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April 2008

April 30, 2008

Our Bon Voyage

Our first order of business is my absence from this blog over the past couple of weeks.  Every so often, the various bits and pieces of my life conspire to present me with projects/tasks/stuff that needs to get done.  This has been one of those times.  The good news is that none of the projects/tasks/stuff had to do with Jeanne's MS.  The bad news is that these other areas of life have kept me from posting regularly, and for that I apologize.  Mea culpa.

I got a phone call today from one of my closest friends.  He had just returned from a trip to Paris and he gave me a quick rundown of his activities.  Shopping on the Champs-Elysee, dining in a Michelin 3-star restuarant, visiting Versailles for the day...just hanging out passing the time at one of the great neighborhood bistros that populate Paris.

As I listened to my friend, I couldn't help but think about the trip to Paris that Jeanne and I were fortunate enough to take.  Jeanne was diagnosed with MS in 1997.  At the time of her diagnosis, we were told she had "secondary-progressive" MS.  As I quickly tried to learn as much as I could about MS, I realized that this diagnosis was one of those good news/bad news things.  The good news was that during the "relapsing-remitting" phase, Jeanne's relapses were so minor and separated by so much time that she never knew that she was sick.  The bad news was that given her "secondary-progressive" status, Jeanne's symptoms were likely to progress more quickly now with less and less "bounce-back" afterward.  In other words, her disability was likely to increase.

At the time of her diagnosis, Jeanne and I had been married for six years.  There were still so many life experiences that I looked forward to sharing with her.  But as I observed the progression of Jeanne's symptoms, I became concerned that she might not be in the best position to enjoy some of these  experiences if we left them for later in life, as I had originally thought we would.  And so I made the decision to front-load our lives together with as many of these life experiences as I possibly could manage.  This wasn't a unanimously popular decision.  Jeanne's family, for one, felt that it would be more responsible for me to save our financial resources for the future rather than spending money on vacations.  I didn't agree with them at the time, but I understood their point of view.  Over the past several years, I've often reconsidered this particular decision of mine. 

In 2000, we flew to France.  We spent a week in Paris and then went on to experience the south of France.  In prior years, I had travelled almost constantly for business and I had accumulated hundreds of thousands of frequent flyer miles.  I was able to cash in something like 220,000 of these frequent flyer miles and arranged for us to fly First Class to France, complete with lobster for dinner & an almost-constant supply of Dom Piergnon champagne.  Rather than staying in a hotel, I arranged for us to stay on a deluxe barge on the River Seine.  The barge was owned by an ex-patriate American couple and they ran it as a very exclusive bed-and-breakfast.  They only accommodated one couple at a time, and while on the barge, your every wish and whim was catered to.

We enjoyed dinner at a Michelin 3-star restaurant.  With my assistance, Jeanne was able to walk down the Champs-Elysee.  We visited museums and galleries.  We saw the Eiffel Tower...although it was a small antique merry-go-round that we came upon across the street from the Eiffel Tower that seemed to captivate Jeanne's attention. 

As we moved our vacation to the south of France, we hung out at small cafes commanding magnificent views of the Mediterranean.  We walked through the Casino in Monte Carlo one evening, half-expecting to find James Bond playing baccarat.  The closest we came was stumbling upon Robert Wagner playing blackjack.  We had dinner under the stars in an incredible bistro.  We enjoyed every moment.

Could we have waited and taken this trip later than we did?  Yes...but we couldn't have waited for long.  Now, Jeanne is bed-bound.  Even wheelchair travel would not be practical for her today.  And if we could get to France, Jeanne would be much more limitd in what she could exprience there.  Her swallowing difficulties would have meant that we would not have shared some amazing meals together.  Her vision problems are to the point that she could not have appreciated the magnificent art that we saw at The Louvre and The Picasso Museum.  And while our barge accomodations were luxurious, they weren't close to being "accessible."  Our trip had to happen when it happened.  (I've found that truism works equally well for the rest of life, by the way)

Listening to my friend, I felt a bit of sadness as I acknowledged that the days of travel and discovery have passed for Jeanne and me.  But then I found myself smiling as I savored the memories of our trip.  Was it the right decision to go when we did?  Today, I finally know the answer.  It absolutely was.

April 07, 2008

WALK MS -- WE CAME, WE WALKED, WE CONQUERED

I spent yesterday morning in the company of thousands of participants at WALK MS 2008 at the Los Angeles Rose Bowl.  Families, friends, colleagues from work, classes from school, teams, church groups and every other iteration of "support" came together to Join the Movement, demonstrate their support and raise money for the ongoing fight against MS.

The common thread running through the crowd was that most everyone knew someone affected by MS.  This was illustrated by the high incidence of "I am walking because..." t-shirts that each told an individual story, even in only proclaiming someone's name.  Silent testimony was seen in the photos that people carried on their backs or attached to their signs.  And then there was the brave and unrelenting effort of those walkers who carried markers of the disease itself.  Imagine doing a 3-mile walk while using a walker or a wheelchair.  Yet each participant felt compelled to add their effort to the collective.  And in numbers, we all seemed to find power.  And the nightmare that is MS was beaten back yesterday by the determination of each of us.

I felt proud to be out among such a noble crowd.  Their courage became my courage.  Their determination fortified my determination.  Their spirit fueled my spirit.  And I left at the end of the event knowing that we are closer than ever to finding a cure for MS.  That's the power of a group.  Its collective voice can be louder than the sound of just one voice.  Its collective heart can be bigger and stronger than any one heart.  And its collective power can outshine the power of any individual. 

MS attacks individuals...but there's much to be gained in fighting back as a group.  It's too bad we can't all get together and walk every week or every month...but at the very least we can get together through venues like this blog.  By reading and sharing and commenting we can each benefit from our collective strength.  I'm up for it...and I hope you are too!