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?

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.

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.

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

I think that blind guy is staring at me.

I notice that I feel self conscience when I pass people on the sidewalk.

It takes me a little longer (than it used to) to see people, estimate the amount of space they take up, and navigate accordingly. In the process, I’m looking at each individual person, and looking longer than I used to. Now I feel like I’m staring at strangers.

No, scratch that. I feel like people think I’m staring at them… or their children.

Instantly Creepy
Image that you’ve just parked your car. You’re getting out and you see a guy walking up the sidewalk. You see his head turned toward your car. You step out of your car. The guy is moving slow. You walk around the car. He’s looking at you again. You begin walking up the sidewalk in his direction.

As you begin to pass, he looks at your shoes and hat.

What is running through your head at that moment?

My Own Neurosis
I grew up a non-Caucasian in The South. Getting watched while I shop was so normal to me that when I moved to Seattle in 2004 it struck me weird that I wasn’t being constantly monitored.

In Texas, I had people clutch their bags as I pass their table in a restaurant and lock car doors as I pass their car in a parking lot. In 1989, my wife an I were spit on for holding hands at the wrong mall.

Getting stopped by security because my adopted kid sister has blonde hair and being asked “what I’m doing in this neighborhood” on my morning walk was just part of normal life. (Every time I got a new apartment, I got a new walking path… and the phone calls would start… and the patrol cars would come.)

I learned a long time ago that while passing strangers it’s best to smile, nod, and avoid eye contact. It always makes me feel like the butler or the gardener, subservient in some way, but it’s second nature. (I’m not called The Neurotic Nomad for nothing.)

Unfortunately it doesn’t work anymore. As I already mentioned, It takes me a little longer (than it used to) to see people, estimate the amount of space they take up, and navigate accordingly.

“Not Staring” doesn’t work.
The solution up to now was to “not stare” at people, especially women and children, and hope against a collision.

It makes me paranoid I’m going to step on a toddler, but it has really decreased the freaked-out looks on faces as they come into focus.

I smile at blurs, hoping I saw all of them, and look at my feet. I then do a final glance/smile as we pass and hope for a smiling blur in return.

Enter the White Cane
In an effort to alert the women/children of North Seattle that I’m blind, not creepy, I’ve ordered a white cane.

The idea is that if they see the cane, they’ll know I’m not really “staring” so much as “slowly verifying location”.

This will free up some time and allow me to feel neurotic about whether or not I’m wearing the right sunblock or whether or not I turned off the stove before I left the apartment instead of whether I’m going to offend a pair of jiggly boobs before I can even see them.

Political Correctness and Taking a Driving Test

Found @ Shock Is All In Your Head:

So my mom took me yesterday to get my permit, and that was fun, not really. There was a lot of waiting, and I am very impatient. So we finally get to the first both, and I have to take an eye test. I almost didn’t pass that one. That made me think of Jess and Steph making fun of me because I had my nose three inches away from the book trying to read. So after about 15-20 minutes trying to guess at a line of letters, I got them right and got to go take the real test, which was much easier. So I start and everything is going good and I get this question about how to distinguish blind people from other pedestrians. Now the two choices that seemed at all legitimate were “They are not distinguishable from any other pedestrians.” and “They carry a white cane or have a guide dog.”. So I thought a little and came to the conclusion that saying that all blind people had a white cane or a guide dog was stereotypical, and no one makes them use a white cane of a guide dog, there not like Jewish stars or anything, and I thought it was politically incorrect to say that about all blind people, so I chose that they are not distinguishable from any other pedestrian. I was wrong. Just trying to be polite. But I still passed and everything. I had to get my picture taken, though. I do not like having my picture taken. It’s very awkward. And it was another 2 hour wait to actually get the card. I like the holograms on it. They’re nice.

The moral behind all this is that all blind people have white canes or guide dogs, and if they don’t have them, they’re probably pretending so you’ll give them money.

Buying my first white cane

White canes serve two purposes. First, for the severely-visually-impaired it helps navigate tight spaces and uneven terrain. (You never realize how many tripping hazards there are in your average day until you can’t see them.) Second, it lets everyone know that you can’t see.

It’s a common misconception, even among those losing vision, that you have to be totally blind (aka “No Visible Light”) to carry a white cane. In some states you have to meet certain “legally blind” requirements (it varies from state to state); but in most places if you feel your eyesight slows your speed or reflexes, and you want to alert others, it’s a-ok to carry a white cane.

Of course, that doesn’t help the weird looks you’ll get holding a white cane and reading a newspaper at the bus stop.

I’ve never heard horror stories of people getting yelled at for not being blind enough, but my “crippled friend” (getting double-hip replacement surgery in two months @ age 33) gets plenty of dirty looks at the grocery store parking lot when she’s having a good day and can hold onto a shopping cart instead of a cane. In some people’s opinion, she’s not crippled enough to take that parking spot if she’s not in a wheelchair (and they will let her know it!)

I have no idea what I would say to someone confronting me about still having some vision while carrying a white cane. I wonder if I’ll find out.

Shopping Locally

I live a few blocks north of Greenlake in Seattle. I hit the Bartell’s in Wallingford and a few Walgreens’ around town. No white canes, no clue as to where to get one. I decide to save the gas and shop online.

Shopping Online

Googling around I found three things:
1) White cane makers make very few white “support” canes,
2) Support cane makers offer very few models in white, and
3) Most white support canes are ugh-lee.

There is a wider selection of CLEAR support canes than white.

Do the blind have no fashion sense, or – like the fat – are we deemed unworthy of style?

I finally hit upon a decent looking model from a company called Ambutech.

They aren’t exactly Cover of GQ, but they aren’t Middle-School Sports Injury, either.

I decided to go with the fixed-length model with the T-Handle, so I clicked the order page.

Measuring

Because this is a fixed length, you have to tell them how tall to make it. I have no idea.

This may be my first white cane, but it is far from my first cane. In many Seattle homes there is an umbrella stand near the door. In my home, there is a cane box.

In spite of my collections of canes (I have another collection of them in Texas), until the day before yesterday, I had no idea what size cane I used.

I’m a guy. I have to check my shoes to tell you my shoe size.

Like my shoes, I try canes on and get the ones that are comfortable. That doesn’t exactly work for online shopping. (The mystery of why I don’t buy shoes online is SOLVED!)

I measure from the bottom of the rubber tip to the highest part of the handle. It’s 36″ exactly.

Using the pull-down menu, I select 36″ and click the “Add to Cart” button. Clicking on this button takes me to my cart, which they say is empty.

I hit the back button and try again. Same result.

I close Safari and open up Camino. Click, click, click, add-to-cart… same result.

Frustrated, I closed Camino and decided that buying straight-from-the-manufacturer may not be the best way to go.

My wife attempts

When C got home from work, I asked her to pull up the web site on her account.

Click, click, click.

OK, now click “Add to cart”.

Click.

…and it added it to her cart.

Sonofabitch.

She smiled and asked, “Do you want me to buy my honey a cane?”

Well, if you’re offering.

Ambutech Calls

The next morning over breakfast, C’s iPhone begins ringing. It’s a strange number.

Hello?

It’s Ambutech. Apparently the web order says we didn’t choose a size.

C verified that I measured correctly and finalized the order. Now I’m just waiting for it to arrive in the mail. Let’s hope they’re better at making canes than websites.

Part II: My White Cane Arrives… and I avoid it for over a week.