April Showers

Foibles, challenges and escapes

It’s around this time every year, for the past 4 or 5 anyways, that having been diagnosed with MS brings on the highs and lows that have come to set the tone for who I am; Or at least…who I try to be.

In my daily life I live with constant reminders of the cards that were dealt to me back in November of 2006. But while I’ve had to play a few other bad hands in my life though time, this isn’t a bad hand that my brain can just file away in a locked box, for the sake of self-preservation. It’s a living, breathing thing that wears like an ill-fitting suit. And for no reason, other than pure logistics…April is a month of looking into the barrel and working hard not to flinch. And all this begins next Saturday.

A lot of really good people are going to gather in a park back in my home town, and try to raise money towards research that may lead to finding a cure for MS in the future. And there is nothing un-noble about that. In fact…if it weren’t for these kinds of functions, my doctor would not have had the knowledge 7.5 years ago to get me on any type of treatment that helped. And the outlook for my life would have been very different. Which makes my feelings about next Saturday seem a bit dickish…but being that I promised myself when I began this Blog thing, that I was always to be honest, attending that walk is really the toughest time I have in the whole 365 days that fill my year. And that’s because of…FEAR.

We’ve all heard stories of men and women who have done the extraordinary in the face of overwhelming odds or horrific events. But when I walk around during that event, and see those who are now not like I am…I honestly don’t know if things should really go south for me…if I will be able to handle it. I honestly…don’t know. If I can no longer see through my other eye, and not feel what I do when I’m holding a camera, for me, it would be like losing a kid. If I could no longer drive my truck, it would feel like a prison. All of these things, plus others,  spring to the surface as I walk amongst those, who but for a simple progression in degree…are me…bring about a fear in me that makes me want to run and hide. But there is no place to truly do that. No amount of wishing or deigning “It ain’t gonna get me” works when you’re looking down the barrel of what is real. And should that day come, what will those people who have told me that I inspire them feel…If I break?

Through the years, I’ve tried to figure out a way to weasel my way out of not going. Even though it’s important to the people who count on seeing me there, the weaker side of me speaks to keeping my head down and staying away. After all…isn’t it smarter to stay clear of the business end of the gun pointed at you? But every year, I go back…and will do so until I can’t.

April also hold for me my chance to go out and do the thing I love to do most in life…second really, after hanging out with family and friends. And it too is a weekend full of looking into limitations and challenges, but has more to do with a pure love. Yes…racecars are coming back to Long Beach J

What I love about grabbing a camera and heading out to play with it would take on a mind of its own and pages of type, trying to explain it. Through my life, it’s truly one of the most personal things I do and while there have been others, who have enjoyed looking at them, what I get from doing them is not easily explained. Maybe it’s a sense of adding permanence to my life through capturing a moment of me being here or maybe it’s something more. But doing it seems to have had a newer facet cut into it in recent years because of the simple fact…someday; I may not be able to do it. My MS has seen fit to take away the vision in my right eye, as well as mess with the conduit my brain sends the signal down to my hands in. I’ve missed shots that while looking through the viewfinder, would have been 100X better had my finger pressed down on the shutter release when my brain told it to. Images have been blurred from having my hands shaking because of getting myself over heated. I’ve had to shoot things from angles that make no sense to some…but they weren’t there to see me leaning up against whatever was handy at that moment to be stable enough to even try to get the shot off. I’m not Superman…or even a professional photographer, but should the day come and I can no longer do this thing I love to do, my OLNY hope in doing them, is for those who may see them will see ME in them. Because life is less about how I look, then it is about what I’ve seen and felt. This is really all I have to leave to anyone.

Someday…my worst fears may come to be. I’ll get a dose of what that may be, in the coming week. I’ll spend the day being scared and looking square down the barrel of something I do not wish for anyone. And harsh truth be told…I’ll find time, as I’ve done before, to sneak away for a bit and cry; (This being honest is tough) And I’ll get over it. Then the following weekend, I’ll head back out and look square down the barrel of viewfinder with a bright shiny Indy Car heading right for me. I’ll have to take breaks and seek out shade and places to sit or lean against. My pictures won’t be published in RACER magazine. And come Monday morning I’ll be paying for pushing myself to do things that maybe a smarter man wouldn’t do…But I’ll pay that bill. And then I’ll head out to take pictures of my friends surfing, or my family BBQing or the flowers, rocks, oceans and other images I want to leave behind for people. They say each person dies two deaths. The first when they quit breathing and the second the last time they are thought of. Maybe, by leaving behind images of my life…of the things I’ve seen…will be the meaning behind truly beating MS

Have fun, make memories…and never give up :)

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Simple thinking

Not everything is MS related :)

It’s been said, on more than one occasion, that I seem to take a John Walton view of a good portion of the world around me. And while I’m quick to point out that I am well aware I don’t live in a 1940s rural Virginia, I just have found that most problems in life only seem to get larger when passion over-rides common sense. We live in a world today where we have instant access to information, which maybe the crux of why today… even the sports we love so much seems to have been jaded.

