Insight: A Low Vision Expo

*I am receiving two passes to Insight: A Low Vision Expo from SightConnection in exchange for writing about the event. The words and opinions are my own.

You might remember me blogging all about my need for new eyeglasses and the process I went through to get them last year. As a visually impaired person, it is not as easy for me as it is for fully sighted people because my prescription is tricky, both to determine and to make.

It is so not easy that I waited over 10 years to do it! Bad Jennifer, very bad.

You can see in my little avatar there in the sidebar that I'm wearing glasses. Those are the new ones I finally got, and it was with help from a resource for people with low vision called SightConnection.

SigntConnection provides rehabilitative services throughout King, Snohomish and Skagit counties in Washington state to individuals living with eye diseases such as macular degeneration, glaucoma, cataracts, diabetic retinopathy, or other causes of low vision and blindness.

SightConnection created Insight: A Low Vision Expo, being held in two weeks, in response to the growing numbers of people living with low vision in order to give them a whole day to discover the best resources for low vision.

What It's Like to be Visually Impaired

Perfect eyesight is measured at 20/20.

With corrective lenses, my vision is around 20/200. This means that I have to be no more than 20 feet away from something to see it, whereas someone with 20/20 vision can be 200 feet away and still see it. I can pretty much see only the big E on the eye chart clearly.

This is in one eye. My left eye is unable to see at all.

The powers that be call this "legally blind". The word "blind" in there at all can make one think totally blind. This is why I prefer to use the terms "visually impaired" or "low vision". It's not politically correct; these terms are simply more descriptive, or specific, for someone who is in between fully sighted and totally blind.

I have been asked if everything is just blurry for me, like out of focus. We've all seen blurry photos. My answer is, I guess so, but for me, I think it's more dirty, and smudged. I can't see straight. Haha, right? But seriously, straight lines do not look straight to me. I can use a level to straighten a picture on the wall, I'll know it's straight because the level says it is, but when I step back to look, it still looks crooked to me.

Here are great examples of what it's like to have some eye conditions. However, none of them are me. I don't even think any eye doctor who's treated me has given a name to the problems I've had.

source
This happened to me the first time the retina in my right eye detached.
It was very annoying.

My eyes have suffered from inflammation which led to retinal detachments. My eyes have been treated with steroid shots directly into the eye, vitrectomy and laser surgeries to reattach the retinas. My left eye went untreated for too long before I got to the right doctor, so his attempt at saving the vision in that eye didn't work. The retina in my right eye detached twice, I had two surgeries and my lens removed. My right eye has been stable since I was 19, except that a contact lens I was wearing for awhile scratched my cornea, and I deal with dry eye.

There is some scar tissue on my retina that I can actually see. Those are the "smudges" I mentioned before. A bit of the scar tissue is very close to the macula -- the very center of the retina -- and it is sort of tugging on my retina, causing it to pucker, which I believe is what causes my inability to see straight lines. There was some discussion on whether or not to try to remove the scar tissue, but because I tend to have an inflammatory response to surgery, we decided to leave well enough alone.

What does all that mean for what I can and can't see?

Well....

I searched high and low (if you can search high and low on the internet) for a photo that looked close to what I see. I couldn't find one so.....I attempted to mess with one of my own photos.

But it didn't work. So really all I can do is try to describe how I see.

Like I already said, my vision is dirty and smudged, and ragged around the edges. In one eye. The other is dark. During the day I do pretty well, but at night, forget about it. I should really use a white cane at night, that's how difficult it is for me to see in the dark. I don't use a cane, however, because I'm never out alone at night.

I feel like the world is closing in around me when I'm out at night. It can be quite disconcerting, in an out of control sort of way. When in a car at night, it feels like I'm in a tunnel. I cannot see anything but lights beyond the reach of the headlights of the car I am in. I would honestly be better off just closing my eyes.

Lighting is everything. I need a good amount of light in order to see my best. Natural light is awesome, but direct sunlight can be too bright. Double edged sword I guess. I have a special hate on for restaurants with "ambient" lighting. I think we should all be suspicious of this. Why don't they want us to see our food?

My glasses are tri-focals for far, close and closer. The "closer" lens is how I'm able to read and see the computer. Actually, I'm looking through the middle "close" lens as I type this because I can see what I'm typing well enough, without having to have my nose pressed up to the screen. Also helps me to not make my back and neck angry. I often marvel at how far back on their desks most people can perch their monitors AND lounge back in their chairs.

My sight loss happened to me so early in life that I really can't even remember what perfect vision is like. My mom asked if I see clearly in my dreams. Nope. But sometimes I do drive - slowly! Over the years I've worked as a church secretary, scrapbooked, I can knit, crochet and even take some decent photos. And now I blog! I appreciate so much being able to SEE my children's beautiful faces, as well as each and every sunset and big, fluffy cloud.

