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I really should still be asleep, since I am running the Boston Marathon today.  But as I sort of anticipated, my eyes clicked open at 5am like they always do and I’m sitting drinking coffee while the cat goes bananas in the living room and the sun slowly rises above my beloved city.  It’s our little tradition.  Much like Boston has it’s own little tradition: The Boston Marathon.  Every year thousands upon thousands set upon my city to run from Hopkinton to the steps of the Public Library.  Some run for the golden laurel wreath, others for charity and some because it’s the oldest and arguably the most prestigious Marathon in the world.

As I’ve grown up my feelings have changed about the Marathon.  As an angsty teenager, I had very little time for it.  The Marathon shutdown my city, like Head of the Charles and what’s worse brought tourists to my city, like the Freedom Trail and King’s Chapel.  In my twenties,  I learned to deal with it, I avoided driving near Boylston and worked most Marathon Mondays, so it didn’t affect me much.  When I met my wife, she organized my first trip to watch the race since I was a child and it was a lot of fun: a group of friends cheering on people who had just run 23 (!) miles with adult beverage-filled coffee mugs.

Last year, though, as I was running to train for my first 5K, then later the sprint triathlon, something had changed.  I started talking to my co-workers who had run for NORD in the past and who had done Ironman races about their experiences.  It had never, ever occurred to me to run a marathon.  Now I was running, certainly not long distance, but running nonetheless.  Could it be possible that I could run Boston? 

But here I am on the day of my first marathon.  I’m more calm than I was last night and well rested.  I think I’m properly hydrated and sufficiently carbo-loaded.  I feel as though I’ve prepared well over the winter months for this day and that’s something that little 17 year old punk rock Matt never would have fathomed, especially not as he chain smoked Camels and scowled down Dartmouth Street toward Copley Square.   

Big week to start March off

What a week!  Sunday I ran the Hyannis Half Marathon, the longest road race I’ve done so far; Monday, the 4th Annual Rare Disease Day, I met the woman for whom I’m running the Marathon.   Then today, I ran 18 motherslappin’ miles.

At the half marathon, I posted a 1:59:02, which makes me very happy; I had been shooting for 2 hours so to actually meet the goal I had set was pretty awesome.  I no longer run with an iPod with a timer, so I had to guess at how hard I should have been running.  With approximately 5 miles left, I ran past a church with a clock tower and realized that breaking the 2 hour mark was totally attainable.  The weather was a miserable mix of rain, sleet and snow but it didn’t matter once I crossed the finish line. 

As I said, Monday was International Rare Disease Day and Genzyme commemorated the day by inviting Suzanne, the woman I am paired with for the www.runningforrarediseases.org program as well as Jean Campbell, a patient advocate who worked for many years at NORD to speak at Allston.  Suzanne’s story was so powerful and inspiring; I carried it with me through my long miles this week and was able to draw from it today during the afore-mentioned 18 miles, which I’ll get to later.  I also spoke to the site about my experiences training and running.  Stef came to support me, which was nice.  We then went to my teammate Radhika’s fundraiser at Za followed by dinner next door at EVOO with Suzanne her husband Bob and one of Genzyme’s patient advocates, Kathleen.  It was great to have a chance to sit down and get to know Suzanne and Bob and to make plans for Marathon Monday.  They plan to come back to Boston to cheer me on to the finish line, which is awesome.  Dinner was delicious; Stef and I are planning on returning, so if you’re wondering what’s good in Kendall Square, look no further. 

Today’s run was rough and not because I had an ill advised omelette.  After about 7 miles I was really feeling this week’s 31 miles in my legs and feet.  There wasn’t a major muscle group in my right leg that didn’t hurt, from the bottoms of my feet, all the way up to my hip, some part of each section either ached or just outright hurt.  I still had so far to go, though, but one of the good things about picking routes that bring me so far away is that once I’m out there, I might as well run back.  So, that’s what I did; I remembered Suzanne’s story and all she overcame because she had no other choice.  I did have a choice, though.  I could have hobbled over to the train and packed it in for the day but instead I finished out my run and head into work.  I went to work on a Saturday after running 18 miles because I was reminded this week of what’s at stake if patients don’t have their therapies on time.  I remembered that there are 6000 rare disorders which people face that still need a treatment.  So, I’ll keep running for them and I’ll keep running for Suzanne regardless of how much my legs hurt.

