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Wherever the Road Leads...

A Bleeder Abroad

5/1/2014

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by Jacob Marrocco 

Do you have you pack the needles? Did you pack the syringes? Did you pack gauze? Did you make sure you have enough medicine? Do you have the note that would prevent security from detaining you for walking through a metal detector with all of this? These were among myriad questions my mother asked me before travelling to Europe in July 2012. You may be wondering if I was once involved in the organ harvesting market and if I would use these tools to steal kidneys, or if I partook in some Hostel-type torture-for-profit business at one point in time. I can assure you neither of these is true. No, my friends, I was born with a rare bleeding condition called hemophilia.

 Hemophilia, which affects more than 400,000 people worldwide, is a disorder that prevents my blood from clotting properly. I know what you’re thinking, and the answer is no, I would not die from a paper cut. If I had a dollar for every time I was asked that, I would be holding my own billion-dollar challenge for a perfect NCAA Tournament bracket. It is more of an internal issue, such as if I strain a muscle or put too much stress on a joint blood can seep into the area and pool there. However, if the external injury is severe enough it could require treatment. Without getting too wordy, my problem is essentially that you (the average person) have 12 clotting factors in your blood to deal with an injury. I am missing factor VIII, since I have hemophilia A. People with hemophilia B, the other major form, are without factor IX.

 In order to get this factor I have to inject it into my bloodstream using a syringe to slowly pump the factor through a needle. Yes, I have to use a needle for this every time. I have been stuck with or used a needle on myself more than a few hundred times in my life. I have gotten used to it over time, but one of the most difficult aspects of having my condition is travelling since my medicine must always stay cold or it loses strength and could become useless if too warm. My parents were very concerned with me going to Europe, not especially because of safety issues as they trusted me, the chaperones and my friends embarking on the trip. They were terrified because their son with a rare bleeding disorder would be thousands of miles away with only a few boxes of factor and supplies being lugged around on his back. Potentially life-saving materials were kept potent by a few icepacks as we trekked around Paris, England, Ireland and Wales. I was a little worried, too, but I was in good hands.

 Another issue was that global knowledge of my disease is limited to say the least. At each hotel, X and I would go downstairs after checking in and search for a refrigerator in which I could store my factor and icepacks. Paris featured the only hotel with a refrigerator in the room, so we had to go hunting for one at the rest of our locations. Wales and Ireland saw no trouble in this department, but England was a different story.

 For background, I suffered an extremely painful bleed while in Paris. On one of our first days my feet experienced so much stress from our several miles of walking, to which my feet were not accustomed, that my left foot developed intense swelling where my leg and ankle meet. I had to receive at least two infusions before we checked in at our London hotel and I was still reeling from this injury. I would still be feeling the pain until the tail end of our adventure probably because the continued walking cancelled out the clotting process.

 Once we arrived at the London hotel, X and I repeated what we had done in Paris and went down to the desk to inquire about a fridge. We were told by the concierge that the kitchen had a refrigerator, but they were not sure if we could use it. We both paused and looked at each other, trying not to lash out at the polite woman. X calmly said “You don’t understand. We need to use the fridge. This is, like, life-saving stuff. There is no maybe.” My heart began to pound at the thought of my factor going warm on my back. If that factor cannot be used, my foot would continue to swell for another week. Imagine someone hitting your foot with a hammer every step you took and that’s comparable to the pain I felt as I stood flamingo-style at the front desk, and it would have only gotten worse from there. Whether it was the look of unbearable pain in my face or X’s convincing statement and demeanor, she quickly understood the magnitude of the situation. After a brief conversation with the kitchen crew, we were allowed to use their refrigerator. This is a story we tell all the time as X and I still have trouble grasping how we were given a “maybe.”

The foot bleed and our issue at the London hotel were not so much negatives; they were memories. I am proud to say I walked across Europe with a pulsing pain in my foot and made it the whole trip. I love recounting the hotel story because there are few people who can have that experience and it is one I will always remember. They may have been excruciating and infuriating experiences, but they were memorable ones nonetheless. My advice is no matter what condition or disease you have, never let it hinder you from going where you love and doing what you love. Life is meant to be enjoyed, so take advantage of it. I was not going to allow hemophilia to prevent me from visiting places I had always wanted to see, like the Louvre or Big Ben. I recommend that if you have a dream to squeeze the Leaning Tower of Pisa between your index finger and thumb, swim with dolphins, climb Mt. Everest or to witness Manchester United or Real Madrid in action overseas, you pursue it. Whatever it may be, go after it and do not let anything or anyone stop you. 