I love auto racing. It suited me like a glove since the first time I stood along the fence at Riverside Raceway and saw my first CanAm car haul ass thru the turn 6 Grandstand section when I was 12 years old. Admittedly, I grew up with a spoiled access to every racetrack, having a family member who worked for a man who had a lot to do with Indy Car history. (I say worked for only in a descriptive sense, because “back in the day” most crew members worked for box lunches and the love they had for racing) And truth be told today, if I ever received a call from someone asking me to go out and take pictures for even the most famous of teams or a particular driver or RACER magazine…I would do it for FREE, just to be that close to something I love so much…and if they threw in a box lunch, I would be theirs for as long as they wanted me. But the sport I love HAS made some moves over the years that dwarf even the advent of those odd looking rear engine cars that had everyone’s panties in a twist back in the 60s. And I believe, in my opinion, the issue facing the Indy Car Series today has little to do with engine and chassis development or whose name is on the door as CEO. Both of these things…as a fan…are NOT the reason I love racing. And here’s where the Pa Walton in me comes out:

“Son…I’m a RAIDER fan (OK…I’ll give the reader a minute here to interject their best RAIDERS suck joke) not because they wear RIDDEL equipment or because of Al Davis. I’m a RAIDER fan, because of the players. Plain and simple. And through the years, there have been some GREAT ones.”

There in, lies the greatest issue I feel; with the racing series I love the most.

The owners and CEOs I feel, have lost in them what the passion was for the sport, which their predecessors brought. Sure…They want to win…who doesn’t? But somewhere along the line someone caved (And who this was, is the source of great debate) and they said yes to a driver handing them a check to get behind the wheel. This, I feel, above all leads us to where we are today. As fans…we can’t really make the statement that our series has the best drivers of any other brand of motor sport. We read articles about the chance that there may NOT even be 33 cars lined up on Memorial Day for our greatest race. We have drivers…GOOD drivers…who are without ride because they are now asked…not really so much asked as they are REQUIRED to be fund raisers for the money to do what it is they are sought out to do, which is to drive. And here is where I feel Pa Walton channeling back in:

“Son…Seems to me, if you want to treat your racing like a business then DO IT. Put your team together, and GO FOR IT! Surround yourself with the best and brightest you can find, but keep this one piece of advice from your simple old Pa…When it comes to putting the people who work for you together, you’ll get better results if the person running your buzz saw…just runs your buzz saw. Jacks of all trades never become masters of one.”

So in my view, it’s a simple case of losing sight of some folksy old school business 101 lessons. Businesses that do well are those who do not take the lazy approach to running their operations. And by lazy, I mean not thinking it important enough to hire the best person for the job. Every time you have your driver out shilling for the funds to feed the team, is less time they have training…living…eating…breathing the one thing they are there to do; get in your car and do the humanly impossible, at times, and WIN. Solve the issue of drivers doing double duty in your marketing department and you’ll see how many of the problems filling the seats at the tracks fade away. This means more money, more cars and more happy fans like me. There will still be issues with rules, number of oval races opposed to street and road courses and engine contracts and the likes…but all of us fans, the ones who love the sport every bit as much as the drivers, will then get back to choosing our favorites on the basis of who we feel is the better racer…and get rid of the asterisks of which driver raised the most $ to be on the grid and who…if for lack of funds…didn’t race that day.

Good night John Boy…Good night Pa…Good night Mary Ellen…Good night Jim Bob…

*Queue closing theme: Da Da Da Da Da Daaaaa. Da Da Da Da Da DaaDaaaaa….

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5 easy steps (Yeah, right!)

Being a simple kind of guy has really afforded me more than ample opportunities through the years for me to not get wrapped up in a lot of mumbo jumbo. And coupled with the fact I’ve never enjoyed being pigeonholed into being called, or thought of, in a way someone other than me perceived me has afforded me even more time to live my life and do things in my own way. Sometimes…much to other peoples chagrins. It’s also made me a bit of a bullet head from time to time when its come to figuring out my way through a situation. It’s not that I’ve ever thought of myself as better than someone with a college degree hanging on their wall…It’s just that in general that what I’ve found through my life is that there are some very well educated people I’ve known who were dumb as stumps and an equal number of people who speak with the wisdom of Solomon, that got their High School diploma and hit the ground running towards whatever other dreams they had. So I’ve lived a life learning what was important to me from both books…and living my life.

In the past month or so I’ve received a few phone calls from friends who have recently had the bombshell dropped on them by someone they know who had just found out they have MS. And while no sooner had they asked if they could give these people my phone number did I say absolutely they could…my second thought whet immediately to knowing, if they were like me, their friend would never make the call. Not because they felt they would be imposing, but rather because like me they were probably still living in their Holy Crap! moment. And during that time there really isn’t much going through ones mind other than…HOLY CRAP! But it wasn’t until someone approached me who has known me for about a year now on a professional (working level) who had just found out though someone that I had MS that the conversation took the turn to what I want to talk about now.

I tend to get in my own little zone at work, and the nature of what I do now days dictates that at times I’m just pretty direct and while I’m talking to whoever about whatever, there’s a good chance a portion of my brain is off thinking about the next fire to be put out. So when she asked me if it was true that I had MS (She sheepishly told me a little bird had told her, and hoped I didn’t mind her asking) everything else I was thinking about at that moment came to a screeching halt. I still have a kind of inner issue going on with letting the people I work with know what I have…for the simple fact that from that point on I believe in some cases it may add to any disadvantages I have being a member of MS club. But I could tell from the look in her eyes that her reason for asking such a personal question had little to do with just being nosey. So I told her it was very true. But added really quickly, that when it comes to working, it’s a non-issue for me… (A lie that I’ve become very proficient at pulling out of the holster to keep from being treated any differently than anyone else.) It was then that I had noticed her eyes glassing up which made me begin to instantly start kicking myself mentally for breaking what has become a solidly written in stone rule I have about not mixing business with personal. Because in my mind, to be pitied, is something that gives me the willies. I don’t want to be the dog in those Sarah McLachlan ASPCA commercials that is in serious need of saving. So I began bracing for what I thought was coming. And man! Was I wrong.  She confided in me that someone in her family had been diagnosed about a year or so ago with MS and that they were really having a hell of a time with it. A lot of tears, a lot of feeling as if life was over,…and a lot of not knowing what to do. And she wanted to know how I had got past all that because they could not seem to get to the “acceptances” part of the grieving “process”.

