Bleeding Black and Gold: Jillian Murphy's Story
Thank you to Nick Godin (@FlyingOrr) and Bruins Diehards (@BruinsDiehards) for the opportunity to share my story with a guest post on your blog.
Upper Deck Hockey: MyMVP Contest
Thanks to Matthew (@gatorspirit) I was nominated for Upper Deck Hockey’s MyMVP contest. This is the first year the contest is being held, and the program looks to shine a spotlight on the super fans (a.k.a. diehards) of participating teams who make a positive impact in their communities. The nomination was truly humbling and I appreciate being considered.
How The MyMVP Contest Works
There will be 2 different votes: Team MVPs chosen for each of the 23 participating teams and one ultimate MVP winner.I was fortunate enough to advance to the public vote phase of the contest. Voting is open now through February 23, 2020 for Team MVPs.
If you would like to vote for me as Team MVP of the Boston Bruins, you can do so by liking the tweet linked here. I appreciate your support!
If I win the Team MVP vote (for the Boston Bruins), then I advance to the Ultimate MVP round of voting. Voting for that phase runs from March 5, 2020 to March 15, 2020. More information can be found on Upper Deck’s website.
About Me
For those that do not know me, my name is Jill Murphy. I am 29 years old, and I live with a genetic connective tissue disorder called Ehlers-Danlos Syndrome (EDS). Due to EDS, I experience anywhere from 1 to more than 20 joint dislocations everyday. Something as simple as a cough, a sneeze, or even rolling over in bed, could result in a dislocation. As a result, I have undergone more than 30 surgeries at Boston Children’s Hospital in an attempt to stabilize my joints, restore function and mobility, and decrease pain.
Additionally, I live with a number of other associated conditions. I struggle daily with autonomic dysfunction (POTS), headaches (Chiari Malformation; brain surgery in 2014), GI issues, chronic widespread pain, and bizarre allergic reactions. Simple activities are more difficult and I face challenges everyday.
Although my conditions are progressive and debilitating, I try to find the positive to every situation, and I continue to live my life in the moment.
To learn more about EDS or if you are interested in learning more about my journey, you can watch my video below:
I also have a blog, Just Sparkle: Living with Ehlers Danlos Syndrome, where I document my journey with EDS and chronic illness, and spread awareness. I try to live my life with optimism and a sparkling personality. I cannot always decide what happens to me, but I can decide how I react. It is not always easy, and there are rough times, but just because my life with EDS is not glamorous, does not mean that I can’t sparkle!
Hockey Obsessed
How did I become a hockey-obsessed, diehard Bruins fan?
My dad, Dennis, was born in the Boston area into a diehard Boston sports family. My dad taught me all about the Bruins and the game of hockey. Not only did he teach me the game, he shared his favorite Bruins memories dating back to the days of Bobby Orr. The Boston Bruins were an incredible bonding opportunity with my dad. Our collective passion for the Bruins is something I will cherish for the rest of my life. I lost my dad to cancer in 2016. Now when I watch the Bruins, I know he is with me, just in a different way. I still feel a connection to my dad as I watch the Bruins play.
I went from a Bruins hockey fan to a hockey-obsessed fan on May 4, 2011. In advance of a surgery, I attended a playoff game with my dad. It was Game 3 of the Eastern Conference Semifinals against the Philadelphia Flyers. The Bruins were already up 2-0 in the series, and we were able to score last minute tickets. It was my first ever playoff game and it certainly did not disappoint. The Garden was electric! I was hooked!
The Bruins scored two goals in the first 1:03 (Chara and Krejci). I had never heard a building erupt like that. They would go on to win the game 5-1, extending their series lead to 3-0. To date, it was one of my favorite Bruins memories as I was able to share that experience with my dad.
From that point on, hockey would become my biggest passion. I haven’t missed a single game since - not even when I was in the ICU following brain surgery to relieve cranial pressure. Living with chronic illness is all about adapting and finding different ways to cope and manage the pain. When I look back on some of the most difficult moments in my life with EDS and chronic illness, it was the Boston Bruins and hockey that helped me get through it.
Two Worlds Collide
Hockey is more to me than just a sport. The Boston Bruins are my #1 passion. They are my biggest distraction from pain and quite literally keep me going. They are my lifeline.
It has somehow worked out that every December since 2010 I have had surgery at Boston Children’s Hospital, and every year I have missed the Bruins annual holiday visit by 2-3 days. However, on December 12, 2018, while hospitalized following surgery, I had the pleasure of meeting 4 players (Brad Marchand, Zdeno Chara, David Krejci, and Steven Kampfer). It was the day my two worlds, EDS and Bruins hockey, collided. Who would have thought that good things could come from bad experiences?
It was such an incredible experience and certainly put a smile on my face for the rest of the week while I recovered. We talked about the game the night before against Arizona, and when Chara asked me what I thought I told them that I wasn’t pleased with the team turnovers, despite the 4-3 win. It was a sloppy win and I was not impressed. So on the way out, Marchand said: “I’ll think of you yelling at me on TV every time I turn the puck over.”
Then for Christmas, my brother Shane bought us tickets to the Bruins/Hurricanes game on March 5th. As a joke, and referencing the conversation we had in the hospital, I sent a tweet to Brad Marchand asking him to limit the turnovers while I was at the game with a picture from the hospital visit. I didn’t expect him to see my tweet nor did I expect a response. I also didn’t think he would remember me. But he did respond and offered me passes to meet after the game.
As if the passes were not generous enough, Brad and his wife Katrina invited me back for the remaining games on the home stand. I toured the locker room, met the players and coaches, and just talked hockey. It was truly a dream week and one that I will never forget.
There is hardly a day that I am not covered head to toe in black and gold and I wouldn’t have it any other way. Nearly every aspect of my life revolves around the Bruins. Everything from my clothes and accessories, to my wheelchair and cane, to my bedroom (bedding and decor). My luggage is black and gold, and I even have a Bruins-inspired license plate and steering wheel cover.
I have three pairs of custom Bruins-inspired Nike prestos with a 37 and 63. And a pair of rare Nike Air Jordans in black and gold.
I have 4 custom Brad Marchand game jackets, with more to come! I even designed my own line of Team Brad gear for games, and I wear Brad Marchand socks for all games that I watch on TV. Yes I am superstitious - its a hockey thing! My Brad socks are currently 14-0-1!
I have a shrine dedicated to Bruins memorabilia. I have a Team Brad wall in my bedroom with a signed Brad Marchand poster and framed photos from when I met him during the 2018-2019 season. I have a signed Bobby Orr stick over my bed, Ray Bourque, Patrice Bergeron, and Brad Marchand signed jerseys, and a number of signed pucks by different players. I have a signed photograph of "The Goal." I have kept every playoff rally towel, ticket stub, player pass, and giveaway. In my room I am immersed in Bruins glory!
To follow my journey you can subscribe to my blog at www.justsparklejlm.com.
I can also be found on Instagram- @jmurphx11 and @just.sparkle.jlm, and Twitter- @jmurphx11.
Go Bruins!