Jake is a 2012 Graduate of Pilgrim High School and current student at URI.


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Faithful to Fenway... 

4/29/2014

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by Mike Xiarhos

It was a long winter… a long winter indeed.

 I love football season and going to Patriots games is a unique experience which I genuinely enjoy.  The holidays with friends and family gathered together sharing food, stories, and tokens of love 





(Riley with Red Sox Outfielder Jonny Gomes)

and affection are highlights of the year.  Watching the ball drop and kissing my wife as the world celebrates the coming of a new year is priceless… but each of these experiences are lacking one                                               thing, the same thing… they are not Fenway.

The night before we were married, my wife and I spent the evening at Fenway Park, a few days later when we celebrated the purchase of our new house, we did it at Fenway Park, and when she told me she was pregnant she did it by giving me baby sized Red Sox gear.

2013 was a special year for the Red Sox and for my wife and I.  We went to 14 games that year, never seeing the Red Sox lose.  While traveling in Spain in April we sat in our hotel room watching the news about the Boston Marathon Bombings knowing  that had we not been in Spain we would have been at Fenway for the game then walked to the final stages of the Marathon route.  We were sitting in the Grandstand when David Ortiz hit his Grand Slam in Game 2 of the ALCS and we were on the Budweiser Deck when Shane Victorino hit his in Game 6, punching the Red Sox ticket to the World Series. 

A few days later, the World Series was set to open in Boston and we were desperate to be there.  Neither of us had even been to a World Series game, and we felt that in some way we needed to be there.  Twitter gave us the way.  Hours before the game, the Red Sox tweeted they had tickets for the fan who gave the best reason as to why they should get to be at Game 1.  My wife… my brilliant wife tweeted the Red Sox, “Give us the tickets and we will name the baby Fenway.”  We sat behind Home Plate.

In the early morning of February 14, 2014 our daughter was born… Riley Fenway Xiarhos.  It seemed fitting that to complete our magical 2013 season with the Red Sox we needed be at Fenway, with Fenway on Opening Day to watch the Red Sox get their World Series Championship Rings. 

And so we went… Mom, Dad, and Riley Fenway.  She may not remember it, and she may have slept through the pre-game ceremony, the entire game, the walk to the car, and the ride home… but she was there.  Her first game at Fenway saw the Red Sox complete a journey we felt that we were intimately part of… and I can’t wait for my new little Fenway to enjoy old Fenway with Mom and Dad.

And if she is not a Red Sox fan that’s just fine… but we will always be faithful to Fenway… both of them.


Mike teaches History and Psychology at Pilgrim High School in Warwick, RI.


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Once in a Lifetime Part II:  The Luck of the Italians

4/29/2014

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by Rich Marrese  

In 2008, I traveled to Italy for the first time with my Dad and my brother, James.  We called it the “let’s do the things in Italy we’d do if we only ever get to Italy once” trip.  It’s a long name, but an appropriate one.   One of the cities we visited on our trip was Rome because what’s a once in a lifetime trip to Italy if you don’t visit Rome?  There was the Trevi Fountain, the Spanish Steps, The Coliseum, The Forum, The Catacombs, and of course, the Vatican.  Our initial plan upon arriving in Vatican City around 9 a.m. was to tour St. Peter’s Basilica first (which was free) then take the tour of the Bell Tower (which was not free).  That plan was thrown out the instant we arrived at St. Peter’s Square.  The line to get into the Basilica was at least a few hundred people long.  It started from the right side of the Basilica where tourists were being let in, wrapped completely around the exterior of the square, and ended at the left side of the Basilica.  To further deter us, the entire line was in direct sunlight and this was Italy in mid-July. 

