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.