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Blinded by the Light

November 27, 2007 | Category: In My Life

It's a universal truth of humans, I think...

Believing that there's always more time.

So, wait, I have a point somewhere.

Right. Now I remember. So, on the way to St. Ives with this sack of cats, trying to find out why my hands go numb.

We've found so many fun things so far. Infections and brains and such.

But the root cause still not determined.

So the next step, in my Doctor Bingo, was to spend yesterday with an aging and abrupt Ophthalmologist. My beautiful son patiently playing with his Leapster in the waiting room.

"You see your Optometrist annually?"

I nodded.

She sighed.

She shook her head slowly.

My heart sank, my ultra-dilated eyes trying to make out the expression on her face.

So, anyway.

Lupus has quietly been killing my eyes; the inflammation causing a retinopathy that is robbing my sight. Sneaking like a thief into the night, collapsing the blood vessels that carry oxygen to my retina.

It is permanent.

The most severe damage so far to date is to my left eye. My right eye is stronger, rocking the house while that lazy ass left one has been out by the pool. Unfortunately, depth perception needs 2 eyes in stereo so that probably explains why I nicked CD's Passat some weeks back pulling out of the driveway around it.

Ahem. That's my story, and I'm sticking to it.

She said that this moment, right now, is the best that my eyes will be for the rest of my life.

It is downhill from here, and the only factor in how long I have is how well I can control my flares and my blood pressure going forward. So, more steroids, more tests, more awareness.

I guess the damage has been happening quickly so it was damn lucky that my doctor got a niggle that I should see an ophthalmologist for hand numbness.

Which? Have I mentioned? Is still unexplained.


I'm pretty pissed. At no point on this carousel did I expect that looking for a reason for hand numbness would lead to losing my sight.

I should have had some damn warning. A pink slip into my dreams. A dove crapping 'check your eyes' onto my windshield.

A premonition.


I haven't seen all I want to see yet. There is still so much more ahead of us.

The slow, exploding smile of my son as he figures out a puzzle. The sly sparkle of my husband's come-hither glance. The swirl of hair and teeth and arms as they throw leaves at each other in the yard.

Until I've seen it all, then it can't go dark. Every pout, every landmark, every freckle.

There is daylight left in this day. Some random Monday doesn't get to echo with the Imperial Death March, bringing shadows and gloom.

It doesn't.

Because I say so.

There is still time.

There has to be.


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Are you okay? Goodness, you are going through so much!

I am sending all my positive energy and thoughts your way. If you need a shoulder, I am here!

Posted by: Eyes on December 4, 2007 11:26 AM

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Posted by: vjacegpb on December 3, 2007 06:57 PM

Just a hug. That's all. And maybe a cup of tea. And an afghan. On the couch. With a fire. And our husbands and children playing outside while we talk.

But mostly a hug.

Posted by: Stacy on November 30, 2007 08:55 PM

Oh fuck.

The suckage that is lupus cannot be counted by mortal man. I've got a couple of acquaintances who suffer from lupus and it's so subversive and individual. Very hard to predict.

I hate lupus.

But not as much as you and CD and Bear must.

I wish I had some better words, something pithy or strong or inspiring. But I can only think of how I would feel, faced with this news...and no words are adequate. I'm so, so sorry.

Posted by: paige on November 30, 2007 04:12 PM

I had no idea that a person's eyesight could be damaged by lupus. That sucks big time. I'm just happy you're at home with Bear now...

Posted by: Grace on November 29, 2007 10:02 PM

I will be praying for you too. Hugs!

Posted by: Cindy on November 29, 2007 07:08 PM

i don't know what to say, except that I am thinking of you and that wish I could make it all better for you :-)

Posted by: caltechgirl on November 28, 2007 10:50 PM

Just a periodic vistor adding her prayers. I'm so sorry.

Posted by: Hexe on November 28, 2007 06:57 PM

You are in my thoughts and prayers and sending good energy and all that. I am glad we talked the other day. This this is pretty scary stuff, and you are on my mind a lot! I am hoping for the best.

Posted by: Laura on November 28, 2007 05:40 PM

Oh, sweetie... I don't know what to say. I was just coming by to catch up and read this. I can't believe it can be. I'm so sorry.

Posted by: sue on November 28, 2007 12:20 PM

I agree lupus clearly sucks. I'll be thinking about you and your family.

Posted by: momtowahid on November 28, 2007 08:20 AM

Oh my. I'm so sorry, Elizabeth. I really wish it could have been something easier than this. My thoughts are with you and your family.

Posted by: christina on November 28, 2007 03:46 AM

I will be praying for you!!

Posted by: Janie on November 27, 2007 11:52 PM

I don't know what to say, other than a prayer that you hold onto as much of your vision as possible, for as long as possible.

Posted by: Jane on November 27, 2007 09:43 PM

I have no words other than...I love you. And lupus sucks rocks.

Posted by: Cheryl on November 27, 2007 09:04 PM