Not being able to drive is the biggest inconvenience of poor vision. For me that is. I have known others with sight loss who lost a whole lot more when their eyes betrayed them. We live in a very visual world so it can be extremely hard to adapt.

Thankfully, there are lots of gadgets and other things to help make up for what one cannot see. However, because it's been so many years since I became visually impaired, I can't say with any authority what all is available today. When I went to the Orientation Center for the Blind in Albany, CA back in 1994, I learned basic Braille, white cane travel (mobility), computer accessibility, how to cook blind and for some dumb reason, how to sew blind. I hated that. To be quite honest,the skill I still use most is what I learned from mobility training. Things like counting steps and paying attention to what my feet feel on the ground. Also north, south, east and west. One other thing is that I can pretty easily identify clothing and other items by feel.

I have an appointment one week from today with an ophthalmologist. I haven't seen one in about 10 years because I've been too nervous to see someone new, someone who isn't already familiar with my eyes. I desperately want new glasses, though, so I have to suck it up and get it taken care of. Wish me luck!

For the complete story on HOW I lost vision, go HERE.

PYHO: Blind Girl

There’s a little something I’ve mentioned here before, but never really written about. Pour Your Heart Out seems like a good opportunity

* * * * *

I think I was around 7 when I first realized I couldn’t see the stop sign at the end of the street. At that time both of my eyes were fine, I was somewhat near-sighted, but all I needed was glasses.

A few years later, at age 10, I had my first bout with “inflammation” in one of my eyes. The right one, if I remember correctly. It was treated with a shot of steroids and life went on.

Then during the summer after my freshman year of high school (I was 15) I completely lost the sight in my left eye.

Towards the end of the school year I dealt with redness and pain around my left eye. My mom took me to a walk-in type clinic, the doctor there shined his little pen light in my eyes and diagnosed me with “eye strain” because I had been studying for finals, prescribed some kind of drops and sent me home. He should have known that he wasn’t an opthamologist and given me a referral to one. But because we automatically trust people with Dr. in front of their names, we took his word for it.

After some period of time (I honestly can’t recall how long), those symptoms did go away and we assumed my eye was fine. Not even I knew that I was actually slowly losing the vision in my left eye. All I can guess is that my right eye compensated, or denial, or….?

I lived in Lake Tahoe when I was a teenager and every year there is a great fireworks show over the lake on the 4^th of July. We decided to go see the show that year. We got to the beach where we wanted to watch when it was still sunny. I didn’t have prescription sunglasses so I would sometimes put my mom’s sunglasses over my regular glasses when it was too bright. Well I went to do this and that was when I noticed I couldn’t see anything to my left.

I didn’t freak out. I just sort of took the sunglasses off and tested things. I covered my right eye and lo and behold, I couldn’t see a damn thing out of my left eye.

Um. What the hell is going on here?

I still didn’t say anything. I think I figured if I couldn’t see, what could my mom do about it? Besides, it was a holiday and nothing was going to happen that night anyway.

Don’t get me wrong, I was definitely worried and uneasy, but I chose to keep it to myself until the next day.

My mom found an opthamologist in Carson City and we went right away. After his exam he informed us that my retina had detached. He referred us to a retinal specialist in San Francisco who might be able to help. I think we drove to SF the very next day and met Dr. McDonald.

Dr. McDonald said that I needed emergency laser surgery to try and reattach my retina. However, my retina had been detached for so long and the vision had deteriorated so far, that it might not work.

We’re talking about my VISION, so it was worth a shot.

One of my most vivid memories of that time was all the tests they ran trying to determine how this was happening to me. A nurse pulled me aside to ask if I was still a virgin because if I were sexually active perhaps it was an STD. Can you imagine my 15 year old horror at having to discuss this?

After surgery I had to lie face down for TWO WEEKS in order for the little bubble they left inside my eye to float up and keep my retina pushed to the back of my eye. My mom and step-dad took turns sleeping out in the living room with me to try and make sure I didn’t roll over. I ate hanging my head down. My mom was a pretty big Nazi about it.

And it was the middle of summer. Fun times!

We did everything we could, but it didn’t take. My left eye is dead to me. It ended up atrophying and looks really bad. I had to return to school for sophomore year with an ugly eye.

Because I am one of the kabillions of Jennifers in the world I became known as the “one-eye” Jennifer. Horrible, nasty jokes were made at my expense. The kind of jokes only cruel teenagers can make.

