Saturday, July 29, 2006
I'll be back on Tuesday - or Wednesday - with news of how the first needle in eye session goes. That post may simply read "Aaaaaaaaaaaaaaaarrggllllllluhhhhhhhh..."
Enjoy your Sunday, y'all. Hopefully, it's a little less hot than the surface of the sun wherever you are. Have a popsicle. Drink some water. Stay in and watch old movies.
Wish me luck!
Friday, July 28, 2006
When you're forty, and you have a good job in a great place, but you're home on the sofa on a week day?
It can't be good, can it?
When you're forty, and you wake up at 4:30 in the afternoon on Friday, in a dark living room, dazed, clutching a stuffed orangutan like a lifesaver?
It can't be good, really.
When you're forty and you find out the only thing that can possibly save your rapidly failing vision in one eye is a drug FDA-approved for cancer treatment.
Injected directly into your eye.
Once a month for many months.
At $60 a shot.
When you're only forty.
"Ms. Merujo, I'm afraid that, despite the laser surgery, the blood vessels have continued to grow. The blister is now at the center of your vision, and, because of its size, it's more defined..."
"The only course of action is a series of injections. Drug X is most effective, but it's FDA-approved for the elderly only, so your insurance won't cover it. If you want to pursue this treatment, it will be $2000 an injection... there is a cheaper drug, related to Drug X... it's almost as effective... $60 a shot... also not covered by insurance... unless you have $20,000 at least to pursue using Drug X, I recommend the $60 shots."
"At least 8 months of injections..."
"There's a risk of stroke..."
"There is no guarantee..."
"I know this sounds horrible - injections directly into your eye - but the only other option is blindness..."
"I don't want to wait. Let's schedule the first injection for next Friday."
"As this is a controlled cancer drug, it has to be ordered from a pharmacy and delivered directly to you. Then, you'll bring it in to the office for the injection..."
I came home, e-mailed the family, and then slept a little.
Then, the phone rang.
"Ms. Merujo? This is Doctor D's office. The doctor has reviewed the photos of your eye with some colleagues. They feel that next Friday is too late to begin. We'll get the pharmacy to send out the drug immediately. Can you come in Tuesday morning?"
What choice do I have? Needles in my eye or blindness?
"Thank you. I'll be there."
I returned to the sofa, but this time, I stopped en route and picked up the big, soft, friendly stuffed orangutan on my bookshelf. I slept in a fetal ball for two more hours, the orangutan at my side. Stupid, but reassuring.
So, I have another weekend of peeing electric yellow fluoroscene and a jaundiced face from the eye tests & photos today, as I wait for a pharmacy package.
To take willingly to a man to shoot into my eye.
I'm ready to get off this merry-go-round. I really don't like the music it plays.
Thursday, July 27, 2006
Sullivan's blog also features a Wonkette link to a rather amazing on-air exchange between UberFreak Daughter of Satan Ann Coulter and Donny Deutsch, where Coulter expresses some absolutely bizarre thoughts about latent homosexuality and Bill Clinton. Bill "Loves the Ladies" Clinton. Sullivan writes of Coulter: "She's a vaudeville act of a deranged bigot." Amen, Andrew.
When will Coulter's over-extended 15 minutes be up? Hasn't the glue factory called yet?
Wednesday, July 26, 2006
If you know when to take them, you know?"
I found this Wired article via Fark today. Most of it doesn't surprise me. Moscow is a cruel town, like many big cities around the world. And in a city with a dark heart, a spam king who blankets people with crap, shorts his staff on pay, and lives a visibly decadent lifestyle ain't gonna last long.
I *was* surprised to see that the Spam-nik dude was into Scientology. That's a curveball I hadn't expected.
The former Soviet Union has a huge industry on the dark side of the Internet and technology - from music and software piracy to identity theft, viruses, and major league hacking. You can't even call it a shadow industry, considering the hubris demonstrated by its nefarious, unscrupulous participants.
There are a lot of brilliant minds in the old CCCP, most of them honest, hardworking people I admire - particularly considering the economic (and socio-political) adversity they face - but there are plenty of outrageously smart, but unethical, amoral peeps who really don't care if they rob you blind. They just want a sweet ride, a nice dacha, and lots and lots of bling-chiki. And the Russian government - and the other governments in the region - do very little to curb it. When you can buy the latest hit CD, a yet unreleased major film, and a perfect bootleg copy of Photoshop or MS Office for ten bucks at thousands of street kiosks and markets throughout the old Soviet empire, you know that the powers that be don't give a crap. It's the magic of commerce, after all!
