fuchs dystrophy

October 27, 1994

October 27, 1994

 Writer’s Guild arbitrations are similar to lawsuits, in a way. Sometimes you’re forced into them against your will. All competing writers have an opportunity to present their case in a statement and there’s money at stake –  credited writers split future residuals (uncredited writers get nothing) and usually a bonus is tied to whether or not a writer receives credit. In addition, a produced credit ups your asking price on your next job. (Usually. At least it used to.) In other words, there are stakes in this game worth fighting for.

Once a Princess always a Princess

Just like lawsuits that go to trial, the outcome is never certain. Three anonymous WGA members read all the material submitted by participating writers and independently reach a decision about who deserves credit and why. Majority rules. If there’s no agreement between the three, the Guild gets them all on a conference call until consensus is reached.

Majority Rules

I’ve participated in several arbitrations, all of them stressful. The suspense ends relatively quickly – most arbitrations start and finish in two weeks or less. I’m a nervous wreck until the phone call from the Guild, informing me of the determination. So far I’ve prevailed in all of them probably because I walk away if I feel my claim for credit is less than rock solid.

Princess KathleenI worried obsessively about the lawsuit referenced above, probably because – not being directly involved – I had no control over the outcome. As it turned out, J was right – my apprehension was unwarranted, nothing catastrophic happened. Our insurance companies settled things long before it went to trial. If we were served with a similar lawsuit tomorrow, though, I’d freak out again with fear we’d lose everything.

Don't roll the dice

I would have made a terrible lawyer because I deal so poorly with uncertainty and ambiguity, the state in which all the trial lawyers I know live.  “Doesn’t it feel good to roll the dice?” J asked me during one of my arbitrations.

No! I don't want to role the dice!No, it’s excruciating. It’s why I don’t gamble, either.  I have to settle for J telling me it will be okay.

May 21, 2005

May 21, 2005

Our treehouse

 I was in charge of planning our cross-country road trip and booking our lodgings. Most of my selections came straight out of the pages of Eccentric America, a terrific resource.  The Out ‘n’ About Treesort in Oregon and Ravenwood Castle in Ohio (exactly like it sounds like it should be – a replica of a Celtic castle) were the two most interesting places we stayed. I wanted to book a night at Sod House, so we could experience how early American settlers lived, but John drew the line at sleeping on sod.

The Oregon Vortex

There was a bag swing and rope ladders at the treehouse. I chided Sam and Alex when they were unable to climb up the rope and offered to demonstrate how easy it was. To my horror, apparently I’ve lost ALL of my upper arm strength over the decades – I couldn’t make an inch of progress.  To explain my failure, I shouted “I have Fuchs!”  and they responded with hysterical laughter. I do have a tendency to blame Fuchs (genetic cornea disintegration, basically – link to blog 9/4?/04) for everything, even though realistically it has no effect on anything but my corneas. This episode was videotaped but, alas, we lost the camera and all of the film well before anybody could post my humiliation on YouTube.

Sam on the swing
Sam on the swing

As one would expect, there was no television and no internet service in the treehouses so we spent an old-fashioned evening playing hearts and spades.  I regret not taking more photos since each treehouse was unique.  Ours had an upper adult unit connected to a smaller kid’s room by a swinging bridge. The only downside was showers, sinks and toilets were on ground level, about 75 feet away.

September 7, 2004

September 7, 2004During a routine eye check-up in my thirties, my doctor diagnosed Fuchs Dystrophy. Having been blessed with 20/20 vision all of my life, this came as a shock. He advised me to wear dark sunglasses all the time to prevent my eyes from flooding with light.  On mornings when my vision was more impaired than usual, blow-drying my eyes three or four times might help. Blow dry my eyes? I couldn’t even blow dry my hair. The best option, he said, was a cornea transplant.

The man was clearly on crack. Best option and cornea transplant didn’t belong in the same sentence. Besides, I had perfect vision. I didn’t see that doctor  again or find a new one. No need, you know?

A window that refracts the world likes Fuchs patients see it. Note the crispness of the right window frame as compared to the foggy indefinite view inside.
A window that refracts the world likes Fuchs patients see it. Note the crispness of the right window frame as compared to the foggy indefinite view inside.

Flash forward twenty years. His diagnosis was like the time-delay curse Malicifant laid on Aurora. I almost forgot about looming doom but his prophecy didn’t forget me. Before I knew it, I was face to face with Fuchs.

Fuchs Banner

You’ve never heard of it? That’s because it’s relatively rare, occurring in roughly one percent of the population. My sisters and I all have it – my case is the worst – because it’s hereditary.  I trace my case to my paternal grandmother, who rinsed her eyes with boric acid in a futile effort to remove the film on them. I spent hours scrubbing reading glasses hoping to make paper white and ink black like they used to be.  On the left, below, see how printed material looks to normal people. On the right, see what people who have Fuchs see. (All illustrations copied from http://www.fuchs-dystrophy.org/ourview.html.)

Normal ChartFuchs Chart

 

 

 

 

 

 

 

How does Fuchs make it seem like your eyes and/or glasses got smeared with Vaseline overnight while you slept?

People with Fuchs have dead or dysfunctional cornea cells that will never, ever, regenerate. Consequently, they’re not available to balance fluids which build in the cornea – particularly overnight when your eyes remain closed for hours. People with Fuchs wake up unable to read a newspaper but their vision improves as the day grows long.  The cornea swells and thickens causing glare, blurred vision, and sensitivity to light. Tiny painful blisters can form on the surface of the cornea. There is no cure, no preventative medicine and no way to predict how bad or how fast an individual case will develop. So far, neither of my sisters require treatment for their Fuchs. I’m the lucky one.

Subconsciously, I’d been compensating for Fuchs for years. At social occasions, I’d surveil the room and target the chair facing furthest away from the sun. I stopped driving at night because every head light, street light and tail light exploded with star bursts and halos, making it anyone’s guess whether the Ventura highway featured twelve lanes or six, let alone which one was mine.

Below left, a depiction of how a sufferer sees headlights. On the right, how streetlights look to me.

HeadlightsStreetlight

 

 

 

 

 

 

 

 

A total lack of depth perception launched me face first off curbs or the final step of a staircase until I learned to clutch the railing and train my eyes on the ground.

Dr. Anthony Aldave's Lab
Dr. Anthony Aldave in the lab

So I agreed to a transplant. My surgeon, Dr. Anthony Aldave, was a leader in the field who published over a hundred research papers on Fuchs. He’s also tall, dark and handsome, hotter than many who play doctors in movies and TV. As my sister Joyce put it when she consulted him about her Fuchs, “Hubba hubba.” Not surprisingly, he’s the cover-boy on the Jules Stein Institute’s brochure.

Jules Stein Eye InstHe’s charming, funny and interesting. Not every surgeon would run with the bulls in Pamplona. He chose eye surgery because it demands tiny, delicate, perfect stitches. He’s so good I don’t even jump when he uses tweezers to pull a broken stitch out of my eyeball. I’ve learned to love eye drops.

It’s a good thing, too, since Dr. Aldave and I won’t be going our separate ways anytime soon.  At any time, I could still reject the transplant in my right eye and one of these days I’ll need another dead person’s cornea stitched into my left.

 

 

 

 

 

 

 

 

 

 

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