Nightlight

I found myself singing a Garth Brooks song in the shower the other day - unusual not only because I don't often sing in the shower (someone might hear me!) and because I can't remember the last time I listened to a Garth Brooks song on purpose. But as the water beat down on me, I found myself singing the chorus, "And I'm glad I didn't know the way it all would end, the way it all would go…"

The song has nothing to do with retinas. It has nothing to do with not being able to hear. It has nothing to do with my life at all, really - it's Garth and a failed relationship and some steel guitar and a whole lotta feeling, and yet I found myself singing anyway and feeling it and finding this bit of understanding.

I recently got the results of my genetic testing back. Those results confirmed that yes, I have Usher Syndrome. The results confirmed that there are two changes (mutations) to the USH2A gene. The results confirmed that the hearing loss that I've had all of my life is related to these new vision symptoms I'm only just discovering.

Finding out has meant both everything and nothing at all - which feels like it makes no sense, but perhaps might to other people in my shoes. There are no cures, there are no treatments and there are currently no clinical trials for people with my particular type of Usher Syndrome. Having this answer isn't really an answer right now - it's just a little piece of information that leads absolutely nowhere and so I have found myself so completely relieved that I'm only just now finding out.

I think of what would have happened if I had known this for all of these years - had genetic tests been done years ago to determine the cause of my hearing loss we might have discovered these mutations to my USH2A gene long ago - what would life have been like if I spent my whole life waiting for my vision to fail, looking for clues, looking for symptoms and signs? Would I have been scared? Would I have gone down the same path? Would I have been more restrained? Would I have made different choices? Would I constantly monitor every nuance and every little thing - the way I find myself doing now?

My god, I'm so glad that I had all of those years of not knowing.

Honestly? The hearing loss was bad enough. The hearing loss has always been a challenge and it's been a struggle - had I found out earlier, younger, that my vision could go too? I can't imagine.

So here I am. I am 38. I'm just a month and a few days shy of turning 39 and in this last year, instead of just fretting about hitting the big 4-0, I'm also dealing with a life changing diagnosis that I can't do anything about.

And I thought fine lines and my slowing metabolism were rough.

I can tell myself, "You know it could be worse," all day every day, until I'm blue in the face. I DO know it could be worse. And there are days when I truly believe that the worst case scenario WILL NOT apply to me because my vision is still pretty good so maybe, just maybe, I'll hang on to more of it.

Who knows? Some people will say that blindness is a certainty, some say that's not necessarily the case and I still really don't know enough about it, really, to know one way or other.

And that's because it's so new to me.

And because I hate reading about it.

Had I spent my whole life knowing, I don't know… would that be the case? I don't think I could dwell in the same level of quasi-ignorance in which I currently reside. Surely time would fill in some of these informational holes - holes that I don't mind not having filled, really.

I wish i still didn't know, you know? That I could still just leave it at, well, my hearing is awful and just keep on not knowing about the other stuff, because not knowing was nice. Not knowing let me be fooled into thinking I was finally getting ahead - that everything was fine.

I know that everything will be okay. Somehow. Some way. I do know that.

But I'm glad that I got to spend decades of my life not knowing what was coming. I'm forever grateful to not have had years of waiting for the other shoe to drop. Years of living the best life I could, playing the cards I'd been dealt. And now the game has changed a bit, I have new cards. I have to figure out how to play this hand.

(And that's where the card analogy ends because I hate playing cards and I don't even know if what I just said made any sense)