Monday, December 22, 2008

May all your Christmas' be bright...

So it is that time of year, get out your wool slippers, throw another log on the fire and hunker down for a long winters nap. Yeah it's really cold up here in the great north east, and I'm trying to figure out why I subject myself to this. I hate the cold weather. Hate it! However with this MS thing hanging around the heat has become a bit of a kick in the pants as well. Figures.

Anyway, I hope that everyone is staying warm and enjoying the holiday season. We here at "Did You Montel Willams has that?" ("We here..." I like to to make it seem like my blog is actually a fortune 500 company, and I have a team of advisors and assitants that attend to the blog and it's needs. People running around like crazy yelling things like "Save, save, make sure you save that post!" or "Mr. Faranda this is just came to my attention...."at which point I push everything off my desk in disgust. Nothing like this ever happens but, perception is everything.) would like to wish you a very Merry of whatever it is your celebrating, and if you aren't celebrating then disregard completly. I had hoped to get this out before the holiday but it was a crazy time hardly appropriate for this bald guy to disregard his real family for his new cyber one.

But allow me to take the time now to say that these few months since I have been writing have been great. Thanks to everyone who reads and to those of you leaving comments. It means a lot to me to hear your thoughts. Also, and probably more importantly, to those of you who are witting your own blogs keep writing. There are some amazing things out here and
I have been real lucky to find some of them. It's nice to know that I'm not so alone in this thing. Your words are really important to me as well to many others.

Anyway, Christmas to me is about wishes and dreams, and while it is true that everybody knows that your first wish should be for more wishes, and that trying to explain your dreams in real time generally just makes you sound foolish if not insane, in the Christmas spirit I would like to try to put one of my wishes forth into the world of the waking.

Of course we should be wishing for world peace, the end to hunger, the overthrow of the American political system, but lets be honest these things aren't good for business. I don't think there is a genie, let alone a Santa Clause, we could find to make these things come true. So that then leads me to the obvious: that this damn MS thing didn't exist. That is my one true wish for me and for all of us, but then this of course is not good for business either (theirs not ours). So I move on to my next wish that I think I can get an angle on since it is self made and not really much of a wish at all. That this wasn't some nambie pambie diseased blog it's the place you come for all you musical needs.

A hip cutting edge sorta place where you come to see, listen and discuss the latest in music, but not the kinda stuff you would find on some billboard listing or on the cover of the Rolling Stone. A blog for only serious music aficionados and those looking for a new spin on your record player. You see that is really what I wish.

So here is a blog about music in our new mythical world........(look for normal posts about MS and all that stuff in the new year. Till then Happy Holidays)

Happy Holidays from all of us here at "Did you know Montel Williams doesn't listen to that..." Things have finally settled down over here at world headquarters as all of my advisers and assistants all have taken some well deserved vacation time. I will be outta here as soon as I get this last post of 2008 up and to you the loyal reader.

So here is the big pay off of the year, what you have all been waiting for: 2008's top 10 albums of the year as per Bald Ben. It was an odd year. A quiet year for the most part, I mean to say that the records that were released seemed to be on the quieter side. Which makes me wonder if the artists were feeling quieter or if those of us listening have just tuned into this quiet sound? I mean its been a tough year all around and who knows what's coming up in 2009? (besides the new Andrew Bird album, Neko Case, Great Lake Swimmers, Animal Collective, M. Ward, Grizzly Bear just to name a few). Furthermore it seems that all the "top ten lists" this year have had a lot in common, but not many that have agreed on rankings. You will notice that my number ten has topped many lists this year, while my number two really hasn't shown up anywhere. One man's trash....

So here is the criteria: the record has to have been released in 2008 (although as you will find I don't exactly follow this). Second and most importantly it has to move me enough to want to give the record the highest of compliments: to purchase it on vinyl. Yes that old school antiquated means of relaying sounds to eager listeners. A large 12" disc generally made of black plastic with circular grooves that somehow hold music. Truth be told I only own one of these on vinyl right now, but the economy is weak, I got kids, and I'm a bit too lazy to get out to a record store to find them. I mean it's the holidays, aren't people supposed to surprise me with presents and what not? I guess I should have put the list out before Christmas. Anyway, feel free to comment and tell me how much of a genius I am, or how terribly predictable.

10. TV on the Radio – Dear Science [4AD/Interscope]
This record has topped tons of lists this year. Not mine. I think this is a great album, but it’s not quiet what I was looking for at least as a topper. There was tons of hype before its release and there was even more after we all got our grubby little indie-rock fingers on it. I resisted, maybe I was just trying to be too cool for school or whatever, but I just didn’t listen to it. No matter who told me I needed to hear it I passed it by. It was in November that I actually broke down and took a listen.

The sonic guitar opening of “Halfway Home” quickly drops the Ramone’s style BaBaBa’s before the smooth vocals of Tunde Adebimpe seep into your veins and helps you realize that you’re not on “Cookie Mountain” anymore. This record is deep with layers and deserves a little more of my attention, perhaps had I taken the time it would have placed a bit higher on my list.

9. MGMT – Ocular Spectacular [Sony/Columbia]
You will find that my list has a bit of a leaning. These days find me listening to much more organic acoustic based music. Luckily for me it was a year that also leaned that way. That being said MGMT’s ablum “Ocular Spectacular” is not any of those things. This is a record drenched in drum machines, delay pedals, and studio trickery to polish these gems of indie-electro pop. The album may run the gamut of styles but at its heart it is just an ironic mess of catchy pop songs.

One of the biggest problems with this record, though, is that the opening track “Time to Pretend” is so good that it sets the stage for an album that would be almost impossible to deliver. Try they might they never quite reach that mark, but they have still put together one of the most solid debut albums to date.

8. Grouper - Dragging a Dead Deer up a Hill [Tape]

This is what ghost sound like….

7. Blitzen Trapper – Furr [Sub Pop]
I have also come to this album late. While it was only released in September I didn’t get around to hearing till after it hit a few “best of” lists that I have some respect for. This is a band that has gotten better and better each time they release an album. The obvious Dylan, Neil Young influences are still very present here, but there is a much deeper understanding of what these folk rock troubadours were/are after. Deeper still are influences of Big Star or a late 60’s early 70’s sensibility to music that I happen to really love. If for the title track alone go find this album and listen to it over a lazy afternoon with your favorite girl/guy near by. Furr is easily my song on the year.

6. Miles Benjamin Anthony Robinson – S/T [Say Hey Records]
This record hasn’t made too many lists. Perhaps it is Robinson’s unabashed take on his own struggles with drugs, depression, and his sometimes homelessness. The lyrics are dark and heavy. The music, while based in folk rock, has a frenetic edge to it that gives the listener a taste of the chaos that he sometimes must live in. Although for all the darkness, there are some hopeful moments as well. Even if it is only the fact that he has unabashedly expressed himself to us the listener. A guy has to think that that has to be good for something, right?

5. Dr. Dog – Fate [Park the Van]
I may be biased here. You see I know these guys. I have known them for a long time. I knew them before they were Dr. Dog, and I continue to be very very proud of them as they release great album after great album. I wish I could take an ounce of credit for the great albums, but I can’t. As a matter of fact I have nothing to do with their music. I do however have a lot to do with listening to their music and being in awe of a bunch of great dudes that can write great songs like I have never heard before.

Well I suppose that isn’t totally accurate. They write songs like I have heard before. Songs from the cabinets of my father’s record collection, from dusty vinyl hidden in the back of some long lost forgotten set, songs from an era that we could only hope to have been a part of. Yet in wearing there influences on their sleeve they are able to surpass and even improve upon what it is they are emulating.

Their new album “Fate” is making lots of peoples lists this year and the Dr. Dog name and their albums have been touted by the likes of Beck and Lou Reed. It seems like just a few years ago when there were only a handful of us going to shows, and now they play to thousands who have the same if not a greater sense of devotion, and it is well deserved. To the Beatlesque vocal lines of “My Friend” or the Waitsian delivery of “The Beach” these boys have tapped into something that we all have responded to since the early earliest days of recorded music, good songs.

4. Fleet Foxes – S/T [Sub Pop]
I grabbed this one very close to release date and loved it from the moment I heard it. Although truth be told lead singer Robin Pecknold vocals remind me a lot of Jim James of My Morning Jacket. There is a soaring quality, an echo that doesn’t need studio mastery to embolden it. It carries you through the top of the grain silo and out over the fields into the mountains that they are so desperately trying to let us know about. This is a credit to the record but for me was also a detriment. The similarities of voice lead me to turn off of the record for a while. Luckily the Ipod shuffle function brought me back to the record and the more I listen to it the more I tell myself to shut the hell up and listen to one of the best records you’ve heard in a long time.

3. Vampire Weekend – S/T [XL]
Easily one of the best records this year and one of the worst. Their hype burned bright even before the album was released which, as with all great flames, begins to consume itself. Yet, the album and the 13 songs you find there can hardly be contained. A bunch of white, over-privileged kids from New York producing some of the best Afro-tinged pop heard this side of “Graceland”. All the haters be damned, these are just good, catchy songs. There maybe a second album, there maybe a career in the future, but for now just enjoy these 13 perfect punchy numbers.