And until THAT moment I had never really realized what I have gone through was a bit like…actually a hell of a lot like…the classic 5 steps of grieving you hear people talk about when it comes to dying.

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

I guess my lack of not being pigeonholed skills leave a bit to be desired at times. But never the less these 5 little labels do exist in my life and I’ve been through each of them on my way to being who I am today…I just never thought of them applying to an illness. But in looking at the list in black and white I feel someone with one of those college diploma thingies hung up on their wall may have really been on to something.

So it sounds like maybe a good idea to go back in my little journey to bring it all back to where I am today. Because even though I did get up today when the alarm clock went off and got right out to take on the day, there were days when honestly…I could care less if I did or not. Because a part of me did begin to die on the day I was told I have MS. And its taken some time…and a process… to get to where I am today. One that I hope for anyone reading this will in some way make the BS they are dealing with a little better.  And one that I hope will be funny at times to read, but one that I promise I will be totally honest about in ways that make for a bit of discomfort. Because when the part of the story heads into the depression part of the tunnel…sugar coating would maybe lead to glossing over what for me is the only reason taking that look back. Because that, for many, is a make ya or break ya part of the tracks in the journey. There will be fair warning before I delve into that chapter…Trust me.

The next 5 of my postings on this Blog come with a dedication of sorts. And I’m still a little on the fence as to start them after the holidays or just dive into them in the near weeks to come. But what is to follow is dedicated to the person reading it. It’s to anyone who has, or is going through something that was on the day before they found out, the furthest thing from what was on their mind. It’s also dedicated to a family member of anyone in the same shitty boat. The person you love or care about is going through some pretty heavy shit right now. They still love ya…but they’ve just had a heaping portion Doo Doo served up to them piping hot and nobody likes Doo Doo. So they’re going to put up a fuss about having to eat it. They’re going to look over at your plate from time to time and wish they had some of yours and it’s going to piss them off. Maybe this will help you understand it’s not you they are pissed off at…but rather the memories they have of sitting at the same table enjoying what it is you have. We don’t hate the company…We just hate menu selection we’ve been served. And it may take some time for us to figure out how much ketchup and hot sauce it’s going to take to turn Doo Doo into something we can eat.

So first on my list will be DENIAL. Or what I’ve come to call my “You’ve GOT to be shitting me!” moment.

See ya again soon J

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My manual :)

From an early age, before I even knew there was a word for it, I’ve had a fascination with how things were built and put together. There was a kind of mystery I found about how things worked that would send me off on a quest to figure it all out and if I couldn’t, I could at least sit back and admire what it was that made whatever it was…cool. For me its always been looking past the nuts and bolts of whatever was placed in front of me and trying to figure out the true sum of all the parts it was made from. So it always felt natural for me to have wound up living a life of turning wrenches on things when the need came to fixing whatever it was that was not working to its design specs…or just out and out broke.

As my understanding of how things worked grew I began to notice something that again took years to understand, which is that most everything I worked on or looked at was only a variation of what was once an original design. That’s not to say new technology doesn’t come along from time to time…and it’s not an observation  meant to dim light on whoever came up with the original idea, but for the most part a furnace in ones home today is just a fire that back in the day had to be started and enjoyed outside of the cave. Imagination and engineering has made it possible for us to enjoy life and live in a comfort not afforded to other living things who do not possess the first of those two things and who got jipped out of having opposable thumbs.

Its taken me some time to get to where I am today about all this MS hub bub in my life, but I feel a lot of my understanding of what has happened stems from my years of admiration for all things engineered. I am, after all, the sum of a lot of parts, systems and original equipment. We all are for that matter and as such, there are times when we need some tweeking or alteration.

I’ve un-boxed many a thing in my life and laid it out before me to be put together or installed and to be honest, I’ve always considered that part of the task to be the most mundane of everything I’ve done. And because of that there have been times when those working around me…those who take pride in doing that part of the task…to think I’m kind of an ass hole for my lack of excitement about what I (We) had just accomplished. But my humdrum attitude was not because I held what was just done with distain; it was because my mind had already wandered to how I could have made it better or how I was going to go about fixing it when something on it failed. It was during those times where I feel the magic really happens. Someone other than me designed something that had a purpose…and someday I was going to be called upon to make that purpose work as designed again, or at the very least make it as efficient as it could possibly be. So there’s really no difference between doing that on a piece of equipment I’ve just taken out of a box…and using my imagination and engineering skills when it comes to tweeking or altering a portion of the sum of all MY parts. It’s more personal, but other than that it’s all the same.

