Thursday, March 31, 2011

Riding Bikes

We live on a busy street, so in order to safely ride bikes, we have to load all the kids and all the bikes up in our van, drive to a local park, then ride around there. This trip, on the first semi-warm day last week, also included McDonald's for dinner.

Following is many, many pictures of kids on bikes, kids riding bikes and kids... uhmm... biking. The Bean looks like a mushroom in his bike helmet. Little Mister finally learned to pedal, and Curly did about 20 laps around the rest of us. When the sun went down, we got cold and went home.













Wednesday, March 30, 2011

Because...

Because today looks like this...

gloomy, rainy weather

My kids and I built one of these...

a blanket fort

It explains why I'm still wearing these...

red plaid pajama pants

...and thinking that a fire sounds nice.

Happy Wednesday!

Tuesday, March 29, 2011

A Year and a Half

Bean with scrunched face, trying to smile for the camera

AKA:

A goof and a half.
A handful and a half.
A cutie and a half.
A chatterbox and a half.


Man, I love this kid!  He makes me so happy.  He loves to make us laugh and is always goofing around.  He's super healthy and happy.  Usually, he takes one nap in the afternoon, and goes like 60 when he is up.  All of his teeth have now come in too!  He says a bunch of words that we can understand, stuff like "Mama" and "All done" and "Go, go go" (because it's all he does).

We haven't seen Miss A for quite a while, but I still think of her often.  I'm still so grateful for the gift she gave us in allowing us to parent this wonderful, goofy, happy, delightful, wild, strong, amazing boy.  I know he will always be a part of her, too. 

Happy half-birthday, Bean!

Monday, March 28, 2011

Randomness, Specialty of 4-Year-Olds

This evening, we took the family to the mall, intending to walk the circuit a few times and burn a little of the excess energy we all felt from spending the muddy, damp day indoors.

When we finished our constitutional, we let the kids play a couple of games at the arcade, then treated ourselves to ice cream, thus erasing every possible health benefit from the walking. While we ate our ice cream, another mom looked over at us from the next table and burst out, "I see your family everywhere!" She proceeded to chummily introduce herself and begin chatting with us.

Little Mister, in particular, seemed enchanted with the idea of carrying on a conversation. I guess in his little four-year-old brain, the wires labeled "conversation" just got hooked up and he was eager to use them. Unfortunately, the wires marked "relevant" have yet to be connected, so here's a transcript of the exchange:

Other mom: And what is your name?

Little Mister: [gives full name, but it was not very understandable.]

OM: Oh, it's very nice to meet you.

LM: Someone hiked up Kamiak Butte with a latte.

OM: hiked... where?

LM: Kam-ee-ack Butte.

Curly (the peanut gallery): He means Kamiak Butte.

OM: Oh, Kamiak. With a what?

LM: a latte.

Me (smothering hysterical laughter): That would be your Aunt Jen. She hiked up Kamiak Butte with a latte last summer.

Hubby: Where did that come from?

OM: a latte. Huh.

LM: And there was a wedding.

OM: Oh, you were in a wedding?

Me: Almost two years ago. Same sister.

LM: Yeah, she got married. You have to have a wedding to get married.

OM: And were you in it? A ring-bearer, maybe?

LM: No, I just watched. (He was, in fact, in said wedding.)

OM: Oh, I see.

Hubby: That was totally random.

OM: He's four. (As if that explains everything. Oh, wait, I guess it does.)

THE END.

Sunday, March 27, 2011

His Father's Son

"This is a picture of a coffee cup on a table. I drew it for you because you like coffee so much."


Thanks, Little Mister. :)

Thursday, March 24, 2011

A Bean and His Book

This is mostly for the grandparents. :)

Tuesday, March 22, 2011

Understanding (My) Low Vision

Writing this post is for me highly emotional, and at the same time, sort of cathartic, as though I am coming clean with something, or coming out of the closet, to use the vernacular. Many of you who know me don’t realize I have low vision at all. Some of you who know me well have heard me talk about some kind of “eye thing” or complain of headaches once in a while. Also, some of the explanations I put forth may sound a little strange. It’s one reason I almost never talk about this to anyone except Hubby, who hears probably more than he would like. I won’t try to defend my own perceptions, merely describe them. It’s difficult to do, since I have only ever seen through my eyes, with my brain.

In an attempt to clarify for myself and to explain to others what I can and cannot see, I have put together a PhotoShop journey through my world. The only way to get a thorough explanation of the various aspects of my crazy vision is to have a LOT of pictures and a lot of details, so if you’re the person who doesn’t care for nauseating, nerdy, egomaniacal detail in an over-long blog post, you might want to begin skimming now.