My International Rare Disease Day speech with less jokes and ad-libbing and more Rs

Thanks Sandra and thank you, everyone, for giving me the opportunity to tell you a little about this year’s Running for Rare Diseases Team.  We’ve had ten people from multiple Genzyme sites come together to raise money to help support the National Organization for Rare Disorders.  NORD is a non profit organization dedicated to ensuring that research for orphan drugs like the ones we make here continues to be productive and that patients never need to go without their life saving drugs.  Jean will talk more about NORD, their advocacy and the Orphan Drug Legislation later.  

For those who don’t know me, I’m Matt O’Shea, I work in Manufacturing Compliance and Training.  I’ve been here for just shy of 10 years, most of which I did not spend running every morning.  Like I said, there are 10 of us from Waltham, Framingham, Genzyme Center and Allston Landing.  Most of the team members have run marathons before, some have run Boston and a few of us, myself included, have never run a marathon before. 

Part of the Running for Rare Diseases program is that each runner is paired with a patient who we will run the Marathon in honor of.  I have been paired with Suzanne, who lives with Gaucher’s and who we’re lucky enough to have join us for Rare Disease Day.  Ever since I joined Genzyme, I’ve always been proud of being part of a company that makes drugs that have a very real impact on people’s lives.   Keeping the patients in mind has always helped motivate me here and now it’s helping me to train for the Marathon.  On more than one occasion, towards the end of a long run that I decided would include a big hill at the second to last mile, when I thought I didn’t have anything left to finish, reminding myself that I’m not just running up this hill for myself but that Suzanne is also counting on me to finish helped me to find that little extra bit I needed.  It also helps to remind myself that there are so many other diseases that, unlike Gaucher, have no therapies and that there is a very real need to help raise awareness for NORD and their mission so that work can continue.  

For more information, you can visit our website, Runningforrarediseases.org, where you will find posts from both patients and runners, links to our many fundraising events like the one tonight at Za over in Kendall Square and the upcoming bowling event at King’s in the Back Bay on 3/18.  There’s also a link to my blog where you can find some of the gritty details of what it’s like to run through one of the worst Boston winters in recent history

I’d now like to welcome Jean Campbell, a consultant with JF Campbell Consultants LLC, and a recognized and respected advocate for patients with rare diseases.

Some random thoughts on nutrition, hydration and British heavy metal.

 

Yesterday's run  was rough.  The start of the run was hard, probably due to the heavy omelette I had for breakfast.  I estimate that it took me about 4-5 miles to really get beyond the point where I was struggling to run for lack of energy rather than muscle fatigue or pain.  Though I know that it shouldn’t surprise me, it really is amazing how choices in diet can affect performance.  I’m not even talking about the difference between a salad and deep fried Twinkies: eggs and home fries were heavy enough to noticeably impact my ability to run. 

Again I’m aware that I’m not having groundbreaking insights into anything but as they say, seeing is believing.  It’s one thing to hear that a change in diet will positively alter your energy levels and that eating crap will make you feel like crap but it’s something else entirely to be able to actually measure the difference yourself.  

I did make a smart decision regarding nutrition yesterday.  In my route planning, I included a trip to Landry's Bike Shop to pick up some Shot Bloks from the makers of Clif Bar.  After reading on line that the Gu-type gels upset some people’s stomachs, I decided that I really didn’t want to risk that, so at the recommendation of one of the helpful folks at Landry’s I decided to use the Shot Bloks for the Gloucester Triathlon.  They’re not hard on my Prilosec dependent stomach and give almost instant energy.  They come in a sleeve with 6 - 33 calorie pieces.  Over my 16 miles, I ate 10 of them.  After the practice I’ll have over the next 10 weeks of long runs, I could probably have a pretty good idea of how to use them without getting the point of having my energy flagging.  

