It’s amazing. In the blink of an eye, you finally see the light.

A thought finally occurred to me:

Holy crap, I have GOT to get out of this poor pitiful me funk I’ve gotten myself into. I need to fix my attitude.

…and like that a weight has lifted off of me.

I felt my body loosen up and my spirit raise.

How can one simple “a ha” moment make so much of a change in one’s outlook?

It wasn’t supposed to be this long.

I wasn’t supposed to be on the drops this long. I don’t know how long it’s been. The ability to hold numbers in my head for long was the first thing to go. Days of the week followed.

All I know is the finish line keeps moving.

Surgery number nine is scheduled for March 29. That means that I’m on the drops until at least June 1. After that I’m done. I can’t do it. I’m weak.

Last time it took six years for the side effects to be this bad. I’ve done it in less than one.

What are you talking about?
I’ve become a monster, a hermit, and a broken human being. My mood swings are so wide, I’m beginning to think I’m bi-polar. I don’t feel like me for most of the day. It’s like I’ve left some asshole in charge of my body and I get texts sent to me when he does something stupid or hurtful. When I am present, I feel like a giant child – like I have no concept of proper social behavior.

Sometimes, I’m halfway between here and wherever it is these drugs take me. Inside my head I hear words form, but it takes forever for my mouth to move – often the conversation has left me far behind. Much of the time I don’t know what people are talking about or what’s going on.

I’ve been absent for almost a year.

The worst part is that I feel like I’ve abandoned my wife. I don’t feel like I’m here for her and I can tell she really needs me now. I feel like a failure as a husband. Failing to connect with the outside world is bad enough. Failing to connect with her is excruciating.

I can’t keep living like this. I can’t keep making her wait for me to come out of this fog.

What are you going to do?
First, I’m taking my wife home. For the first time since C found her birth mother, they didn’t spend her birthday together. She needs this.

…and to get there, we’re taking a road trip. Both of us that.

We’ll hit the road, see some sights, visit with family, pick up a few of the things that didn’t fit in the car last time, hit the road again, and get back home just in time for my pre-op exam.

The road has always worked magic on us, both individually and as a couple. We’re nomads.

Wait. A road trip? Are YOU going to drive?
The thought of getting behind the wheel for the first time in 11 months in the middle of nowhere has crossed my mind once or twice.

I have been given a gift that no one expected. Who knows how long it will last? This is probably my last chance to drive on one of these things.

Life is for living, you know?

Had a bad week

This week was a rough one.

A friend’s mother’s battle with cancer is finally nearing its end. The chemo isn’t working this time and on Tuesday they stopped treatment.

Also this week, a tornado hit the edge of town where my mother-in-law lives. Everyone’s okay. There was some flood damage and some nervous horses, but only fences were harmed. Unfortunately, the two main exits into town and the center of all county commerce was hit hardest.

My wife and I are getting back home as soon as we can schedule it.

Complicating matters, I found out this week that my pressure still isn’t low enough and I’m scheduled for surgery number nine as soon as they can fit me in.

On the plus side, I guess I have blog fodder, if I can only find the time and the energy,

Oh, well. At least the week is over and the weekend is here. Besides, I can always imagine worse.

– Gerald

Neurosis: Damned If I Do, Damned If I Don’t

When I leave the house without my cane, I feel like a fraud. I feel like I’m pretending that I can see the ground in front of me and that crossing the street doesn’t terrify me.

When I leave the house with my cane, I feel like a fraud. I feel like I’m pretending that I can’t see shapes, colors, movement and (gasp!) print.

I’m neurotic about everything else, why should this be different?

What’s in a name?
I think I’m getting hung up on the label.

When darkness fell this summer (and I had no idea if my sight would return), I immediately thought of myself as blind and found the term “visually impaired” silly, overly-sensitive, and consisting of entirely too many syllables.

Now that I can read a book and (sort of) walk without a cane, it doesn’t seem so silly anymore.

This summer I was BLIND, but now I just have a big blind spot. Referring to myself as “blind” seems disingenuous. I think I’m more comfortable with calling myself “visually impaired” – but still get weirded out if someone else calls me that.

Why? Is my ego THAT fragile? Don’t answer that.

Dark Glasses: My New Love/Hate Relationship
I can see better at night with my dark glasses on. They aren’t tinted very dark, so they help reduce glare day and night. Unfortunately, I’m beginning to feel like a walking stereotype when I wear them at night… so I’ve been taking them off.