2. Death Vessel – Nothing is Precious Enough For Us [Sub Pop]
I am sitting here listening to this right now trying to figure out how this album makes it to #2 on my list. This record barely made a blip on anybodies radar, but I can’t stop listening to it. Essentially Death Vessel is nothing like what you would think they are. The name quickly denotes some sort of visceral grind core sound, but in all reality it is the exact opposite. A clean record of what is called neo-traditional folk music (what the hell that means is your best guess). Death Vessel is really only comprised of one member: Joel Thibodeau. Joel then adds a cast of revolving musicians to fill out the production.

Here is the rub: Please note I said Joel Thibodeau. Joel as in a boy’s name. I make mention of this so you do not have to go through the same crisis of conscious that I went through. See Joel sings in a very high falsetto voice: a very feminine sound. To further compound the mental image while he sings in this high register, his voice also has an almost pre-pubescent timbre to it.

Now I went into listening to this record (as well as their first record) not knowing this. I assumed it was a woman singing. Imagine my surprise just a few weeks ago when I found out about Mr Thibodeau. That she was in fact a he, and I’m not talking I picked up some girl in a bar only to find out she’s got an….adam’s apple. No, this is just a guy who sings real high. No illusions of femininity. This revelation led me to some serious introspection.
The preciousness of my then favorite record was suddenly lost. My mental picture had been blow to hell. There was no closing my eyes listening to this one anymore. Yet here it is at #2 on my list of 2008. Why, you ask? Well, you get over it and quickly. The songs are so so so good, The musicianship is amazing, and the voice even though it comes from a grown man, is still just as precious as it was the first time I heard her---I mean him, despite all my inner tumult.

1. Bon Iver – For Emma, Forever ago [jagjaguwar]
There has been a lot of talk about this record. Sadly lots of the talk these days is about the validity of the release date. Yes, it is true that this record was released late in 2007 independently. However it was given a much wider distribution in January of 2008 when good sir Justin Vernon signed with jagjaguwar. This is insignificant to me. While I heard some rumblings about this record when it was released in 2007 I didn’t get my hands on it till probably around February, but let me tell you that I had wished I had it before that.

I wished that I had it the day it came out, I wish that I was there when he recorded it, hell I even wish I was sitting on his molars while he was singing it. This is just a perfect little record. Very plain, very heartfelt, hits me in all the right places.

The record itself was made in only the way great or mythic records seem to come about. Ala “Exile on Main St”, Mr. Veron, exiled himself to a cabin in the mountains of Wisconsin (Wisconsin has mountains? Who knew?) a few months later a bearded Justin emerged from said wilderness with a record that will endure in my memory for a very long time. Makes a bald guy wishes he had lots of hair and a big beard and was able to go hid in the woods to find some songs. Dig this record out of whatever shop, mp3 site, or however you procure music, particularly for those of you enduring the snow filled months that are upon us, it will keep you warm in only the way heartbreak can.

Happy Holidays eveyone...thanks for indulging me this year. See you in 2009.....

Thursday, December 4, 2008

Throw my ticket out the window....

I’m not one to be over sentimental or make this blog some sort of monument to the things that simply mark my life. I have no intention to make this my diary or journal, it is just a place for a few musing or thoughts about the things that pass between my ears and stick. Things that I feel are worth mentioning. I need some sort of outlet, right? If I don’t, I get myself into trouble. Currently, I just keep reciting the Presidents of the United States from beginning to end.

Why you ask?

Well, because I can you see. That’s just how smart I am.

Honestly, it is really just a parlor trick. Anybody can memorize it, but for some reason I just keep getting the impulse to recite them. Maybe it has something to do with my hour car ride to work. A bald guy needs to fill his brain with something and I suppose it is better than spitting out the alphabet backwards, although I can do that now as well. Idle hands as they say. I figure if I could juggle while I drive then I might have an act. I could take it on the road….oh yeah, I’d already be on the road, but as per usual I am way off track here.

The reason I point out that my blog is not a place to be over sentimental or a monument is that I am about to do just that. Call me a fraud, call me a hypocrite, it’s fine I have been called it all before. I have also been called buttercup, but let’s not get into that.

The reason I write today is actually a serious matter. My Aunt passed away Monday morning due to complications of ALS, a very cruel and very swift disease that left her incapacitated for the last 6 years.

(Here’s a link if you want to know more.)

Aunt Faye garnered one other mention here on the blog back in September as I went through my IVIG treatments. One of the nurses that worked in the infusion center where I took my treatment had also taken care of my Aunt at an ALS ward of one of the hospitals that she sought treatment and had remembered her. My Aunt was only 58 years old and for the last six years she sat in a chair unable to move, her only means of communication was to blink her eyes. But far more than the end, it was the beginning and the years before the illness that made such a deep impression upon me.

My Aunt and Uncle lived about an hour and half from where I grew up. We honestly only saw them and my cousin a handful of times a year: Christmas Eve, Palm Sunday, a few other random trips to the area, and a family party that found us leaving the soot and grime of Reading PA to relax at the oasis that was my Aunt and Uncle’s in-ground pool. You see where I grew up people didn’t have in-ground pools, and only a few people had above ground pools. Most of those you didn’t want to get into. So you can understand my excitement at having free reign at what seemed to me to be a private resort.

This resort came with every amenity: more food then you could eat, more soda then I could drink, and I know this to be true because I gave it my best. Although truth be told my Aunt had a full supply of Shasta. I’m not sure who actually drinks this stuff, but for whatever reason she had a ton of it, and to top it all off a traditional water balloon fight between my Uncle and I. It generally ended with him pushing me into the pool. I was happy regardless.

Though the times may have been few they were always deeply anticipated. I looked forward to Christmas Eve like most kids not only because I knew there were a ton of presents coming my way, but upon waking I couldn’t wait to get to my Grandmother’s house because I knew that Uncle Paul and Aunt Faye would be there. My grandparents only lived two blocks away so as soon as I heard that they had arrived I cleared my throat and with my most annoying voice became the bane of my parent’s existence until they broke down and sent me up the street. Of course the lure of presents, my grandmother’s cooking, and the never ending supply of Coke a Cola never hurt, but it had generally been a few months since I had seen my Aunt and Uncle and I bet they had something to show us.

You see Aunt Faye always had a knack of finding all kinds of crazy puzzles and games to occupy us. I suppose it was her feeble attempt to keep us out of the living room shaking the colorfully wrapped boxes whining incessantly, “when are we gonna open presents? when are we gonna open presents?”.

It worked… sometimes.

I can remember her showing us those ridiculous magic eye puzzles, Games magazine, and any number of brain teaser that she could find. I was never real good at them then, but I can always remember sitting in the backroom of my grandparent’s house, with a cacophony of odor slipping from the kitchen, and my Aunt helping us solve some sort of grand riddle. Furthermore when we did rip into the presents, the multi-colored paper now laid wasted on the floor to reveal something so spectacular that even though you didn’t know it, it was exactly what you wanted, and precisely what my Mom would have never bought us because it was “too messy”.

When I was older and I began to get presents that were “age appropriate” I was a bit sad. While those sweaters were real nice, and I wore them all the time, they didn’t have the same punch as the Fisher Price Printing Press and the stained blue fingers that it produced.

When my boys were born I stopped into the hospital gift shop and found an issue of Games Magazine. It reminded me of those days, how they had passed, and it made me wish that my Aunt was able to come and visit us.

Aunt Faye was nothing but fun, and if she was there I wanted to be near by. I remember as a boy how my Dad’s cousin had asked me to be a ring bearer in her wedding. Now this was all fine and good, but I was six and being six you don’t really understand what is going on. Furthermore you don’t understand that the white tuxedo that you are dressed in is rented and needs to be taken care of.

This was a Catholic wedding and as is evident from the length of my posts Catholics are not known for their brevity. I had to sit up at the alter, in a chair that I am imagining was probably used in the Spanish inquisition due to its comfort. Never had I longed so deeply for the hard wood of the pew that my sister and cousin had the good fortune of sitting in. I suppose they expected me to behave, and I guess I did. My Uncle Sam only had to come up like three times.

Nevertheless, after we went outside and were all pelted with bird seed (Of which I ate a ton of. What? I was six and I was starving. Do you know how long that mass is?) the wedding party piled into a waiting limo that whisked them away to the reception, but I stayed behind opting instead to ride with my Aunt and Uncle in their car.

The reception was a drag to a six year old so Aunt Faye and I snuck outside and she let me tear through the grass like only a six year old can. Here’s where the problem comes in: there was a lot of “sliding into second base”. Allow me to remind you I was six, wearing a white tuxedo and I had no idea that grass could pose a problem to fabric. Again, I ask you who allows a six year old to take part in these things?