I have seen the world in the same way for as long as I can remember. As a child, I began to be more and more nearsighted, but I did not realize the full extent of the way my vision differs from a normally sighted person. I only knew that I struggled. Reading hurt, and although I was addicted to books and read through the pain, as the years went along, it began to hurt too much to ignore. Sports and PE in school were a grim experience, a hell that I supposed I must endure in order to graduate. This wasn’t all due to vision, but a lot of it was. I simply could not figure out why basketballs came out of nowhere to smack me in the face, why I lost the hockey puck immediately after I hit it, or why tennis balls were invisible. I struggled socially too. Faces came and went; on top of this, I was academically smart and not very confident, none of which lend themselves to social success.  But I have been told by eye doctors that my glasses correct my vision, that most people wear glasses and see fine.  I have been told that nothing is wrong, or that everything is fixed when I put my glasses on.

Since I was a child, I have been fascinated with the methods blind people use to cope with the world. I didn’t realize until recently that part of that fascination was an identification with their struggles in not seeing. For me, seeing has never been easy. I liken it to wearing a pair of highly uncomfortable shoes when everyone else gets to wear tennis shoes. My shoes don’t fit. Seeing takes work; it takes concentration and focus. It’s exhausting. Just because I can concentrate and make out the details in a given object, does not mean I can easily see or use vision in a useful sense to navigate or gain information. Eye doctors tend not to understand this, or if they do, they uncomfortably brush it off, since there is nothing they can do about it, and they are in the business of curing you.

I have considered writing a post like this for a long time, to try to put forth my view of the world, to let people look through my eyes for a few minutes. Part of me didn't want to do it. Part of me is happy to pass for a sighted person, to keep my struggles to myself, to work hard at seeing and to fake it when I couldn't. Then there is a part of me that desperately wants people to understand. It would be nice to have people "get" why I don't recognize them as they wave to me from across the street. It would be nice to have answers to people's questions when they genuinely want to know what I am talking about when I tell them I don't see well.


So how do I see? The answer to this question comes in several pieces.

I'm Nearsighted.

Big deal. A lot of people are nearsighted.

my glasses

I've met people whose glasses are stronger than mine, but not many. Once you hit a certain point of nearsightedness, the effects stay about the same anyway. My prescription is around -7.00 in both eyes, not the worst I've ever heard of by a long shot, but usually enough to make a new eye doctor comment in surprise.

my living room, decorated for Christmas
my living room, decorated for Christmas, as seen through thick glasses, blurry on the periphery and distorted in the middle

I took the image of my living room, all decorated for Christmas last year.  Then I tried to recreate the view of the same room through thick glasses.  The edges, beyond the glass, become blurred and fuzzy; also the image inside the glass gets distorted.  This distortion, even though I'm used to it, still surprises me. When the edges of objects inside my glasses and the fuzzy edges of the same object outside the lenses don't meet up, I sometimes find myself feeling a bit dizzy or nauseous.


Picture of the inside of my medicine cabinet (disorganized!)
same pic of my medicine cabinet but all blurred out

Of course, as any glasses-wearer can tell you, there are times when you cannot wear them at all. In the shower, or even in a steamy bathroom, they become completely useless.

pic of our local aquatic center with colorful play equipment
same picture of the aquatic center, all blurred out

Another interesting place where glasses aren't very useful is at the swimming pool. As a mom trying to teach my own kids to swim, I go ahead and wear them, but if I have a chance to actually swim, an activity I love, they don't do much good all wet, so I swim blind.

I Focus Like A Sprinter.

That's how one eye doctor described it.  I can focus really well for a minute or two.  In fact, given the fact that everything I see is several times smaller than it ought to be due to the concave lenses that correct the nearsightedness, I focus really well.  For a minute or two.  Then I get pain, eye fatigue, and finally give up and let the world go dizzily out of focus so my eyes can rest.

This is particularly problematic when reading.

normal page of text (it happens to be from a Rene Girard book)
(normal page of text)
same page of text seen through glasses with the edges blurred
(page of text viewed with thick glasses, minus lens distortion)
page of text once focusing is lost and with eye fatigue represented by red exclamation marks
(page of text once focusing is lost and with eye fatigue represented by red exclamation marks)

A normal page of text gets reduced somewhat by the glasses, but becomes impossible to read after a few minutes, unless I push myself hard to focus in spite of the pain.

Dry Eye Syndrome

This, along with the focusing issue, really hinders close-up activities.

a fan, which I hate

For some reason my eyes simply don't produce enough tears, or the tears drain off too quickly. Other wearers of thick glasses mention having the same problem, but my eye doctor said mine seems to be worse than usual. It prevents me from wearing any sort of contact lenses. Fans and recycled air are my enemies.

my laptop with red exclamation marks representing pain

Reading a computer screen or watching a movie, activities which tend to dry people's eyes out anyway, cause enormous amounts of pain. I do have and use eye drops, but they don't really help much.

