Archive for the ‘Blind Emotion’ Category

A Quick Thank You.

Sorry for the lack of posts. As many of you know, I lost my mother this summer.

A relatively young woman of 64, her illness and passing came quite suddenly. I was fortunate enough to spend her final two weeks with her, including her birthday. It’s time I will treasure always.

The crying still comes suddenly, but it happens less often. Thanks to everyone who sent tweets and e-mails of support. It means more than I can express on this blog.

And to Mom, if you can hear me: I love you. I miss you. I’m so glad your pain is over.

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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?

Had a bad week

This week was a rough one.

A friend’s mother’s battle with cancer is finally nearing its end. The chemo isn’t working this time and on Tuesday they stopped treatment.

Also this week, a tornado hit the edge of town where my mother-in-law lives. Everyone’s okay. There was some flood damage and some nervous horses, but only fences were harmed. Unfortunately, the two main exits into town and the center of all county commerce was hit hardest.

My wife and I are getting back home as soon as we can schedule it.

Complicating matters, I found out this week that my pressure still isn’t low enough and I’m scheduled for surgery number nine as soon as they can fit me in.

On the plus side, I guess I have blog fodder, if I can only find the time and the energy,

Oh, well. At least the week is over and the weekend is here. Besides, I can always imagine worse.

– Gerald

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.

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?

I Twittered My Surgery. I was awake anyway.

Long time no posts.

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

I did tweet my eighth eye surgery, however.

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

Hey, dude. Glass houses.

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

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

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

tweet1

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

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

OK. Maybe this is cathartic.

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

OK. Maybe not.

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

Still waiting @ 1:59pmtweet2

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

It only took four and a half hours to get my I.V. on Twitpictweet3

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

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

tweet4

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

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

Not really, no, yes, and a little.

Another day, another neurosis.

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

OK, so the story ended abruptly.

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

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

The Short Version

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

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

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

Look at these two thumbnails:

Left Eye Right Eye

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

Pity Party

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