"I can program a computer, choose the perfect time
If you've got the inclination, I have got the crime..."
They should all be ashamed of themselves for even wanting to participate in the WTO at this point, frankly.
Yeah, there are lots of opportunities out there. For sure.
There's also a special place in Hell for spammers and pirates and others who steal creativity. The Moscow Spam King just got there sooner than most...
Tuesday, July 25, 2006
I had no idea that a hunk of highway connecting Illinois to Indiana had been reduced to one miserable lane each way, adjacent to a damn toll booth. Fortunately, I was well-fortified with a large mug of caffeine from Sapp Brothers in lovely Peru. Sapp Brothers is a truck stop. That's pretty much it. A truck stop in the middle of Nowhere, Illinois. I think it's a chain, actually, but I've only ever seen the one in Peru. But I love their sign. When I'm driving down from Chicago after a flight from DC and I see their sign lit up at night, I know that it's only 90 minutes or so to home. It's my big night light. This time, though, I passed it in the bright summer afternoon.
Trapped in heavy traffic, waiting to enter Indiana, I had a lot of time to ponder. Why did these people have what appeared to be a pile of hula hoops on top of their mini-van?
Was Krazy Kaplan really that crazy?
Did Krazy Kaplan really sell enough fireworks to pay for the endless billboards strewn through the fireworks-deprived Chicagoland area in firecracker-unfriendly Illinois? Knowing Americans and our great love for things that explode, make pretty colors and loud sounds, I'm betting the answer is yes.
Of course, when traffic finally moved again, I could not resist the siren call. I stopped to check out Krazy Kaplan's fireworks emporium.
Well, just the parking lot really. That was all I needed. There's nothing like Godzilla to say, "Man, these are the best fireworks in town!"
Or, if you don't trust Godzilla, perhaps the Incredible Hulk or a gorilla is more your speed.
Or... the Tyrannosaurus rex... or the cowboy... (I couldn't get a good angle on the inflatable wizard. Yeah. An inflatable wizard. Go figure.)
I ended up stopping for the night at a little motor lodge somewhere near an amusement park in Ohio. It was midnight, I was ravenous, and the only place open was Taco Bell. Lucky me. Nothing like a Taco Bell crap meal when you're craving nourishment. I ate half my burrito in my room and watched part of some odd movie with Gary Oldman as a wish-granting half-leprechaun/half-Native American creature. No, I'm not kidding.
Side note about the motor lodge: the night clerk was a young woman wearing an enormous cross, watching a very hellfire-and-brimstone Christian revival show on basic cable. It was pretty intense - and loud. But the clerk was friendly, and she got me a good room in "the quiet building." (Away from the amusement park families, I'm guessing.) When I lugged my bag out of my car at midnight, a little SUV slammed into the handicapped spot next to me. The doors opened, with a cloud of pot smoke so thick, it amazed me that the driver could see where he was going.
I swear to god, the occupants of the SUV spilled out like an MTV freak show, complete with a Snoop Dogg wannabe, a couple of Kid Rock wannabes, and their massively high entourage, all wearing enough bling and baggy clothes to cover a video shoot. It was the clown car from hell. They would have been simply hilarious, except that, as I hauled my tired ass out of the car, one of the guys decided to ask another if he'd "hit it", poking and prodding and nodding and pointing at me with the subtlety reserved for the drunk and stoned. "Ohhhh, duuuude, no fucking way I'd hit that fat shit!" The other guy yelled, one made pig snorts, and the whole crew got a good laugh out of it.
I responded with relative calm - I was too tired to be really feisty. "Guys, tomorrow you'll likely not remember what you said about me just now, but you'll probably wonder where the hell your car is." With that, I went in and told the pious night clerk about the harassment I'd just received from the crew in the handicapped spot, with no handicapped plates or tags. She had them towed.
The next morning, I was awakened by the sound of one surprised stoner yelling in the hallway: "Duuuude, where the hell is my car?!?" Payback's a biyatch, Snoop, my man.
I hit the road for home, listening to my own music the whole way, with plans to be in my office by noon. But I should have listened to some news and weather. I had no clue that Mutha Nature the East Coast pummeling with heavy storms, bringing flash flooding, death, and road closures to the DC area.