I’m willing to walk around with glare in my eyes and trip over every rise in the sidewalk just to prove how unblind I am to strangers who have no idea that I have a vision situation at all.

THAT’S healthy.

What is with the Ray Charles/Stevie Wonder head thing?
Ok, I’m doing it because my neck is sore and my eyes are tired – but if I catch myself I freeze and stand/sit up straight and tall. Then I scan the room to see if anyone saw me.

Why am I doing that? What is UP with that?

…and why don’t I feel stupid doing it without the dark glasses and white cane? It’s a pretty un-cool head gesture. Like Max Headroom or Wm. F. Buckley Jr. my head is just kinda bouncing around.

Infants have better neck control.

Sometimes I’ll wear my white iPhone headphones so people think I’m rockin’ out.

Yep. I’m foolin’ everyone. I’m so smart.

Thank You, Mr. Pryor
I had a chance to catch See No Evil Hear No Evil on YouTube the other day. It’s a silly/stupid comedy with a razor-thin plot but I love both Gene “Young Frankenstein” Wilder and Richard “Brewster’s Millions” Pryor* so it’s easy to forgive them.

The whole first ten minutes felt entirely too familiar. I am BOTH of these characters. Holy crap.

Luckily, it devolved into the over-the-top stereotyping and whacky totally-implausable situations I was hoping for. Then, halfway through the movie, I identified waaay too much with this scene:

When slapstick comedies are imitating life, you’re acting like a stooge.

* (OK, Blazing Saddles and Here and Now were funnier, but I was going PG rated)

Last night, my wife overheard people talking about me.

I still get nervous in crowded or unfamiliar places. Things are happening very fast and everyone is in their own little world – so I’m very aware that I can’t see the ground in front of me. Why am I more nervous now that I have half my vision back than when I had none? Because I can see people staring. I see them staring and I don’t know how to behave.

When I’m not carrying the cane, I do everything in my power to keep from looking like I can’t see. (I know, I know! I’m vain. I’m stupid. That’s a discussion for another day.) But when I DO carry the cane, I feel like I should act like how society tells me blind people act. I feel like I should ignore the vision I have left and just feel around and wait for people to read things to me because if they see me using my eyes at all then they’ll judge me and declare me a faker.

Then I get angry that I feel that way and defiantly try to use my eyes in as dramatic a fashion as possible. If they’re going to stare, let’s give them something to stare at. I’ll pick up a bag of chips and start reading the label. I’ll peruse the magazine aisle. I’ll stare at signs.

I’m an ass. It’s my coping mechanism.

This isn’t happening to just me.
Last night my wife and I went to pick up a few groceries. This was our first trip to the large Fred Meyer in Fremont since I re-discovered my ear. Out of habit, she grabbed my hand and put it on her elbow as we walked into the store. I tagged along for a while, but then we came to a crowded aisle.

I didn’t want to navigate it, so I told her I’d meet her one aisle over. She said “two aisles”. OK, two aisles over.

I looked at the ground – but then stopped.

I told myself Trust the tip, and looked straight forward.

It was like I was swimming. The whole world existed from my nose up, and my body is merely floating beneath it. I wanted to paddle my hands and drift toward my destination but instead just walked normally, feeling with my cane.

Two aisles over, I killed a minute looking at labels and then my wife was there. We did this twice more but by the time we were halfway finished shopping the place was less crowded and I wasn’t nervous anymore. I started looking around at stuff and wandering off alone. That’s when I started drawing attention to myself.

I passed my wife in the drink aisle, we exchanged hellos and I continued on. That’s when she heard it.

“Do you think that guy is really blind?”

“I don’t know, he looked like he was looking at stuff to me.”

My wife interjected. “That’s my husband. And, yes, he’s blind. He can’t see anything from his nose down,” and gave the busybodies a go to hell stare.

Shoulder Chips
I hate that she had to hear people talking about me. That bothers me ten times as much as the stares and whispers I hear. It takes me back to when we were dating and were spit on at the mall.

I think that’s why I’m so afraid to be viewed as different. In my experience different equals bad – and when I’m labeled bad, she catches shit too.

I know insensitive ignorance isn’t the same thing as bigoted hatred, but in the heat of the moment it’s all too familiar of a feeling of being singled out and the attention is unwanted.