Needless to say both my dad’s cousin and my mother were pretty pissed when I came walking back into the hall drenched in sweat and a white tuxedo that looked like the swamp thing had just disrobed. I began to hear the things that a small boy hears when he has made a bad (albeit honest) mistake. Aunt Faye just smiled and whispered to me, “We’ll tell the rental company we had a problem with some guacamole.” Now, I had no idea what guacamole was at the time, but what I did know was that Aunt Faye had my back and guacamole or no guacamole it sounded like a solid excuse to me. Now, though, at 31 years old, looking back I’m not sure how the rental company would have cared whether it was guacamole or grass stains, their tux was ruined. I wonder whatever happened with that…..

When I was grown I moved to Philadelphia, much closer to my Aunt and Uncle. I began to see a bit more of them, and felt that my relationship was getting closer to the way I had always hoped it could be. However, it wasn’t long after my relocation that my Aunt started to have problems. It wasn’t my business and I would be told what I needed to when I needed to know it. I don’t remember when I found out that it was ALS, nor do I remember when I realized how serious it was, but quicker than I had ever imagines my Aunt was being taken away from me and the rest of the family.

Once Aunt Faye was in her chair but still able to speak relatively well I sat with her for an afternoon. We didn’t talk much about the disease, just about what I was doing and what I was trying to accomplish. Actually most of the time was taken up with her typing rude things about my Uncle and dad into her new voice computer. When they came back from picking up lunch she unleashed a barrage of digital epithets that were less then flattering. She had a great sense of humor (you have to to survive in my family) even when she was incapacitated in her chair. My Uncle would show her a board with the alphabet written on it and she would blink as the letter she was looking for was spoken. You would write the letters down and read what it was that she wanted to say. This was a slow process and sometimes very frustrating, but there were many instances that she made a mistake that I believe was on purpose just to confound my Uncle.

The last time I saw her was at my cousin’s house. The summer party had been moved there despite the lack of in-ground pool (a bit of an oversight that I will forgive them). As my Uncle helped one of my Aunt’s nurses load her into the van at the end of the day I walked with them. My wife was very pregnant with our boys at the time and I said to my Aunt, “I’m gonna try to come out and see you before the boys come, because God knows what’s gonna happen once these two monsters are unleashed.” I could see her smile, if only in her eyes, but it was a smile. Sadly I didn’t get out to see her, and once the boys did come time was non-existent. I kept saying to my wife that we really need to take the boys out to see my Aunt, but it never happened. For that I am sorry.

I am so sad that she has passed, but what is far more devastating is the loss of time. Which I suppose is always the true shame of death. I wish I could have talked with her. She was unable to speak when I was diagnosed with MS in 2005, and she was one of the few people I thought might have an insight to the road that I was walking down. While ALS and MS are very different diseases there are many similarities in the pathology, but more important the psychology. The things I think and feel I would imagine she went through, on some level, as well. I like to think we could have helped each other in some way. At the very least I know she could have helped me.

Although perhaps she did help me in just being as she was. We look at the people as we loved them, we look at ourselves, we hold memories and images in our minds and hearts and despite the fact that they are unable to be themselves I always imagined she was who I knew her to be. She was just unable to express it in the way that I knew her to before. Locked in they call it, and I think that it actually applies to many of us. We were locked in to the image that we had already lost; an image that had made an indelible impression upon me and one that I didn’t want to lose. Yet now there was a new version of my Aunt and I’m not sure that I was ever able to adjust to the changes.

Yet, many of the same changes are affecting me now. Not in the same way and if it all goes well they won’t be as destructive, but I remember my Aunt’s cane and then her wheelchair and neither of us aware at the time that these events would be so relevant to me today. I look at so many situations now with a deeper scrutiny an intense yearning, and I wonder what she would have said to me. Would it even have been remotely relatable?

I do look, though, to what she did do. How she was able to stay here with us for as long as she did inside of her own body. The strength she proved to us with out lifting a finger, the grace that had shown so brightly though she couldn’t breath on her own, the truth that despite what problems beset us our spirit can always be stronger.

So, go to your dad’s record cabinet (or your own, that’s my plan) pull out Bob Dylan’s Nashville Skyline, (which you undoubtedly have) once Aunt Faye told me that this was her favorite record, put the needle down and raise your glasses high. Drinks are your choice…..I think I’ll have a Shasta.

Here is to my Aunt Faye

All my deepest love, respect and thanks

Friday, November 14, 2008

The force will be with you, always

Wandering through the hallowed halls of my place of employment yesterday I noticed the wonderful people who are kind enough to supply us with Health Insurance had set up tables. It was obvious by their supply of free pens that glow iridescent when you click them and neon green change purses that were admittedly empty but open for the filling, that their warehouses had filled to the point of bursting. And instead of paying an extra storage fee, which they would have undoubtedly been charged, they showed up here to share the wealth. Then I thought maybe I am just being cynical. Maybe they had come simply for a smile, a handshake, a chuck on the shoulder just to let us know we were appreciated. I’ll bet if I asked I could have gotten a back scratch.

While the back scratch had seemed enticing, I tipped my hat and moved on, there was no reason for me to stop, the support that I had received, while not the top coverage I have ever had, was working out okay. Obviously the representatives of one of the largest health care conglomerates were there to let the good people know that all was okay. I mean in these times of economic turmoil it could lead one to question the solvency of those stead fast institutions that help us rest easy at night. I put it from my mind and set to work.

I had a busy morning. First I completed payroll, then off to a production meeting where we discussed the shows coming up in the next week (nothing of note. It’s close to Christmas. Tours start to pack it up at this point. Even the famous like to eat a turkey or hope for Santa.). I then busied myself on the arduous task of music blog updates. I have a few sites that I dig into that keeps me hip to the scenes that I was once a big part of. It helps me forget that I am over thirty and not to be trusted. Which honestly I understand, I don’t even trust myself most days.

“Dude, did you see that old bald guy hanging around? He looks like a NARC.” At this point my wife, disgusted, sticks her head in and says, “Dude,” her sarcasm biting, “you’re talking to yourself in the mirror again.”

Then of course I wander onto many of the MS blogs that I dig on. Let me just say there has been some really amazing stuff filtering though cyber space as of late. I have added a new blog over there on the right. Living life with sarcasm, kids and MS is a pretty great read. Take a look, and for that matter the rest of the blogs that I have had the good taste to include are well worth your time. Turns out over at No Empire they celebrate my wife’s birthday as well. Who knew? Although truth be told it’s not necessarily for my wife as much as they happen to share a birthday. Nevertheless, happy birthday to one and all, mine is in May. See you then.

It was about here that I got down to my real work of the day: Star Wars clips on YouTube. This can get a guy pretty hype, I mean take a look….

Then of course is the classic…

Luke was so whiney…

Anyway, while digging deep into the ‘ol YouTube archives (And I mean digging, oddly enough, there are very few bounty hunter clips. The balls on these people not to upload copyrighted Boba Fett clips. Although, I had enough to chew on with the Star Wars Holiday Special, come on, cooking with a Wookie? It’s a classic.) A co-worker came up to the cube behind me and began to rant and rave about the health insurance changes and how we have to take a survey or our rates go up.

Wait, wait, wait….She’s not talking about my health insurance. She can’t be talking about those nice people out in the lounge area that brought us all those free pens and glossy folders with tons of useless information inside. She has to be talking about another health insurance, right? She’s talking about another company. Right? Would these people be so friendly with their pens and such while they are sticking it you? Well after a few exasperated moments, a couple of, “are you serious.” A few, “are you sure?” an emphatic, “who told you that?” and a handful of “that’s gotta be illegal.” I figured I had better go get the answer myself, straight from the mouth of the good people who had pens to give out.

“Ehmmm…excuse me sir, one of my co-workers here….honestly I, ah…I think she’s a bit…well you know…soft, well she said, and please excuse me, I feel a bit funny for even asking you this, but the thing is, she said that there is some sort of survey we need to take in order for our rates to stay the same. I know it’s silly, sorry for…..”

“Yeah, but their’s no guarantee that the rates will stay the same. It’s a “risk assessment” test. It gives your employer an aggregate tally of all the employees here, and how much of a “risk” they are in. Here take this glossy folder there are bunch of changes that you should be aware of.”

I stumbled back. My world shook. Everywhere I looked it was as if people were laughing at me. Everything was spinning, the very foundation of that which I believed was crumbling around me, and I had no where to turn, just a glossy folder and an iridescent pen. In this new paradigm were cats and dogs still mortal enemies? Did Pepsi really win the Pepsi challenge? Where in fact was the beef?

Well, I suppose I am being dramatic and this isn’t entirely true. I did step back but only so I was far enough away from the dude so I didn’t jump over the table and make him wish he had different health insurance. Did the guy really just say, “how much of risk my employer's in?" Apparently he isn't aware that the multi-billion dollar company I work for doesn’t have MS. Yes, while their profits have been a bit necrotic as of late, I think they're gonna be just fine. My legs however, well the jury is still out on that one. Yeah I got your risk right here, buddy..