The skies were threatening all through Ohio, and by the time I reach Pittsburgh, the skies had turned dark. I ended up pulling off the road at a small town on the edge of the Alleghenies to wait out the rain that was coming down in sheets. I noticed that, by chance, I was about 17 miles from Frank Lloyd Wright's masterpiece, Fallingwater. I'm a Wright freak. Love his work. I think he wasn't a very pleasant soul, and I wouldn't have wanted to spend any quality time with his arrogant self. But, he was a genius. I figured, since I was there, why not stop in and check it out. The clouds rolled back for a few minutes, and I set out down a winding country road.
I stopped here to grab a drink en route to Fallingwater. Despite the sign, which might lead you to believe they have EVERYTHING in the world, it was actually a horribly depressing and mostly empty store. There was a very thin child inside, rocking in a dusty chair. "Ma," he cried over and over again, "I'm so hungry!" Finally, Ma responded that he could have an ear of corn if he really needed food. I bought some faux Amish preserves and left, thoroughly depressed.
Just a short distance from Fallingwater, be sure to visit Jellystone Park and Wilderness Paintball. I believe Frank Lloyd Wright was a great paintball enthusiast, and he was the model for Mr. Ranger...
I passed this church sign:
Wait. What was that?
Someone call Jay Leno! It's the Cole-Miner wedding. Cole... Miner... in Pennsylvania yet. Love it.
At last, I reached the road to Fallingwater. By then, the skies had opened up again, and there was no visibility. Driving the 17 miles had taken me over an hour, so I was glad to have reached architectural nirvana.
Except for one small thing.
It was Monday.
Fallingwater is closed on Monday.
The rain on my camera lens is the closest I got to actual falling water. Crap, crap, crappity crap.
I returned to the highway and the misty Alleghenies.
Where the rain pounded down for the rest of my drive home...
By the time I hit the commuter road into Bethesda, I'd finally listened to the news. Flooding, rain, frogs from the sky... The last ten miles or so were terrifying - high water on the road (part of which had buckled), no lights, chaotic driving... Getting to my apartment from the car required a walk through a foot of fast running water, into a building with no power.
Ah yes, welcome home!
Tragically, there's still a teenager missing from the flooding that weekend.
Tree branches still litter my neighborhood.
My belongings in the basement storage room are still wet.
And I still have things in my car that I haven't unloaded from the trip. It seems like I'd just gotten back when the mess started with my eye. And now, I have the respiratory creeping crud.
I'm glad I made the trip. I'm extremely glad I made the trip before my vision was reduced. A couple of nights ago, I watched "Eureka", a new show on the Sci-Fi Channel. Without thinking about it, I reached for the phone and dialed my brother's phone number. I slammed it down before the first ring.
I hyperventilated for a minute, and then I just sat in silence.
It's going to take time. The journey was a start, but it's still going to take time.
I'm fortunate to have extended family and good friends and understanding coworkers. But I will tell you, very honestly - the past few weeks have been very challenging. It's been one of those times when I wish I had a partner to share the experience and lighten the grief. Someone who wants you to know that, no matter what, something brighter is on the horizon, and you're not alone. For, even with friends and siblings and good thoughts at work, there is still a feeling of isolation. When good words are said, everyone still goes home to their own spaces. And I'm here in the altered light of my own eyes, trying not to dial my brother's number.
And man, oh man. Do I ever miss my mom these days.
Things will get better.
Monday, July 24, 2006
Sunday, July 23, 2006
So, I left you all hanging in the cabin at
Blakesburg is another tiny town nearly off the map, like Eldon where we saw the American Gothic house. You seriously have to want to find Blakesburg in the middle of the corn and soybean fields. It’s about 10 miles outside of
We were the only visitors to the museum for most of our stay. There were models and wonderful displays of military and civilian aviation, celebrating the lives and exploits of local pilots. Miss M got to see a Link trainer, the device used to put her grandmother through her paces by military instructors back in 1943, and wander through a hangar full of biplanes and monoplanes and experimental light aircraft. I snapped photos of the static models for the Sasquatch and could not help but feel very sentimental over this heartfelt tribute to these local sons.
Notice I say sons, as I saw no daughters represented. Then again, it’s quite possible that this little corner of
I put ten dollars in their donation box and wandered into the back room museum store hidden behind the front door. No one was there, and the rooms were dusty, with a musty, mildewy smell. They had a pile of vintage fruit crate labels with aviation themes, and, in a back room (discovered when my sister hit the lights) some neat t-shirts and hundreds of volumes of old books on aviation and adventure. I know collectors out here in DC would have utterly drooled over the books.