I want to hide in my shell
I’ve given a couple of radio interviews on my adventure this year and have been asked to give a print interview with VisionAware – but I don’t know if I can do it. VisionAware is for real blind people. I don’t know if I qualify anymore. I feel like a fraud. I feel like I’m too blind for normal people, but not blind enough to actually be considered blind by the blind community.

I feel like I’m letting my blind friends down by being able to see again. I feel like all the worrying and crying I did this summer was for nothing and I’m just a big baby.

I feel like I don’t belong in the club.

I feel trapped between worlds.

I don’t FEEL blind, why do I need this cane?

OK, I’m back to staring at my feet instead of using my cane. It’s the losing-vision equivalent of the combover.

My ever-changing vision seems to have settled down into a “blind from the nose down, 20/20 from the nose up” situation. OK, it’s not as wide as normal vision, but it’s much wider than it ever was 2009. That’s the good news. The bad news: It looks (from my point of view) like I’m carrying a large box everywhere I go.

You know how it is when your arms are full. You can see in front of you, you can sorta see left to right – but the cat better not get in your way or else it’s getting stepped on. That’s how I see (as of this week).

Of course, my arms aren’t REALLY full, so I can point my face down and see the floor. So I’ve been doing that a little.

“As long as I keep this hair on the side and comb it over, I’ll never be bald!”
Am I telling myself “If I can walk without the cane, I’m not really blind anymore” ? I really hope not. If I come away from this year without learning a thing or two, then I’m a moron.

So, how are those Braille classes going?

Uhh… I haven’t been back to the class since that one time.

What about your O&M Training?

My wha…?

Orientation and Mobility.

What’s that?

That’s how you learn to get around.

I’ve just been teaching myself. Feeling the edges of curbs, listening for the quiet of traffic lulls.

It’s a freaking miracle you didn’t get run over. Why haven’t you taken classes?

I dunno. I taught myself to read, to ride a bike, to drive a car, to drive a stick shift, to shave, to breathe fire, to edit film, to cook, to rebuild a VW, to re-wire a house, to build a PC, how to program in BASIC and HTML… and if I remember the stories of my childhood correctly… how to walk the first time.

The way my mother tells it: I didn’t crawl, or even stand. I just sat and sat, and then one day (at around nine months old), I got up, walked across the room, took back a toy stolen from me by a cousin, and walked back to where I was sitting.

Knowing myself, I’m sure I was practicing walking in the other room when/where I could do it without being watched. I hate when people see me learning how to do things.

You’re a moron.

I know.

This Red Gatorade is Fruit Punch.

I can tell this bottle of red Gatorade is Fruit Punch, even before I open it. Do you know how I know? I read the label.

Let me repeat that: I read the label.

I pointed my face and the bottle toward one another and the small white letters came into focus.

New Glasses, New Hobby
I have totally been reading all the small print in my house.

After my surgeries, I was in near-total-blackness – but every day the circle of light in front of me got a little bigger. Unfortunately, because of the bruising and swelling and scarring – my glasses were useless. I was “blurry blind” as well as “darkness blind” (I don’t know the real terms).

Thanksgiving came, and with it: Turkey. A lack of vision was not going to deprive me of Turkey Dinner, and turkey sandwiches, and turkey soup, and turkey pudding and turkey shakes, and turkey IVs and turkey subcutaneous implants, and turkey suppositories ( …and then there’s the gravy pipe!)

My wife (not a cook) had to read the recipe cards and pour measurements for me to cook. It was an experience, and the food turned out just fine, but I felt kinda helpless and I couldn’t shake the feeling that I wasn’t making dinner because I wasn’t doing everything all alone in the kitchen. (Control Freak Much?)

A week after TurkeyDay, I got my glasses. At first it was dizzying. I wasn’t sure i liked it. I felt very tall. Then I saw my wife.

It was the first time I saw her face clearly in months. It lasted ten seconds before I welled up and the tears made everything blurry again.

By the end of the day, the muscles on the sides of my eyes were sore. When I first left the eyeglass shop, it felt like I was stretching them because I was out of practice when it came to looking right and left (but I didn’t let that keep me from doing it).

I spent the day looking at the skyline, the passers-by, and my wife.

