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.

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.

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?

The Somewhat Unique Opportunity To Go Blind Twice

For those who haven’t been following along from the beginning:

In January, I was a normal guy who just happened to be winning a multi-decade battle with an incurable eye disorder. By March,I couldn’t drive. By April, my tunnel vision finally became an actual tunnel.

It turned out, in addition to glaucoma, I had cataracts. Unfortunately I didn’t have the money to have them removed right away, so I decided to look at my situation as a chance to practice for the inevitable. 2009 would be my Summer of Temporary Blindness.

Then in May, I found out that the glaucoma has been stealing vision, too, and I wouldn’t be “going back to normal” like I originally planned.

Then What Happened?
I had a surgery, an accident, and another surgery. During all that time, my eyeballs were swollen, bruised, and healing from incisions – all things I can’t see through. The circle I view the world through shrank to the size of a fist at arm’s length.

Then I began to heal. The circle grew a little every day, but was very blurry. I could only read the largest of text.

Last week, after four months of healing, I was able to get my new eyeglass prescription. It’s five times the strength of the pair on my face as I type this.

Where Do You Go From Here?
I pick up my new glasses this/next week.

The circle has widened enough to where I feel like a fraud (again) with the white cane… until I trip on the sidewalk or walk into coupon dispensers at the grocery store.

I still can’t see the ground in front of me, but I can see to the right and left far better than I have in months.

Warming up the car for my wife, I noticed that I could see the driver’s side mirror again. I wonder if I could drive. I wonder how many cars get driven through windows and walls by people having this same internal dialogue.

Does this mean you aren’t blind anymore?
I don’t know. Does it? I can’t drive, I can’t walk without staring at the ground or using a stick, and I still have that incurable eye disorder.

Going into this, I thought this was my chance to have some Blindness Practice before I go blind “for real”. When I learned it may not be temporary after all, my perspective changed.

For several months I didn’t know if any of my vision would return. The only thing certain was that large portions of it wouldn’t be. This changed me in ways I could never have predicted – even with fifteen years of preparation.

I thought it was going to be all about white canes and braille. The lessons I learned this summer go much deeper than that. I am different because of this experience.

So, are your eyes okay, now?
No. Even after the successful surgeries my pressure is too high. I’m just not going blind as fast as I was six months ago.

…and from the inside, it looks like it’s going to opposite direction. Even though I know I have less vision than a year ago, I can see better than I could two months ago so I FEEL like I’m less blind.

That’s my old friend Denial coming back for a visit.

What’s that Denial? You have my car keys? Where are you going?

More Drugs, Less Lucidity

For three months, my doctor has kept me on two of my prescriptions for “just a few more weeks”.

The longer I’m on these drugs, the weirder I am. My wife says I act like a PMSing woman. (Is that sympathy or judgement?)

Personally, I think I’m acting like a bratty child. Impatient, immature, unyeilding, judgmental… Your basic asshole.

Worst of all, I can’t write or talk on the phone when I want to. It’s like the words get stuck and I get overwhelmed.

I have no concept of time. (i never know if it’s morning or evening) I never know what day of the week it is.

I am agoraphobic and prone to paranoia and panic.

When will this end?

My eyelashes are out of control.

Have you seen this commercial?

First of all, to Brooke Shields:

B.

Honey.

It’s going to be okay.

You don’t need to take these kinds of gigs. I know money is tight right now and Suddenly Susan was a long time ago, but you know there are plenty of products out there who would LOVE to have you as their spoke-person. OK. Not Calvin Klein. I’m pretty sure Ralph Lauren is a no go. Ambercrombie and Fitch… American Apparel… Gap! OOH! Old Navy. Oh, wait. You did Old Navy. How about vitamins? Or Orange Juice! Anything but body-modification chemicals.

That wasn’t my point. My point was: Remember this commercial for later in the story.

Vanity, thy name is Lash.
When I was a teenager, a ton of bricks had to fall on me before I knew I was being flirted with. It’s actually pretty embarrassing.

“Hey, my parents are going to be out of town this weekend. I’m gonna be all alone.”

“Make sure you lock all the doors before dark.”

Facepalm.

Anyway. I could always tell when a girl liked me because she would comment on the color of my eyes, or the length of my eyelashes.

OK, I’m not so vain that I can’t see through a teenage excuse to get close to (and stare at) each other – but you get a ton of compliments on a single feature it begins to sink in a little.

Oh, your lashes. The color of them. The thickness. The length. The gentle upward curve.

(OK. Second ton of bricks, just arriving. Wow. 20 years late.)

The beauty of my lashes aside, they were long. Then in my twenties… I got glaucoma.

OK, Back to the commercial.
Like all commercials for Legal Drugs, it has a fast-talking-low-silky-voiced-disclaimer. In case you didn’t hear it, it said:

If you are using prescription products for lowering eye pressure or have a history of eye pressure problems, only use LATISSE® under close doctor supervision.

May cause eyelid skin darkening which may be reversible, and there is potential for increased brown iris pigmentation which is likely to be permanent. There is a potential for hair growth to occur in areas where LATISSE® solution comes in repeated contact with skin surfaces.

If you develop or experience any eye problems or have eye surgery, consult your doctor immediately about continued use of LATISSE®. The most common side effects after using LATISSE® solution are an itching sensation in the eyes and/or eye redness.