I got the Sasquatch a t-shirt (it would require a wee bit of bleach to remove the backroom stink) and my sister gathered a few things, too. She went across the dirt road to another hangar and handed over our cash as I bagged our souvenirs. It was entirely on the honor system, and there was an honesty to it all that I really miss here in
Outside the museum, there’s a little memorial for the museum members who have “gone west” out of this life. Pretty cool.
We left and headed back toward the park and our cabin. Along the way, we stopped so that Miss M could commune with the draft horses kept by the Amish farmers south of
Along with hordes of horses, we saw some other nifty things on the road, like:
This hideous pink house...And...
Lollipop Bait Shop - if you enlarge the photo, you'll get a good look
at the fish enjoying a treat on a stick...
And (sticking with a fishy theme)...
(With my car, the Crapmobile, in the background.)
We stopped at an Amish bakery – a shack outside a farm house – and bought fresh cookies to share with Nurse Rachet and the girls headed home that afternoon. At an Amish grocery store, we also picked up some noodles and odd sweets (twizzler-type treats, but root beer flavored) to take back to the cabin. That night, after Nurse Rachet left, sad to curtail her vacation, we had “Festival of Leftovers” – meats, veggies, whatever was in the fridge – with an ice cream chaser. (Rather decadently, the last of the ice cream would be revisited as a breakfast food before we departed the cabin the next morning.)
It took us the whole next morning to pack up the cabin and hit the road. Nurse Rachet had left us a wealth of food and supplies, and both my car and Social Worker’s were loaded to the gills by the time we headed out, bound for Moline, but with a couple of planned stops en route.
We were taking Ed’s ashes to TrekFest in
A gold t-shirt.
See where this is going?
You don't want to show up at a Star Trek event dressed like old-school command officers on ye olde Starship Enterprise. Yet, here I was, doing my "fat Kirk" impression - worsened by the fact that I was also wearing a gold and black National Geographic baseball cap. Oy vey. My sister thought it was hilarious. I felt like the Nerd To End All Nerds. Keep in mind that I love Star Trek. Hell, I made tribbles once in junior high (no skills required - just a couple of circles of fun fur, thread, a needle, and some stuffing.) But I don't dress up like characters. No sirree, bub.
With my sister laughing all the way, we made our way to the local giftshop in Riverside, Iowa, where I bought postcards noting it as the future birthplace of - "Captin Kirk." Yes, they are printed that way. Captin Kirk. They also sell multi-colored "party tribbels." The Sasquatch thinks that spelling may be a copyright thing. Hmmm. The sweet owner of the shop told us that half the town clears out when the Trek Fest comes to Riverside, and the other half eats it up (and makes a few bucks, too.) To each his own. Turns out, our stop was a handful of hours too early to see any of the festivities, but we were just tickled to be making the stop at all.
The shopkeep directed us down the block to a monument, hidden behind a hair salon, marking the Kirk birthplace. After a pub lunch next door, we ventured forth with Ed's ashes in tow, to see the magnificent monument.
Here it is folks:
Yep, that's my brother up top. My sister actually weeded the rock garden in front of it before we took pictures. She figured it was a special occasion, so the weeds should go. Of course.
Here's Social Worker and Miss M, joining Ed and the good Captain:
And, finally, yours truly, the giant bumble bee, Merujo of Dorkwad Command:
Before we left town (where I accidentally got separated from my sister in her car for the rest of the ride back to Moline), I took this photo at an antique tractor dealership (just someone's yard, really.) This is my favorite photo of the entire trip:
Neat, huh? I wish all my photos would turn out like that!
It was, otherwise, an uneventful drive back. And my last few days in Illinois were quiet. Time with family and friends, a few quick photos of local landmarks...
Yes, we have a martini bar in downtown Rock Island, Illinois.
and the Belgrade, the local bar - still going strong.
It gets harder and harder to leave, each time I go home. This time was especially hard, knowing that I was leaving a family - a set of siblings - that would never be whole again. We're getting older. We are moving in all sorts of different directions, even when we're standing still. I cried leaving Moline. I was dead tired, and I could have used a few more days to just sleep. Instead, I headed for Chicago and then eastward, home. I tied my hair back, covered my left arm in sunscreen, opened the windows, plugged in the mp3 player and turned the volume up. Way up.
Little did I know, Mother Nature was screwing over the whole East Coast. It would have behooved me to listen to the news at some point during my drive back to DC. Oh yes, indeed, it would have...