That night I grabbed a Gatorade, looked at the label, and instead of just seeing a splotch on the label – I saw the words “Lemon Lime”.

I froze.

I just kept reading it over and over. “Lemon Lime”.

Holy Shit! What’s that!??!
A week or so ago I was standing in front of the bathroom mirror and I made a discovery. Apparently, I have TWO ears.

Two of them.

My tunnel vision had been so severe that I had only been able to see my second ear at a distance. Getting closer to the mirror made my ear disappear past the edge of my vision. Yet, there it was, plain as day.

I swerved my head back and forth, counting my ears.

There it was, just sitting there, all earlike.

The Aforementioned Ear: Just sitting there, all ear-like.

One, two. Two ears. Two of them. Do you want me to count them again? Because I can. See? There they are. There’s one… and look! There’s the other one!!

I’ve been looking through a circle in a square so long, the increase in left/right vision feels like I traded my old beat-up peepers in for some snazzy Widescreen Eyeballs.

Actually, it feels like I’m holding my hands up in front of me, like a director “framing” the action.

It’s not the “return to normal” I was hoping for, but it’s better than anyone was willing to predict six months ago. Plus, it’s like a movie every time I leave the house.

White Cane + Non-Dark Glasses = Confusion
Last night, while doing some Christmas shopping, I wore my dark glasses. I still need to use the white cane when I’m out (I can’t see my feet or the ground in front of me), but when I’m wearing my regular glasses people don’t know how to react.

They stare at my face, then my cane, then my face. You can see how much trouble they’re having resolving what they are witnessing. I wonder if they think I’m only blind from the waist down (or something).

I put on the dark glasses to avoid the hassle, but couldn’t help feeing like a stereotype.

I also felt like I was both a “sore thumb” and invisible at the same time. Half the time I felt like everyone was watching me and judging me as “faking” being blind because I was “obviously looking around”. The other half of the time I was keenly aware that no one was talking to me.

OK, not “no one”, but there was a definite decrease in the amount of small-talk I usually engage in while I’m out and about and there was a lot of scurrying away from my immediate area by my fellow shoppers. In every store people were packed like sardines, except near me. It was like I had a force-field (or body odor).

I’m telling myself it was my imagination. It’s not like this summer in a Texas Wal-Mart. I didn’t hear anyone talking about me.

People were talking about you?
Yeah, a couple of Wal-Mart employees. I had just entered the soda aisle. First I heard the whisper, and then I heard the comment.

…which, by the way, made no sense.

Well, what he said made sense. It just didn’t make sense that he thought I couldn’t hear him. I was standing RIGHT THERE.

At least the first guy whispered. The second guy just started talking about me like he saw the white cane and dark glasses and then thought to himself: Deaf Guy!

Clue: If I’m close enough to hear your friend whispering about me, I’m close enough to hear you speak in a normal volume.

A filmmaker finds the frame (not me)

Maybe I should walk around like this all day.

Back to Last Night
By far the most stares I got last night was at Fry’s Electronics. First going up and down the Blu-Ray aisle, picking out movies, and then going to the Video Game section.

When I got there, I purposefully walked into my friend who was already there – repeatedly bumping into her while repeating “Oh, excuse me, pardon me, excuse me, oh I’m so sorry, oh my bad…”

There was a small giggle from the audience and then the show was over. The shoppers moved on.

After I stopped being neurotic about the lookie-loos (no longer caring when people were staring), my night improved. At dinner, when I poured water all over myself (because I didn’t see the waiter refill my glass), I was able to laugh without embarrassment and fully enjoy my friends laughing at/with me.

Boy, I’ve missed that sound.

One other thing
Why do people assume I lost IQ points with my vision? Is that a popular misconception about blind people or do I just look like a dimmer bulb than most?

I think I need to re-read that Blind Myth article again and/or start growing a thicker skin.

If one more person speaks to me in a sing-songy voice like I’m an infant or the victim of severe head trauma then I’m going to smack them with my cane. I’ll drool on myself and babble while I’m doing it. I don’t want to get arrested.

For what it’s worth: Blind people are not mentally deficient, uneducated or deaf. They can understand adult explanations at a normal volume.

(For more tips on dealing with blindies, read this article.)

Happy New Year
So that was the story of my 2009. I’m blinder than I was originally expecting, but not as blind as I almost could have been. How will 2010 be able to top it?