The active ingredient in LATISSE® (bimatoprost) was originally marketed as a glaucoma medication. Longer thicker eyelashes were the listed side effects. Now, they’re doing it the other way around.

Wait. What? How can they do that?

They’ve done it before. Propecia, the baldness drug, was once called Finasteride and sold as a treatment for prostate cancer. Then someone decided to market the side effect.

Why do you think the pharmaceutical companies lobbied to outlaw doctors prescribing “off-label” uses? Because the markup is CRAZY. Generic Bimatoprost is 1/10th the cost of LATISSE®.

Is that what you’re taking?

No. I’m on one very similar called Travoprost (and also Dorzolamide… and Timolol… and… Prednisone… and…). Travoprost (brand name “Travatan®”) isn’t the only one that makes my lashes grow – but it’s the one that makes the biggest difference.

My dose is stronger than LATISSE® and I take it twice as often.

Wow. So how long have your lashes gotten?

I’m beginning to feel like a St. Bernard. Who knew eyelashes can get split ends? Is there a conditioner for that?

They smack my glasses and leave smudge marks. And because the drops pool in the corner of my eye, the eyelashes in the corners are nuts.

I’m two weeks into a six week recovery – so I get post-op eye boogers like crazy. Now they have an extra large extra tangled net to get caught in.

Is there such a thing as an eyelash barber? Is there an eyelash cutting tool I’m unaware of?

I have GOT to do something about this.

I Twittered My Surgery. I was awake anyway.

Long time no posts.

Since my last update I healed up pretty normally, then I went out and enjoyed the summer (before surgery number eight) instead of updating my blog. (Sorry about that; thanks for the e-mails.)

I did tweet my eighth eye surgery, however.

Twitter
Twitter, as I’m sure you’ve read, is the online thingee for losers and narcissists.

Hey, dude. Glass houses.

Oversharing to strangers is cheaper than therapy, so I thought I’d give it a shot.

My morning started in much the same way the morning of the last one did. The difference: This time, I brought my iPhone. (Thank GOD! This time the only magazine in the waiting room was the issue of Time with Sarah Palin on the cover.)

They told me to get there at 9:30am. Just like last time this was wildly optimistic. At 11:11, my wife couldn’t take it anymore and had to go ask. That was the subject of my first tweet:

OK. Bitching made me feel a little better, and no one here had to hear it.

11:16 AM: I could have slept until noon instead of being stuck in this waiting room! Grrr.

OK. Maybe this is cathartic.

11:37 AM: Im grumpy. Not eating for fourteen hours will do that to you. After surgery, I’m eating a whole cow.

OK. Maybe not.

The ninety minutes came and went, and still I sat. Finally around 1:45 I was taken to the back. I changed clothes and posted a TwitPic.

Five minutes later, I twittered that I finally got my I.V. and twitpicked a picture of it.

They swept me away, sliced open my eyeball, tinkered, put a foreign object in, stitched on some alien tissue, and sent me to recovery.

As soon as I got there, the first thing I did was tweet.

Hmmmmmm…..?
So, that was my experiment with Live Twittering. Kinda Meh. Maybe I’m doing it wrong.

Summary
Did this experiment make me feel more social? More connected? More 21st Century? Stupid?

Not really, no, yes, and a little.

Another day, another neurosis.

David Paterson is ILLITERATE??!?!?

Ok, I already poked the bear by mentioning Paterson before, but holy crap, I just found this out: David Paterson can’t read. At all. Not in print, not in Braille, not in morse code (OK, I don’t know for sure about that last one.)

WTF? Really. Really? WTF.

He is read to. Every day.

He spent 60 hours memorizing a speech, and still didn’t nail it.

He doesn’t know how to use ANY assistive tools.

WTF? Really. Really? WTF.

Wes Derby put it somewhat more eloquently:

I know someone will probably come along and say “Can’t you just be happy for the guy”? Sorry, but no. He’s managed to hoodwink the people of New York. He is, in my belief, a bad representation of the tblind community. I doo fear he will set us back in many ways. What’s going to happen if a ccompetent person, who just happens to be blind, decides to run for high office, such as governor, senator, and so on? Is he/she going to have a fair shot, or are people going to say “Remember what happened with that Paterson guy? He couldn’t even perform the basic functions of his job without help.”

Yeah. What he said.

David Paterson: Disgrace to the Blind Community

Happy White Cane Day! Who knew?

OK, I did. But I forgot until this morning at 10:22, just late enough to miss the second annual White Cane Safety Day hoo-hah here in Seattle.

Missing it last year is how I learned such a thing exists.

Source: seattlelighthouse.org

Apparently, every October 15th people at all points on the blindness spectrum (I just made that up, please Mr. Angry E-mail Writer I’m sorry if I used an Official Blind Term incorrectly. I’m still learning.) …

…where was I? Oh, yeah… People at all points on the blindness spectrum all get together, bust out their white canes, and take to the streets. It’s like a Improv Everywhere sketch, but with cripples.

This has been going on since 1964.

I’d never heard of it.

I never saw it reported on the news, I never read about it in the paper. I never traded stories at the water cooler or over a beer about suddenly seeing a ton of blind people.

