Outta Sight!

Fundus Flavimaculatas.. hey, he was some sort of Roman philospher or politician, right?  Nope, I am afraid not.  It is a disease of the retina, the light reception and transmission area in the back of the eyeball.  It's what I have.  My version is called Stargardt's Disease, is hereditary and congenital, and though I did not know it until I was 25, I have had it all my life.

If you want to know what it is like, just get out an old pair of glasses and smear Vaseline in the middle of the lenses.  That is not precise, of course, since the middle section of my vision is not smeary but actually absent.  Here's another exercise: Reach up and put your hand behind your head.  Now, without turning your head, look at your hand.  You can't see it, right?  But you also don't see a black space.  That's what vision loss is like, whether partial or total.  I don't see a black spot when I look directly at an object.  I just don't see the object.  Another way I have described it is that it feels like you have a cold and can't quite breathe, only this is with your eyes and eyesight.

I was all brave and positive when I first found out about my permanent sight loss.  When you are young, you can compensate.  But as you age, though Stargardt's itself does not tend to worsen, your ability to compensate lessens.  I am now 58, and for the past few years I have started to find it harder to be breezy and upbeat about it all.  I keep thinking, "OK, I get it.  Now can we go back to the way it used to be?" 

The three reactions I get when people learn I have a severe vision impairment are as follows:

1.  "Isn't there anything you can do about it?"  The answer is, "If you mean medically, no.  There is no treatment or cure."  Of course, what I want to say next is, "What?!  Do you think if there was I wouldn't jump at the chance?" 
2. "Oh, that's so awful.  I don't think I could live if I lost my sight."   I want to respond, "What has what you would do got to do with me?  You'd live, and if you are any kind of a person, you'd find your way through it."  I think what I am really wanting to say is that it is not helpful and is outright burdensome to say stuff like that to a person who has lost a faculty.  What exactly do you expect us to say?  Best just to acknowledge the fact and go on without the drama.
3. Then there's the ever popular "I just don't know how you do it!"  Why not ask me?  I will gladly tell you how I use my computer, what and how I read, how I get around, what compensating tools and skills I have developed.  This one is usually accompanied by "You are amazing!"  Let me clue you, disability magnifies what a person already was.  If you are a poor mouth, miserable, helpless person you will be even more so after onset of a disability.  If you were resourceful and motivated before, you will apply those character traits to coping with your disablelty.  If you want to admire me, just admire me.  Remember what it felt like to be told "You're pretty good, for a girl" or whatever subhuman you are.

Why am I writing this, and not for the first time?  Lately things have gotten a bunch more difficult.  The experience of severe vision loss can be rather infantilizing.  It seems like you have to turn to someone and ask them to read something to you, to point something out, or to describe things.  People do get weary of this.  I can tell when my husband is getting tired on a road trip because he stops telling me what we are passing, like signs or shops or the like.

I just stopped doing the cooking for my household.  Blind people can cook, but it's no picnic, if you will excuse the expression.  It happens that my husband wanted a creative outlet.  i was glad to hand it to him.  I cannot see what's in the pan I'm stirring clearly any more and I haven't been able to read packages for some time.  I can't say my heart is broken that I don't have to cook any more, but it is an ending.. something my life is getting fuller of all the time.

There was the last book I read visually for example, sometime in my late 20s.  There was the last time I could see what was going on first on a TV screen and later on a movie screen.  There was the last package I could read and then the last package I could even identify.  I never drove, so I don't have that "last time" to mourn.  There was also the last time I could go out on my own with no anxiety, the last time I could tell when the walk sign came on, or the last bus whose route number I could read. 

That is not to say I am without resources.  I have no patience at all with people who put down computer technology because I have the remarkably rewarding life I have largely thanks to the Internet, the web and the tools developed for people  like me to use them.  No I don't use speech reccognition --  my fingers work just fine, thank you very much.  It's what's already on the screen I need help with, not what I want to put on it.  For that I use unforgivably expensive assistive tech, namely software that lives inside my computer and both reads aloud to me and magnifies a portion of the screen for me.  It is more physically and perhaps psychically taxing for me, but it is far from impossible.

Yes, I am amazing.  I admit it.  Actually what I am is restless, always looking for a new project, find it hard to sit still.  I am intelligent and creative   So I am unusually well equipped to cope with a disability.  My favorite thing someone said to me recently was "You are very good at making lemonade."  They meant of the lemons I have been given.  That's exactly it... I am good at making lemonade.

I have one helluva life.  I am married to my best friend and true love.  I am comfortable financially, thanks to him primarily.  I am free to pursue the profession I adore.  My health is good enough.  I live in a wonderful region, the Pacific Northwest.  I was born at a time when all the tools I need are available.  I have a gorgeous orange cat sitting next to my keyboard, a kitty who worships me.

So I hope, if you had any, I answered a few questions.  It is my fond hope that you will accept me as I am, smart, funny, kind, and all of that part and parcel of me with or without fundus flavimaculatus.

If you have more questions, I will be happy to answer those I can.