I’m wicked spoiled...

...this much is obvious.  Over the past week I’ve had an opportunity to reflect on this a little.  I’m healthy and I live in Boston and until recently these two facts have been utterly wasted on me.  The only barriers to my running the Boston Marathon are in my head.  This is in stark contrast to the barriers the patients of rare diseases such as Gaucher, Pompe and the myriad other diseases that NORD supports face.  The woman for whom I’m running the marathon has had multiple surgeries to repair the damage Gaucher has done to her bones but throughout all of this, she remained far more active than I was for at least a third of my life.  She remained undaunted by what Gaucher was doing to her and continued to be active and even exercising.  When I think of this, I’m humbled beyond words and I’m energized by this on a regular basis.  Once again this past weekend I found strength in this to continue during my long run.  More on this later, though.

Last week, I also had an opportunity to meet a Pompe patient.  Like Gaucher, Pompe is an enzyme deficiency disorder.  It impacts the body’s ability to break down glycogen, which accumulates in the lysosomes, weakening muscles in the respiratory system, the heart, as well as those necessary for mobility.  This woman has also shown an incredible amount of resilience.  For ten years she lived with an incorrect diagnosis of Muscular Dystrophy and once the doctors identified that the diagnosis was erroneous, she had to leave her home in Las Vegas and travel to Minnesota… in December… in a blizzard.   As I was listening to her story, I realized that nobody I know has had to leave Boston to gain access to a hospital with medical treatment they needed.  We have them all here: Children’s, Brigham and Women, MGH, all of these world class hospitals that I’ve always taken for granted.  

These are not earth shattering revelations: that I’m healthy or that I live in an area with a large number of hospitals, but I’m sort of ashamed when I stop to think of how I have taken these things for granted.  I think this realization that I’m a spoiled brat might be the most important thing that I will get out of this experience.  I’m thankful for having this opportunity to have my eyes opened to these blessings that have been bestowed on me. 

Now to this week's run:  For the first time, I ran with members of the NORD Marathon team during my long run.  We did the last 9.3 miles (I don’t know whether to trust MapMyRun.com or my teammate Frank’s Garmin) of the Marathon route which includes Heartbreak Hill.  This came after only about 3 miles, so I’ll refrain from commenting on how it felt.  I did consider how I’d feel about it on April 18th as I started up it, though and decided I could totally see how it would be intimidating after 21 miles.  

After 7 miles, I had just about used up whatever benefit the Cliff Bar I had 3 miles earlier provided me and was, again, as close to the point of exhaustion as I think I’ve ever been (I’m noticing a pattern, how about you?) and almost like clockwork, I thought of Suzanne and all she had overcome.  Once again, I was able to draw on her as the motivation I needed to continue on and complete my run.  It’s amazing how easy it is to convince yourself that you’re not as tired as you think you are.

So, in closing, I guess I’ll tie this week’s post together with a quote from John Quincy Adams: “Patience and perseverance have a magical effect before which difficulties disappear and obstacles vanish.”  

Well put, sir.