I’ve been losing my vision for fifteen years. If you think ANY demographic would be aware of it – SURELY I would be in it!

Apparently not.

Have you ever witnessed this moving blind demonstration of independence? Moving demonstration of blind independence. Blind moving demonstration of moving blind independence. This moving blind moving demonstration of moving blind…

The Roving Blind Spot. Have you seen it? No? me neither.

Then again, the only time I’ve ever seen cluster of people with white canes I was visiting a strange city so I just assumed a blind school was nearby. Have I seen this “awareness” campaign before and come away unaware?

Do other people do that?

If I’m not already the Village Idiot, I think there should be some sort of vote.

Boy, was I cocky.

“I’ve done this six times already,” I kept saying to anyone who would listen. “This is all old hat to me.”

Actually, it turns out, I’ve done it seven times. Re-reading my medical records, I’m on number seven. The fact that someone sliced open my eyeball and stuck their hands in just slipped my mind should have been my first clue that I’m not as smart as I like to pretend to be.

The surgery itself went well and they sent me home with instructions I’d heard six seven times already: Don’t do anything strenuous. Don’t bend over. Don’t pick up anything more than 8 pounds. Drink lots of fluids. Don’t eat anything too salty or too spicy. Get lots of bed rest – especially over the first week.

Yeah. Yeah. Yeah.

I wasn’t listening. I took a Percocet. Straight from the hospital, I hit the grocery store.

In the store, things got a little… expanded.

Mmmmm. Chicken. Boy, this is a strong pill. Ooooh, soup!

Everything in the deli smelled amazing. It didn’t hurt that I hadn’t eaten in sixteen hours. I ate 24 ounces of soup and a fried chicken breast.

I forgot to drink anything.

The next day, my neck disappeared.

This is why I should hydrate
Here’s a picture of me on the 19th, and on the 20th.

I’m not the thinnest dude, but I could swear I had a neck yesterday. Puffiness and dehydration are opposites, aren’t they? Not on these drugs.

Drugs, Drugs, Drugs, Baked Beans, and Drugs

All of my clothes and jewelry got tighter overnight but I didn’t notice right away, because I was prescribed just under 48,000 different prescriptions. Some I take in one eye, some in both. Some 4 times a day, some three, some twice, and some once.

No drug can be taken within 10-15 minutes of any other drug. (They’re topical, so they have to “soak in” before another med can be taken.)

I have 14 alarms set to remind me of what drug I’m supposed to take when and in what eye.

You’d think with all the alarms I wouldn’t have the opportunity to get bored, but I did. I did anything and everything I could think of that required no physical exertion. I took photos from the sofa. I watched dust piling up on the electronics. I posted 800 tweets. I watched the bathroom get dirtier.

Boredom makes me stress over bills and my lack of employability. Inactivity makes me notice unclean areas visible from my vantage point. Usually I say Another day, another neurosis, but two at once?

Then for no reason whatsoever, I got The Toast Song stuck in my head.

To distract myself, I decided to clean house.

Cleaning house requires a little bending. Bending is a no-no, so I just cleaned what I could reach by standing, sitting, or squatting. It was half-assed, but I felt better.

Unfortunately, I was still bored. And stressed.

My wife was helping a friend move and I couldn’t be trusted around heavy boxes, so I was at home alone. Bored. Sitting on the sofa drinking Gatorade. That’s when i had the massive pressure spike in my right eye.

From inside it looked like an occular migrane. Colorful dots exploded all over the edges of my vision, but it didn’t hurt. What was happening was my eye pulling an Incredible Hulk move and was ripping open.

[Not Safe For Lunch Photos here, here, and here. ]

So I waited several hours before going to the hospital.

I wasn’t sure at first what had happened. Drugs are bad m’kay? I waited until my wife got home to ask her opinion. By then it was getting close to time for my next alarm and I was becoming aware of the the pain, and the scratching on the inside of my eyelid.

The pressure in my eye got so high that I popped two stitches.

Get bed-rest, and I MEAN IT this time!!!
If the pressure spike had come a day earlier, I may not have been healed enough to handle it. (Yay, steroids!) As it was, It was just a minor flesh wound.

I was told to go home and stay on the sofa. That was when Seattle had it’s hottest week in recorded history.

Nice paper-cut you gave me! Why don’t you just pour some nice lemon juice into it?

Holy crap it’s hot. It’s like Africa Hot. Tarzan couldn’t take this kinda hot. And there I am, stuck on a sofa.

As the temperature climbed, I was faced with a brand new dilemma.

All of my medications need to stay between 60F and 80F to be effective. The refrigerator is too cold and my apartment is too hot, so my wife sacrificed her cooler. She gave up cool water on the hottest day ever just for me.

Not to look a gift horse in the mouth, but the ice packs she normally uses made the cooler a little too cold. It’s too warm to use nothing, and the icepacks are overkill. So I improvised.

Trader Joe’s to the rescue, again.

I found other uses for the ice packs. Don’t judge me.

Bloated, Dizzy, Forgetful, and Wandering The Streets Alone

It finally cooled down yesterday, so I decided to take a walk.

It’s been two weeks since the surgery. (Four more weeks until the implant expands and “goes active” and I find out if it’s going to slow the progress of my blindness… or cause a problem of it’s own.) I’m healed enough to start doing “medium level” stuff, so I went to a movie on Saturday and had some friends over for grilled meat and steamed corn on Sunday… then rode to Tacoma to deliver a futon after. I told you I was bored.

