Archive for the ‘Blind Joy’ Category

How’s “Seeing Things” Treating You?

The following is an e-mail response I sent to a friend who asked:

hey how are you doing these days? how’s the ‘seeing things’ treating you?

I’m flying high – enjoying a condition that isn’t destined to last. After our last talk, my doctor told me that my pressure is still too high and I’m still killing my optic nerve. These last two surgeries bought me more time, but they weren’t quite enough. I’m scheduled for surgery number nine on the 24th. (28th? On these drugs I’m terrible with numbers.)

Of course, you know me. I’m not going to just sit on the sofa and rot. I’ve been given a temporary gift and I’m enjoying it to the fullest. I’m going to movies and reading – but I’m also doing silly things like coloring with crayons and putting decals on my walls. Oh, and I’ve decided to drive one last time while I have the chance.

Don’t worry, the sidewalks of Seattle are safe. C has taken three weeks off work and we’re taking one last road trip. We drove along the PCH (63 miles of the most beautiful coastline you will ever see) and toured Hearst Castle. On the tour, they pulled me aside and told me of a secret policy for blind visitors. I was allowed beyond the velvet ropes and plastic pathways. I stood mere inches from the most breathtaking art collection ever assembled – and was permitted to touch whatever I wanted. My hands fell upon first century Greek sculpture and seven century old tapestries. In the billiard room was an arch carved by the man who hired Michelangelo to paint the Sistine Chapel and a wall hanging whose replica is hanging in the Louvre – and I got to touch the original. It’s a memory I will cherish forever.

I’m currently on a small horse ranch in Texas – playing with 1300 pound beasts and trying to get a cell phone signal.

I’ve put over 1000 miles with me at the wheel so far – and my wife trusted me enough to crawl in the back and go to sleep while I drove. TBTL has been the soundtrack of my last drive, and is permanently etched in my mind as part of the experience. My return trip begins in nine days and I will drive as much of it as I can. As soon as I get home I go under the knife and will be stuck on the sofa for a month an a half – but I will have the memories of a wonderful trip to keep me from growing restless.

Thanks for checking on me. Oh, and check me out in the New York Times : http://www.nytimes.com/2010/03/11/garden/11tv.html

– Gerald

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?

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?

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?

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

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?

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….