The other part of body maintenance during the run that I have to worry about is hydration and I’m trying figure that one out.  It seems like a 16 oz water bottle will last me roughly 6 miles.  This wasn’t a problem training in the warmer months as there are bubblers all over the place to get a drink or fill up a water bottle, but the public works departments shut them off in the winter to avoid the pipes freezing/ bursting.  This led me to make an in-run decision to change my route in include the Newton Fire Station station on the corner of Comm. Ave. and Washington which allows you use their bathroom and water bubbler (enter through the side door on the right and make sure to say hi).  This decision led me to wind up running 16 miles rather than the 14 Hal wanted me to run this week but without it, I would have been rather thirsty and I’m not sure how I would have gotten water since there aren’t terribly many convenience store on that stretch of road.  

But anyway, on to the hilarious segment of the blog.: last week, I mentioned that Heartbreak Hill came too early in my run to accurately gauge how difficult it would be come race day.  This week, I was about 10.5 miles into my run when started the climb and considerably more drained (though well hydrated!) than I had been the first time.  Oddly enough right as I crossed Centre Street, which is about halfway up the gentle slope leading to what I guess is the business end of the hill, Iron Maiden’s  Run to the Hills came on my headphones.  It was just what I needed to help me get up and over it.  

I’d also like to state, for the record, that I’ve never had a deep fried Twinkie.

The new fund raising page is up!

http://www.rarediseases.org/helping/boston-marathon

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.

February Fundraiser! Hope you can join us!

The 2011 NORD Marathon Team is having another fundraiser on 02/11/11 at Lir on Boylston.  Hope you and all your friends can make it.

Let me get you back up to speed... and me back on track here.

So, it’s been a very long time since I’ve written.  Just shy of a month, but rest assured that I have indeed been training and that I’ve also been raising funds.  Thanks to all my lovely, generous, good looking friends who have donated so far.  To the rest of you good looking people, I hope you can find the time and the scrilla to donate to help ensure that research for therapies for rare diseases continues to be well funded.

Since we last spoke, I’ve extended my long run to 12 miles, ran through Manhattan and Central Park and even managed to squeak out a quick 10 miles on New Year’s Day despite the presence of both bourbon and rye in my house the previous night.  The run through Central Park was pretty fun despite not seeing any famous people (this is more to Stef’s chagrin than my own) and not winding up with a cool story about getting mugged.  All the same, it was a pretty sensational experience.  Running through Manhattan before the throngs descended upon the streets and seeing the city as close to quiet as it gets was interesting.  Halfway through Central Park, I came upon an outdoor hockey rink where there were a few youth hockey games going on.  I stopped to watch the kids play for a few minutes and reminisced about playing when I was young.  As

I was standing there watching the game, a father was walking his daughter to the car after her game and commented, “I don’t think you’ll realize this until you’re older, but it’s pretty cool that you just played hockey in Central Park.”  I totally agree, sir. 

This past weekend, since the huge snowfall that decided that it wasn’t going anywhere, I was forced to do my long run on the treadmill.  Ugh, the treadmill, is anything more boring?  12 miles with nothing to distract yourself from the fact that you’re running is not my idea of fun.  This is something I’ve noticed about myself, if I’m not paying attention and allow my mind to wander the run goes so much faster.  However, if I focus on the time or the distance or that my feet or sore and my legs are tired, it makes the run seem to drag.  Indeed, losing myself in the run is part of what I like so much about this new hobby of mine.  It’s also part of why I thought it might be a good idea to write a blog summarizing my thoughts.  

Oh, and also, for the first time in my life, I have actually worn through a pair of running shoes. 

Big day.