Until yesterday, I’ve not been alone outside of my home in two weeks.

The surgery has rendered my glasses useless, so I popped in the contact lens in what used to be my bad eye, donned my black glasses, and grabbed my long cane.

The Long Cane: The Official Cane of Blind People(TM)

It’s a “tappy” style, collapsable cane. It’s the cane you think of when you think of blind people.

I replaced the tappy tip with a “roller” tip. This keeps the tip from getting stuck in every crack in the sidewalk.

The end of the handle has a strap that doubles as the cane wrangler. Nifty.

I took off around noon and got home around three. My right hand felt like I was jackhammering all day. I could swear it was still vibrating for at least ten minutes after I got home.

On the plus side: my neck, shoulders, back, and head hurt much less because I wasn’t staring at my feet the whole time. I’m not going to be able to see forever and I don’t want to waste it staring at the sidewalk, looking for tripping hazards.

I saw so much yesterday that I plan on doing it again tomorrow.

Oh, yeah, …and I’ve been eating spicy food like crazy.

The Celebrity Name Hot Potato Game @ NeuroticNomad.com

Ten years of playing this at parties, I never wrote down the rules… until now!

Check them out over @ http://NeuroticNomad.com

Since My Last Update, We’ve Had Great Weather – Then someone sliced open my eyeball.

OK, since my last update a few weeks have passed. It’s time for the first of my two scheduled glaucoma surgeries. (I’ll be getting the second as soon as they feel the first is stable.) They’re doing my “good” eye first because time is of the essence. My pressure must come down or I will be in total blackness by Christmas. There is no guarantee this will be effective, and there is a small chance my eye will not survive this sixth surgical procedure.

Nothing will restore my already-lost vision, and nothing will keep me from going blind – but this may slow down the inevitable by a few years.

On Monday July 20, I woke up at 6am. I was told to be there exactly at 7.

“Don’t be late but don’t come early, either.” I was told.

What a tight ship they run! I thought to myself.

When 9:30 rolled around, I was still in the waiting room – endlessly flipping through the sole copy of The New Yorker they had. When the nurse came and got me, C was sleeping on my shoulder and I hated to wake her.

In the back, I had a choice of two sizes of hospital gowns. One that would leave my butt hanging out, and one that was just slightly larger than a circus tent. I took two tents. (It’s policy that you wear two.) In the changing room, I stripped completely down (why do I have to take off my underwear for EYE surgery?) and swaddled myself in the acres of gown.

Then I sat around for another two hours “going commando” waiting for my turn under the big lights. I didn’t have my iPhone with me because they told me to bring ONLY my ID (and the clothes on my back)… and now I don’t even have The New Yorker.

By the time they came to get me, I was falling asleep. You can’t sleep during eye surgery.

The procedure itself took just under 90 minutes and was done to the soothing sounds of The White Stripes, Modest Mouse, Franz Ferdinand, Oasis, and The Raconteurs.

It was mildly disturbing having to listen to my doctor give instructions while the resident did some of the work… especially when he said “nononono! over… y… more… there.”

I hated to interrupt them, but the local anesthetic started wearing off and I could totally feel them stitching. (EEeeeewwwwwww!)

Then I saw a flash of light… through the eyeball they were stitching up!

I just had to say something.

Talking at this point was a bad idea (because then they wanted to chit-chat with me during the whole rest of the procedure! I usually don’t like small talk anyway, but when I’m watching a 3-D horror film I’m a bit distracted) but I had to get another shot of pain killer.

Are you familiar with the phrase: Cross my heart, hope to die, stick a needle in my eye? That’s a 3-D experience that never gets old. Six surgeries in, it still makes me grin and say “Cool”.

They squirted some gel over the eye, patched it up, and sent me home. They told me to get bed rest. I went to the grocery store instead. I was on Percocet. I was feelin’ fine.

The next day the bandages came off. I didn’t mind because my eyepatch wasn’t in the least bit piratey. I looked (at best) sorta like The Mummy (from certain angles) or (at worst) like Keyser Soze’s only surviving victim.

Sarah (of the BosTens) said that I’m about two bandages away from Phantom of the Opera.

The implant is set, and I’m not rejecting the donor tissue*. I’m on a pile of medications and have alarms set for 14(!) times through out the day. In between meds, I wander around downtown Ballard with my long white cane. (I finally got one of the “tappy” kinds, I’ll write about it soon.)

I go back on Tuesday to see if I’m still doing well.

My vision through the eye is blurry, but hopefully it will return to pre-surgery level.
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*There aren’t words big enough to express the gratitude to the donor and his/her family for the gift of eyesight. Thanks so much to everyone who is a registered organ donor. Without this tissue, I would not have been able to have this procedure.

Apparently, I’m not the only blind guy lusting after an iPhone 3GS [Updated]

Tim O’Brien writes:

Apparently, Apple has been listening. I have blogged much over the past six months on the iPhone’s missing accessibility features; more zoom, more color contrast and more voice. Today, Apply announced the next iteration of the iPhone, the 3G S, and it has taken a giant step in the right direction.

