I've been fairly quiet the past few days. To be honest, there just isn't that much Carbo news to blog about. Tomorrow afternoon I am headed to Ottawa to attend a Sens game. This is pretty rare for me; I don't get to attend games much. It is due to this person:
This is my friend, Alice Ervin. I knew her as Liz -- her middle name was Elizabeth -- a devoted Sens fan who eventually took on moderator duties of the Ottawa Senators community on LiveJournal. Liz had a rare skin disorder known as epidermolysis bullosa (EB). This disorder affects less than 200 people in Canada, and affects the connective tissue between skin layers, leaving those who have it prone to cuts and infections. Liz was a bright student, attending Ottawa's Canterbury High School and eventually graduating from Carleton University's journalism program. She had dreams of becoming a sportswriter.
She developed skin cancer -- those with EB are at a higher risk of skin cancer than others -- and passed away this past March 20 from an infection that could not be controlled. I did not know that she even had EB until she passed away. That was Liz -- she didn't want pity, she just wanted to be treated the same as everyone else. That was the determination that got her through Canterbury -- graduating at the top of her class -- and the journalism program at Carleton, one of the most competitive in the country. Even though her disability limited her; she had to limit human contact and because her mouth was so small, she received her nutrients through a feeding tube.
I am also a fan of the former Sens goaltender Pascal Leclaire. In 2009, even though Liz was already battling the skin cancer at that time, she went to the Sens store with her mother to pick me up a Leclaire shersey. Because I am 90 minutes away from Ottawa, and there were none in the stores where I am. She was utterly, completely devoted to her friends. I still have the shirt; it is very worn now.
To keep this post on topic, Liz used to tease me about my love of Carbonneau. She was among the first to commiserate with me when he was fired from the Canadiens in 2009; she thought the firing to be stupid and premature. Although her first team was the Senators, she also considered herself a Habs fan.
And so, her family has invited me to attend a Sens game. I consider this a great honor. I have enjoyed getting to know her mother, Linda, via e-mail these past months, though I wish it had been under different circumstances. It is a testament to Liz's indomitable spirit that those who knew her online and offline; through hockey, and through the fictional fandoms she was involved in -- will certainly never forget her.
Further reading:
- Genetic disease won't stop her dreams (Ottawa Sun)
- Courageous young woman succumbs to rare disease (Ottawa Sun)
- Alice Ervin's spirit soared where her body failed (Ottawa Sun)
- The Spoon Theory (which Liz was constantly referring to)
- DEBRA Canada (non-profit organization to provide support for families facing EB; Liz was a board member)
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