Category Archives: Success

Happiness Is But a Bike Ride Away

 

Happiness has a way of multiplying every bit as fast as realizing things can go wrong, but it takes training our minds to realize it.  One of my take aways from a collaboration class a couple of weeks ago was to realize the human predisposition is to remember the tragedies and mistakes more often and more vividly than our successes.  Heck, I remember my failures and heart aches far more vividly than my first kiss. It is not as if we have no successes.  We just take them for granted to the point where we have become hard wired to do so.  It is only with training our minds that we can overcome the inclinations to focus on the negative. 

Something as simple as walking was once described to me by a psychologist as “taking a series of control falls towards our destination.”   The moment we start thinking of walking as falling, it no longer seems so easy, and for roughly three quarters of people with MS, it is not.   Have I mentioned how lucky I am?

Still, we can see progress and success if we look for it.  How many of us think about riding a bike as a huge success?  Well, for this week it is the biggest success in our house.  A road roughly a mile and a half without training wheels.  If this seems commonplace, consider two weeks ago one could have eaten a meal off one of her training wheels because it never hit the ground.  She always leaned to one side.  Then consider riding a bike without training wheels is one the first things A has succeeded at doing before her peers.  Who wants to be the last to learn every skill the rest of us take for granted. Of course,  A really wants to show friend how she can ride now and help teach her to do it too.

 (For MS stuff continue to the next page)

From the diagnosis:

 

To the everyday living:

 

Have I mentioned how lucky I am?  I ran across this site last week, and according to their study, roughly three quarters of MS patients have trouble walking.  Now that I am back to running at lunch, I am trying to figure out how and when to try to run another half marathon or even attempt to run a full marathon. Running a full marathon would be another accomplishment to cross off my bucket list made 8 years ago while waiting to hear whether the results of my MRI indicated MS or cancer (probably testicular according to the initial report).

On the scary side, 88.8% of MS patients have health insurance.  Still, even with this, 47.4% of MS patients have used manufacturer-sponsored copay assistance program.  This speaks volumes to me about our healthcare industry where even with insurance; the patients still cannot afford the medications.  I know I would probably not be able to afford Tysabri without the assistance, and I have good medical insurance (probably top 10% of health insurances in the U.S.).    I have thought for a long time the extremes should not dictate how a problem is perceived, but doesn’t this mean the normal practice to maximize profit is to overcharge up to the point where most cannot afford to buy.  Then negotiate down to a price where the patient is thankful to be able to buy the product at a price to which nobody would have otherwise agreed to pay.  When one company with one product does this, then everybody simply goes with an alternative.  The question is how did we get into a situation where most of the treatments for a disease affecting hundreds of thousands of Americans are stuck in this Economic model?  Of course the bigger questions are “is there a way out of it?” and “how do we take it?”  The bigger questions are for both individual patients and society as a whole.

As I start thinking about these questions I realize I would much rather be riding a bike or going for a run.  Anyone remember “V for Victory?”
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Dare To Be Wrong