Tim is a blind photographer. Like me, he is thrilled with the accessibility features in the newly announced iPhone 3GS including Voice Over, Voice Control, and more.

Just as importantly for me are two of the other new features. The new iPhone offers a more extensive zoom feature. “Zoom on iPhone lets you magnify the entire screen of any application. Zoom up to 5 times normal size and move left, right, up, and down to view any portion of the screen close up. Zoom works everywhere, including the Home, Unlock, and Spotlight screens, and with every application.”

For high contrast needs, there is a new black-on-white display option. “If you need or prefer higher contrast, iPhone 3G S lets you change the display to white on black. Use the White on Black feature in any application, as well as the Home, Unlock, and Spotlight screens, and with Zoom and VoiceOver.” It looks nicely implemented…

New iPhone 3G S, More Accessibility @ Tim O’Brien’s Photos

UPDATE: And a Blind Gal, too. She has a link to Tim’s blog and three others! Is the iPhone the device for the unseeing masses?

Stem Cell Contact Lenses Cure Some Types Of Blindness.

In a world-first breakthrough, University of New South Wales (UNSW) medical researchers have used stem cells cultured on a simple contact lens to restore sight to sufferers of blinding corneal disease.

Sight was significantly improved within weeks of the procedure, which is simple, inexpensive and requires a minimal hospital stay.

[...]

The researchers are hopeful the technique can be adapted for use in other parts of the eye, such as the retina, and even in other organs. “If we can do this procedure in the eye, I don’t see why it wouldn’t work in other major organs such as the skin, which behaves in a very similar way to the cornea,” Dr Di Girolamo said.

[UNSW via Gizmodo]

Blind People are so meta.

Today @ 1:40pm I am a Time Bandit No More!

I finally have caught up to “live” episodes of Too Beautiful To Live, and plan on tuning in tonight. Apparently, I’m caught up just in time for Luke to go on vacation.

I almost tuned in last night (I realized the time @ 7:04) but decided not to skip my last time-bandited show. Not only did I miss “TBTL is Call Takers”, but I was on!

Freaky… no, wait… meta.

Speaking of TBTL; a tenacious 10 from the U District sent a perfectly timed e-mail, checking up on me again, and she made me realize that I’ve procrastinated long enough. I’ve made a June 15 appointment for 5 Element Acupuncture. I am now entering my Andy Kaufman Phase.

…and with the humidity, my Roseanne Roseannadanna Phase. (Get used to it, Kate Blanchett!)

…and no, I still haven’t met Karen the Cane Lady, yet. I’m waiting for a ton of bricks to arrive first. Damn, I’m stubborn.

I guess my Mr. Magoo Phase is coming concurrently.

[Insert photo of "Andy RosannaMagoo" here].

I’ve looked worse.

“If we don’t get it under control, we’re talking months…”

OK, so the story ended abruptly.

I was going to tell you about the friendly doctors and the boring tests; how familiar it felt over the course of a day as they went from treating me like a hypochondriac that’s over reacting, to taking me seriously, to treating me as if I don’t understand the severity of my situation. I was going to tell you how my poor wife didn’t get anything to eat until 7:00pm and how I sat around for an hour to pay $60 on 2.5mL (that’s a half of a teaspoon) of Travatan and 5 mL (a teaspoon) of Timolol Maleate.

Instead, I’m going to tell you the short version and then go into the yard and garden. It’s a beautiful summer day. Later, I’m going to grill some chicken.

The Short Version

My eye pressure is high. My implant is failing. There are no new drugs to try… but we have to try something. As my doctor put it: “If we don’t get it under control, we’re talking months, not years.” I’m going in in a few weeks to see if another surgery will buy me more time.

Oh, and I think someone was stuck in the elevator when we left.

I also learned how wrong I was about not being able to see in. Those Harborview people have all sorts of things to look around curves. (Yes, I know prisms aren’t new inventions. Shut up.)

Look at these two thumbnails:

Each one is a map of an eye. The dark spots are where I’ve lost vision. Even after the removal of the cataracts, that vision isn’t coming back.

Pity Party

To quote myself: Everyone’s invited to my Pity Party, but I’m going to sneak out and go to Golden Gardens to play on the beach. Feel free to pity without me.

A broken thought.

I started writing this on May 13.

When I got to the part in the story where I go to the back to see the doctor, I stopped writing.

Read into that what you will.

May 13th.

I woke up early this morning. I took a long hot shower and ate a good breakfast. My vision was good and I felt zero discomfort.

I was going to the eye doctor, so of course I was feeling great. Like the mysterious engine noise that disappears when it’s time to take it in to the mechanic, my eyes were determined to prove that they are doing just fine thank-you-very-much.

C woke up looking like hell and announced that 1) we’re not taking the bus today, 2) we’ll just pay the parking fees, and 3) she’s going back to bed for a half an hour.

The women in her family hit menopause relatively early and she’s currently “pre-menopausal”. Not fun for her. She’s really learning the true meaning of PMS and this month is a doozy.

When she can’t sleep any later she crawls out of bed, puts on her favorite sweats, ties her hair into pigtails, and walks out the front door. I grab my glasses, cane, and iPod and follow.

In the car, she asks if I want drive-thru and I say no.