After talking it over, we decided that we would purchase Bell Tower tickets for later that afternoon and go tour the Sistine Chapel in the meantime.  We were going to be in Rome for a few days, so if we weren’t able to get into the Basilica on that particular day, it wasn’t a big deal, we could just go back some other time with the knowledge that we’d have to arrive much earlier or be prepared to wait in a very long line.  We had also been told that every Thursday at a specific time a nun shows up at the gift shop to the left of the Basilica in St. Peter’s Square.  This nun offers a free guided tour of the Basilica.  So at the very least, we were going to go back on Thursday to see if we could hook up with the guided tour.

It took quite a while to walk through the Sistine Chapel.  The tour of the Chapel isn’t just limited to the small church with the painted ceiling.  Rather, it includes a long walk through a double-digit number of lavishly decorated hallways lined with Catholic and secular artifacts.  These hallways then lead to the actual Chapel and its masterpiece.

After leaving the Chapel, we stopped somewhere for a late afternoon lunch and, having a couple of hours before our Bell Tower tour, we meandered around St. Peter’s Square taking pictures.  The Obelisk in the middle of the square has been there for approximately four hundred and fifty years.  The Obelisk was already almost three thousand years old when it was brought to St. Peter’s Square.  The name of the Square is very much a misnomer – the Square is in the shape of an ellipse with the four rows of Bernini’s Columns forming the outer edge.  There are two special spots marked on the ground in the Square where, if you stand on them and face the closest set of columns, the four rows of columns line up perfectly and it appears as though there is only one row.  It is a simply trick of geometry and perspective, but a spectacular feat of engineering. 

It was eventually time for the Bell Tower tour so we made our way to the entrance off to the side of the Basilica.  As one can imagine, with the Basilica being so large there are hundreds of steps required to reach the Bell Tower that sits on top of the largest man-made dome on the planet.  The dome is so large that about halfway up the dome the walls begin to curve and slant inward.  You have to walk leaning to your right for the last five to ten minutes before reaching the top. 

Saying that the view from the Bell Tower is spectacular is to dramatically understate its beauty.  The red roofs of Vatican City and Rome beyond seem to stretch out forever in all directions, bounded only by distant hills.  Huge statues of Jesus and the Apostles watch small dots of people move around the stone square below.  From this vantage point, it’s easy to see why visitors from all over the world, Catholic or not, flock to this place.

After walking around on the top of the Basilica, we found the exit and proceeded to make our way back down.  What we didn’t realize (something that no one told us) was that the exit for the Bell Tower tour deposits you directly into the Basilica.  We had effectively waited in line for the Basilica by taking the Bell Tower tour. 

When we entered the Basilica, it was around 5 p.m.  There were probably just over a hundred or so people inside the Basilica with us.  The interior area of the Basilica is over 160,000 square feet.  Doing some quick math, this means that I was able to walk around the Basilica and, on average, not be near another person until I’d walked roughly a quarter of a mile.  With so few people inside, the enormity of the interior became a vast emptiness that I alone encompassed.  If I wanted to stare at a mosaic for ten minutes or stand in one particular spot to get a picture of the six foot tall letters on the dome’s interior wall, I could.  It was practically impossible for anyone in the Basilica to be in anyone else’s way at that point. 

 The most fortunate result of our inadvertent Basilica visit was being able to witness Michelangelo’s windows fulfilling their purpose.  When Michelangelo drew up the plans for the Basilica in the early 1500s, he designed a large window high on the wall of the building’s facade.  At a certain time of day, the sun is at just the right position to shine through these windows and cast beams of light down onto the main open area inside the front entrance (called the nave).  In the low light of the Basilica’s interior, the sun beams shine brilliantly onto the floor below and it was one of the most incredible views I have ever seen in my life.  Pictures of the light shining through Michelangelo’s windows can be found online, but comparing those pictures to the real event is pointless…there is no comparison. 

 A few days later, on the Thursday, the three of us went to the gift shop in St. Peter’s Square to see if we could find our way onto the tour with the nun.  She was there at the time we had been told and a small group of us got our free nun-guided tour of the Basilica.  Even if one saw the Basilica’s interior every single day, I fail to see how the sense of awe could possibly be diminished.  But walking around for the second time allowed me to focus more on what our guide was saying than if I was witnessing these amazing sights for the first time.  Sometimes, the most remarkable event on your vacation is an accidental one.   

Rich teaches Physics at Pilgrim High School in Warwick, RI.


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