get to everyone as I improve.
 
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