Thursday, July 28, 2011

The God Complex

Creation of the Sun and Moon by Michelangelo, ...
Image via Wikipedia
What follows has nothing to do with religion.

At this point in the evolution of my blog, I’ve managed to refrain from political commentary. Other than complaining about mind-numbing political ads, I’ve stayed off my soapbox (it’s not wheelchair accessible anyway). For one thing, I risk alienating at least 50% of my potential readers by spewing any political rhetoric, thereby detracting from my core message about living a contented life as a disabled person. However, I believe I can discuss the general state of politics without being political- without revealing if I am a democrat, republican, or something else altogether.

As I wander aimlessly through my day-to-day existence, I find myself drawn to certain types of people. I believe that there exists a continuum between those at one end of the spectrum who are open-minded and easily confess their ignorance versus people at the other end who are resolute in their convictions and believe they possess the answers to even the unanswerable questions. If this were a numerical scale from 0 to 10, I would be a solid three (closer to the wishy-washy end than to the know-it-all end), and would be most interested in spending time with other 3’s (plus or minus about 2 points, you know, give or take).

People can be open-minded to the point of being absolutely spineless, a 0 or 1 on my scale. The more intellectual folks in that group can make you think twice about any subject, but come off as a bit tiresome after a while. But I am more wary of, and more easily bored by anyone who thinks they have all the answers. So what is it about our democratic system of government that compels us to elect only politicians who are solid 9’s and 10’s, or at least pretend to be?

Our world – our economies, our societies, our environment – is so complex, isn't it absurd for anyone to claim to understand how it actually works? Yet, if a politician so much as changes her mind once or twice in her lifetime, or admits in public that he is undecided on an important issue, then we label them indecisive and disqualify them from public office. How did we get to this point? We are the voters, after all, so we have no one to blame but ourselves and our self-deluded concept that people who act as if they know everything actually do.

People who score high on my makeshift scale can be said to have a God Complex. They believe they have the answers to questions that are (currently) unanswerable by humans. Why can't we elect candidates who humbly admit they don't know the answers, but who are intelligent and open-minded, and will carefully and thoughtfully engage in trial and error analysis until an optimum, or at least acceptable solution is reached?

I will tune in to the weatherman, I will quaff a beer with the science teacher, I will vote for the politician who admits that they don't have the answers, but enjoy pondering the questions- the person who will only take action based on deliberate and unbiased consideration of the best possible information, but will course-correct as new evidence emerges. I'm acquainted with several of these people, but none of them would be crazy enough to run for political office. How do we change that?

Winston Churchill's famous quote is appropriate here: "It has been said that democracy is the worst form of government except all others that have been tried."

Much of our democratic political system is utterly insulting to our intelligence. I've mentioned the political ads in an earlier post, and here I've spoken to the fact that our candidates are not allowed to be flexible and thoughtful. So I have to believe that someday, probably later rather than sooner, democracy will evolve into something better than what it is today. At least I hope it does.

This rant was partially inspired from a Ted talk by Tim Harford. Please take a few minutes to listen to somebody who expresses himself a lot better than I do:








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Wednesday, July 20, 2011

CCSVI- My Journey Comes to an End

“Operator, give me the number for 911!” Homer Simpson

Yesterday, I visited Dr. Gary Siskin's office in Albany, New York to follow-up on my March CCSVI treatment.

I just did a count. This is my 40th CCSVI post. Don’t believe me? Click here. For my new readers, at the bottom of this post* is a brief overview of CCSVI, and my involvement with it. For the rest of you…

On the drive to Dr. Siskin's office on Monday, I posted the following status update to Facebook (don't worry, my wife was driving):
“In Albany for CCSVI checkup tomorrow.”
In retrospect, that was a mistake. I knew that this was a routine visit to simply confirm what I had expected all along – that CCSVI treatment didn't work for me, and that I've exhausted all reasonable avenues for treatment. I only meant to indicate to my Facebook friends what I was up to for the next couple of days. The comments to my post surprised me, although they shouldn't have. People wished me luck. They were hopeful and encouraging, even some with prayers for a positive outcome. I’m still learning how to maneuver in this new world of social media, but the lesson I learned on Monday was that you don't put up a message that is so cryptic that it causes your friends and loved ones to have false hope. If I had it to do over again I would not have posted at all, or maybe I would've posted a YouTube link showing cute kittens.