With the headphones on, I snickered to Luke, Jen and Sean as they recount their exploits of Week 2 of Surviving Thunderdome on the April 1 episode of TBTL as we headed toward Harborview.

I’d only been there once before (three weeks ago when I felt like my head was going to split open), and I felt very lost on the way there, but C knew right where to go. We drove around the parking garage for what seemed like forever and ended up on the bottom level. The elevator doesn’t even go down that far. We climbed up to the fifth level and got on the elevator. It made a terrible noise and took entirely too long to reach ground level.

Our first stop was Financial Assistance. My emergency room visit was $4800 and my last paycheck was last year. We signed in and went to the waiting area.

As we sat, C turned first green, then white, then red, then white again. She looked more like she needed to be in a hospital than I did. Several people moved from our immediate area. After sitting for a spell, she turned human colored again and began to eat animal crackers and read things on her iPhone.

By the time we got called to the back, she looked almost normal TBTL was on April 2.

The nice man behind the counter asked only a few questions and then had me sign a stack of papers almost as tall as the one that I signed to buy my first house. Afterwards, he gave me the lowdown. Because my wife has income we don’t get immediate assistance. We get billed for everything. If I rack up enough bills they will pay them… if I get approved, which I won’t even find out until after I’ve racked up the bills.

If I do rack up a bunch of bills and don’t get approved because my wife makes too much (a whopping dollar over minimum wage to support two people), there is a secondary charity that I might qualify for.

…or I could just go home, go blind quietly, and save my wife tens of thousands of dollars. (OK, he didn’t say that last part – but I sure thought it.)

We thanked the nice man and went to the third floor. I checked in for my appointment 40 minutes early and still sat in the waiting room long enough to finish April 2.

[I went blog-silent, but vented a bit on Twitter.]

Living among boxes, tripping hazards everywhere.

I hate an incomplete move.

Being nomadic, I get a lot of practice packing and unpacking. Being neurotic, I fear losing and/or breaking things and want to minimize the chaos of messy areas. Therefore I have the act of moving down to a science. An in-town move was usually four to six days, then I’d begin re-arranging things until everything “works”.

That was when I could drive.

This go round, it took us six days just to get our stuff here and clean the old place. My poor wife pulled double shifts; working during the day, moving in the evenings (in the pouring rain), to keep my stress down and to keep me from trying to do too much on my own. (Did I mention my wife is a saint? She only killed three passers-by this week and that’s just normal PMS-level grumpiness.)

After the long, slow, wet move… we still aren’t finished.

Before signing the lease on the new place, my wife negotiated a whole new laundry room, a washer and dryer, and our own water heater for just $25 more a month. (Did I mention my wife is a shark in negotiations?) The drawback? I’m living in a construction zone.

Until the construction is finished, we’re in unpacking limbo. I have no rear speakers (therefore no surround sound), the living room furniture doesn’t quite line up, half of my wardrobe is dirty, and cooking is a juggling act. I “finished” unpacking the kitchen and C “finished” the bathroom but they’re still buried in as many boxes as the living room and bedroom.

A misunderstanding on the start date caused the snafu, and our slow move didn’t help, but in the end it’s to our benefit.

It’s the mean time that sucks.

C isn’t used to an unpacked home, and is getting antsy. Unfortunately, when she gets antsy about storage, she buys furniture. I try to explain that we only have so many square inches of floor space to dedicate to new furniture – so we have to maximize what each new piece can hold – but she just looks at me like a kid being told that they can’t go to Disney World next week because it’s their grandmother’s birthday and we have to go to the Cabbage Festival.

My white cane hasn’t been touched in a week. It’s hard to carry a cane and a moving box at the same time and I haven’t ventured out of the house. Getting used to my new indoor environment is taking all my spare time, but I’m getting the itch to wander – if anything just to get away from the boxes.

They say that everything will be finished by next week. I hope I can keep my wife from buying a new bed or bringing home a Craigslist sofa until then.

Suddenly, Tens of people are reading my blog and writing to me.

I’m a big “adventure” guy. When I was 17, I lived in Central Park for a summer. I’ve driven cross-country on 45 minutes notice – twice. I burned all my ties, quit the cubicle farm and became a filmmaker; then when my wife quit Corporate Life we moved from Texas to the West coast without a plan, a clue, or any money. In 2007, we moved 3000 miles to live with newfound birthparents-in-law for a year. I find uncertainty more fun if you actually find out “what if…”.

Losing my vision is my biggest adventure, second only to my marriage. Unfortunately, I don’t really have friends who understand it in those terms. All my current friends either feel sorry for me or worried about me. Telling them about weird optical illusions created by the cataracts or visual hallucinations inherent to losing sight never causes any of them to crack a smile. I excitedly tell them how I walked to the park by myself, and I can see tears in their eyes. I feel like I’m bumming everyone out!

Being able to talk about going blind in a non-bummery fashion on this blog for the last two months has been very cathartic. I just wish I had someone to laugh at me when I bump into crap. Maybe I’ll go roller-skating in a clown wig. I have GOT to get my giggle fix.

The outpouring of kindness I’ve felt in the last two weeks, first from my white cane adventure then from my broadcast, has really reaffirmed my faith in humanity.

Now, I just have to work on humanity’s sense of humor.