Migraines

I get a migraine once a month or so for three or four days. While my migraines don't actually cause a blackout, they do make me extremely light-sensitive and also make the pain of focusing that much worse. If I remove my glasses (and thus the need to focus) and wear dark sunglasses, I can usually minimize the pain.

on the left a pretty scene of trees and flowers, on the right the same scene blurred and darker as if seen through dark glasses

In a lot of cases, during a headache, it's actually preferable to perceive the world without sight, thus experiencing less pain. It's easier to think my way through navigating the world blind than it is to navigate through that much pain.

I do take prescription migraine meds, but oddly enough, though they do take away the headache itself, they don't take away the side effects of light sensitivity or increased problems focusing.

Seeing: the brain part

So much for the diagnosed problems. The rest of these issues are conjecture; they are an attempt on my part to try to clarify what and how I see even though I don't know why it works that way. I'm not trying to self diagnose or be a hypochondriac. On the contrary, for years I thought everyone perceived the world this way. It is only through talking to other people about what they see, doing my own research and reading about scientists' findings in this area that I have come to realize that my brain has kind of a unique way of perceiving the world, beautiful and interesting, but not very useful.

Motion

Motion, for some reason, doesn't get picked up by my brain at all. My friend said I need a higher refresh rate on my camera. It was only very recently that I discovered this, but it explains the reason that the tennis balls and hockey pucks used to disappear during PE class. I simply cannot focus on a moving object.

motion blurred picture of green tractors
motion blurred picture of trees
motion blurred picture of colored lights.  The lights look like long strings

These pictures, taken out the side window of a moving vehicle, approximate the way I see motion. Whether it's a ball flying, words scrolling on a screen, or even the way the sidewalk dips and rolls when you walk down it, things blur out when they are in motion.

One of the things that put me onto this phenomenon was a conversation I had with Hubby not too long ago. I told him I'd seen the movie "The Lion King" in the theater when I was younger, but couldn't follow the story, and was surprised that, upon leaving theater, I had no idea what the story was actually about. He responded that the story was largely told in visual images and used a lot of motion. Something clicked when he said that. "I can't see things that are in motion," I said. Beyond that, I can't describe the phenomenon, because I don't know how people who can hit a baseball see it.

Ignoring Peripheral Vision

In my usual over-analyzing, geeky fashion, I have finally come to the conclusion that I don't have any usable peripheral vision. Of course wearing glasses means that the extreme edges are blurry anyway, but I'm pretty sure my brain gleefully ignores what might be out there. Possibly the distortion contributes to this.

The front porch of my house with edges blurred
same as above on the edges of the photo are covered with purple question marks, representing my brain ignoring that part of the picture

This creates some problems when walking around. The only way I can see where I'm stepping is to look directly at the ground in front of each step. Not only do I miss everything else going on, but my back and neck get extremely weary of constantly bending over to see where I'm going, or leaning over the counter to see what I'm cooking.

street scene in front of my house
same street scene with the edges blurred
street scene with edges blurred and purple question marks representing what my brain ignores, particularly on the part of the sidewalk in front of me


Faces

a room full of people, each with a purple question mark over his or her face

Whether a product of motion perception or just nearsightedness, I almost always struggle to see faces. I'm not sure if this is a brain phenomenon, as there is a condition called "face-blindness" where the brain does not perceive faces, or if I just can't see them very clearly, but I never can tell who people are.

The other day I went up to a man in Bucer's Coffeeshop and congratulated him on the birth of their new baby. He pointed to his ringless third finger and looked confused. I apologized and said I must have confused him with the guy I was thinking of whose wife just had a baby.

I know this happens to everyone at one time or another, but it happens to me every time I see anyone. It takes ages to figure out who they are, whether they are someone I know or not, and whether they are the person I think they are. Usually, I avoid embarrassing mistakes by not greeting people at all and smiling benignly at everyone, waiting for people to talk so I know who it is.

Visual Memory

Along with the lack of face recognition is the fact that I don't seem to remember what I see. Walking down the street, I look ahead, but if I look away, it's as if I never looked at all. When looking at a picture in a book, if I don't describe it to myself in words, I might as well never have looked at it. I have no idea why this is, since I actually have a really, really good audio memory. It's so good, in fact, that I can remember complete conversations years after I've had them. This doesn't help when walking down a sidewalk, or looking for a street sign.


Walking down a sidewalk



Look where I'm walking, and notice a crack in the sidewalk.



Look away to enjoy the scenery or identify a sound. Good thing I told myself there was a crack there. Remember to look back down before I trip!