I have an illness that has made my original factory condition unable to do some of the things it used to do. But beings that I was designed and built 47 years ago, something was bound to happen eventually. And I’ll be the first one to admit when it did I was in as big of a panic as any customer who ever called me up late on a Friday afternoon begging me to come out and fix what was broke because they were having a party at 6:00 that night and NEEDED everything working. My initial response to what was happening was OH SHIT! And my only thoughts weren’t being projected out much further than the three feet past my own ass. For a guy who always thought of himself as someone cool under pressure…this was totally uncharted territory. Nothing I was reading presented anything I could work with like I was used to reading, and I could not afford to waste time.  And what I found even more disheartening was nothing I read was written by anyone I thought…was like me. Manuals are not subject to opinion in my world. That frivolousness is for the guy sitting at a computer screen in an office someplace trying to come up with whatever new widget he has floating around up in his brain pan. I have a part in me that is busted…and my first reaction was I can’t tell the customer to buy a new one…so it NEEDS to be fixed. Where is my manual? How do I do this? If my hands aren’t working…HOW DO I DO THIS?

There’s been a lot of “modes” I’ve in through the years, but the biggest time waster I’ve ever found myself in was the “Take it day by day” self-preservation mode. Because, what I now know is, in that state there’s not a lot of room for normal thought. No matter how well trained or smart you think you may be. When your thoughts are narrowed down to reacting only to what is in the moment for a sustained amount of time, even actions that were second nature to you before begin to dull. And that happened to me in spades. And for FAR too long. So for me, this has been the biggest part of swinging away at MS in any productive way at all. Getting back to who I was on the day BEFORE the bus hit me has been harder on me than any loss of feeling or eye sight loss…or any other attack my MS has found its way to give me.

I love that there is being research done and that there are a lot of people out there who are working to find the answers to what’s up with all this shit. I do…I really do. But I’m not that guy; and while the engineers and designers are doing their work I’ve got to do the things I know best. Which is thinking three feet past my own ass to keep my equipment working and being as efficient as I can be within the parameters of the things known that I have available to me. The sum of all my parts still work despite some failings…so knowing that I’ll keep reaching into the tool bag whenever I have the need and make whatever adjustments that need to be made so that whenever the engineers DO figure out how to get out of me what I use to get out of me I’ll pull into the pits…make the changes…and get back out there. Because it’s what I do…it’s what I’ve always been good at and because today, when the alarm clock went off, I opened my eyes and I’m still drawing breath. So that means I’ve got laps to run, things to do and family & friends to go hang out with.

So trust your engineers, use your tools, make your adjustments and stay in the race. Because it’s more fun out here, than it is staying behind a closed garage door.

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Friends :)

For what it’s worth, there will always be a part of me that thinks and feels that I really am just an average guy who’s just trying to get through life. A guy who would be just as happy to lead a un-Googalable life as he would to see his photographs hanging in a gallery or to have done something truly great.

That being said…Every year, for the past 6 or 7 since I was diagnosed with MS just a week before Thanksgiving, November for me is a sort of seminal moment time of year. I suppose I’m no different than anyone who has ever sat across the desk from a doctor who has delivered less than stellar news…but I as the years pass it makes me no less reflective on just how lucky I was that day that the person I am seems to be an amalgamation of all the good people…and bad…that have orbited around me all through my life. And that is all any of us can really hope for to bring the out the best in us in the times when the lights dim a bit.

Not really being a pro at this writing stuff, I hope what follows will not be seen as too morose to stay with me till the end of this post…It’s all part of me being a work in progress and some stones take a little longer to polish than others LOL

I live right next door to a cemetery. Truth be told actually, the house I live in is IN the cemetery. (More on that some other time LOL.) But on occasion I’ll take myself out on a walk to see my neighbors and to be honest, I find an odd sort of peace in the quiet around me there. And what has been the most notable part of my walks through the years, was coming upon a fairly small monument off in the far corner of the place where all that is marked on the stone is his name, the year 1898 and…My Friend.

I think this man, who I never met and who passed away long before I was even a thought…had everything.

When I was younger, I had always tried to live my life with the wrongly conceived notion, that what I was searching for and living for was to be the best man that I could be. But what I learned the day I met this guy was that me getting through that day in November had less to do with my being a good man…and everything to do with having been someone’s…Friend.

That word, for me, trumps all other handles one can have bestowed upon them.

Because in that word…there is strength. There is the ability to look into the deepest darkness and still feel warm. In that word, though you may feel pain and doubt, there is buoyancy that can keep you afloat no matter how big the waves. And in that word…is the ability to never be alone.

They build great monument to mans achievements…But in my 47 years…the greatest one I’ve ever seen measured less than two feet high and marked the passing of someone who mattered to someone. And 112 years later he was still teaching that the best things in life are there because we are all…by blood or by happenstance…Friends. And if we have that…We have everything.

To the people who may read this, and to the friends I’ve had though my life…Thank you for everything. And I wish you everything for you during the holidays…And for hundreds of years to come.

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A good time to be sick

A good time to be sick…

A bit of an odd way to begin writing about such a heavy topic, but I feel we truly are at a good point in our history (Human history) to be afflicted with MS.

The day my doctor told me of what was now going to become a part of my everyday being, she showed me a medical text book. And in it was all of about three or four paragraphs under the heading of MS. Now in my time, I’ve read some pretty crappy books, but what struck me most right off the bat about what was just placed in front of me was that basically…I was pretty screwed. While I can’t remember verbatim what the medical text book said, the jist of it was: Get the patient ready for a lifetime of wheel chairs and/or staying in bed, there was no understanding of what causes MS…and no effective treatment known. Holy crap! Not something you want to hear on your first day being screwed. But I think…I truly believe…that my doctor showing me that book, in the way that she did, and her VERY quick follow up in pointing out that the book was a text book from 1953 and that was by no means the way things are today, has really helped me to where I am today.

