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Monday, February 28, 2011

A Socialist Insurance Thing

So I was really lucky that through my employer I had long term disability insurance, which was automatic.  I did not have short term disability and paid the price for that.  But long term disability is an interesting thing.  I am now a socialist.  My income is set at a flat rate until age 65.  If I somehow manage to make money on my own, I must reimburse the insurance company for my income.
I've got no problem with this arrangement.  I know the expectation is that given a flat income and all the painkillers a person could want they would become lazy- I actually spend most of my time every day trying to figure out how to contribute something in the condition I'm in.  The only problem is that now, if any money is involved, for it to be worth doing the bar is set very high.  It's not so much that the money has to be returned, but the fact that if you make money they may take your long-term disability away.  This is a precarious place to be when your health is iffy.

I do qualify for and do receive Federal disability money also.  My disability check from the feds goes right back to the insurance company-it's income.  The long-term insurance company handled everything with the feds, did the paperwork, made the calls-it was in their best interest to do so.  Again, no problem-though I wonder if the American taxpayer might have a problem with this.

(important part) Here's the thing I did not expect- my children also qualify for disability benefits from the Feds, and my long-term disability insurance company is, and has been, taking all of that money too.  They call it "reimbursement of income."  Now, I don't receive extra money from the long-term folks for having kids.  The amount of money they give me is calculated on my last year's salary.  If I were single or childless, there'd be no money for them. We were required to apply for these benefits.

Clearly this money was intended for the children of the disabled, and I'm sure that's where congress and most taxpayers think it goes.  I shot off a letter to my local dude, but this only resulted in a complete review of my SSDI situation.  There are a few folks on the web making noise about this, but not many.  The insurance companies are standing firm on this one.

Sunday, February 27, 2011

Yup, I got ahold of the new Rock Band 3 Midi Guitar

Much needed change of topic!

OK, so I have a lot of time on my hands.  I've been riding the rock band/guitar hero thing since the first versions, and recently my wife scored me the new Mustang controller and Rock Band 3.   She was able to get the controller for regular retail price at Walmart online, the day it hit.  We got Rock Band 3 and the keyboard at midnight on launch day. OK, I'm a fan.

See, around here all four of us play this together, often playing with our other relatives on the internet or even throwing LAN parties.  This counts as "family game night", and it's a lot of fun.  (Especially with the Rock Band 2 fog machine/light show which is NOT compatible with Rock Band 3.  Grrrrrr.)

My virtual player "Rod Standing" and his band "Gynamite" currently have 350 million worldwide fans!  I just got out of Betty Ford, and I'm writing a book about my celebrity sex addiction. (lol)


Now this guitar thing.  With the original 5 button controller this was definitely a game, though it's obvious the dudes working out the fingerings took time to make things somewhat authentic.  The fingerings are all pretty rational, you are just always on the same 5 fret playspace.

With the new guitar things are much different.  This is a full-on guitar MIDI controller with rubber buttons providing frets up to the 17th, on a Mustang scaled instrument.  And, it's a full MIDI controller (as is the new keyboard controller.)  There isn't any documentation but I plugged it into my Roland GS and it transmits on the Roland standard, that is- each string is a different MIDI channel.  The four game control buttons function as patch up/down buttons and octave transpose.

So how's it play?  Great!  Sort of.  Nah, not really.  Here are some upsides/downsides:


  • Well it's real"ish".  
  • It's definitely possible to move from the controller to a real guitar once you've played things down in "expert."
  • It's fun.
  • I placed at like #9 globally on "Hey Man, Nice Shot" (bass) by Filter in expert.  Good for convincing kids that you are a badass. (the song rocks, but it's one string y'all)
  • Good for staying hip, because without Rock Band I wouldn't have known who the hell Filter was.  It's cool to stay up with the younger crowd (lol)- I actually found out that I like Queens of the Stone Age, Muse and many others.
  • With guidance this could be a really, really effective tool for guitar education.
  • You can plug it into a synth.
  • True for all versions of this technology:  if you come across a song you really, really like- they've nicely given you access to all the original "soloed" performances in the "practice room."  To make a long story short I now have full, and very real Rush accompaniment in Sonar when I want to jam out "Freewill" or "YYZ."  I love hearing the naked tracks from people like Geddy Lee, or the amazing guitar tones of Pete Townsend.  You name it, you can now solo all of the performances.  Playing with the five button (traditional) controller, you get a good handle on rhythm, and you can chew into complex solo phrasings with a lot of detail.  
  • They also recently released a MIDI interface for Rock Band, which they claim allows the use of Roland-ish guitar controllers and MIDI drum kits.  Walmart accidentally sent me the PS3 version so I can't report on how this all works--my Roland equipped axe is ready to test.  Too bad the inner plastic rings on the $60 Rock Band 3 DVD cracked,  too bad my last working XBox 360 red-ringed.  (Have 2 other busted ones.  They get a work out around here.)  So, when I have a desire to throw more money at my XBox, I'll let y'all know how using real world instruments works out.
Less Than Positives
  • OK, so we have a strange, short scale, rubber guitar.  Position markers would have been cool.  I added them with a Sharpie.  My fingers turned black (lol.)  I did discover that with the power of the force you can, indeed, lunge from the first fret to the 15th in the space of a sixteenth note without taking your eyes from the TV.  You just gotta believe.  
  • It's "real" all right, which means that this game started reminding me of being in a bar band, and I was wondering when I'd get paid.  You actually do have to learn the songs and practice them to pull them off in expert mode.  Is this fun?  I'm not really sure. Sometimes. I didn't really want to spend any of my life learning "The Beautiful People" by Marilyn Manson--even though it only took 30 seconds.  On the other hand, going for the "hail mary" and playing the bass to "Roundabout" in expert is about as fun as you can imagine.  I have no intention of ever trying to nail down the Dio "Moldy Diver" solo on this rubber guitar, I do have a little bit of a life!
  • Solos.  Sorry, this just flat out sucks.  There is no string bending with rubber buttons.  I've found that when a string is bent in a solo they either notate (and make you fret) the note at pitch (2 frets higher) which wreaks havoc with my ear and with the fingering- or they notate it in place and ignore the bend.  Neither way works for me at all.  The solo to "I Love Rock and Roll" shouldn't really trip you up with the fingering.  Bass, though, works GREAT, and I wish this thing had four strings.  I try to imagine I'm playing a tic tac.
  • Precision.  Wow.  I thought I had taken some anal guitar courses in my time.  This thing will track, but if you've developed any bad habits at all-- a finger dragging a string, or a less than pristine note in a chord voicing, you're screwed.  I crawled through all of the tutorials and they were laughably easy with a guitar in your hand, and an exercise in patience with the controller.
  • The lessons.  There is a little tutorial that claims to teach you how to play the guitar.  To satisfy the tutorial you get as far as walking bass and modal scales, all without any teaching.  They're just fingerings.  An experienced player will look at a run and say "OK, B dorian" but a kid won't.  My son was ultra excited about this thing, then looked at it in disbelief, then went back to singing.  
To sum up, I think these games are a lot of fun- and they can really get kids into music.  To make this thing work as a learning platform tho, the lesson material and the technology need some more work.  

If I ever get my XBox back, my XBox live tag is "Uh HowHowHow" (lol.)  Maybe I'll see y'all online.


Friday, February 25, 2011

A Tale From the Dark Side

2/25/11   That's going to be a very important date for me.

Here's what happened.  I had a perfectly fine morning (meaning the usual nasty pain from my legs and muppet spasms.) I was really, really happy. I was about to plug a guitar in.  I've got my little Line 6 thing right here.

Out of the corner of my eye I caught the makeovers on the Today show.

I cheered "Yay! The MS lady is going to get a makeover!"
The woman's son burst into tears, obviously torn by his mother's suffering.

That's the last thing I remember for a bit.  I cried, I yelled, I spasmed - I shuffled around the house.  Leigh finally got me to lay down and medicated me.

I was absolutely despondent over the pain I was causing to everyone around me.  The toll this thing has taken on my wife and kids fills me with a guilt and anger that I can't describe.

And I also saw that this beautiful woman was some years older than me, in the same damn wheelchair, with much more advanced symptoms.  I saw a picture of my future.  I got very, very angry.  On seeing this woman and her family I became immediately suicidal.  Thank chance that Leigh was here.

I lay on my hospital bed trying to get over the episode, because that's what it was,  and I told my wife "This is obviously the work of an angry and vengeful God."

Moments later both eyes burst out in searing, burning pain and began seeping.  I could not open them, and apparently when they were open, I didn't think they were.  I told Leigh that my eyes had gone dry, so she scrambled around to find me drops.  Then I remembered my list of progressive symptoms.  That's right, amazed reader, I just went blind then and there.

This kind of shit happens to me all the time.  I swear someone has a voodoo doll.

I remember the docs saying that it might be coming, and I remember that my optic nerve already has damage, and I remember that severe stress is very, very bad for me.

But I was stunned.  I was distraught.  I was fucking pissed off!  My eyes now?  Really?  Fuck this!  There is an evil force lurking deep in me.  It came out when the docs tried to intubate me without painkiller, it came out when the wheelchair man scammed me, and it's out now.

I sat, and stewed, and waited for my sight to come back, which it has to about 50%.  I told Leighanne to check the box that says "blind" on our taxes.  I then powered myself out of bed with anger, got myself dressed in anger, came down thte stairs, did some karate moves, did some air guitaring, tended to my plants, and sat down to write.