So it turns out if I don’t take this Risk Assessment test my rates jump $30.00 a pay period. What makes this even more insidious is that no one in the company has been made aware of this test unless you went up and asked specifically about it. Furthermore, they are pushing one of my hospitals out of their plan. Apparently it is no longer financial sound to use one of the premier hospitals in the region and the country. Allow me to quote from the literature…..

Our Insurance has an obligation to you to try and keep health care costs in check while providing you with access to high quality care. For more than 75 years, we have taken that obligation very seriously when negotiating with hospitals. We understand that we are negotiating on your behalf. After all, your premium dollars are used to pay for the services of said great hospital.

We also want you to know that for some time we have tried to negotiate reasonable rates with your hospital, but we were unsuccessful. After our termination letter was sent, the hospital responded by sending us a proposal with lower rates.

I don’t remember getting a call when they were negotiating. I would be the first to tell you that what ever premiums that might rise I would be more than happy to pay if I am able to see the doctors and go to the facilities of my choice as it was when I began the plan. Furthermore, the last sentence is infuriating. It turns out the insurance company is really just playing some sort of half assed game of chicken with the hospital. Well, I’m blinking, look at me I’m blinking, Uncle or whatever the hell you want me to say, let’s put on the breaks here before somebody gets hurt or losses an eye to optic neuritis.

Of course it really only gets worse from here: co-pays change, what facilities I can and can not get my MRIs in change, the formulary on the prescription plan is changing and my copaxone, while still covered, suddenly will cost me $100.00 more out of pocket for a total of $200.00

An aside here…..
I realize that I am bitching about something that many Americans do not have the liberty to bitch about. I am being a bit of a dilettante here. I was in fact one of those 47 million Americans without health care when I was diagnosed, and understand what a blessing it is to have some sort of coverage. However it is painfully apparent that something needs to done and done quickly in order to heal people that can be healed, and care for those that need the care. Everyday the country proves that as Bono wrote, “the rich stay healthy and the sick stay poor.” Health care is a business and we are just the cogs that feed the machine. Cures are bad for business.

Well for those of you who have been reading you know that I am very rarely at a loss for words, but this new info and the way it was so nonchalantly handed to me really took the wind out of my sails. I slunk back to my desk, feeling a bit sorry for myself. Yet the words of Yoda rang through my head, “do or do not. There is no try.” So, as if the force itself was lighting up my bald head I took a stroll back out to the tables. I formed a series of thoughtful questions and I wanted satisfaction, nay, I demanded satisfaction.

“excuse me sir, could you tell me….”

“it’s all right there in your packet.”

“Yes, but I was hoping for something a little more specific.”

“Oh right, well you can see here on the bottom of the first sheet the 800 number. They will have all the answers you need.”

“You can’t answer my question?”

“No sir. I’m sorry. We’re not qualified.”

Remember that speechless thing before….Color me dumbfounded.

Health Insurance is really the reason I work where I do, at least in the field that I do. I went to college and studied photography and film. I worked as a photographer and film maker for a few years out of college. I loved every second of it. Unfortunately being self employed does not come with health insurance. Yet I was relatively healthy, and starving for my “art” was perfectly acceptable. It actually helped. Pangs of hunger really help the creative process.

However I had to do some other work to supplement my income. I got involved with being a go-for in concert production (called a runner. Cause you’re running back and forth looking for the most inane things that nobody actually needs. That’s a different story.) and before you knew it I was offered a full time position. Now this is where many of you reading might start to say, “Bald Ben you’re a sell out”. Well, I’ll kindly tell you to shove it and shut the hell up.

I had been getting knocked on my ass by cluster headaches at that point for at least six years. (I haven’t talked much about the cluster headaches. There will be a post at some point. However I have been headache free for a year for the first time since I am 17. I am afraid of tempting the devil.) The only medication that worked cost $150.00 per shot (at the time). There were many days I was only making $150.00 for whatever work I was doing. There were more times then I care to count that I woke up had to take a shot and then go to work. Essentially to work for nothing, just the medicine I had put into my arm that morning. Sadly I knew that I would most likely need it again that day. Talk about deflating.

It was around the year 2002 that I had all but depleted my savings and knew that the headaches would soon return. So when someone offered me a steady paycheck and pretty sweet benefits I really had no choice. You see this goes back into an earlier post where I knew there was some sort of problem, bigger than the headaches, but everyone else just kept on telling me I was delusional and all I needed was to chill out. Guess I showed them. So I got involved in the world of concert production which I soon found out is a load of crap and for the most part completely against most of my moral code. Yet somehow I guess I’m half way decent at my job because I keep getting offers for other positions, but as they say beggars can’t be choosers.

Another aside:
Again I realize that I am bitching about things that many people don’t have the ability to bitch about. Everyday we hear of more and more lay offs, unemployment is insane. These are the people that should be bitching, and I bet a lot of them are, and rightfully so. So please do not think that I am not aware of just how fortunate I am. Truth be told most people would think that I have a pretty neat job, if they knew the truth they wouldn’t, but I digress. If I had my druthers I would be somewhere else, making movies, taking pictures, flexing a creative muscle from time to time, MS free. Like I said beggars can’t be choosers.

Long story short: They are changing my insurance on me. Remind me why I do this again?

Thursday, October 30, 2008

Curse? What curse?

Curse has been broken, but for those of you keeping score...I still have MS. But allow me to be the first to say that if I do get cured of MS at some point I will need the following things:

1. A dog pile

(See picture above...Like that. I'm not sure what you had in mind, but the phrase dog pile has so many connotations. And truthfully I'm not a big fan of dogs. I'm the jerk who always ends up getting bit..."oh no, go ahead and pet him. He's very friendly. Never bit anyone." CHOMP!)
2. A parade down Broad St. in Philadelphia

( I want no Mummers, again I repeat no Mummers. For those of you not familiar please take a look. Yes, these are grown men dressed up in all sorts of regalia for a very long parade on New Years day. These are the same guys who make a point of call you all sorts of horrible names on every other day of the week for what you look like. Again for the record I do not want any Mummers.)

3. I want a product endorsement deal with Subway.

(Ryan Howard, Phillies first baseman, currently has this role and I think that I can write a better poem about Cheese Steaks.)

4. I want dudes to be so moved by my victory over MS that they do this:

(they disabled the embed function)
(This guy is in South Philly. Apperently they don't grow 'em so swift down there.)

Way to go Phillies. It was a hell of a ride.

Wednesday, October 22, 2008

If they break the curse of William Penn, does that mean I am cured?

So I have a superstition (actually I have a lot, but lets discuss those that really pertains to us here and now). As I have mentioned before I live in Philadelphia. Philly is a world unto itself. Two hours from New York City, three hours from D.C., not a bad shot up to Boston, yet somehow even though we live in the shadow of so many "great" places, Philadelphia, has held true to its roots. A working class town that takes shit from no one. Sure you've got your pretension and you got your "rednecks”, every place does, but I have always felt far more comfortable in Philly than in any other city in America. Philadelphia is home.

Many of you may have visited our fair city here, seen the Liberty Bell, ate a cheese steak, ran up the art museum steps like Rocky, but you left and went back to where ever it was that you lay your head. However on your way out of town I'll bet you got a shiver. Little pins and needles up and down your spine (yeah kinda like having MS). Although I bet you just couldn't put your finger on what it was. Sure, cheese steaks, Bells, and Museums are all lodged in your collective consciousness like a vendor cart soft pretzel in your throat, but every day we here in Philadelphia wake up with that chill and know that we have not won a major sports title since 1980 when the Phillies last won the World Series. Oh we have come close. So close we could taste it, but regardless of how good the team was, we here in Philadelphia, with a collective sigh, always seem to be looking toward next season. There are a lot of reasons for this, but many serious sports folk in the Philadelphia area will blame it on one thing: The Curse of William Penn.

The short story of the curse is Philadelphia's City Hall has a large statue of William Penn atop. Until 1984 there was an ordinance that precluded anyone from building higher than Mr. Penn’s hat. Ordinance struck down, a few skyscrapers go up in center city Philadelphia, and BAM suddenly a town once rich with sports heroes is a graveyard. Coincidence? Perhaps, but allow me to point out the newest and tallest building in Philly that opened in May of this year had the foresight to include a small statue of William Penn on top. For those of you who haven't noticed the Fightin' Philadelphia Phils are in the World Series for the first time in 15 years.

Baseball is a sport filled with superstitions, far more than any other sport in my opinion, these superstitions often times trickle down to us the fan as well, particularly here in Philly. For instance: I NEVER wear team clothing on the day of a game, further more I NEVER watch the first inning. Why I couldn't tell you, this is just one of those things that has developed over many years of watching the Philadelphia Phillies.
For Example:
Wednesday night I walked out of the room for the first inning and Bam Chase Utley hits a two run homer, which set the tone and won the game for us.
However game two while I did not watch the first inning, the Phillies still lost. How is this you ask? Well, Bald Ben was not so bald that day. I wore a knit Phillies cap from morn till game time. Sorry guys, I wasn't thinking.

