February 29, a day that comes around only every four years. This means that in my 36+ years of life, I have encountered this “leap day” 10 times. Pretty rare, isn’t it?

At some point, someone realized that this day would be a good time to highlight the presence of rare disorders where they exist in the population. Long-time readers probably already know that I have a genetic abnormality called Norrie Disease, which results in total blindness from birth and hearing loss by about the second decade of life. As far as I know, blindness is near universal. But the way that hearing loss presents itself can vary widely, probably dependent on the level of other vascular issues one has as well.

Some individuals with Norrie can have more severe symptoms including mild to moderate Intellectual Disability and/or Autism. This happens due to the deletion of the NDP gene.

Norrie is usually passed on through families, but there have been some cases of spontaneous mutation in folks who have no previous history. There are believed to be only about 400 instances of it throughout the world. But given the Internet, Facebook groups, mailing lists and the like that bring us all together, I am led to wonder how accurate that number actually is.

For me, Norrie has been both a curse and a blessing. A curse, to the extent that it does create some challenges. While mine is definitely toward the less severe end of the spectrum, I still struggle with the fact that I can’t hear as well as I once could. This can dampen my confidence and cause me to feel less effective in almost every social situation, constantly having to rely on others to signal me when things have been said or to repeat themselves. Even though people reassure me regularly that this is “no big deal,” it still does deflate a bit.

Of course there are a set of broad based challenges I face as well, with regards to obtaining employment, education, and even maintaining a romantic relationship (but I have a great one, happy anniversary to us!) These aren’t necessarily confined to Norrie folks, of course, but they do confound my existence and present some extra things for me to overcome.

Not all is doom and gloom, though. I feel fortunate for the association to which I linked above, and of which I am currently president. This opportunity indirectly inspired me to get back onto the grad school flow and seek that Master of Arts degree in Communication on which I am now working. I have it in mind to write for or otherwise contribute to a nonprofit organization, likely NPR. So I acknowledge the importance of learning to help others and to understand how to deal with issues.

And on a more basic level, I feel that my main purpose here is to educate parents and other caregivers that we all can be worth something, no matter our situation. This is always my take-home message. And with the near daily advances in technology, our chances to do and be what others are have never been better.

I’m not sure if I’m in my most solid writing form at the moment, hey it’s Monday and a workday so what can one expect. As such, I thought I would provide a set of related posts that will hopefully give you more depth.

Intro Post
My Challenging Wax Cleaning
Five Years of the NDA
NDA 3: Takeoff and Tour

Four weeks down, four to go in my first graduate class at Queens University of Charlotte. And I’m not really sure how to feel, except that the line of assignments coming toward me are a bit like a column of ants: marching slowly, relentlessly onward.

The semester started deceptively easily. “Ah, I can handle this,” I thought as we only had to complete three discussion board posts and read a chapter. Then the next week, it was a bit of a written blog post added to the mix. Weeks three and four featured PowerPoint presentations that I uploaded to YouTube, the first being of my chosen article’s lit review, and the second a full summary of said article. As a sidenote, I’m still having a time presenting fluidly via PowerPoint. I guess I will always find that difficult, since I can only put so much text on each slide and must remember the essence of what I was getting at. I have, through much wailing and gnashing of teeth, learned a lot about how to interact with this technology, including recording narration with my slide show and banging on the keys, stomping on the floor, and chanting just so until I magically land on the “Export” button and can send it as a video. No really, I still don’t know how to actually do that but keep lucking up.

And on comes this week, when the swarm becomes the thickest. I’m just hoping not to get bitten! I have four (4) assignments I must complete in a relatively short time: a draft paper on my chosen movie, which I hope I’ve even adopted a title that is acceptable; a critique of someone else’s work, that part is gonna involve reading the text line by line and checking for issues; a blog post on APA style; and a podcast on the use of writing style guides in general. Fun, huh?

How’s a working man to find time to do that? I’m not really sure. I think someone has already decided it to be too much and headed for the hills, which spooks me more than a little.

I do feel still that this program fits what I’m trying to do, I just wonder how much stamina I actually have. But as my Carolina Panthers (ah can we forget about that sloppy Super Bowl please?) oft-repeated mantra goes, and an apt expression to ride the ant metaphor a little longer, I will keep pounding. I’m trying to at least get to the end of the course, where I will assess my standing and determine if it is worthwhile to continue. Whenever I ponder giving up though, a little bit of encouragement finds me and whispers in my ear “not yet! You’re on the right path.” For it is the hardest times in life where one is made.

One of the biggest challenges that I and my classmates are finding with the program being online is that sense of connection, of “shared-ness”, is a little slower in taking hold. But adversity is already starting to bring it out a bit more, at least on the informal discussion boards created for this purpose. We do still have 11 more courses over 1.75 years to complete, and I suspect by then we’ll know each other quite well. My limited previous experience in grad school suggests that this connection is not only necessary but essential, not just for what’s happening now but also for the attempts to find employment and establish a career that will occur later. So I’m starting to work on that part as well.

Overall though, I’m excited about how things are starting to play out. I guess I will be heard from again shortly after the beginning of March, assuming nothing interesting happens in the interim. Wish me well in surviving the craziest portion of the semester!