Posts Tagged ‘losing vision’

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

Advertisements

It wasn’t supposed to be this long.

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

All I know is the finish line keeps moving.

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

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

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

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

I’ve been absent for almost a year.

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

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

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

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

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

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

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

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

Life is for living, you know?

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?

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?

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.

Me 7/19/09Me 7/20/09

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 DrugsIMG_0248

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.

EEk!

[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.

Delicate DropsAs 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. Cool DropsThe 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.

Long Cane, CollapsedLong Cane, Extended

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

The end of the handle has a strap that doubles as the cane wrangler. Nifty.
Strap, untiedStrap, tied

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.

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.

vision_field

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.