Thanks to Kirstin for the pointer for 5-Element Acupuncture, to Paul for letting me know about the Washington State Department of Services for the Blind and Seattle Lighthouse for the Blind, to Anne for letting me know about Deep Baseball, to Jan, a Seattle woman who lost her vision at age 2 to cancer, for her offer of general advice, and to everyone who wrote in to give me words of encouragement.

And like I said to Kate in the comments: If you see me walking around town, don’t be shy. I’m trying not to be.

My wife and I signed a lease on a new apartment today. I’m about to conduct my first move since giving up driving and am changing my surroundings for the first time since going blind enough to need the white cane.

The adventure continues….

I am not a Spambot, even if I fail your Captcha.

Some Captcha are better than others. You know what I’m talking about: Those annoying security codes that guard against spam. Some of them I can still read, but others are like a cruel joke.

Dark Angel weighs in:

The thing that really annoys me is that there are far more accessible alternatives out there which work just as well. And I’m not talking about audio captchas. Obviously I’m pleased when webmasters think to provide an audio alternative; however, they are as difficult to understand as the visual captchas are to read. This leaves those of us with both visual and hearing impairments still unable to access them.

The Dreaded Captcha

Me… in stereo.

I gave my first live radio interview this evening. It’s very different on this side of the microphone.

Now I’m paranoid that I misspoke. Did I say 50% when I meant 40%? Did I say year when I meant four months?

I know I didn’t finish the story about my medications, and how I’ve quit them all.

And then there’s the subject of my vision field.

“I can’t see your eyes and your chin at the same time.”

The circle I view the world through isn’t a constant size. I have good days and bad. When I get tired, the circle is smaller. When my head is pounding, things are less than 20/20.

In studio, I was a bit nervous, which shrank the circle a bit.

Unfortunately, I think I gave the impression that it’s always that small. In truth, on good days I can see an entire face at five feet, and the entire TV at ten feet.

But I still can’t see my left ear.

The Silent Killer?

Did I say that glaucoma was known as the silent killer?

Bwahahahahah!

What I meant was: Glaucoma is known as the Silent Thief of Sight.

Wow. What a way to sign off. Oh, well. That’s life without a net.

Listen for yourself

Hear me in all my imperfect, neurotic glory on 97.3 KIRO-FM’s Too Beautiful To Live.

Grab it for your iPod or iPhone in iTunes or listen on the web.

It’s the 4-21-2009 episode. My interview is the 8:00pm – 9:00pm segment.

Thanks to Luke & Jen. You were wonderfully gracious hosts and really know how to make a guest feel comfortable and welcome.

I hope you meant it when you told me not to be a stranger. When I hear this episode in a month and a half, I’ll e-mail you to let you know what I thought.

In A Mirror, Darkly

In 1 Corinthians 13:12, when Paul tries to express the imperfection of mortal understanding, he compares our earthly vision to the dim and wavery view reflected by a typical Roman-era polished bronze mirror.

When people ask me how much vision I’ve lost, I find it’s easier to explain what I can see rather than what I can’t.

A person with normal healthy vision sees a wide vista, a field wider than it is tall. (Go ahead, test it out. Stare forward and try to find the four edges of your vision with your hands.)

You see a wide rectangle, I see a circle in a square.

Glaucoma has taken all of my left peripheral vision and most of my right; cataracts are blocking my view of the ground in front of me and the sky above. The edges of the remaining square are blurred, half obscured by cataracts or their shadows – leaving me a tiny circle of (contact-lens-corrected) 20/20 vision.

If I am looking right at you, I can probably see you better than you see me. Take one step to the right or left, and you disappear!

Staring through this hole has allowed me the pretend I was “normal” and ignore the facts that glaucoma has no cure and I ran out of medications that work to maintain it long ago.

I can procrastinate no more. I have to start learning how to get along without my vision while I still have the ability to peek.

My White Cane Arrives – and I avoid it for over a week.

My bravery comes in waves.

Ordering the white cane was one thing, but when I got the shipping notice it became real. That’s when denial kicked in. I suddenly felt like a fraud. I’m not blind. I’m blind-ing. I’m blind-ish. I have blind-like tendencies.

So what did I do? I didn’t go check the mail for two weeks.

I started walking around my neighborhood, using one of my support canes as a guide cane. I acted as if I could see better than I really can (something I’ve gotten quite good at), and roamed Greenwood, Phinney, and even the edge of Ballard.

The first pole I walked into was very painful. I clipped it with my left shoulder. The bus stop sign blended into the colors of the background and disappeared. Hoping that no one saw me, I kept walking.

The honking car scared the crap out of me. Still upset from walking into the pole, I wasn’t paying attention and stepped off a curb right in front of a very-easy-to-see (even for me) SUV.

At that moment I was suddenly aware of how far away from my sofa I was and that I was very much alone.

I felt sorry for myself for the next few blocks, then I started feeling stupid.

Two Competing Afflictions

I am slowly losing my vision to glaucoma, and quickly losing vision to cataracts.

What is Glaucoma?

Neil T. Choplin writes:

It is becoming clear to us that glaucoma is a spectrum of clinical entities that encompass many ocular and systemic conditions.

[...]

To try to describe multiple disease, conditions, and scenarios in a widely disparate group of patients with a single term ‘glaucoma’ is subject to frustration.