This brings me to pull up some shade and tap away on the keyboard to call BS on a few things I see happening around me that I feel take some people back to the not so Happy Days of the 50s.

Now, I’m a simple, mechanical kind of guy…always have been. And as such have a firm understanding of how things are designed and built. And I also know that sometimes, only having a little bit of knowledge can cause even the simplest of projects to go south really quick. Which is why every caution should be utilized when taking something on…anything…including the project that is your life. For that project, you need to have ALL the information, but you also need to understand…(and this is HUGE)…Everyone and their dog will tell you this works…or that works…or that’s a waste of time…Do this and you’ll be cured…Do this and you’ll get worse. Don’t get wrapped up in it. Listen to it…but don’t let yourself get all bummed and disheveled because someone decides to come down off the mountain and declare something that you may be doing, to be for shit. And for opinion number 2 of my little musing…Don’t be a DICK! If you see or hear someone talking about how they feel…for example…taking vitamin D is helping them and they are feeling good…DON”T HARSH THEIR BUZZ! OK…it didn’t work for you, or you read someplace about a doctor somewhere who said vitamin D has NOTHING to do with helping people with MS feel better…Shut the F up and keep it to yourself. Or at the very least…No…for that matter…Just shut the hell up! Let that person FEEL good about doing something proactive about their situation. 99% of the time the people I see doing this have no MD after their name and offer no real evidence of what they believe, backed up by any more than a…”Well, I heard someone say that doesn’t work” analogy. This, in my opinion, hardly makes them anyone worthy of dispensing such “knowledge”.

As mentioned many times throughout many of my Blog postings, the self-proclaimed moniker I’ve assigned to myself of being a simple guy does come with a bit of frustration at times. There are some things in life I’ve just come to the conclusion I may never have the answers to. But what I do know…and understand is that, while it’s true we have made major strides with our understanding of how our bodies work, when it comes to our level of Sinicism…the willingness of proclaiming ourselves “All Knowing”, can do as much harm to others wellbeing as if we had never gained anymore knowledge than what was in that text book from 1953. As much as we rely on our doctors today to make us better, a substantial portion of our own wellness has more to do with doing what we inherently all seem to know…to treat ourselves well.

You can boil it down to a sports analogy or any other catchy phrase…No team wins on the merits of one player alone or A driver does not win the INDY 500 (Because there’s no way he or she could run 500 miles, or win whatever the game is, without a crew of people to help get them there.) You need a good Quarterback…or Driver…This is true, but above all else, you need however many other positive people around you…all doing their part…if you ever expect to win. That’s the bottom line.

So in the roughly 50 years since the penning of that text book used for teaching what was then the standard in what was known about  MS…we’ve come a long way. Back then, the doctors would not have had anything to give me to get the feelings back that I was rapidly losing and chances are good that I would have lost the vision in BOTH of my eyes when I had my run in with Optic Neuritis. Every time since being diagnosed back in November of 2006, whenever MS has taken a shot at really mixing up my life, there has been something there to thwart it off. Not back to 100%…100% of the time, but this surly would not have been the case…”Back in the day”. And while a cure for this Bull Shit of a condition has not yet been figured out…I’m thankful every day that the numbers of proactive people out there far outnumber the DICKS who can’t see the good times for the bad.

So to all my friends out there…

We’re lucky. We have access to more means today to help us live well that those before us did. Do your own research along with what is known, to get 100% out of every day we’re not in a box. Share what you know with others, but bandy your words carefully. What works for you…may not work for someone else or vice versa. If someone you talk to really feels as if what they are doing helps…guess what…it does. Medicines, Diet, Faith, Remedies, Exercise, Attitude…they ALL help. And if you belittle or subvert something someone is doing to feel better…

You’re no better than the reason they are fighting in the first place.

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Living positive in a sometimes harshly negative world.

Living positive in a sometimes harshly negative world.

We have the gift of many emotions imparted to us from the moment we enter this world. And just how it proves out to be true that the things we enjoy eating…cake, ice cream and Carney Asada burritos are bad for us if not eaten with moderation, so is the emotion of embracing the negative.

Negativity, while OK in moderation can be a good thing…It is after all, the not wanting of the negative feeling one would get from sticking your finger in a light socket…But if partaken of too much, being negative can suck every bit of oxygen out of the room that everyone needs to use to stay healthy. And for some reason, people find it as easy to go all Eore as they do ordering up Big Macs in a McDonalds drive through on Two for One Big Mac day. Never thinking about what they are doing to themselves or those around them.

Now, I’m in no way going to sit here and bull shit anyone into thinking I don’t partake in the occasional Big Mac…my waist line proves otherwise and there are mornings where the sun defiantly does not shoot out of my ass in a rainbow. And some would even say of me, that my jadedness with regard to some matters is pretty deep rooted…But I will tell you this; My best days…the days where when I lay my head on the pillow at the days end and feel most at peace, are the days where I simply choose NOT to get caught up in the negative BS that may have gone on around me. And just like it is to have to go to the gym…or exercise…or choose a salad over a Double Double from In-N-Out…it isn’t easy. But you can’t be healthy just sitting on your ass on the couch, and you can’t live well always looking towards the negative.