It is currently tied at one game a piece, and tonight the Phils bring it home to Citizens Bank Park. While Tampa Bay is a formidable opponent and has really accomplished a lot over the last year with their club, nothing has prepared them for Philadelphia and their fans. There may be 9 men on the field, but in Philadelphia there is a tenth player...the fans in the stands. I will not get into the exploits of Philadelphia Sports fans, but know it is a breed unto itself, and a force to be reckoned with.
But I am way off point here, as is usual, but this is really all just set up for what I am trying to say. Again as I mentioned in a previous post, I am by no means a jock. I was never real good at sports, I enjoyed a pick up game of whatever the boys were playing, but I was never one to go out for the team. Further more I always found it very boring to sit on a lovely weekend and drool over a bunch of dudes ramming each other...a wait...I get what I am saying. The one exception to the rule was baseball.
I grew up in Reading, PA where the Phillies have one of their minor league teams. My Pop owns his own business just a few blocks from the stadium, and we use to go there a lot, but once a year I would win tickets for a Philadelphia Phillies game.
You see, I went to Elementary School in a day where schools were improperly funded, and they would have to hold fundraisers in order to secure the necessary financial stability for the school year. I know it's hard to believe there was such a time where a child was handed a folder of useless products and then expected to walk around the neighborhood hocking their wares in return for some cheap prize that could have been bought at the dollar store. It was a different time, dollar stores were not so ubiquitous, kidnappers and pedophiles were just pulp fiction novel creations, and there were so many old people in my neighborhood that it was like shooting fish in a barrel. All I had to do was flash my pearly whites and hand them the product descriptions and viola a few cookies in my tummy and an order for 8 boxes of pecan chews later and I was on to the next house.
While we were not out roaming the country side begging for alms of the poor schools, the power structure inside of my hallowed halls brought out another classic way for us to raise some money and deflect the responsibility of actually teaching: a Read-A-Thon. This was not just any read a-thon however, it was to help cure a disease known as MS. This was actually, as a youth, my introduction to the disease that is now reeking havoc inside of my body. Odd, huh? We were handed a piece of paper, we listed all the books we read in a two week period, gathered up some sponsors to pay money for each book we read and then we got to choose from a similar list of cheap dollar store prizes. Although on this list there was one thing that actually sparked my interest: tickets to see the Philadelphia Phillies. I wasn't sure what this MS thing was, but man, who needed a cure when they were getting me to Philadelphia to see my favorite team. In retrospect maybe I should have aimed a little higher, but you know, hind sight is 20/20.
So sometime in the school year they would hand me two blue square pieces of paper that entitled me entrance to Veterans stadium to see the Phils. Honestly I have no recollection of who won when I was there, I know that the tickets were always for an Atlanta Braves game, but I do remember the first time I walked out of the vomitoriom (that's the proper name for the tunnels that lead to the seats in large arenas. A little knowledge I picked up along the way that I am now passing along to you.) We were of course way high up in the stadium, and I had no idea what I was going to see. I was use to little old Municipal Stadium in Reading, PA you sat right up on the field. It held like 7,000 people. As I came out from the vom (now I'm getting fancy, that's the slang version of vomitorium) to see the 60,000 plus seats stretching out around me and down below the brilliant green of the field, it took my breath away. I got a little scared being up so high on such a pitch, but I had never seen anything like this, and it was beautiful, albeit a little overwhelming, but beautiful to a little kid.
The day that my doctor called me so many years later and said, "Ben, I want you to go see my wife's neurologist." I obviously knew that there was a problem. Honestly in my mind there was a tumor. I asked my doctor to level with me, why did he want me to see his wife's neurologist? He hesitated, but he knew me and I guess he figured I could handle it. He said, “Well, it looks like MS."
Many of us have heard those words. Many of us know how devastating it is. Although, the first thing that came into my mind was a picture of the tickets that I was handed when I was a kid. The excitement that went along with that envelope and the winter months I would have to wait till I got to use them. Large squares of blue with red type and a cartoon picture of a dog. What the dog had to do with it I have no idea, in my minds eye it is the slush puppie dog, but this just has to be a confused memory. MS was just two letters on the paper and the reason I was able to get tickets to the see the world class Philadelphia Phillies. I never knew what MS really was despite all the fund raising I did in its name. Unfortunately I would get to know all too well what those two letters represented.
I just think its funny the circles that our lives move in. MS was actually an important part of my youth without me ever realizing it, and now on a very different level it is an important part of my adult hood. I suppose we could find new neurosis in this and garner a new set of superstitions, but it is hardly worth it. Superstitions aren’t going to change my disease, nor, in truth, are they going to win the World Series. They are just a small mans way of trying to make sense of a bigger picture that I will most likely never understand, a control mechanism that really gives me no control. I realize that hundreds of other kids have participated in the MS Read-A-Thon and they didn’t get MS. Dumb luck I suppose. It’s just very easy to draw lines and connect dots when you are on the other side of time. Whatever the case Go Phils!

p.s. we are on a rain delay right now. We don't have a fancy dome like Tampa Bay, so we have to wait out Mother Nature.

p.p.s I know that there are a few people from the Florida area that are kind enough to peruse my blog. Let me be the first to applaud you on a great season, however also let me be the first to say thanks for helping us break the curse.

Sunday, October 5, 2008

Send in the Clowns...

While driving to work the other day I heard a little blurb on NPR about a calendar. A calendar? Yes, a calendar. While such mundane things might have just passed me by like a healthy immune system, this got my attention. First, this calendar was of just clowns.

"Ehh, okay, clowns what's the big deal?" you ask, "Clowns are okay they make some people laugh and all, but they are really kinda creepy."

I might have to agree, but it only gets better from here.

So far we know we have a calendar, we know that it is twelve months of just clowns, but this is the interesting part. It is not only twelve months of just clowns, it is twelve months of just NAKED clowns. Yep, naked clowns. Now, again you say, "While this is sorta of disturbing, and by sorta I mean really, I'm curious to know why it warrants mention here on your MS blog. " Funny you should ask, first let me point out, I do not have a penchant for clowns, clothed or otherwise. The reason it gets mentioned here you see, not only is it twelve months of just naked clowns, but all proceeds go to MS research.


Who needs bike races, runs, walks, read-a-thons, jump ropes, doing it till it hurts when you got this? I think we can all rest assured that we'll be seeing a cure anytime now. Just sit back and wait; the clowns are on the scene. I can't believe that nobody thought of this before.

Now this begs a ton of questions:

Sadly the website has very little in way of sneak previews of the clowns. You can see clearly that the clowns are wearing makeup on their faces. Where else is makeup being applied? Secondly, it is clear that some clowns are wearing their red noses, but are they wearing their oversized shoes? Where are they going to pull those multi-colored handkerchiefs from? Lastly, can we expect a calendar from the lion tamers next or would this just be too hazardous?

A bald guy’s got to wonder. I'm not one for unsolicited promotion, and that is not what this post is about. However, take a look at the site. I'm sure there will be any number of better jokes you can come up with. By all means please post them here. I mean look at those big grins on their faces, I realize they are clowns and all, but come on…. that a banana in your pocket, or....oh your not wearing any pants....

Wednesday, October 1, 2008

Would the real Bald Ben please stand up......

I never much thought of myself as a "blog person". Sitting here writing some sort of blather about myself for others to read never really seemed of much interest to me. Then my wife got pregnant. One might ask, "Hmm, how does your wife getting pregnant lead you to blogging? I would think you would have a lot more to think about?"
Your question would be a good one, albeit a little short sighted, but a good one nonetheless. You see, my wife wasn't only pregnant with one baby, but she was pregnant with two babies! Yep twins. This as I have been known to say is proof there is a God and he has a very dark and wicked sense of humor.

Picture it: It's a lovely day in heaven. Large white billowy clouds, soft harp music in the air, well manicured lawns, you know....heaven. Standing by the pearly white gates, God, calls all his buddies around, "Buddha, Moses, Vishnu, Jesus get over here.” As they gather they realize that God has got a real rip snorter and He can barely hold back his laughter.
Now, God has been known to tell a good yuke from time to time, (i.e. floods, pestilence, duck billed platypus) but if he already can't contain himself this has got to be good. “Wait till you see this,” almost bursting in hilarity, “See that Bald guy down there?"
"Yeah" They reply choir like.

God bellows out," allakazam!"


Bald Ben's got MS.

God is rolling. He almost starts a thunder storm he is laughing so hard.

The other deities look at each other a bit confused. You see, Buddha never understood this whole incurable disease bit. He’s more of a knock, knock joke guy.

Knock, knock…
Who’s there?
Buddha who?
Don’t cry, it’s just me the Enlightened One…..

