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.


pUNKrOCKfairy said...

Took your invitation and checked out your other blog. Holy cute babies Batman! I love how Joe always looks surprised and Emmet always looks like he did the surprising. My kids are fascinatingly opposite as well.

As for the rest of your post... suffice to say "I feel you dawg." You can expect something similar in my near future posting.

Heather said...

Great post. You should have warned a pregnant woman though because I can't stop crying now.

But I wanted to share that I often associate songs with certain people and memories. Knowing me, I'm sure you are not surprised. Anyway, songs like Untitled, Push, Suppose You Gave a Funeral and No One Came always remind me of you and the start of our friendship way back when. I then get all of these clips in my head like a movie of my best memories of you, "Bald Ben". Typically, they are you showing up at the pool with your long hair and bag slung over your shoulder, seeing Jurassic Park in the theater and the screaming, hanging out in your room listening to music, seeing Duran Duran with you, driving my drunk ass around in college, eating cheese fries at 3rd & Spruce, you drunk at the SCS bazaar and that pizza you brought home, seeing your band play a few years ago, eating at Fellini's when you told us about Angela for the first time, your dance w/ Aunt Mag at my wedding, you playing baseball w/ John, Mikey, Becker in our backyard, the phone conversation when you told me you were having twins & then the conversation right after they were born and many more. Those are the ones clearest to me though.

Anyway, my point is there are so many things that define you (to me). It will be the same way with your boys. I know you know that. Maybe they won't have memories of going on a ride 10 times in a row like we did w/ Russ at Great Adventure, but they will have tons of happy memories with you that will define "dad" to them.

Good Lord, this was pretty long. I am going to be thinking of memories all day long now. I will email you more funny high school ones as I think of them.

Bald Ben said...

Sorry to be a downer, it wasn't my intention but I guess it just sometimes gets away from me.

Thanks. Most days I can't even comprehend that they are really my children. It's pretty amazing to watch two kids with all the same stimuli, at the same age, and the way they deal with it. Amazing. It's sorta like a very large science experiment that I have no control over. I look forward to reading some of your thoughts on how we are changed and how we might be able to retain who we are despite MS. I am sure that you have found similar problems.


Again sorry for the heaviness, you're the last person I want upset. Those babies need to cook just a bit longer.

You know our friendship is the thing they write songs and books about. There are more memories I have of you then I can even recall. For whatever reason you have been one of my most stead fast friends, and classic moments always seemed to pop up ..."Were all dinosaurs gray?"....."No Heather, they are not yelling sharks! They are yelling Charge! It is done at every baseball game in the country." (just to recall a few)

Those songs that you listed oddly enough are linked to you in my mind as well, you missed Rio though, but that is your song. Although I wonder if it is "Funeral" verses "The Only Living Boy in New Cross" that you remember. I have distinct memories of you having me use the opening when Fred and I would DJ high school dances.

"Hello, good evening and welcome
to nothing much"

Either way they are both great songs, and when ever that album comes on it is linked to you and to that time when we all started to hang out.

I loved who I was and where I came from. It has most definitely made me the person I am. Everything changes so fast and I am trying so hard to hold on to some of those things that created me. I want to be able to give my boys a taste of where it is I come from and how it is I came to be me. I just have to come at it from a different angle now. It doesn’t make me happy, but it is what needs to happen. I'm just glad that there are people like you, John, Mikey in our lives that know me as well as you do. You have been as much of an influence on me as perhaps I have been on you. I am thankful that you are still around us and that you will be part of my sons’ life.

Heather said...

Thank you for checking out my blog and leaving such a wonderful comment. I look forward to reading more of your blogs. You're boys are precious!

Blinders Off said...

I had to read the rest of the story after reading it on the MS Carnival.

We are an open book and if you think about our every moment is tracked, cameras in public, cell phone, on star etc...,

I agree with what you said about blogging, I do it because I enjoy doing it and when I have issues and complaints about MS. I discovered I could release it on my blog; the MS blogging community understands and at times has valuable suggestion or a comment because they can relate to the frustration of living with MS.