In a little over a month I will reach a kind of dubious anniversary. And while that day plays back in my mind from time to time, the emotions of that day have morphed into somewhat of an odd sort of peace. Surely, life will never be the same…but all in all it could have been SO much more of a game changer. And while I don’t think I’ll ever be able to see that day as a gift…as I’ve heard some call it…I do see it as a day that, in time, made me a better man. It opened my eyes to understanding some battles…just aren’t. That there are many shades of perfection and many things to find wonder in. These are all things a negative man would never see…These are things we all should see.

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Gonna be a fun ride :)

Team ME.

That, at times, in my life I’m a little slow on the uptake has meant very little to me. For the most part it’s cost me little more than a few missed opportunities in the love department…Which upon meeting Deb proved only to be welcomed dodges along the way to meeting her. In fact…when its came through the years of being faced with my Gumpness from time to time…I would always walk away with the thought that to ME it just meant I really DO care about others to the point where the ME was better off having only been looking towards more than just the things revolving and orbiting the three feet space around my own big ass. I would find happiness in the achievements those around me would have, and an odd sort of peace when every now and again I would GOOGLE my name and nothing would come up. I do really think it’s funny though that when you do GOOGLE Scott James that of the first two people who come up are 1. A photographer, and 2. A race car driver. In my book that’s a great representation of a name J

Yep…that’s me. A happy wallflower.

While there may be one or two people out there who would offer up pointing out some of the cool things I’ve pulled off in my time, my masterfulness of all things “wallflowerness” would soon have the conversation rounded back to all the others in whatever the story was about who made it possible for me to do whatever it was they were talking about. And in the end, when the conversation was off me and placed on someone else’s plate…the butterflies would calm back down.

I’ve wrote about the first day the doctor looked over and told me I have MS, and I’ve wrote a bit about the funny little things that have happened along the way. But recently my slowness…OK, some would say denial….to really come to terms with it, has played out in a way that even I can’t play off or laugh away. And while the first words I was able to work out of my pie hole on that BS of a day have ran through my head time and time again since that day (I told her I did Not want this for YOU)…humping 30lbs of camera equipment, cooling ice packs, water misters and power bars around in 106deg weather at the Fontana Raceway got me thinking the “YOU” I had said to Deb meant ME too. I just didn’t get that part back then. But I was feeling it in spades on that day. The person I most wanted NOT have this shit…is ME. And for me to have said that to anyone that day or any day since would go against everything I thought me to be. Oh I made jokes on Twitter about it being Africa Hot and praised the drivers and the crews for their studly-ness doing what they were doing in that heat…but those two days kicked my ass. Out and out honestly…kicked…my…ass. And as I sat there Friday night when I got home going through the pictures I had taken that day it was really clear to me when, and what times, I was losing the fight…or at least having my ass handed to me. Not even the best lens with image stabilization could overcome the shaking my hands were doing. And by mid-morning on Saturday it became very clear to me, while I may be to some…I nervously say in non-caps, an “inspiration”…I am to myself, not the fighter I should be. For anyone…much less ME. And unlike Friday…Saturday I really had to be on my game. Riley was with me and there would be no way I was going to take anything away from his day. But DAMN!

As we walked around the track that day I saw a lot of me in him…something that means all the much more to me for the simple fact we don’t share the same DNA. But being there…seeing him take it all in and at times looking closer at the engineering that goes into one of those cars than just the overall look of them…That was me. At 17 he’s at that very cool age where you know you have a whole HUGE world out there for you, but you have no clue as to just how HUGE…HUGE really is. Then…without giving away the details as to the HOWS…I grabbed his attention and told him to stick close, get in front of me and trust me, and DON’T stop unless I tell him. And with that he found himself out on the grid as the teams set up the cars for the start of the race, with the camera crews, track officials, VIPs and eventually…the drivers. He was out…IN IT. In utter dis-belief he was standing next to ALL of it. And this is what got me…this is when I knew my fight now included more than just playing it off and pretending I was OK. I had looked over to find him…to make sure he hadn’t been carted out of there…and he was looking up at the grandstands. And it flashed me right back to the first time I found myself in the same spot when I was a kid. Just how HUGE the racetrack felt…and how different it is to be a part of something that HUGE. Then, he took a picture of it…and I had to turn away. I have the same shot of the same moment I found myself in when I was young. It’s in an envelope where a handful of other shots I’ve taken over time are kept…that is just for me.

We did wind up getting separated out there, but instead of feeling a bit panicked, I found myself in the calm of the moment and the knowing of he was out making his own memories. And he knew better than to run all buck wild out onto the track or try to sit in one of the cars J And when I found him later he was soaking up some shade behind the pit area, going through the shots he had taken on his camera and texting his mom to let her know what had just happened.  That look…That feeling…that day…is something I will never forget.

Which leads me to where I am today.

In order to fight what I need to fight…I need to be OK with standing up on the podium. I need to go from stubborn determination to putting myself out there in the lights and making the fight about ME. And the only way to do that is to change a way of thinking that I thought not only served me well…but others too. Because you can’t be there, if you aren’t there. What fueled me before was seeing the joy of those around me. What fuels me now is the feeling I get being a part of something I don’t want to leave. There’s still a little part of my brain that views that as kind of selfish…something new for me…but all I know is there’s a new me coming into the fight…and I’m not hiding behind things anymore.

So ladies and gentlemen…in this corner. Weighing in at a starting weight of…(Holy Crap!, can this be right?) 360lbs. With a 54” waistline (Sponsored by Carney Asada Burritos) and a chest that would make an SI swimsuit model blush…Lets hear it for Scott…the MS Fat Boy…Jaaaaaames.