On the other hand, it certainly is nice to know that so many people care and made the effort to wish me well. I am blessed in that way. Thanks for all of your supportive comments, and I apologize for leading you astray.

But the bottom line is this. Dr. Siskin and I both agree that I fall into that one third or so of MS patients who show no positive benefit from CCSVI treatment. His ultrasound examination on Tuesday revealed that I no longer have poor blood flow in my jugular veins; I no longer have CCSVI. Yet, I’ve seen zero improvements in my condition in the 16 months or so that I've been treated (March of 2010 by Dr. Sclafani and March of 2011 by Dr. Siskin). In fact, my condition has continued to deteriorate at about the same pace as it has for the past 10 years. Dr. Siskin politely and reluctantly discharged me from his care.

03 07A quick aside for some of the more seasoned CCSVI readers – I realize that the ultrasound test does not measure blood flow through the azygos vein. However, both Dr. Sclafani and Dr. Siskin thoroughly ballooned the azygos, even though there was not strong evidence of a restriction.

And so ends my personal CCSVI saga. I need to move on and stop chasing something that clearly is not the answer for me. Sure, I'll continue to monitor the progress of CCSVI treatment and research, and if new information comes to light that may impact my situation I won't hesitate to revisit CCSVI. But my instincts tell me that this will be years down the road, if ever.

I remain optimistic that CCSVI is a significant factor for many patients with multiple sclerosis. I will continue to support the MS community as we search for answers about exactly how CCSVI and MS are related, and how MS patients can benefit from treatment.

In return, all I ask from the CCSVI community is that you don't forget us- the significant population of MS patients who simply don't benefit from CCSVI treatment. Don't lump us in with the naysayers who consider CCSVI theory to be bogus. That's not it at all. Also, please don't make broad and unsubstantiated statements like "CCSVI is clearly the root cause of MS," or "nearly every MS patient who is treated sees some benefit,” at least until more research supports such statements.

Don't worry about me. I'll be okay. If you need something to worry about, here's a list of ideas:

· Republicans taking over the Senate
· Democrats taking over the house
· just about any politician you've ever heard of being elected president
· global warming
· the Yankees signing the entire starting lineup of the American League All-Star team
· your cell phone going off at a funeral, with your AC/DC “Hell’s Bells” ringtone at maximum volume
or, my personal favorite…
· arriving at work only to realize that you forgot to wear pants

*Quick overview of CCSVI:

Dr. Paulo Zamboni, an Italian vascular surgeon, has proposed and supported the theory that restrictions in the veins that drain the brain and spinal cord have a significant causative relationship to multiple sclerosis. In fact, when he used balloon angioplasty to treat these restrictions, he found that many patients not only stopped getting worse, but actually started getting better. Thousands of patients around the world have since been treated by a variety of clinics. For a thorough discussion by a panel of expert physicians, click here.

I've had this treatment twice – once in March of 2010 and more recently in March of 2011. CCSVI theory has stirred significant controversy in the MS world. Many patients and advocates demand meaningful research and immediate availability of treatment. The neurological community, the doctors have traditionally treated MS patients, are highly skeptical and either dismiss CCSVI theory altogether (which troubles me greatly), or want to proceed at a very deliberate pace, delaying benefits for patients by many years (which I don't like, but I get).

For more information on CCSVI, visit CCSVI Alliance.

