Optometry Appointment

Why is it that even when I have a good appointment it is still not only good... and I always end up in tears anyways??
Chronic illness of any kind is complicated.

So I have early onset Age Related Macular Degeneration.
Already confused?
So was I.
I was first diagnosed at age 21 by a team of ophthalmologists because it was previously considered impossible to get this disease unless you were over the age of 65 (hence 'age related'). But there I sat, young 21 year old, with a bunch of drusen in my macula and fighting to retain my sight. My eyes, at age 21, looked as though they were already 70 years old. (So I'm more 'old eyes' than 'old soul').

Fast-forward 11 years and it has progressed extremely slowly. (I would also like to point out a particular oddity that my father-in-law suffers from the same disease, and was diagnosed in his 20s as well). Bonkers.

Today I had a basic checkup to see the progression of the drusen and check my eyesight.

The good news is that my eye prescription has not changed. In fact, with contacts or glasses, I currently still have 20/20 vision.
Super exciting!

Until he explains.

He said, very clearly, that if you look at the scans, there is no way that I should have 20/20 vision. He said that my brain has been particularly good at adapting to my changing eyesight. When I use both of my eyes, my brain is very adeptly filling in the literal holes in my sight. (Hooray for being able to adapt consciously AND subconsciously. How fascinating!).

So even though today was all very good news, there is still this very serious and very daunting undertone.

If my scans are basically saying that I should NOT be able to see 20/20, there is that very real possibility that I may wake up one day - soon - unable to see.
I have already mentioned the specks in my vision - which I mostly only notice when looking at a solid-coloured wall, a bright clear sky, or a field of snow. Some of those are normal average-person floaters, but many of those are from the drusen in my vision.

I have been a little more nervous about driving lately. Not for any noticeable reason... my sight is fine and once I am driving I don't feel nervous at all. Nothing feels any different. Nothing looks differently. Yet perhaps my mind is telling me that I may lose that very important privilege of independence sooner than I would expect. Maybe my brain is beginning to have a tougher time filling in those holes - even though my vision (with contacts or glasses) is still technically perfect.

Or maybe I am just overthinking everything.

Either way - I wish I could just put away that daunting undertone and forget its existence by hiding it in my back pocket.
Unfortunately, it really brought it all home again today. I have been at risk for losing my eyesight for over 11 years. I could wake up at any point and be legally blind. Although I try not to dwell on that, on eye appointment days it is difficult to ignore.

Fingers crossed that there will be a new treatment available by the time it starts affecting my daily life.