Let it be known…Let it be said. October 1st, 2012 By the Long Beach Grand Prix in April…if MS screws with me that day it’s gonna have to bring it’s “A” Game. I’ve called the shot…I’ve put it out there to the world…And there ain’t no way it ain’t gonna happen.

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Drama…and the MS beast

Drama…and the MS beast

When last we met, I talked about how the stress in our lives can affect our ability to “live well” in the face of adversity. And that the need to step back and rethink some of the ways we look at things can bring about some pretty pleasant changes in our lives. To be able to adapt to the changes we face. In my opinion, is really of the utmost importance to cope with the hand we have been dealt. The inspiration that is all around us for us to rethink our stresses comes with an instant relief…and calm…in most cases. But there are other forms of letting go of stress that at first blush may come with a slight increase of discomfort…at least in the beginning stages…

Like culling the herd of DRAMA.

Now, we’ve all had people in our lives that seem to thrive on the fact…the self-perceived fact anyway…that life would not be complete without them swooping in and making some big deal out of something that probably wouldn’t even exist…had they not deemed it so. And the stress from having these types of people around you comes from the dread you feel every time they walk into the room or you hear their voice on the other end of the phone when you answer it. They are the people who…as the saying goes…”Suck the life right out of the room”. And that life is something…HAS to be something…you hold dear. Not only for you, but for the sake of the people you hold dear in your life that you want to be there for.

I’ve found over time that for the most part, 95% of the people who need culling from your herd are going to be pretty easy to cut out. And as much as you won’t miss having them around…they won’t miss you either. You’ll simply just be added to their list of people who are either ass holes or evil near do wells they think everyone in their lives are. And when it comes to them I’ve never had much to think about it than So Be It. There’s a finite supply of oxygen in this world…and that they no longer glom onto to mine is A OK with me. But for that remaining 5% it can be a bit dicey. And they usually take the form of family and or long time “friends” who, but for the title they hold with us, were always given a pass due to history. It’s a history that has now changed, and now comes with a heightened sense of how precious the air around us now is.

It’s these 5% that will be the hardest to separate, and will…at first…bring a bit more stress into your life. But they are usually the biggest users of the air you breathe. And they will take much pleasure in telling everyone around them who will listen, just how big a Doo Doo Head they think you are. Some may even be so Bat Shit as to mention they hope…(yeah, some people even go this far)…that you get an even bigger dose of what is ailing you, or that you are sick because you are such a Tool for not being there “for them” in whatever Drama Du Jure they have going on. It will be these dorks who will prove hardest to remove. But doing so will bring about the most positive change to your life. The bottom line here is…having negative people in your life is NOT conducive to living a good life. It’s just not. In my case…I have my own fight going on with something that is way bigger than me and it requires, at times, my full attention. Because keeping me well also keeps my family well. But even if blessed with good health, no winning team has ever been made up of a group of negative people thrown together. It just doesn’t happen that way.

Now, for these 5%, there are two schools of thought as to the best way to separate them from what you should be thinking of as Team Positive You. For me, the preferred method I’ve come to realize is the “Hair be damned…rip the Band-Aid right off” way. And here’s why. There’s going to be a level of discomfort involved…so just get it the hell over with. Over the years I’ve just found that pulling slowly only results in two things…1) It only prolongs the pain and 2) Drama people have a way of grasping at the edges as they circle around the drain and will say things (anything) to play with your emotions to get you to put the plug back in. Given enough time, the result will still be the same…they will be gone…but you’ll drain your batteries even more by giving them “That one last chance”. So while that yank of the Band-Aid might at first smart a great deal…it WILL subside much faster than waiting it out and pulling at it a little more…later.

For the special category of the 1% of the 5% that is reserved for family members (This number in some cases can make up the entire 5%) the need for removal is every bit as needed…but can be a bit dicier. Dicey in that there will inevitably be a family get together…and they will without doubt bring their Drama Bag with them. You have the high ground here…they think (in their head) you think you’re better than they are. Just keep calm and interact with them as you would a cousin you only meet at Thanksgiving time with. Just because they are “family” does not mean you have to hang out with them and fain interest. Don’t forget that the whole reason behind you culling them from your team was so that you can live well. And if it gets to a point where you really feel you have to leave…leave. But do so in a way that doesn’t give them an IN to throw their fit…and they will want to throw a fit. But your calmness will only amplify their bat shitness to everyone else around. Fight with a fool…and you look like the fool.

Everybody has their own person limit when it comes to the drama they want to be around. And I’ll freely admit that since my diagnosis with MS my limit is next to none. Most of that I think is due to the fact, I now have a huge portion of my life I have little control of. But in thinking back over my life (Something of which is a pretty natural thing to do given the circumstances) my lack of drama patients I feel is, in a goofy way, something positive that has come from living the life I now live. Every day is something not to be messed with. And drama is…messy. Negative people are…messy. MS is…messy. The latter messy, it would seem at this point in history, there is nothing I can do but fight it. But as to the drama and negativity…I can and will (We all can and will) more than do something about it. Some people will be bent as hell because of this wellness plan…But I owe it to me, my family and my friends who enjoy life to be the best me I can possibly be.

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Winning means not quitting

Stress…and the MS monster.

