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.