scared of the dark

Funny_cropped

Have you ever asked yourself if you’d
rather be deaf or blind? I think most of us have wondered this at some time or
another. But what do we do when it’s not just a game, a hypothetical bit of
distraction? This is what my family has been faced with during the course of
the past couple of weeks.

About two weeks ago, my father called to
tell me that he was having difficulty with a part of his vision. He’d awakened
that morning to find that a strip of his visual field was missing from his
right eye. This was especially disturbing, considering that he’s never had any
in his left.

He went that day for an MRI, and was
pleased to find that he displayed no evidence of Macular Degeneration – despite
the fact that it runs rampant through our family. What had happened though was,
unfortunately, not much better. And it was simply a portent of things to come.

There is a condition called Anterior Ischemia of the Optic Nerve (AION). To
break down the name: Anterior means toward the front of the body, Ischemia
basically means without blood supply, and the optic nerve is the cranial nerve
in charge of sensory input i.e.: sight. When you put all of these technical
terms together, what you get is a lack of blood supply to the nerve in charge
of seeing. In other words…a terribly scary set of circumstances.

Generally, when this, AION, occurs there is no real chance of
recurrence. So we all breathed a sigh of relief that the damage that had been
done was not enough to force him to quit working, driving, or any of his other
hobbies such as competitive Skeet shooting and pottery. So, off Maya went to
visit for the holidays, leaving the three of us here in Arizona.

When I called my family on
Christmas, everyone sounded rather glum. I, being the perpetual optimist,
assumed that they were all simply tired. What I didn’t know was that they were
simply trying to get through the conversation without ruining my holiday.

Evidently, during the course of the week
or so leading up to Christmas, my father had progressively lost most all of his
ability to see. He is now left with a very narrow tunnel vision. And even that
is dark enough that he says it looks like perpetual nighttime. This is how it
will be for my father for the rest of his life.

My dad now has no choice but to retire to
disability. He is having a really hard time of it, as are the rest of us. He
was 2 years from retiring, but since his life’s work has consisted primarily of
looking through a microscope, this would now be a pursuit of impossible folly.
He will be selling his guns. He can no longer drive and is trying to locate
software for low vision computer use. Until he obtains something like this, he
will no longer be able to keep up with his blog, Roe Row. You may know him from
my comments section as Rodney. I’ve always enjoyed both reading his blog, and
having his input on mine.

While feeling the loss of so many
freedoms, he is trying to find any silver lining. One thing that he plans to
focus upon is playing more music. From what I hear, he went out with a friend
the other night and jammed on both bass and guitar for several hours. He told
me that he had a lot of fun, and looks forward to going again. I can only hope
that he continues to find more opportunities for new directions.

Medically speaking, there is apparently a
40% chance of slight improvement. Yup, that’s less than half. It has been my
experience with Kajsa; that you never bet against the house. That way, on the
off chance that you do win, you’ll feel that much better about it. When I spoke
with my dad this morning he said that it seemed to be a little bit worse today,
but that at this point that’s ceased to mean a whole lot.

Although my mother has been absolutely
fantastic through these changes, I hope to help them to locate tools (other
than just her) for assisting with his new-low vision life. You see, my dad has
always been quite self reliant. And while being a gentle and humble man, I
believe he has prided himself on being a strong rock for others. So please,
don’t offer any pity or consolation. That is about the last thing he needs
right now.

What I think would be helpful would be any
information and/or resources. Friends, relatives and even just stories you’ve
heard which may be informative or helpful would be greatly appreciated. I can
pass anything along. Or if you know how to permanently change the size of font
on a computer, change the mouse to a larger and darker style…these simple
sorts of things, and other small day to day adaptations, would likely mean a
lot.

I love my Daddy so much.

I want to find any way possible to empower
him during this, his personal hour of darkness.

Thank you.

And for Daddy:

When I find myself in times of trouble, mother Mary
comes to me,
speaking words of wisdom, let it be.
And in my hour of darkness she is standing right in front of me,
speaking words of wisdom, let it be.

Let it be, let it be, let it be, let it be.
Whisper words of wisdom, let it be.

And when the broken hearted people living in the world agree,
there will be an answer, let it be.
For though they may be parted there is still a chance that they will see,
there will be an answer. let it be.

 

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6 thoughts on “scared of the dark

  1. I know you said not to offer pity, but it isn’t pity or consolation – I am truly sorry because this is just a terrible thing to deal with. I don’t know very much about this condition but I will look it up and see if I can offer anything. How frightening for everyone. 😦

    I hope your father and your family find a way to deal with this painful situation and that the dark side of life gives you all a break soon.

    Happy new year. *hugs*

  2. I will offer one “I’m sorry”. Now that that is over, I am glad to hear the music is an outlet–as will be books on tape. On internet explorer, if you go to View – Text Size, you can select the largest size. If ou right click on the computer desktop, you can select Properties, Settings tab, and change the size of the display. In that same area, you can change the Appearance tab to show a larger font size.

    If I hear of any other tips, I will pass them on. Hugs to your family. I am praying for a light at the end of the tunnel.

  3. Thank you running2Ks. I had figured out the Appearance tab. The other’s – not yet. It’s good to learn this stuff so that I can pass it along.
    My mom, bless her luddite heart, has always kept her distance from the computer. I am going to have quite a time telling her how to do this over the phone. But I think she’ll be more than happy to try it.

  4. Sarah:
    You are absolutely correct. And I thank you for the reminder. Sometimes those little reminders are a really good thing.
    I wish you a happy new year, too!

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