And Moses was still trying to figure out how the Jews, after thousands of years of persecution, were supposed to be the chosen people. Jesus, being the savior and all, meekly taps God on his great big omnipresent shoulder and says, "Dad, ummm, that wasn't really that funny." God, still laughing, eyes his eternal Son and says, "Wait for it, wait for it...."

Another allakazam!

ZAP! Bald Ben is now the father of twin boys. All the deities break down in uncontrollable laughter at the great cosmic joke that was just played on the poor kid who lost his hair when he was 16. If you listen real close, you can still hear their eternal mirth.

But I digress, I started the family blog (It's linked to on the left there. Two babies, one Bald guy, and a woman who can't tell the difference: a love story.) Simply because I was feeling a bit lazy and antisocial. "Hold the phone," I hear you say, "Lazy and Antisocial? Blogging can be a tough hobbie, and it ostensibly connects you to thousands of people at one time."
Ahh, you are right. If done with a little bit of heart and elbow grease blogging can be a full time job. However I am not looking for anything permanent thanks, just a little part time thing on the side will do just fine. The laziness and antisocial behavior came out of the fact that I didn't feel like having to call every person we knew with every detail of every doctor appointment, answering the same questions ad nauseum. Oddly enough despite the blog, I had to call every person we knew with every detail of every doctor appointment, answering the same questions ad nauseum.

However something odd happened along the way,

"Did you step in Dog poop?"

No, I did not step in Dog poop. Well probably somewhere in there, but that's a different story. No, what happened was that I found out that I liked blogging. I was writing and rewriting and then once posted checking back for comments and the like. I was sorta addicted. Oh great, now I got an incurable disease, twins, and an addiction? How much can one Bald guy take?

Ed. Note: I don’t want it to seem that my boys are any sort of burden or that they are not the center of my world. I love them with everything I got, but it just seems that odds are you're only gonna get one at one time. I guess the odds are against me.

So a few months ago I started toying with the idea of starting this blog. My health is in a constant state of flux and I wanted to let people who cared know about the changes. Somehow it just didn't seem to fit on the family site, I didn't want to bog it down. It was a site about our kids not MS. Furthermore, I was hoping that there might be a larger community of MSers out here. Maybe get the opportunity to share some stories and thoughts with others in the same boat and perhaps gain a little perspective.
The group meetings thing never really seemed for me. I know that it has helped a lot of people, but perhaps based on my own biases or fears I just can’t see myself joining such an organization. On the other hand I realize that this blog is like one of those meetings. A central point for lots of us with MS or sympathizers there in to sound off. I suppose I didn't realize that the connection between us through MS is pretty important. Incidentally for those of you who are reading or have left comments I'm real appreciative.
Anyway, let's get to the point here. The reason I write this is in response to another post I saw a few weeks ago on another blog. I was leaving a comment when I realized that it was much more of a post. They had recently written about disclosure of their true identity and personal details and how they would not reveal such things on their blog. While I respect such a choice, I begin to wonder about my own choices when it comes to identity.

I have spent 31 years being who I am. Some love me, some hate me, many are indifferent. I have never been one to listen to popular opinion or measure myself against others. Why this is I do not know, I have always just been pretty self assured. This can get me into some trouble, but I say stick it in your ear. Why the ear you ask? Cause I am too nice to tell you to stick it somewhere else.

So back to the point....It never dawned on me to somehow hide who or what I am on my blog. It sorta seemed like the very point of keeping a blog. I found, the old adage, honesty is the best policy to garner the greatest results. And by being honest I mean being truthful about myself.

I'm comfortable with who I am, and have been for a pretty long time. Therefore what do I have to hide? So ask me a question, go ahead ask. You wanna talk about music let's talk about music, you wanna hear about my crazy family let's talk about my crazy family, you wanna see my ass I'll show you my ass, you wanna talk about my disease let's talk about my disease. As they say knowing is half the battle, and I am an open book.

However, there are a few exceptions here in cyber space. On my blog I choose not to name my doctors or the medical institutions that I frequent. None of these people or places have asked for any "fame" or notoriety due to my writings. I think it only fair that I give them courtesy and respect of their privacy.

It is obvious enough to anyone who might be familiar with the Philadelphia area the places and perhaps some of the people I talk about. There is enough information here, as well as on my family blog, to put two and two together. So be it.
My job is a whole different story. I work... let’s say outside of Philadelphia, very near the seashore, where there are lots of large neon signs. (Again for those of you in the area I think you get the picture.) I work in a more upscale place that has those neon signs, they deal in a lot of money, and in order to obtain that money they need to make their clients comfortable. They do this through a series of "Games" and "Entertainment". I work on the "Entertainment" side of things. Essentially I put on big rock concerts for the people playing the "games".

I will not name my employer for a few reasons. First is the same reason as I won't name my Doctors. This blog is not designed to promote or relegate my employer in anyway. I have made the choice to work for them, that is on me. Second reason is a bit more complex.

I was warned at my "orientation" that my employer has people on staff that looks specifically for mentions of the place. This they tell me is so they are able to keep the name of said place in a good light. That sounds like some job, but I don't really believe that there are employees here that are actively looking for blogs and whatnot, (I have been to the IT department, there are a lot of dudes who just talk about video games.) but the point is made: You are to stay in line.

This is one that hurts a little. I am not one to just "stay in line". As I walk through my place of employment I can see that the vast majority of people here, as my good friend Maya puts it, have "drunk the red kool-aid." They have all bolted their smiles in place and have convinced themselves that we work in an amazing place. They work here, they hang out here, they talk about it at home, put up banners on their facebook pages. I do none of these things and I promise I never will. Do not misinterpret what I say, I'm not some great non-conformist, but I will be damned if I am a sheep. I work here, they pay me money to be here, when they are not paying me money to be here I will be at home or some place that I would rather be.

Honestly, let them can me, this industry is not part of my identity in any shape way or form. I just happen to be good at what I do, and people keep offering me jobs. I'm the jerk who keeps taking them. My kids like to eat, I like to eat, we therefore need to figure out how to eat. This job is the best way that I have for now. Although, it would be sweet to get fired over a blog post, how ridiculous is that?

But back to the point here: identity. I feel that I have started this blog for that very reason, my identity. Not to simply define myself on, but to suss out some of the things that are bouncing around under this Bald exterior. As all of us know it isn't always easy to see our way around down here, add MS and it gets a lot tougher. It is easy to just give in to the mentality that I am sick, that is who I am, the path ends here. Conversely I could also convince myself that I am not sick and it is business as usual. In being honest with myself I know neither of these scenarios are true.

MS does not define who I am, however, it does inform everything I do. The things that frightens me the most is the way I feel I have slowly been losing portions of my identity because of MS. The things I was able to do five years ago aren't necessarily what I can do now. The disease has snuck into some of those corners and prohibited me from being who I always was and who I want to be.

For instance:
I have made a few mentions of music on the blog so far and how important it is to me. I have played music since I was 10 years old. I worshipped it long before that. At 10 my parents finally gave me the guitar that I had been begging for. They, like most parents, were concerned they were gonna shell out all this money and it would just end up in the closet. Luckily, they were wrong. There were very few days that I ever put it down, I even got pretty good.

I played in bands, wrote lots of songs, got calls from other bands when they were recording. I wasn't the greatest guitar player there ever was, but I had a lot of heart and a pretty good feel for what needed to done. I was proud of my accomplishments as a musician, I have no delusions of grandeur, I just loved to play with anyone that wanted to play.

In 2005 while sitting in my living room with a few other friends playing music I got an intense pain every time I tried to put my left hand around the neck of the guitar. Afraid that it might be carpal tunnel or something I took a break. The pain persisted. It of course led to a whole host of other symptoms. I know now that this was the first step in discovering what was going on in my body. A few weeks after the diagnosis the pain subsided and I continued to play.
However, soon a new problem arose. The numbness in my fingers was interfering with making chords or finding the right notes. I had no idea where my hands were or how hard or soft my fingers lay on the strings. Never had I been so frustrated, I knew what I wanted to do, I knew where I needed to go, but somewhere the lines got crossed. Unfortunately these weren’t mistakes I could come back and revisit. When a mistake was made it generally made a hell of a racket. Since my boys were born in October of 2007 I may have picked up the guitar 2 or 3 times. I still look at it everyday.


I have been blessed with an amazing network of friends. They have been a support system long before I was diagnosed, and they are still a great comfort and joy in my life. My good friends Andrew and Elisa were married a few years ago and had a really great wedding out in a park. There was an area for musicians to play music, there was food, and there were baseball diamonds.

I had just gotten through my first relapse and was very afraid of an outdoor wedding in August, but I had to go. I figured like some half assed politician I would make an appearance, shake some hands, and head home. It was warm that day, but something about being out and amongst my friends told me I was going nowhere. After being cooped up for most of the summer and only speaking with people on the phone and computer I was finally back among the living. I felt like a normal dude, MS didn't matter it was a joyous time for Andrew and Elisa and silently it was a joyous moment for me. I felt a little triumphal.

