Tag: nf2 patients
Regarding my absence ftom 2020 NHL playoff blogging and my social withdrawal online
Here we are, deep into the NHL’s COVID-19 affected NHL playoffs! It’s sports-content when the world is generally forced to step back. The NHL’s system is proof of the step-back: Two host-cities for gameplay, no attendees, players/team personnel in a “bubble” to prebent catching the dreaded virus that has afflicted the globe.
The Tampa Bay Lightning are once again facing the Columbus Blue Jackets (last season’s series is a painful memory) and have taken two of three games played… Well, unofficially, it’s two of six games as the clubs had eight(!!!) periods of play in the series opener – regulation play and five overtimes.
In all the stories I just shallowly touched on with this, I haven’t said one damned thing in written content. The fact I’m writing this with a sudden personal turn is bad enough, but I was the original Tampa Bay Lightning blogger and this is my personal site so…
Why haven’t I said shit? That in itself is personal.
I have it upfront on Johnny Fonts that I have an issue with my hands which makes typing more difficult. I’ve also written on Raw Charge about my condition in general in a (failed) fundraising attempt. There’s stuff here too, but none of it speaks about the now. I haven’t gone public with this one – with friends on social media or on this site.
Oh, my silence has been influenced in part by the risk factor for the NHL that is at play with the virus. In May it made this writer turn up his nose at the playoff-system (so did the Lightning) but this isn’t the virus or politicking that has muted me…
Han Solo said it best in the Tatoonie desert in Return of the Jedi, “Instead of a big dark blur, I see a big light blur.” Subtract the daek and you have my silencing ailment, cornea scars that have rendered me blind.
It’s not total blindness or I wouldn’t be able to even attempt to write this. It is profound though and stops me from spending time reading coverage of the Bolts in articles or on social media. I struggle to read, I lose patience with thanks to pop-up elements on top og illegible text and give up. I also lack – and always have – the ability to keep up with the fast-fast pace of Twitter during games or events.
And then there’s watching games. I can’t. Or movies. Or news coverage. It’s blurred into discontent for me.
I pay attention to headlines I see; I follow news on Reddit specifically for that. I’m just not going deep in coverage as the die-hard sports fan that I am… And it sucks. It sucks that I am not invested in my passion covering the Lightning.
My general health affliction (paired with anxiety and insecurity issues) has always prevented me from much involvement with things. This vision issue continues that plight. The cornea scars are a result of eye-dryness which is a condition I’ve suffered for decades by way of tumors and necessary surgery. This explains why I’m always in sunglasses in photos: To hide the scats unsightliness.
To be visually impaired like this on top of my heating issues? It’s making me into a modern-day Helen Keller.
So, I’m not in the playoffs and coverage of the Coolest Game on Ice during this time of plight. I have been investing myself in music in a manner derived through my blogging days: Content management, promotion, and research. Oh, listening is a part of it too. It’s a step down from sports coverage as many independent musicians who are out there are only doing things as a hobby and I am and will remain irrelevant to them as I have no reputation in the industry. Having been part of Lightning coverage for so long made me relevant in hockey and Bolts coverage, especially seeing local media has never given the Bolts more focus and coverage which the franchise has earned through competitiveness.
So, uh, yeah… I’ve shut up. I suppose that makes some people happy. Perhaps this explains to my friends and colleagues why I’ve been scaled back on social media (though Facebook corporate/political issues have contributed, that’s one platform though). I media-share a lot and sometimes post messages. I don’t exactly enjoy making it seem like I want all focus on me by not reacting to others.
We]l see (pun intended) if things ever improve, but John Fontana is muted in many ways in the online world that has been his home for most of his life. And it pains him. Profoundly.
Summarizing my life with Neurofibromatosis Type 2
I had someone approach me to write my story to aid in lobbying Congress for research funding Neurofibromatosis (and Neurofibromatosis Type Two) research. The idea piqued my interest because, hey, I’m a writer! I’ve been doing it for so long and have a unique voice in saying things. I knew I couldn’t write a huge piece or an autobiography, but I thought it’d still be an opportunity…
Yeah, well, I had to work in a plea for funding in it, and I couldn’t have more than a page for my story. I could work in issues I’ve dealt with and family plights, but just a page!
I can’t write a story about what I deal with while having the genetic disease NF2 in only a page. Oh, I could summarize things in a bulleted list… but that doesn’t make a true case to politicians to actually give a care.
There’s also that aspect – politicians of the United States of America at the moment – that works against truly trying to coerce federal support toward researching a rare medical disease. After all, there’s a faction that thinks a physical wall is a necessity for national security, and that $5.7 billion is a worthy investment. That doesn’t touch on others who push for federal “aid” for multi-billion dollar conglomerate corporations who need no such help in order to profit.
Yeah, my story, as a short summary and plea for cash, would mean shit to that element of political America. Preventing a disease that affects about one in every 25,000 human beings on the planet is not something that these people are going to be sold on when it comes to listing ailments and hindrances in a few words.
Yet here I’ve written 300 and haven’t said a thing about my story. If a Congressional representative or the United States Senator ever reads these words is not something I expect. Nor do I expect to sell them or readers from the general populous on contributing to the NF Network and helping fund research and support for Neurofibromatosis/Neurofibromatosis Type 2 patients, but whatever. Here’s my story.
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