On the radio this week, I heard a story I’ve been unable to find any where, but it goes right to the point.  When you see something wrong and think you might have a solution, pursue it.  In the story, the owner of a hotel chain found himself dealing with a host of disgusted patrons one morning.  It seems the assistant manager on the night watch noticed a bug problem right outside the hotel, and every time a patron opened the door, bugs were getting inside.  The problem lasted all summer, every summer.  Having been a fisherman, he went out on his own and bought catfish to stock all the pools around the hotel.  He figured the catfish would eat the bugs being born in the decorative pools around the hotel.  However, what happened was a disaster.  The cats and racoons of the neighborhood ate very well and very messily that night leaving bloody fish carcasses all over the place.  On the positive side, the owner recognized an employee trying to solve a problem and promoted him.  What’s more he started an annual award in his company for employees trying to innovate, and the award doesn’t care about the end result, only the quality of the idea. I wish I could find the link for who told the story.
As kids, we innovate all the time.  We find the tipping point of the blocks.  We curse when the car we just built won’t run because the wheels don’t touch the ground.  We try to find short cuts in all of our chores.  This is normal, this never accepting the world as we see it.  Maybe it is because we haven’t quite determined how the world really is yet.  However, somewhere along the way, I think many of us become concerned with our success rates and the costs of our failures.  We start to cringe and look for failures.  “How could this be right?  I have peaces left!”  Somewhere along the way we begin to think those left over peaces mean we didn’t follow the directions  and jump to the conclusion the extra peaces are a bad thing.  What if  instead they are just extras to be used for some future project, a bonus?
I love when O invents a random “alien language translator” so he can talk to his “other birth parents.”  He is after all, half alien.  I love when A starts to change music to match our discussion’s topic.  Some of them are humorous even if sung at a very high pitch and decibel.  Even K has found ways to beat a syncopated rhythm with what music she hears.  None of this changes the head pounding noise produced, but that’s my problem.  I want to do as little as possible to rein in these behaviors.  These fits of imagination are our future.  It may not be anything they create, but I’m loathe to do anything to put them in a culture where being wrong has huge social costs.  How much of our life today comes from the imaginations of previous generations?  Tractor beams are no longer star wars born mythology, and the communications devices from Star Trek are now our phones.
To my mind, our willingness to invest time and money trying to solve problems we see rather than just live with them has been the calling card of American culture.  We think of Trump as a successful business man despite the times he filed for bankruptcy.  We think of Dan Snyder, owner of the Redskins, as a success because of the money he made without ever thinking of the time he and his family spent living out of their car while building his business.  Success comes from being willing to be wrong often enough to find great instances of being right.
(More on Next Page)
With medicine, I think the U.S. medical field has been so successful in part because of an embrace of the scientific method where we test the theory of “this medicine does works better than nothing/alternative therapy.”  We, as a society, invest millions and then spend many more millions trying to prove ourselves wrong.  I’m not saying we do this optimally, but we do it.  The hard part is figuring out where we as patients fit on this model.  Are we willing to accept what we have now as “good enough” to look no further?  MS research has grown by leaps and bounds in recent years, and some are even beginning to challenge the basis of how we answer the basic question of “does it work?”  Do we look at spots on an MRI or patient disability progression and over what time period?  I am of the opinion I want to try the most effective therapy available, even if there is no published data on what taking it will do for or to me over years.  As it stands now I have taken Tysabri for 6 + years, and there doesn’t seem to be a cohort in front of me to tell me what I could expect in years 7 to 10 or even 30.  I guess I’ll find out.
With my kids, all of them have medical issues.  We as a family are constantly trying to find what works and doesn’t with each kid.  Each is a miracle doing far better than any should have expected when they came into our lives.  I hope they never stop trying to live better and grow their knowledge base of what works or doesn’t for them.  Lord knows some of the therapies suggested, imagined and tried have failed, but some have stuck.  I don’t have many doubts one or more of them will grow to surpass all I have imagined for them.   That said, providing them with the building blocks of health and knowledge they will need sometimes feels like a task for Sisyphus.
 
A bit of Greek mythology: Sisyphus was a Greek king who was chained to a boulder and condemned to push it up a hill…every day…only to have it roll back down, forcing him to start over.  It is said in various myths he tricked various beings to take his place including Thanatos whose job it was to bring the dead to the underworld.  I wonder if his real mission wasn’t to push the stone to the top but rather trick some one to take his place.  The story was told to convince listeners of what may happen if they cross Zeus or try to challenge anything in the natural order.  Even kings of man can run afoul of the eternals.  Still, I wonder if perhaps Sisyphus who was thought to be doomed to a torture, never knowing happiness again and only feeling frustration, was able to still find happiness every time he found a way to change the world as he knew it rather than accepting the way it was.  Even if his success was fleeting, he was able to change his world.  Isn’t this all any of us can hope?
Who knows, maybe we too can hope to find joy in the world going round and round?
(Video of picture coming soon)
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Side story from this week for any who doubt why it’s important to be nice to customer service people:
On Mon., I got an email saying the computer I had just bought at Costco was going to be delayed in shipping due to a much higher than anticipated demand.  The estimated ship date was the end of March.
On Wed., I figured I would write and offer to pay the extra for Microsoft office version they were selling, but I offered to pay the $50 I expected to pay away from Costco.  15 min. later I got an email saying that item was sold out too.  I expected as much since it is the same computer.  I wrote back thanking the customer service agent and saying I figured it was worth a quick email as I was now only out 2 quick emails and had gotten good polite customer service.  I said I figured this was a good trade for me.
On Thurs. morning, I open my email to see a notice my computer has shipped, 2 weeks early 🙂
Lesson of the morning/day: Be nice for goodness sake.
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Final PSA:
I really hope this film comes is released:
 http://www.wheniwalk.com/
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