For those of us who have had that game changer doctor’s office visit, there is no deigning life from that moment forth will be different…will be stressful. And how we deal with and handle that stress will make all the difference in the world with our ability to “live well” with the shit sandwich we’ve been served up. And over the last five + years I’ve done a lot of thinking…At times WAY too much thinking…and while MY symptoms are less than some, and worse than others, the one common thread we all share (And this includes people with Cancer or any other shitty deal) is the additional damage to us that comes with being STRESSED out about it.

If I were to chronicle the list of everything I get all bent up about…especially about the things happening to me since November 2006…this Blog post would take about three or four days longer to get posted and to some would just seem like a lot of bitching. And in the grand scheme of things, some of my concerns when compared to say…starving kids in Darfur…would seem a bit petty. But I don’t live in that world. Nor do I live in the skin of any other person who has what I have.  I’m just dorky old me.

Since that day back in 2006 when I found out I was not “normal” anymore, I’ve had two pretty dark moments. The first of which I didn’t make it through because of some profound belief in a God, but more because of a skewed perception I had of being stubborn and not wanting to loose. A perception I’m glad I had at that moment…but one I’ve come to realize over time is just wrong. The other moment…well…that’s what has me here where I’m at today.

The “other one” for me was the day I said to my mother…and truly believed…that I wished I had got Cancer or something like that, because at least that was a fight I could do where there was an either / or outcome. I could fight it hard and WIN…or fight it hard and should I lose at least it would be over…and I could rest. Pretty fucking stupid, huh? My stress level had built up to the point where I was wishing for something others were begging to never have to deal with. (Wishing for something that for those left behind by those who had lost their fight, would have punched me for saying something so stupid.) It was THAT moment in my life…hearing the hurt in my mother’s voice…that lead me to thinking and realizing just what a jacked up view of winning that I had.

Winning is not just a total up on a scoreboard or a notation in a record book. Winning (*And a side note here…or more of a fuck you to Charley Sheen for putting a crazy spin on the word “Winning”) Winning is the not quitting we all put into not losing…even if we lose. Winning IS the fight.

And there are examples of this everywhere…

There’s a race driver I’ve followed since her days racing in the Indy Lights Series named Pippa Mann. She’s pound for pound, in my opinion, one of the best drivers out there today…and she’s yet to strap on her helmet in 2012. Now, for those who know me, know when it comes to Indy Cars…I’m a bit of a geek. Having grown up around it I have a bit of an understanding of just what it takes to get to the level of where these drivers are and just how hard it is to do what they do in those cars. For me…what makes watching them do what they do so enjoyable is the fight that goes into it. Not just from the physical aspect of it (*another side note here…They are probably the most fit athletes in sports) but mentally they just have to be there every second. If the car’s not handling right…they have to work with it. They make slight adjustment from inside the car, figure out the right moments to make the next move to pass whoever’s in front of them, talk to their crews on the radio to figure fuel consumption, stop on a dime in the pits for tires and fuel, head back out and haul ass, stay out of trouble, make more adjustments to the car…all while traveling the length of a football field in a second. Football players have time in between plays to relax and breathe…Baseball players sit in a dugout between innings eating sunflower seeds and spitting. Not these guys. It’s Game On! From start to finish. In Pippa Mann’s case she ran the whole 2011 race without a working water bottle…no way to drink and stay hydrated throughout the whole race. Did she quit, or slow down?…No. Us guys joke about having steel balls when we do stuff like that…In her case it took steel ovaries.

What gives Pippa my pound for pound best driver status has been her 2012 season is the fact she stills lives as a driver. When sponsorship money…and a series in transitional year equipment wise…left her on the outside looking in at a world she loves she never gave up, and isn’t giving up on the 2013 season either. Following her on Twitter (Yeah…I AM a real racing geek) at @PippaMann for me has become more than getting a look into the behind the scenes goings on of auto racing…It’s more of a look into what has helped me redefine my view with regard to me winning my own fight. Winning…is the never giving up. Seeing (or reading) a win, is reading one of her posts about picking her ass up and heading off to the gym to take on the “Dreadmill” as she calls it. Or hearing how she’s heading out to a racetrack to give garage tours at an Indy car event or work with Glass Hammer Racing mentoring other girls who are trying to be the next Pippa Mann…anything to stay involved in the world of what she loves till someone smartens up and sponsors her so she can strap her ass back in a car…that’s what winning is. Winning is NOT quitting.

As a fan of Pippa Mann (The Race driver) I feel as any fan of any person deemed “fannable”, that she will someday cross the yard of bricks having just won the race and have her face cast into the Borg Warner trophy for all future fans to enjoy. As a fan of Pippa Mann (The person who never gives up) I’ve been able to find in me a newer…better way of thinking. Every day I get up and fight the fight, I win.

We all have this in us. Some, like me (thick skulled) take a little longer to learn it that’s all. But in my redefining of how I look at my fight has brought my stress levels back to what one could call “being normal”. And normal is something I haven’t felt like in a long time.

So now my Blog thingy has once again morphed into a direction I had never figured it would, and there are examples of this new attitude of mine out there everywhere. And once found…should be pointed out. So this will be my way of helping others who, like me, have said or thought some pretty screwy things since our doctors visit. MS is shitty cards to get dealt…So is having your water tube fail at the beginning of a 500 mile race. But you keep your foot in it and keep doing what you love to do and know in your heart that while you may not cross the finish line in first at the end of that day, the fact you ran…that you didn’t give up…means someday you will.

When my life is all over, I’m gonna have one hell of a long list of people to thank. Between now and then…I hope to thank many of them here J

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