It's been five weeks since I met with the team of eye peeps at Kellogg and about four months since my eye doctor first told me she spotted pigment changes in my retinas. A lot has changed in those four months - namely, the amount of time I spend thinking about (and fretting about) my eyes.
If I'm being perfectly honest, I don't think I gave my retinas a single fleeting thought before - and the only time it might have even crossed my mind was in terms of the Retina Display on my iPhone 6 (thanks, Apple).
Before January, I don't even think I knew what my retinas did, let alone devoted hours of my waking time being upset that mine don't work.
My brainspace has changed a lot. So has my vocabulary. Now my vocabulary is full of...
Your retinas are light sensitive tissue lining the back of your eye. Light rays are focused onto the retina through our cornea, pupil and lens. The retina converts the light rays into impulses that travel through the optic nerve to our brain, where they're interpreted as the images we see. Fun fact: if you mix up the letters of retina you'll spell retain - I only know that because I've typed retain four times in the last paragraph.
This is the eye test we are all probably familiar with - where you need to identify letters or symbols from a fixed distance. I feel pretty lucky here - this is the one part of the eye exam I feel like I can still kick butt in.
This test stresses me out. It doesn't hurt at all, but it reminds me much of the hearing tests that I should be having far more frequently. It's a test to see how much you're seeing in the periphery... so it's a series of flashes of light in different points of your vision, and you click a button when you see a flash.
If you read the description of an ERG test, you might get a bit weirded out because, hello? An electrode on your cornea? And then, you think to yourself, "Well, I wear contacts, so... it can't be THAT different."
Let me repeat that: electrodes on your corneas.
Nope, it doesn't at all hurt, but it's a bizarre feeling. Also? The gel-goop they put on the electrode dripped out of my eye, ran down my face, and smeared my makeup so I likely looked like the worst nightmare vision of a clown - WITH ELECTRODES.
Not just the guy who sings that "Yeah!" song that my family likes to dance to at weddings. Who knew.
Autosomal Recessive Disorder.
We may all remember from basic biology class that we receive genes from both of our parents. This whole thing has made me wish that I had paid closer attention in biology class.
In the case of an autosomal recessive disorder, it means that I received a copy of the abnormal gene from each of my parents. Neither of them have RP, but both were Carriers of the abnormal gene. There was a 25% chance I'd receive two normal genes and a 50% chance I would receive one normal and one abnormal. Annnnnnd, lucky me, the 25% chance of getting the two abnormal ones (gosh, no wonder I hate Vegas - in the genetic crapshoot, my luck? Not so hot).
You can't control what genes you pass on. You want your kids only to get the super great things about yourself but sometimes... that doesn't happen. For example, I had hoped my daughters would get my naturally curly hair - no go. However, one of them has my nose and one of them has my not-so-endearing tendency to get brutally grouchy when she's hungry. Luck of the draw. Not always good luck.
I had never ever heard of this before this year. And that's probably true for a lot of people. Partly because it's not that common and partly because no one has done an ice bucket challenge for it that's gone viral and raised a ton of cash.
I've linked to the definition of RP before, so I won't again - but what I will say is that if I have to have this stupid thing, I'm going to work to make sure that it's part of the vocabulary for more people. Why? Because awareness brings change. Also? Because I'm going to complain about my retinas, and these tests, and wearing floppy hats, and having trouble seeing at night, and my fears, and...... [What? Like you expected anything different?]