I'm pissed, but I'm up and about and I can see.  And I have a new philosophy.  This place is a trial, it's a gauntlet- set up by a loving, but angry and vengeful god.  Maybe someday he'll give us a pat on the back for our spunk, our power to resist the horrible things he does to us here.   But I know how to play the part of the pissed off  rebel very well, and I'm letting that beast out of the cage to get me through this.  I now think that it's our job to love each other, help each other and to party in the face of the horror that comes our way.

The good news is that thanks to a wonderful therapist I am now fully aware of my delusions, foibles, and personality disorders.  I now choose to fully embrace them.  I like my delusions.  If I can walk, and I can see I will power myself with them.

Anyway I feel great, and sorry for dragging this into strange places.  I'm also somewhat heavily medicated. :-) Leighanne looks a little freaked out about me walking around the house and stuff.  Probably lots more to come.  What a morning!

lol, apparently I have a Doctor's appointment at 1:30.  Imagine that.

5:00pm  Doc is most unhappy and says I am banned from watching the news.  I'm very, very medicated so I'll check back tomorrow...

Possibly the worst exacerbation I have ever experienced continues.  Yup, I'm still pretty mad about losing my sight yesterday.  Incidentally, I already had the 1:30pm docs appointment to fill out disability forms.

Bottom line:  yup, losing sight like that happens.  Complete breakdowns like that happen.  That's just the way it's going to be.

Anyway, ouch.  What a day, evening, morning-- I guess I could curse it by saying "I wonder what'll happen today?"

Thursday, February 24, 2011

Karl's current state

It occurred to me that my pals aren't psychic, so here's my current state- I don't want anyone to freak when I show up for a lunch invite:

I am wheelchair bound.  Fully and permanently.  I can shuffle short distances, but it's a risk every time.  The will be another blog post about the adventures of powered wheel chairs.  What a scam. -- my arms and hands don't work well either, as I discovered stranded once in a manual chair in a Target parking lot.
Spasming.  Full body, full strength, violent  ("Wile E. Coyote and the earthquake pills".)
Fatigue.  MS fatigue attacks are really something else.  I'm at the point now where I'm nearly narcoleptic.  If I'm going down, I'm going down.  I've told my family that if they find me laying on the floor (they have), just leave me there-I'll eventually get up.  I go through periods of "Rip Van Winkle" time also, sleeping for 20hrs a day for weeks.  I'm just coming out of another one of those.
Severe cognitive issues.
Vision issues.
The left side of my face is sliding. (Was thinking of wearing an eye patch, but I'd look way, way too sexy.)
Severe sleep disturbance.  (Went for a sleep study.  After what felt like the best night's sleep I'd had in a long while the doc said "Wow, rough night, huh?"  Apparently I never, ever get into the lower sleep stages and there's nothing they can do about it.)
Crazy.  I recently took the MMPI2, and was very, very careful-I considered each question carefully and slowly. I broke the test.  The results came back as too extreme to be valid.  My doc says this is because my actual physical brain damage, combined with psychological issues, is creating a mighty surreal experience.  I guess the scarier part is that I functioned in the world like that for so long, lol.
Pain.  It hurts a bit.

and there's more, but that's most of the big stuff.

almost forgot-
Stink.  My prescription medication carries the side effect of a certain, very distinct odor.  If you are convinced that said medication is radioactive, contagious, or the workings of Lucifer just sit a few seats away at lunch.

Wednesday, February 23, 2011

From the Caregiver's Perspective

Karl has asked me to contribute to his blog, and I struggled to come up with some thoughts that don't necessarily seem like whining or complaining about my role as a caregiver.

In about one month it will mark the fourth anniversary of the fateful day Karl called me and said he was stuck in his hotel room unable to walk. This marked the onslaught of his continuing odyssey. I remember at the time we had some friends who were going through their own odyssey with breast cancer. And they talked about "the NEW norm". Meaning that a few months before they could never have imagined they would be handling the stresses of dealing with this magnitude of illness without batting an eyelash.

When you take a vow of marriage it usually includes the words "in sickness and health, for better or for worse." But when you're young those instances seem like a faraway risk, something you will have to consider when you're both old and gray and had a long and prosperous life together under your belts. Who ever thinks that something could strike you in the prime of life? I stand by that vow, not because it was so much this promise I had made years before, but because I love him just as much as the day I took the vow. Maybe more so now, because these obstacles we've overcome over the years have strengthened our resolve and deepened our love.

