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December 14, 2009

There are worse things than going blind…

I don’t have cancer.
I don’t have a heart condition.
I just have really crappy vision, that is (apparantly) getting worse.

Just one year ago, I met with the top-dog of high myopia. A guy who has spent his career studying the effects of progressive, degenerative myopia.

Side note: Did you know that the further east you go, the more common genetic high-myopia becomes? Relatively rare in the U.S., it’s seen much more commonly in Eastern Europe and is almost common in Japan.

On his advice, I underwent a procedure on both eyes that was supposed to halt the progression and stabilize my poor, over-extended retinas. I spent a combined 14 days on major painkillers; enduring pain-worse-than-having-children-cut-from-my-belly. And yet, I’m still left with one uncooperative retina. My left eye didn’t get the memo, and my retina is continuing to tear and split. I saw 20/25 with contacts just six months ago. Today I was at 20/50.

People, it is my dearest wish to grow quite old and be the matriarchal dame who equally terrifies and fascinates my grandchildren. I plan to be demanding and dramatic, full of stories and adventures, and I want to live up to the adage: well behaved women rarely make history. Ok, maybe not quite so extreme, but how about in the words of Oscar Wilde: I’m not saying we ought to misbehave; we should just look as if we might.

But not without being able to see.

Right now I am feeling scared, discouraged, angry, mortified, and, on top of all that, disgusted at all of the above. I mean, really. Get a grip.

I think part of my horror stems from watching my mother’s decline into Huntington’s disease. Unrelated to that, I come by my vision problems honestly, I inheirited them from her. She inheirited them from her dad. And so on. (Side note: miraculously – and I do mean miraculously – both my boys have perfect vision and none of the markers that would indicate they will ever go through this. My neice, at 7 years old, is already wearing a -9 in glasses, my 4 year old nephew a -5. But technology continues to improve and God-willing, they won’t ever sustain the kind of damage I’ve got.)

Back to my point: as my mother deteriorated into her illness, she became more and more dependent upon us. She was helpless.

I have a desperate horror of becoming that person. I adore who she was, but (baring my soul here) who she became was a nightmare. She was needy. She was fearful. She was frail.

I don’t want to be that person. I want to be the one who takes care of other people, not the one being taken care of.

But, the very real potential to become more dependent is out there. Driving at night may soon be impossible.

Egads. The word “handicapped” is flitting around in the back of my head and it makes me want to throw up. The last thing I want is a label.

My heart is full right now. I don’t know what the future will bring. Uncertainty is my only answer.

After giving me nothing but unanswerable questions today, and looking compassionately on as I melted into a tissue, my doctor turned back at the door:

“Do you pray?” he asked.

I laughed a little. (Ok, to be quite honest, it actually might have been a bitter snort. I was not at my best at that moment.)

“Yes.” I said, “Every day.”

“Keep doing it.” and he turned away to schedule the next round of tests.

So I stuff down the impulse to keep all of this a secret, lest you pity me and as a result I burst into flames from the sheer mortification of it all, and I try to accept with my heart as well as my head that, as always, prayer is more important than pride.

4 Comments leave one →
  1. December 14, 2009 9:39 pm

    >Praying! Thanks for sharing. What a beautiful thought that prayer is more important than pride. This must be terrifying, but it'll be okay, even if it's not. Love you tons!

  2. December 28, 2009 2:01 am

    >The enemy is a thief who comes to annihilate, kill, and destroy. You are taking a mighty stand to fight back by sharing your feelings and fear. Your enemy will not triumph over you.

  3. November 1, 2012 1:21 pm

    Oh, Adelle. I SO GET THIS. Watching my mom disintegrate from dementia, slow but sure, makes me want to scream, NOT ME, PLEASE. I don’t want to do this to my kids, to my husband. BUT. We don’t get to choose that, do we? So – first – I thank you for reposting this and filling us in on what you deal with. That is brave and it is good. And second – even as I rail against what is happening to her, I know that ultimately – my mother is safe and that all will be well. And I believe that for you, too. Even if the very worst happens — you are being readied, even now, to survive and thrive. I pray it does not — but you? You are gifted by God with feistiness and spunk and intelligence. It will be okay. YOU will be okay. Blessings as you travel — freedom from fear, and gentle peace throughout every cell of your body.

  4. Claire permalink
    November 1, 2012 2:26 pm

    Thanks for such an honest post, Adelle! You will definitely be in my prayers

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