The Eyes Have It: Part Two

I went to see the retina specialist on Friday.  Carl drove me in to the appointment, which was a good thing, because we encountered road construction and detours and it took two of us to figure out where we were going.

After a round of tests, my eyes were dilated again and we sat and waited for the drops to take effect.  When the doctor came in, he gave us both a firm handshake and went right to work.

Shining a horrendously bright light into my eyes and bidding me to look up, look right, look down right, look down, look down left, look left, look up left, look up, in rapid succession, and raising my droopy eyelids with his finger, he finally backed away from me on his rolling stool and said, "You have the early signs of macular degeneration."

As he was washing his hands, he said, "Do you have any questions?"

I was sitting in the chair, blinking, thinking.  Macular degeneration? This doesn't sound good.

"Is there anything I can do about it?" I asked.

"No.  There's no cure," he said, moving on to dry his hands.

"So I will go blind?"

"Not entirely, you may be left with what is called 'low vision'.  Mostly, you will lose the ability to focus with your central vision.  It will be similar to looking through a piece of glass with a big smear of Vaseline in the middle, or the middle may go dark.  You'll probably still have peripheral vision, though.  This could take decades to develop, or it could be you'll wake up one morning and it will be there."

Oh.

"I brought my mother to this clinic a few weeks before she died because she developed a black curtain-like thing hanging down.  The doctor injected her eyes with Avastin," I said, "What was that for?"

"That was wet macular degeneration," he replied.  "Maybe you'll get lucky and hold off on progressing to that stage until you're 96.  But there are no guarantees.  Here is a pamphlet describing the problem for you to read up on," he said.  

"You're in the very early stages, so at this point, I could prescribe you AREDs, (vitamins for macular degeneration) but it may be a bit soon for that, it all depends on how fast it develops with you.  All cases are different.   Hopefully, by the time your case becomes advanced, there will be some new treatments in place, you never know.  I'm going to send the nurse in and she will teach you how to check for emergency signs of loss of vision.  Otherwise, I'll see you back in two weeks.  Nice to meet you."

Another firm handshake all around and he was gone.

The nurse came in and told me to cover my right eye with my hand, put my arm out to the side and wiggle my fingers.  I should be able to see my fingers at the top, middle and bottom range of my arm's movement.  Now, cover your left eye and do the same thing, and if at some point I cannot see my wiggling fingers, I'm to call right away for that is an emergency.  

Um, ok.  

All right, you can go to the appointment desk now.  

"Hmmmm, the doctor wants to see you in two weeks, but he's on vacation in two weeks, so you will have to come back in three weeks," the receptionist said.

Three weeks puts us in the week of July 15, when we are having a tour group from Iowa arriving....plus I am still driving an hour every other week for Lyme disease treatments, so I asked, "Would it be possible to move it to the week after?"

"He wants to see you in two weeks, and we're already moving it to three weeks, so no, we will not move it to the week after," she replied firmly.

So, appointment card in hand, we made our way down the elevator, out to the parking lot and into the car.  About halfway home, I broke down crying in self pity and fear.

Carl tried to comfort me, but the tears were rolling.  Everything I was looking at was beautiful, the sky, the clouds, even the weeds in the ditch, and to think I may be losing the ability to see was overwhelming.  

And still is.  

To be unable to see sights like this......makes my heart hurt.

How often we take things for granted, but I must say, my vision was not one of those things I took lightly.  I've worn glasses for severe nearsightedness since I was eight years old and have always had the nagging worry someday they might not be able to correct my sight any longer.  I've entertained learning Braille before I ever went blind, and practiced filling water glasses with my eyes shut out of the sheer dread that someday I would be sightless.  Worry warts like me tend to be almost Boy Scout-like in our lives, "Be Prepared."

But even though I've often thought of the possibility of being vision-impaired, nothing prepared me for the diagnosis, even though he used the word 'early'.  Right away my mind jumped to worst case scenarios.  

And when I got home and sat with the pamphlet in my lap and 'age related macular degeneration' in the Google search box and started reading, my fear grew.  I now had many questions, but wasn't sure which type of AMD I had.

