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December 2017

Living With Being Legally Blind: The Onset

I lived with glaucoma for 30 years but the onset of legally blindness came suddenly.

My name is Jean Frank.  I’m a former art dealer from New York who has been legally blind for a little more than two years.  I’m hoping that by starting this blog I’ll be able to offer wisdom and encouragement to others who are legally blind – and to their caregivers.

I developed glaucoma when I was 60 years old, the usual age, my doctors told me, when it develops - if it comes on at all.  I had injections in my eyes every so often, but it didn’t bother me at all and it went on like this for many, many years.  I had the prescription for my eyeglasses changed a number of times, but that wasn’t unusual as it happens to many people.  Then eventually I sort of, you might say, grew into it, and that was how I gravitated to large print, but that didn’t bother me much because as long as I could read that was fine.  I could also see pictures, which was important to me because of my former profession as an art dealer (for 44 years).  

So I did very, very well until 2 years ago.

One evening, I was sitting at my computer, I remember it exactly.  My eyes weren’t really good, but I didn’t’ feel the need to complain because I guess the deterioration came on so gradually.  I was working on something and suddenly sharp flashes of black, gold and silver appeared in my left eye - and then they went away.  I didn’t’ know what happened, and I couldn’t imagine what it was, but I figured I’d see the doctor the next day.  After all, I was so used to visiting doctors for my eyes that it was always, “well, tomorrow is another day.”  So I went to see my doctor.  It turns out I had suffered a stroke in that eye.  The doctors tried all sorts of things but there was nothing that could be done to restore my sight.  Everything was blurry.

When my doctor rendered his decision that I was legally blind, I became hysterical.  “I’m not!” I shouted, “I can see.  There, I can see the chair.  I don’t need a stick.”  “No”, he said, “legally blind doesn’t’ mean you need a stick in order to walk around.  Rather, it’s just a term used by the federal government to regulate activities or distribute benefits.

This happened the year I turned 90 and just after I finished writing the final essay for my book, From My Vintage.  I went absolutely mad.  I couldn’t read, I couldn’t see, I couldn’t write.  I was totally, in my mind, crippled.  And I really was if I couldn’t write or read.  And I couldn’t cook.  The kitchen, I loved the kitchen.  I spent a lot of time in it, it was my sanctum sanctorum.  I loved being in the kitchen, but now I was more or less limited to making a cup of coffee, a cup of tea, a piece of toast, or I’ll put up an egg in the water to boil and then stand there until it’s finished.

I wouldn’t go out for dinner.  Restaurants are dark.  Friends could read me the menu to me, which I don’t mind, but I couldn’t see the fork to get it to my mouth.  And, oddly enough, the taste of the food was never as good as I remember it being.  It’s partly seeing it, partly eating it, the tactile sensation.  So I gave up going out to dinner.  I gave up everything, just fighting and crying on and carrying on. 

Well, I spent almost two years fighting it, looking for ways to get out of this.  I had no idea what I was going to do.  But it’s the cliché of fighting wind mills - there was nothing I could do about it, I could just fight it.  I’d dream of jumping out of windows - God knows, everything went through my mind and I went absolutely crazy trying to find something to do.  But there was nothing.  These two years were an absolute horror.

These feelings of rage and hopelessness lasted up until maybe 6 months ago when a very dear friend of mine said to me, “Jeanne, nothing’s going to happen until you accept your limitations, really accept them.  You can’t do anything and once you accept this you go from there - as long as you live in the now, as the Buddhists say, which is truly the only reality.  You can’t negotiate with the future and the past is past.  Let it alone and just accept it and go from there.” 

And I thought about it, thought about it and going from there I came here, to this blog.  After another friend suggested and explained blogging to me I saw a little light and it may be what will make it work, I don’t know but I’m willing to try.  Do I need to write it?  I WANT to write it.  I don’t know how I’ll do it, I just will.  And I’ll write about what it’s really like.  I want to share what I've learned because I have the need to give.  I’m hoping I might be able to contribute something to those who aren’t aware of how they can manage their diminished eyesight.

I look forward to your comments and I invite you to share your own stories with me.

 

More to come …