Sunday, July 10, 2011

My Personal “Going Out of Business Sale”

I've owned more than my share of man-toys over the years. The minimalists among us might argue that this is nothing to be proud of. But I’d like to think that I owned my toys for only the best of reasons- to help me live my life to its fullest. I never felt like I was flaunting my financial success, or in any way being wasteful or frivolous. But that's just my take on the situation.

Over the last three years or so, I've been parting with these man-toys at a steady pace (I mean no offense to my female readers who also enjoy such items…it’s just that in my world these are principally male extravagances). As my MS has progressed, especially in my arms and hands, I've divested myself of the toys that I can no longer enjoy. I've held onto them as long as I could, employing adaptations where possible, until it just didn't make sense anymore or became a safety issue. Below is a brief summary of the items I've parted with:

Golf clubs- I had a love/hate relationship with this sport, but I did have one amazing shot, and wrote about it here.
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Hunting Camp Lot- We sold our original hunting camp and purchased property to build a new one, but ended up selling the land so that I could buy my iBot wheelchair (arguably a crippled-man-toy). I still enjoy some limited deer hunting, which I wrote about here.
DCF 1.0











2 Snowmobiles and a covered snowmobile trailer- Snowmobiling was one of my greatest passions, and I wrote about it here.
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2008 100




2008 104












4WD, full size pickup- I loved this pickup, but after a while I couldn't manage to get up into the seat anymore.
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Pop up camper- This camper and others before it were a significant source of good, wholesome family fun. Eventually I couldn't get up the stairs into the camper, so we sold it.
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2 ATV’S and a double trailer- I used these ATV’s for recreational riding with Zach and for deer hunting. They gave me passage into the wilderness.  I sold them two years ago when I couldn't get on and off of them anymore, and had difficulty operating the controls.
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Lawn Tractor- I just sold my lawn tractor this morning. Our lawn is not well suited for a big mower, but we bought it anyway when we moved into this house so that I could enjoy cutting the grass. Each year it became a little more difficult for me to get into and out of the tractor. Yesterday Kim and I attempted an overly-elaborate and ill-conceived boarding procedure that nearly resulted in her throwing out her knee and me crumpling to the floor. But we persevered, and I mowed the lawn one last time.
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2 kayaks- I haven't sold these yet, but neither have I taken them out in two years. My kids keep promising that they’ll use them; I keep threatening to sell them for lack of use (sell the kayaks, not the kids…they are already 18+ years old).
2008 604











Again, some would contend that ridding myself of all of these material possessions is not entirely a bad thing. Simplifying my life and impacting the environment less is to some extent noble. The other consolation has been the influx of cash that I've experienced each time I sold one of my toys, usually on Craigslist. This is not to say that I've been happy or even indifferent about losing the ability to enjoy any of these activities (except maybe golf), but the cash takes a tiny bit of the sting away. Imagine if I was required to pay to relinquish these life passions.

I must say that I'm pleased with how I've coped with these losses. I’ve not allowed myself to spend too much time lamenting my misfortune. I've simply accepted my fate and moved on. Despite these disappointments and others not mentioned here, and with the support of family and friends, I've continued to live a contented life.

Oh, there’s one more toy to discuss:

Handcycle- I've ignored my handcycle all spring and summer. I keep coming up with excuses, like it's too hot or too cold outside, or I'm too tired or that I need to save my energy for an activity later in the day. But I know what's really going on. I can’t face the possibility that, like all my other toys, I just can't play with this one anymore. My beloved handcycle has been a savior for me throughout my disability. I wrote about it here.
2008 454 bike











I have a plan. If I continue to simply avoid my handcycle, then I won’t be let down, hence preserving the notion that I can still ride it whenever I please. Up to this point in my ten-year MS ordeal I’ve not allowed myself the indulgence of denial. Maybe I will, just this once.

Tuesday, July 5, 2011

25 Years

25 Years ago today I validated the best decision I ever made, and became married to the love of my life, Kim.  I still can't believe how fortunate I am.  I love you honey.  Happy Anniversary.

To read more about our courtship, click here.