Archive for the ‘Blind Neurosis’ Category

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.

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

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

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

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

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

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

So, how are those Braille classes going?

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

What about your O&M Training?

My wha…?

Orientation and Mobility.

What’s that?

That’s how you learn to get around.

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

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

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

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

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

You’re a moron.

I know.

This Red Gatorade is Fruit Punch.

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

Let me repeat that: I read the label.

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

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

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

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

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

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

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

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

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

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

I froze.

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

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

Two of them.

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

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

There it was, just sitting there, all earlike.

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

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

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

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

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

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

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

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

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

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

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

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

…which, by the way, made no sense.

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

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

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

A filmmaker finds the frame (not me)

Maybe I should walk around like this all day.

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

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

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

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

Boy, I’ve missed that sound.

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

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

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

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

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

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

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.

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.

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

TBTL Skate Party PhotoHear 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.

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.