Because of this, I’ve been weary of discussing my condition with people. “Glaucoma” is the leading cause of blindness, so invariably the person I’m talking to has heard of it and may know a little bit about “what it’s like” and I have to spend the next half-hour explaining that my condition is not like their grandmother’s or friend’s neighbor’s uncle’s condition, picking off an emotional scab as I recall being the youngest person in my doctor’s waiting room by about four decades.

I’ve put up a good fight for fifteen years and the glaucoma has progressed much more slowly than anyone could have predicted. This allowed me to slip into denial and pretend that it wasn’t happening anymore. The reality is, that there is no cure for my condition and the best I can hope for is to keep the progression slow.

Unfortunately, I’m also getting cataracts.

Can’t you have cataracts removed? Shouldn’t you?

Yes, and yes. Unfortunately, I can’t afford the surgery.

The growth has taken an additional 40% of my vision field in my left eye in the last four months. (My right eye is getting worse, but it was treated as an afterthought so bad was my left eye.)

The good news is that this is not (yet) the type of cataract that will tear my eyeball in half. As my doctor put it, it just keeps me from seeing out, and him from seeing in. (Which means that the state of my glaucoma is anyone’s guess until I have them removed. I’m trying not to get hung up on the idea that underneath this blob in my eye I can still see as well as I could before it arrived.)

So, while I save up my pennies, I’m going to treat this like “practice”. Everything is a learning experience the first time, and I have the somewhat unique opportunity to go blind twice.

Accepting That Which I Cannot Change

My wife drove me to the mailbox and I waited in the car while she went in to get my package.

A few minutes later she came out with a long thin cardboard box, opened the passenger door, and placed my destiny in my lap.

The next day I went on another walk around the neighborhood and I could feel an immediate difference.

People weren’t crowding me on the sidewalk, and traffic stopped any time I faced a curb. I felt myself walking with my head held high and a spring in my step. I think I strutted a little in the park.

Me.

Strutting.

In Public.

In the grocery store, I no longer had a death-grip on the shopping cart or my wife’s belt loop. I wandered off by myself and felt no shame whatsoever as I bent waaaay over to read labels on lower shelves. I haven’t felt this independent since Christmas.

Last weekend I wandered around Art Walk alone and talked to some wonderful musicians. They were the first new people I’ve talked to in over a year. It felt nice to not have to explain that I can’t see.

Yesterday when walking to my wife’s work to say hello I walked into a bush… and laughed and laughed.

Amazon Caves on Kindle 2, Blind Protest

The National Federation of the Blind took to the streets of New York to protest Amazon’s weak spine regarding The Author’s Guild’s stance on the twenty-year-old Text-to-Speech technology that was bundles into the Kindle 2.

To quote John Mahoney:

Basically the story is this: the Author’s Guild raised issue with the Kindle 2’s new robotic text-to-speech feature, which can read any Kindle book aloud in a synthesized voice—naturally, a feature that would be an absolute delight for the vision impaired. The Author’s Guild, however, saw things differently, stating that eBooks are not sold with “performance” rights and that the Kindle’s read-aloud feature would cut into the sales of audio books.

More photos from the protest can be seen over at Gizmodo.

Implantable Miniature Telescope for Macular Degeneration

John Mahoney writes:
For people suffering from advanced macular degeneration, this lens implant magnifies light at 2.2x to 3x and projects it onto the healthy part of the retina, avoiding the damaged blind spot.

Visioncare (via Gizmodo)

Google: Helping The Blind Use Touchscreens

MIGUEL HELFT writes:

The featureless glassy screens of touch-screen phones may seem like a forbidding barrier for blind users, who often rely on tactile clues to feel their way around. But a pair of engineers at Google, T.V. Raman, who is blind, and Charles Chen, who is sighted, have developed software that makes the touch-screen T-Mobile G1, which uses Google’s Android software, more accessible to blind users. They hope the technology will also be useful to anyone who needs to operate a phone without looking at the screen, like drivers.

Google’s Phone Apps for the Blind, and Everyone Else @ The New York Times

Fitting In… a Two-Way Thing.

Like I said the other day. It depends on how you define “normal”.

Dark Angel writes:

But going out with shades and a white cane makes me feel like a complete stereotype blind person. And I just don’t feel happy with that.

My father told me it is because he wants me to fit in. He meant this positively; he doesn’t want me to get left out because people are too scared by my appearance to approach me.

But part of me wonders why it should be me making the effort to fit other people’s image of ‘normal’. If people were more accepting of, for want of a better word, disfigurements like funny eyes or asymmetric limbs then people with these issues wouldn’t feel obliged or be told by others to cover up these aspects of their appearance.

Fitting In… a Two-Way Thing @ The Twilight Garden

Braille Money Finally A Reality.

The U.S. Mint will begin accepting orders Thursday for the first coin to feature readable Braille. The 2009 Louis Braille Bicentennial Silver Dollar commemorates the 200th birthday of Louis Braille, inventor of the Braille system of reading and writing used by the blind.

The National Federation of the Blind can receive surcharges from sales of the coins to further its programs to promote Braille literacy, the U.S. Mint said in a news release. Mintage of the coin, which is 90 percent silver, will be limited to 400,000.

New Braille Silver Dollar @ FryLife