Ironically, at that moment, the phone rang. It was the retinal specialist.

"Did you have any questions?" he asked.

I was wiping away my tears, and I said, "What type of AMD do I have?  Wet or dry?"

"Dry!  If you had wet, we'd be using a laser or eye injections to try to preserve what vision you'd have left, no, you have the dry form, in the early stages.  Any other questions?" he asked.

"None that I can think of, " I mumbled.  Truth be told, my mind was reeling, I wasn't thinking straight. 

"All right, then.  I'll see you in two weeks."  

I was still holding the phone and almost said, "No, you'll be seeing me in three weeks," but the line was already dead.

And you all know what I did, I went on a virtual terrifying search of all things AMD related.  The good, the bad, the ugly.  They're all there on the interwebs.  Some things are hopeful, some are not, some are dubious cures, some are malarkey, most are unknown either way.  All are guaranteed to be expensive.  But what price can I put on my eyesight?

I've known two people who had AMD; yes, they continued to live their lives, but their personalities were greatly dimmed along with their vision.  I'm sure it was because they couldn't see the faces of the people they were trying to communicate with and were unable to read expressions.  For all intents and purposes, their ability to function was profoundly diminished and depression settled in.  

I've had a foretaste of this insidious vision problem with the migraine auras and I know how awful it is to not be able to see anything you actually try to focus on.  The first time it happened, Carl was driving, and I thought I'd caught the flash of a mirror or something in the bright winter light, causing a spot on my vision (like a flash from a camera leaves the spot on your sight. ) 

I tried to blink to clear my vision, but the spot grew and suddenly oncoming cars would disappear as I looked at them.  When I looked at Carl's face, all I could see was his hands on the steering wheel.  I was so scared.  Everything I looked at directly was gone in a black hole.  It was awful.  After ten minutes, my sight slowly trickled back in, but then bright, scintillating lights in the shape of a vast floater were flashing in my eye.  After the light show diminished, a massive migraine descended, but my eyesight was back to normal. 

I had gone to the eye doctor after this, and was told what I'd experienced was a 'scintillating scotoma' and though it affects the eye, it's actually a brain problem.  (Is that supposed to make me feel any better??)  Two years ago I kept track and I had one or two episodes a day on and off for over six months.  I have not had another now for over a year.  I do not miss them.  

But having this diagnosis is still frightening.  One website put it this way:  'The diagnosis is almost as upsetting as the loss of a family member.'  And I couldn't agree more.  I feel like I have a double helping of mourning going on right now.

Yesterday, Saturday, Carl was gone all day helping to move equipment from his late brother's shop.  I was home alone.  Joel and Dave also came over to help Carl with the job.  I was at loose ends.  I should have been out in the garden weeding (as I should be right now) but the way I deal with uncertainty is to write.  I keep a journal and I was writing my fears out, and then realized that in the future, maybe distant, maybe not so distant, I won't even be able to do that for lack of sight.  Cue the tears again.  Poor eyes, they are being assailed on all fronts.

I picked up the phone and called my dear friends.  Just hearing their concern and some stories of how their parents or other friends are coping with AMD helped to calm me.  I am not alone. What would I do without my friends?  I don't want to know.

And then a familiar vehicle drove in.  It was Abby with little Audrey, come to cheer me up.  How kind of Abby to come and offer her comfort and the presence of sweet Audrey took my mind off my problems.  I didn't take any pictures yesterday, my eyes were too sore, but I'm including a picture Joel sent me a few days ago.
 

Who can be sad around this little girl?

 I had no appetite yesterday, and sadly not much ambition to do anything.  I was not a very good hostess.  

When it was naptime for Audrey, Abby left for home.  I wandered out to the garden and half-heartedly pulled some weeds.  I was the picture of dejection again. 

 I am ashamed of myself, this will not do.  My vision is just another thing I'll have to learn to deal with, maybe tomorrow, maybe in thirty years or so.  Every one has problems, I'm not a Special Snowflake.

 As the Charlie Brown cartoon so wisely states:

Some day, I might not see well.  

But on all the other days, I will.