This isn't exactly what I had planned to write about though. My intent was to pose this question; Is it harder to be the person who's ill or the person who stands beside helpless watching? Everyone has had someone they love in pain at some point, a husband who watches his wife go through the pain of labor, or a parent who's child is injured and scared. You feel helpless and sick waiting for the pain to end. You do your best to comfort them until it passes. At first it's devastating and each minute that you watch your loved one in horrible pain seems like hours. Then over time, it becomes the new norm. You learn what your role is in the dance. How to help them through the moment, how to help comfort and relieve the pain. Shear terror learns to give way to a more constructive concern. But it NEVER gets any easier to watch. And at any given moment, you would do anything to switch places with them and take their pain as your own.

Monday, February 21, 2011

Coming back to the world, slowwwwwwly

There are a lot of kernels for future writing in here, but here's some free-form literary therapy:

I was a gizmo junkie.  I had a cell phone when they weighed 5 lbs.  I was, and this is true,  I paid hundreds of dollars a month for dial-up access, got ISDN, then DSL, etc.   I jumped in with the Commodore 128 and have given all my (non-existent) disposable income to the gods of technology ever since.

And in music, jeez- I've been a Cakewalk user since the green screen version 1, and still qualify for upgrades.

And the internet- I had, I published all kinds of stuff on music posts everywhere.

Then, I died.

I knew it was coming because from 1990 onwards my physical health was a medical mystery.  Strange bouts of pneumonia,  laryngitis, loss of sensation in my hands and feet.  And as far as my mental health goes- man, I went through a lot of therapists and medication and still couldn't stop being a complete asshole.

But, what do you do when you have problems, your doctors know, but nothing is working?  You keep on going.  To any old acquaintances reading my posts- yup, I was crazy, and I was a drunk.  30 years of that.  Right on my first beer at age 18 I found out that I could feel good that way and that's where I stayed.  There was a very evil and dark side to that business.  Sorry!  It's my gut instinct to hang my head in shame now and hide because I am very, very aware of how I behaved.  By and large I have found my old friends much more forgiving and welcoming than I deserve.  Thanks guys! (and someone pin a medal on my wife.  Still married.  20 years.)

But I felt it coming, and told my wife "Pretty soon all of this is going to vanish and we'll be in some big trouble.  Live as large as you can right now."   I was right.

Anyway, I don't want to go into great detail about the medical side right now.  Let's just say that the crescendo was building, and I knew it, and when things went down it was like "A Day in the Life", at the end of the song with John Lennon conducting pure chaos and cacophony.

And now I'm back.  Kind of.  This whole facebook/blogging thing makes me kind of nervous.  For the last few years I have been repelled by technology and the narcissism of the internet.  That's an easy, easy trap for me to fall into.  You can, with a very small effort, invent a false life for yourself on the web, with lots of "friends" in lots of countries-friends you've never met and don't actually know.  It's fun, but it is irrelevant, it is illusion, and it will fill your head with delusion.  (Hey! future lyric.)

When I came out of my coma, the only thing I wanted to see was my wife's face.  I grabbed onto her and pulled myself back- and for the last few years my only focus and interest has been my wife and my kids.  I really didn't want my world any bigger than that, so I hid.

When I saw what happened in Egypt, and how these sites helped those people, I decided that this web stuff could actually help me, but I can't suffocate myself with it.  Narcissism is ugly.  There's a lot of it around right now.  I don't want to do that anymore.

You realize when you are alone in an empty hospital room, late at night, recovering from something that should have by all rights ended you, that your identity on the internet is an illusion.  A facade placed over a lonely and empty life.

So I re-invented myself.  But, I'm still really, really fucking sick.  I'm back, and I'll work this because it's very therapeutic, but I will not live on here.  I don't carry a cell phone.  I still remember that text messages were damn annoying with iPaqs.  My focus is on the real world and doing real things.  

Saturday, February 19, 2011

Daily Symptom Log

<moved to clean up this blog>

Worst Case Scenario

Hey there, my name is Karl.  I've been asked to do this by nearly everyone I know.  I've been ordered to do this by my doctors.

Here's an introduction:

Physical Stuff

I suffer from Primary Progressive Multiple Sclerosis.  "Primary Progressive" means that I do not get breaks from the illness, such as in "Relapsing MS," but suffer a steady and rapid decline of function.

I also suffer from a congenital arthritic condition which led to severe spinal stenosis, with my spinal cord compressed to 1/8th.  I underwent surgery for this.


I have a hard time talking about psychological issues.  I was raised to think that this is just "whining."  The truth is, no one knows how bad I was.  I sought help for 20 years before getting a handle on the problems in my head.  I'll talk about them here. 


  • I am adopted.
  • I was adopted by a family that was completely dysfunctional.
  • I was adopted by a family that abused me physically and emotionally.
  • (edited:  this topic requires a more lengthy discussion than this short intro allows.)
The psychology of adoption is much more complicated than I ever thought.  All participants in the process face serious hurdles that they should be prepared for. 

Goals for Blogging

I'm going to chronicle as much as I can about this experience in the hope that someone else may find something useful here!