Today’s the 12th anniversary of the founding of the site that became Raw Charge. I started writing a site called Boltsmag (named for a Rivals.com site that went by the same name) in part because of the lack of a current Tampa Bay Lightning web presence. You could find web sites from the late 1990’s and the ultra-brief competitiveness of the club from 1996 / 1997 (Geocities and other ultra-early free web host sites) and that’s about it. It was easy to be exposed (via league-wide message boards) to the common stereotype of the time: how Tampa Bay didn’t deserve hockey, how no one attended games and blah-blah-blah. That was another reason to show fans actually did exist.
I think the Lightning, the fan base and much of the league have matured and evolved to end the non-traditional market attacks. It still lingers (closed minds are closed minds) but back to the point: The region and the franchise are in a much different state of being than in February 2004. The sport has grown in the region with a little help by what got achieved in June 2004.
There’s another reason I founded Boltsmag (whose posts are available in the Raw Charge archives, spanning February 2004 through March 2009 when Raw Charge was founded). That reason is rather personal to the point it’s uncomfortable to write about. It’s the fact the whole thing is an attempt to shed light on an issue larger than me that I share it, trying to gain exposure for an affliction that hampers too many.
Around the time I decided to put together a web log devoted to the Bolts in February 2004, I was learning to walk again and physically rehabbing after multiple operations in late 2003. Web design was a way to pass the time while I got things back in physical order. Losing walking ability and lower body sensation wasn’t caused by an accident or injury from something horrible or a petty incident of embarrassment. It was another physical complication to my life by way of Neurofibromatosis Type Two, a genetic disorder that had already slammed my life with deafness and other physical complications brought on by it.
Neurofibromatosis Type II (Two), aka NF2, sucks ladies and gentlemen. It’s a genetic disorder that’s known for having non-malignant tumors (or schwannomas – cute term, eh) pop up on nerves throughout the body. It’s especially known for doing that lovely deed on auditory vestibules – hearing nerves in the noggin’. You can find more information about the disease on Wikipedia, Cancer.net, Web MD, and NF2is.org. Deafness, paralysis, eye issues… That’s a few highlights to living with NF2.
Friends know me as a physical contradiction of sorts – I’ve been physically deaf since December 1997 when I had a tumor (schwannoma! Killer cute, I tell you) removed from my head. I’ve been wearing a sound processor since October 2001 that I’ve grown to utilize, though it’s not a cure-all that gives me full listening skills again. I can enjoy hearing Rick Peckham’s voice on-air during Lightning broadcasts on TV, or the roar of NHL arenas during games. I even defy a physical trait of device: The ability to listen to and enjoy music. Musical enjoyment is actually a challenge for most implanted with a Cochlear or Auditory Brainstem Implant (what I have).
The truth is, though, that between hearing limitations and other physical ailments brought on by tumor growth in my body, it’s made me reclusive (as are many afflicted with the disease). It’s part of why many who’ve been reading my stuff over the years haven’t physically met me out in public or in the stands at 401 Channelside Drive or up in the press box, or other team functions.
You’re probably wondering what’s all the confessional stuff about; the personal conditions and the like. What does it have to do with my blogoversery? I’m not trying to explain why I make typos so commonly in comments by way of an elaborate explanation (that’s laziness and fast typing on my part, folks…most of the time.) This whole article is just one guy talking about their life with this disease. One guy’s story is not the same one for individuals afflicted with Neurofibromatosis Type 2. There are many limitations, handicaps and hardships that the afflicted can suffer through, with surgery as the only truly effective choice in dealing with these tumor growths caused by the disease – which can create more complications than they solve. (Quick Note – there are therapy drugs in use as treatment for NF2 but their results vary from minor size reduction to non-growth, to no effect). There’s also the challenges (physical and emotional) that their friends and loved ones face while witnessing difficulties and helping to deal with the complications that NF2 brings on for someone suffering the disease.
All of this said I’d like to introduce the Deke the Deuce fundraising campaign to help raise awareness of NF2 and support research into the disease. Taking donations through Go Fund Me, all proceeds will go to the Tampa Bay based Advocure NF2 organization, whose goal is to raise awareness of the genetic disorder and help fund research. The Deke the Deuce campaign will run from now until March 16th (the 7th anniversary of Raw Charge’s founding).
While Raw Charge is aimed at Tampa Bay Lightning fans, this fundraiser is aimed at hockey fans in general. One thing I’ve learned in a dozen years of blogging is that while rivalries can be stressed in the sport, while fighting and violence can be glorified and we’re all striving to be the victor… Well, hockey also has one of the strongest collective bases when it comes to rallying for a cause. One of the longest tenured bloggers in the sport asks you to help out.