When the baseball gloves came out I could feel my blood pressure start to rise. Baseball is another one of my true loves. I knew it was a bad idea to try to play so I watched for a bit, but I just couldn't contain myself and had to take the field. I told my wife, "just one inning." three hours later I came off the field, limping, dusty, but with a sense of well being.

Our mutual love of baseball and disdain for the jock mentality led us to form a ragtag baseball troupe that would get together as often as possible at one of the many unused diamonds in Philly and play 9 innings of ball. Some of us were terrible, others really had the knack, but it was always in good fun; A reason to hang out for the afternoon with nothing on the line but a few hours in the sun. Last summer it seemed I didn't miss a game, always with plenty of water and my hat (Phillies of course). The days would often end a bit earlier for me, but I always made it out.

This year is another story. Every week it seems I get another email about where and when the game will be, but I know I won't be there. This summer has found me hiding in doors. As a kid I lived for the summer, open the windows, the doors, get in the swimming pool. The hotter the better was always my mentality. I never was a fan of air conditioning, I've been penned in doors all winter, I want the air, the sun, the heat, hear the world around me. MS has other ideas.


Lastly and maybe the worst is the role that MS will play in my children’s life. When I was a kid my Dad took us to every amusement park in a 500 mile radius. He loved going on rides and walking the parks till sunset. Some of the best memories of my Father lie in Dorney Park, Hersey Park, Disney World. (a little farther than 500 miles, but you get the idea) It is here that as a boy I began to form my concept of how to be a grown up, a father. Formative experiences that perhaps I hoped to communicate to my future children. These same experiences that I shared with my father, that I now realize I counted on, may never be realized in my own children’s lives. Walking a park in the height of summer, roller coasters, and spinning rides all seem so far from my grasp. The last time I went on a roller coaster I had to sit for hours to regain my balance. My wife and I took the boys to a local park with a merry-go-round recently, and the slow revolutions all but ended my day. I have nightmares of being the guy who sits at the concession stand mindfully watching everybody’s bags, the only excitement to be found as the kids exit the ride ready to do it again.

It is these things that are being slowly taken away from me that make me wonder about my identity and how it is changing because of Multiple Sclerosis. There are lots of other things that I could pull out that aren't the same, that's pointless. These three essentially tie into the bigger picture of my life and what I fear is slipping away. What do you do? How do you save these things that are draining away? I have no control over this, I still get calls to come and play guitar, I still get emails to come and play ball, I still want to ride the Comet with my boys. These things may not happen. So what does one do? It's almost like starting over.
So I suppose I will just have to go and dream it all up again.

But I will not hide. I am Bald Ben. My view points, my thoughts, my opinions are all free for the taking. I stand behind what I say, that's why I say it. Otherwise this would all be a colossal waste of time.

Friday, September 26, 2008

Day 5: Alls well that ends well....well I still got MS

Free at last! Free at last! Thank God Almighty we are free at last! (I realize that this might be offensive to some, I assure you I have the utmost respect for the Rev. Dr. Martin Luther King Jr. It just so happens his words ring true for a MS laden skinny, white, bald kid from Reading, PA. If he didn't want to be quoted he shouldn't have said such profound things.) IVIG is nothing to mess with, but it hasn't been so bad. As a matter of fact it's been pretty tolerable. The worst thing honestly has been the time that it takes out of my day. 5, 6 hours is a big chunk, and today it becomes a bit more complicated as I have to work. So my day started with my boys at 6:30am (not so bad when you have 11 month old twin boys. In the grand scheme of things this really isn't a complaint.) I got washed up, and made it to the infusion center just before 9am. I was a little late. I hate being late, it is one of those many pet peeves I have. If someone asks you to be at a place at a certain time I feel you should be there. I am not sure where or how this became a trait of mine. There is no one in my family who is particularly punctual, nor can I cite any sort of instance ( moving out of the way of falling piano, horrible car crash a moment after I pulled away etc.) that my life changed because I was late or on time. I just developed this behavior myself, what deep seeded neurosis preceded this is anybodies guess. That being said, I think the nurses were appreciative. They had 6 other people who show for an 8:30am appointment and to get them all settled and medicated at the same time can be a tall order. So in actuality I did them a favor. I maybe only one bald skinny guy, but I think the lull of at least one person is a breath of fresh air. See, this is the kind of guy I am. I look upon the hardships of others and try to make it better, try to lighten their load. I am a good person....Sorry lost it there for a second, what was I saying?


They got me hooked up by 9:30am and let the bag a flow. My buddy Joe was there again, Nina popped in a bit later, but the real interesting thing was there was a young girl and her mother there. Sadly the girl, who looked about 12 or so, was the one hooked up to the IV. The mother was cordial, but wasn't offering up any info on her daughter. I certainly was not brazen enough to ask, so I did what any polite, red blooded, American, male would do. I waited till she left and lead the nurses on a series of ambiguous questions in order to obtain the info that I sought. Turns out the young lass was on a drip of Tysabri, however she did not have MS. She had some other sort of condition, if I picked up my clues right, like Diverticulitis. Equally as horrible, however, I believe it is a very treatable condition. Don't quote me on that I am just pulling it out of my lesion laden brain. Getting more to the point, the reason I was so interested, besides the fact that I am just a nosy bastard who likes to stick his bald head into every last GDed thing, is that I assumed she had pediatric MS. This is a condition that is only now getting some press and being diagnosed.
I have long wondered about my MS and when it actually started. I have been wrought with mysterious ailments since the time I was a boy. These problems would often disappear, generally just in time for a doctors appointment. This is when I started to hear the phrase that pays, "It's all in your head. Just relax and you will be fine." I knew I wasn't fine, I knew there was a larger problem. (an aside here: If you ask any of my loved ones or friends, particularly my friends, most of them will tell you that I was(am) not fine. However most of these people are not citing any health problems but a slew of other unpredictable things that would either come flying out of my mouth or some sort of barroom antics that generally left mouths agape. Those were fun days.) I realize there is no way of going back to pin point when these things began. I also realize that there is nothing we can do if we are to find out that I have had MS since I was a kid. I do know that I had symptoms long before I was diagnosed. I have very distinct memories of someone pouring warm water down my back when I turned my head a certain way. I can go back as far as 2000 with this feeling. I have had problems with my bladder while in college. Let me just tell you its a tough conversation when all your boys are hanging out in your dorm room and you come in sorta perplexed from the bathroom. "What happens when you can't pee?" "Dude, seriously, were trying to watch X-files." (I know it's a dated it would ya?) So just how far back does it go? Just till my late teens, which is when I started with Cluster headaches, or does it go back farther? I have had swallowing issues for as long as I can remember. It is my suspicion that MS has been present for longer than I care to think about. I had a neurologist way back, when I began having headaches. They did MRIs, always finding nothing. However, I think that this guy was an idiot. I should have known better seeing how I had to bring up the use of Imitrex, and try to convince him the codeine he was prescribing me was only making my headaches worse. This doctor was obviously of the school, "It's all in your head. Just relax and you will be fine." I suppose it would behoove me to get a copy of that file and have a medical professional look it over. Who knows what is lurking about that this Wonder Nuts might have missed. Sorry I got off point. So 6 hours later I get all the bandages taken off, which is the sweetest relief, I am sure you are all aware of the ungodly itching that such bandage glue will produce, the IV pulled out of my arm, and after a few thank yous/see you agains, I am on the road. A quick stop at home to change into my "straight” close, kiss the wife and children, you have to do that....Then back into the Yaris to give it the old college try on my drive to work. Now, I haven't talked much about my work. I have a post that will discuss it in further detail later, but my commute is just over an hour. It gives me time to think, listen to music, get pulled over by cops. Oh yeah, I got pulled over today. I knew it the second I buzzed by him. I'm no speed demon, but sometimes it gets away from you and this happened to be one of those times. I quickly took my foot off the gas, but it was to late, I saw him pulling out. So I got out of the passing lane and slowed down and awaited the inevitable. The inevitable came. The cop was actually real nice about it. I had all my info ready for him, he asked me where I was going, etc. He told me to sit tight and disappeared back into his car. I sat cursing myself and wishing I had just stayed at home. Whatever the ticket was going to cost certainly wasn't in the budget. I felt like a jerk. So options began to run through my bald head. What if I took off and made a run for it, once I got into work I can yell sanctuary and he couldn't touch me. No...I don't work in a church. I could try something with orphaned children. Ehh...the Yaris is too small for kids, besides he would give me another ticket for no car seats. I know MS. I got MS, this disease has got to be good for something, right? I could show him the band-aid from where the IV was, that'll get 'em. I'll try to walk a straight line for, that'll show 'em. Just them a knock on the window, and as I am about to launch into my most pitiful story, he smiles and hands me a warning and tells me to slow down, have a good day. Whew....I'll bet he smelled the MS on me. I'm here at work now. (yeah, I'm blogging at work. How you like me now?) I actually have a few things to do, so I can't be talking to you people all night. So, thanks for reading about my IVIG this week. I'll let you know if there are any results. Actually right now I am noticing that I feel a bit stiff. I am hoping this goes by the way side. I am sure it will, it seems to be par for the course with this stuff. Today I just didn't get to sleep it off. Seriously though, thanks for reading.