Saturday, July 22, 2006
Tuesday, July 18, 2006
Along with a more defined, broader sense of the blind spot, I’ve developed increased double vision in the past week, and with it, incredibly powerful headaches. I’m keeping this to myself at work, but the nausea that accompanies the headaches can be debilitating. I’m drinking a lot of green tea, listening to soothing ocean waves and doing “deep cleansing breaths” at my desk, but it’s not helping much.
Most of my free time right now is spent curled up on my sofa at home, napping. I’ve been very tired since this started. Part of that may be depression, surely. But some of it is just physical exhaustion brought on by dealing with this. I have a lot I need to do, but I’m so tired, I can’t get it done. (Even writing that damn
Last night, I discovered that my night vision is seriously impaired now. It took a great deal of concentration to drive home after running errands. I’m very frustrated, as I love driving, I love driving at night, and I like to take road trips. I don’t want to be dependent on other people, nor do I want to be a burden on my friends. Burdensome people can grow to be tiresome people, and that’s not where I want to be.
I have to toughen up and deal with this, but I’m not sure yet how far this is going to progress. It’s difficult to deal with something that may worsen; I don’t know what the final result is. I find myself wondering what kind of game plan I should have. Do I handle this with a “one day at a time” philosophy? Do I look to a brighter future? Do I make contingency plans in case I lose the one eye entirely? It’s difficult to say. I woke up this morning wondering if I’ll pass my driver’s test in November. I can’t imagine not being able to drive.
Today at work, I read a quote from one of our emerging explorers, Andrew Zolli, a futurist and demographer: “Societies with positive images of the future tend to go in positive directions. Not because those predictions are accurate, but because they evoke a lot of optimistic behavior. We inherit the future we foresee. So where do we want to go?”
Interesting concept. I try to remain optimistic, but my optimism is easily broken. I can be having a great day, a good morning, and then, some stranger on the street will call me “fat pig” or “wide load” or “fatass” or “piece of shit”, and my optimism – and my appreciation for the world and other humans – is lost. It can take me days to regain it each time. I become bitter, angry, and withdrawn. I try to ignore it, but the pain lasts. Now, that experience is compounded by the issue with my eye. My optimism fades when I can’t see someone standing to one side of me or when I can’t read the words on a page clearly.
And yet, what choice do I have but to try to keep some positive view of my own future? If I don’t, I will fade away. Lost like the pigment seeping from my eye. I still wish I could brush by people or touch them on the shoulder and have them understand and feel what I do. I guess the best I can do is write about it, and hold on to some wish for brightness ahead of me.
“We inherit the future we foresee.”
Indeed. Where do I want to go?
Monday, July 17, 2006
Sunday, July 16, 2006
Soon, more words for you.
For now, I thought some of you might find this interesting. My blind spot creates some frightening images for me now. I see doubles of words and small things now - I thought someone had two "Jesus fish" on his car today. Indeed, he only had one. No religious overkill (it was a "Fish 'n' Chips" fish, anyway), just my permanent optical illusion. One of the freakier things is that, now, when I look at my own eye in the mirror, even though the Sasquatch swears it looks normal, this is what I see:
What I see is my eye, hazy and wavy, but with, seemingly, a large, uneven segment of the hazel pigment missing. Just grey/blackness in its place. I quietly freaked out when I saw it, but the Sasquatch told me, it's actually fine. It's simply part of the sight that's missing. Today, I showed him how much of my vision is gone. He ran his hand before his face for me (his wonderful face, half of which is gone in my eye) and I told him when his fingers vanished and when they reappeared as melty Dali-esque figures.
Okay, enough dwelling on this. My next post will be the rest of the Iowa saga. It will be long, as it will have lots of photos crammed into it. If I can hack staring at the screen for a while, I'll have it up tomorrow.
Now, off to bed...
Wednesday, July 12, 2006
RIP, Barnard Hughes. Another great character actor gone.
This morning, a huge box arrived for me at work, and within it, a styrofoam cooler of fabulousness: two half-gallons of luscious, sugar-free ice cream from Whitey's, a hometown legend of dairy goodness. One of my coworkers is also from Moline, Illinois, and she and I just marveled over the fact that we had actual, gen-u-ine Whitey's ice cream in our office, resting on blocks of dry ice, fogging up the room. If you're from Moline, this is like a religious thing. Seriously.
Beautiful. Absolutely beautiful.
I have really cool friends.
Thank you, ladies. You are the best.
And, I have dry ice now, so I can restage the "Stonehenge" scene from "This is Spinal Tap" right here on my desk.
While I eat ice cream.