But I had some really good friends who would tell the jerk faces to shut up and would even explain about my eye for me to those who asked. Because I did get really tired of explaining it to people. Still, all of this changed me. I no longer looked people in the eye because I was self-conscious. When I met someone new and we shook hands, I would stare at our hands and mutter my hello, nice to meet you.

After a couple of years Dr. McDonald told me I could get a plastic prosthetic eye to sit in front of my bad one. For one reason or another it never happened, probably because it involved more trips to the Bay Area.

The rest of high school went along without incident. Well, without any more eye-related incidents, anyway. And even though I still hadn’t managed to get a driver’s license, my mom & step-dad gave me a car for my graduation!

Sounds good, right? Read on.

Less than 2 months after graduation I started seeing little grey/black floaters swimming around in my RIGHT eye. Then, the retina in that eye, the only good eye I had left, suffered a peripheral detachment. Meaning, a “corner” of it detached (there are no corners in the eye, though). Perhaps flap is a better word? The best way to describe it is it was like there was a bit of a curtain covering a small part of my vision.

My mom & step-dad were away on a trip to Canada. I was going to have to call my grandmother but I really didn’t want to bother her. Maybe it was nothing. Maybe I was just being paranoid. Denial was my friend even at age 18.

I did force myself to call my Grama and of course she rushed to my side. We went to the Carson city opthamologist who confirmed my fears. My mom must’ve called home (this was only 1992, long before the entire world had cell phones) because the next thing I knew they were cutting their trip short and coming home.

This time I had to lie on my side for 2 weeks. But this time it worked. My vision was left a little damaged, but otherwise things were alright.

In the meantime, however, I had to quite my movie theater job, so once I was recovered, I needed to find something to do with myself. A friend of my mom’s had recently given birth to twins and needed help. Well I love babies, so I was all over it!

Through my “mommy helping” I had the opportunity to spend a month in Florida the following April. It was fabulous, but my right eye started acting up again while I was there.

This time I simply noticed a change in my vision. It got ever so slightly blurrier. And again, I didn’t say anything right away. I was all the way across the country, and we’d be home soon enough anyway.

I think close to the time we were to be leaving I talked to my mom and gave her a heads-up that I thought maybe something was wrong again, and I think she made an appointment even before I got back. I have this vague recollection that we went straight from the airport to the Carson City opthamologist, but maybe not, so don’t quote me on that. Jeez, why aren’t these things super easy to remember? We’re talking about life-changing stuff here!

What I do know for sure is that Carson City doc told us my entire retina had detached and called Dr. McDonald who scheduled the surgery.

The weight of this situation hit us pretty hard. We became very concerned that I might end up totally blind. So my mom decided we needed to take a trip so I could see some of my favorite places one more time - just in case. Dr. McDonald said pushing the surgery out a little probably wouldn’t make much of a difference, so that’s what we did.

My dad & step-mother came down from Washington and all of my parents plus my Grama took a road trip together. Oh boy. It was really cool, but also really awkward. Nevertheless, we took the scenic route through Yosemite and Mammoth, over to Gilroy, Monterey and Santa Cruz, and the gorgeous Pacific Ocean, on our way to San Francisco and my third eye surgery.

I had to be on my face again, but this time my retina stuck, thank God! However, my vision was reduced quite a bit. I was now legally blind CORRECTED. The legal definition of blindness is 20/200. That’s right where I was at. That’s right where I am today.

Thankfully my right eye has remained stable since I was 19. There is a theory that adolescence exacerbated the problem so once I was through puberty, it calmed down. Seems plausible.

I never did get to have a driver’s license. But I DID finally get a prosthetic eye before my wedding day. It’s so funny to me that both my left “eye” and the left lens I wear in my glasses are totally useless. Purely aesthetic, vain. Just so I look normal, balanced. It’s kind of ironic I think, given that I pride myself on being authentic. I know that’s one of the reasons it took me so long to get the prosthetic even after I was living in the Bay Area. Isn’t it kind of a lie?

So that’s the story of my bum eyes. I’ve adapted fine. I’m mostly OK with having this disability, but I’m not going to pretend it’s all fun and games. I do get frustrated by not being able to hop in the car to run my own damn errands. And sometimes it’s extra frustrating as a mom when my inability to drive my kids places means they miss out on something.  Also?  It does hold me back some, contributes to my insecurities.

Considering the alternative, though? I am very grateful that I can still see ANYTHING! I’ve met a lot of blind people and 2 of my closest friends are totally blind. It’s doable. But nobody wants to do it.

I recently asked my daughter what she thinks about my bad eyes. She didn’t understand what I meant so I clarified, “Do you think anything in particular about your mom not seeing very well?” She shrugged and said no.

Sure, for now she doesn’t care, but I’m prepared for the day she throws it in my face in some angst-filled teen drama moment. Yeah, it’ll happen.