Thursday, September 25, 2008

Day 4: Leave the Drama behind

Okay so it turns out I was just being dramatic. Big surprise. So here's the deal, there are side effects to IVIG. They are flu like and they are cumulative. So the reason I felt run down and fluish is because I was run down and fluish. The nurse today looked at me like I was a few antibodies short of a full immune system when I told her that everyone had said there were no side effects. She let me know that maybe the first day or so, but after it gets into your system there can be some ramifications. After all you are inundating your system with a bunch of foreign invaders, it only stands to reason that there is gonna be some sorta backlash. Hmmm....anyway, The aseptic meningitis is a possibility, however it is a remote one. Leave it me to be a reactionary.

So day four has come and gone. I decided to not be so antisocial today and sat in the "common" room. It was a large room with 6 IV stations, and a common TV. Through out the 6 hours most of the seats were filled, I was by far the youngest person there. Everyone was real pleasant, and all but one had full function. So I guess that's a bit reassuring. The only real downside of sitting in the common room was that I didn't sleep and while I didn't sleep my new buddy Joe enjoyed an episode of Jerry Springer.

I haven't seen Jerry Springer in quite a few years and let me just tell you that the show does not age very well. There were midgets (little people, which ever), badly tattooed brothers fresh from prison throwing punches over the women they say they both love, strippers dancing at the "pole" that just happened to be there, and wait for it wait for it......Sheep. Yep, dudes who like sheep was one of the topics. What more needs to be said? In a time of foreign war, economic crisis, heightened tensions with Russia, of course the American people need a guy who likes sheep on day time television. It's one of those things that lets us know that no matter how bad, how ugly times get at least their is a dude who likes sheep. I suppose it makes one wonder....can't we all just get along?

But I digress. Besides the minor side effects and the length of time I need to sit, the IVIG, isn't so bad. Far more stomachable than the Avonex. I had a hell of time with Avonex, they kept telling me the side effects would subside and 6 months later I was still a mess for a few days a week. I had to move on. I don't want to cast any dispersions on Avonex. I know that it works very well for a lot of people, I unfortunately was not one of them.

Anyway, IVIG, the greatest side effect I am coming across is the cost. As the very friendly nurse told me, "that's liquid gold we're draining into your arm." This was of course after the 9 attempts at finding a vein, but I'm not bitter. $5,000.00 per bag of IVIG. If you are doing the math that would be $25,000.00 just for the medicine this week. This of course doesn't include all the other fees that will undoubtedly arise. They tell me it may cost up $100.00.00 for five days of treatment. Seriously. In the immortal word of Bono, "The rich stay healthy and the sick stay poor."

Now most people look or think that I am nuts with such thoughts, "What are you worried about the insurance will take care of it." I hear ringing in my ears. Oddly enough I don't trust insurance companies. They are an industry to make money, helping people is a side effect. So, I started my job only 6 months ago, I only started on their insurance 3 months ago. This is the first time I am really taking it out for a ride. In the immortal words of Quint from the film Jaws,"Wait till the taxidermy man see what I brung him!" He of course goes on to get eaten by the shark. I do not want to get eaten by the shark.

On to the last day tomorrow and onto the future.

Wednesday, September 24, 2008

Day 3

I'm super beat again today. I actually just got up from a nap. This makes me a bit worried. Now I could just be being a reactionary here, and I sure I am, but after looking into the symptoms of that aseptic meningitis thing the nurses keep warning me about a bald guy starts to wonder. Actually a bald guy starts to get worried. I'm super super beat, have a slight headache, and am hoping that I am chilly just because it is a bit chilly outside. I'm just being a reactionary right? right? I told you that the internet can be the greatest resource for hypochondriacs, and hopefully I am being a hypochondriac here. I'll keep you updated. Cross your fingers. I am just being dramatic...I hope.

Tuesday, September 23, 2008

Day 2: no oats, maybe some pretzles

Day Two: pretty much the same thing. Although the boys decided today was a good day to sleep in a bit, and besides a little blip at 4:30am they slept through till I woke up at 7:30am. Now, your infant sons sleeping all through the night is generally a welcomed thing, I was really counting on their normal 6am chow call. Making the fact that I opened my eyes at 7:30am a bit of a problem seeing how it was my planned departure time. I guess I should stop using my children as an alarm clock. They are nowhere near as reliable as I hoped. Besides the clock I have is digital, my kids are not digital.
So I jumped out of bed and ran to the bathroom. Well, in a perfect world this is what I would have done. In reality it was more of a quick hop onto my feet and as I lifted my leg to make for the bathroom I realized that my left leg was not ready to hold all my weight. I mean, why would it? Who am I to expect such a thing? After all my leg was tired too, it had just been in a nice cozy warm bed and I am supposing that it wanted to stay there just as much as I did. Alas I had to be the one in charge and get ALL of my body parts to be moving. You see this doesn't work so well if only a handful of you want to function at the same time. I find the best results occur when we all work as a team to accomplish the task at hand. So I placed my hand on the wall, "See," I said in a pseudo mocking tone,"left hand is working pretty well, at least he's giving it the old college try." I think being compared to the left hand might have done the trick, I mean the left leg is no dummy and he realizes that the left hand is vilified in many cultures. It wasn't long after that, that left leg began to cooperate and we were all able to make it to the bathroom. A quick wash up, toothbrush, etc (I mean you gotta smell half way decent) and low and behold I hear my boy Emmet up and at 'em. Your about 45 minutes to late kid, but I'm glad you got a good nights rest. Then down the stairs to kiss the kids, the wife, and out to my trusty steed Toyota Yaris to take me to the infusion center.

Once at the center it was pretty par for the course. I was in a different room this time, but it was pretty comparable to yesterdays. This one didn't have as much indoor/outdoor carpeting but the chair actually seemed a bit more comfortable.
The other friendly nurse came in flushed my line, luckily all was in good shape. Apparently there was a bit of apprehension after yesterdays fiasco of trying to find a vein. Both very friendly nurses were relieved. I suppose so was I.

They hooked me up by 9:40am. I asked about the lag in time from my entry to the actual IV beginning and the very friendly nurse explained to me that they actually have to mix the solution when I get there, today some of the solution wasn't dissolving as quick as they would like. I figured it was a good enough explanation. I got comfortable in my chair and they gave the prerequisite medications that some how I was never told I needed to take. Something I forgot to mention yesterday was that they have you take some Tylenol and Benadryl before they start you off. There are a few side effects that everyone else forgot to mention to me the 12 times I asked about them like a rash, headache, or aseptic meningitis. Yeah they seemed real concerned about the meningitis. Although somehow I don't think either the Benadryl or the Tylenol are going to really stave that one off.

So they started to drain the bag into my arm while I deftly killed today's Philly Inquirer crossword puzzle in like 20 minutes. This turned out to be a good thing, seeing how as I picked up the Metro and started their puzzle my brain began to malfunction a bit. I just couldn't concentrate on it. I mentioned my lack of concentration to the very friendly nurse and she pointed out that the Benadryl may have begun to kick in. I like that answer as opposed to the alternative (and obvious) that I just didn't have the intellect to conquer that puzzle. I'll have to revisit it later. I can't let that bastard puzzle get the best of me. I can hear it laughing at me from here.

This room, like the other, had a TV and also like the other room was connected to Direct TV. I have cable at home, and for whatever reason this Direct TV thing has always confounded me, channels that start in the 200's, lists all kind of great shows that are unavailable to me. Makes no sense. Yet I seemed to get the hang of it and yesterday as I am going through the guide to see what I want to watch I come across information sweeter than free money (well maybe not that sweet, but pretty sweet) Twin Peaks will be on at 1pm. Twin Peaks? On TV in the new millennium? Finally a clear answer to all of this, this is why I have been given MS, to lead me here, at this time, to receiving a treatment that would present me with this channel lineup, so I was able to watch the greatest television program since the Twilight Zone. Well my day was planned, a few crossword puzzles, a quick nap, and then onto the Chill channel to watch the great Dale Cooper lead the cast of quirky charters through the unsolved murder of the towns head cheerleader with the double life, Laura Palmer.
1pm rolls around and I hit the button for the Chill channel, I am sure you see where this is going, channel unavailable. Unavailable? How rude is this? Not only have you given me an incurable disease you pull this crap on me? Wow, this really takes some stones, if you weren't omnipotent I think I'd ask you step outside, but seeing how you are omnipotent I'm not sure where outside would be for you or where you would stand.
With my dreams crushed I talked with both very friendly nurses for a bit, took a look at a crossword puzzle, and by 2pm it was time to go home. Day 2 finished.
So in the immortal words of Spec. Agnt. Dale Cooper: Gentlemen, when two separate events occur simultaneously, pertaining to the same object of inquiry, we must always pay strict attention.