Navigating the world takes an immense amount of concentration, since I have a constant internal narrative describing what I see to myself so I can remember it. When my kids are talking to me, it gets interrupted, and I feel a little lost.

Night-blindness

I think everyone experiences night-blindness as they age. For me, it seems unusually disruptive to getting around. I find myself terrified of cracks in the sidewalk and curbs. Lights stream out and glare in all directions and dim, shadowy places become invisible.

street scene at twilight
same street scene only much darker and with a lens flare on the glaring light

The same picture of a twilight street (above) becomes a painful wash of glaring light and dim shadow (below).

Of course, if I can't wear my glasses for some reason (like a bad headache), night vision goes to almost nothing really quickly. We use cones to see at night, which don't perceive color, but which use light-dark contrast and sharp edges to perceive the world. Well, intense blurriness takes both of these useful processes out of the equation so I get nothing so much as a dim wash of shadow, punctuated by blurred-out lights.

another twilight street scene
same street scene with less ambient light and lens flare on the headlights of all the cars, representing glare
same as above with blurred peripheral

Another attempt to show night-vision. The top of these three shows a street view. The next one shows the glare, then the bottom adds peripheral blur to get a fairly accurate representation of how I view this type of scene.


Well, in a not-very-succinct manner, I have tried to give you a "view through my eyes." But in an attempt to explain how I can see so crazily and still make my way through the world in such a manner that most people don't even realize I am not seeing, here's another question people might ask:

How do you COPE???

This is really important to me to explain to people. It's important to me that people understand that I am a competent parent, a hard worker and a creative problem-solver.  It's important that lack of vision does not define me, nor does lack of a medical diagnosis.  I see how I see. 

In coping, of course, safety is important. For one thing, obviously, I don't drive at night. I used to, then I started wondering why I was putting myself and my loved ones at risk.

Edited 9/19/11: I finally decided that it would be much safer and less stressful to stop driving entirely. I walk or take the bus most places, and it works out much better. I did not realize until I stopped how frustrating and stressful it really was, or how I was worried about hitting a person stepping out into the street. Also, the Drye Eye Syndrome was giving me terrible headaches when I would drive, so I'm much happier just using my own two feet. I pop the kids into the stroller and we're off shopping or running errands downtown. Luckily, the Post Office, the grocery store, several parks, our favorite coffee shop and the bank are all within a mile radius of our house. (The only places that are too far to easily walk are our church and WinCo. Luckily Hubby usually goes there at the same times I do.) Not only is it greener and more frugal to walk, it's good exercise.

blurry night street scene

view of the inside of the van and a street scene, with normal vision
(view of the inside of the van and a street scene, with normal vision)


view of the street scene with blurred peripheral.  The view out the window of the front of the van remains unchanged

(view of the street scene with blurred peripheral)


Aren't kids fast?

my baby with motion blur

You'd better believe they are! One of the scariest things for me in admitting I can't see is the fear of being judged in my parenting.  But I have developed alternate methods of doing everything parent-related and still doing it really well.  Hundreds of blind people parent children with as much success as their sighted counterparts using alternate techniques.  In fact, they may often be better parents, since blindness necessitates better planning and more thought than the average parent might use.

closeup of a blue bracelet covered with jingle bells

I have a lot of creative techniques for keeping track of kids and keeping them safe. Putting bells on the baby, dressing the kids in bright colors at the park and making them hold my hand are all ways I keep them out of danger.  From an early age I train them in good communication and in listening to directions, as well as obedience.  They know to come quickly if I call them, whether I am looking their way or not.

Another thing I do is encourage NOISE.

Kids at the table.  Bean is waving a corn dog and yelling.

Noisy kids are kids that I can identify, keep track of and know what they are doing. Whether it's natural, or because I encourage it, all of my kids make a LOT of noise. They talk a lot, sing, yell, clap and bang. I love every minute of it, because I know they are happy, healthy and I know what they are doing!


My iPod Touch set on a screen with the cover of an audio book, The Forgotten Garden by Kate Morton

Coping with reading has involved a switch to using accessible media.  I use audio books or ebooks with VoiceOver on my iPod Touch.

Logo for NVDA

I've discovered the existence of freeware screen readers like NVDA (Non-Visual Desktop Access) to use on my computer.  I'll also enlarge the font and take lots of breaks, usually to get something for the kids.

Braille numbers on my microwave
a page of Braille from the book of Romans

Learning braille comes in handy for reading books (slowly) or even the microwave. I am a huge fan of braille, and though I began learning it back when I thought I could see about as well as anyone else, I still loved the tactile reading experience.

folded white cane

I bought myself a white cane and have used it some at night.  I've been hesitant to use it in public much, though, because I cringe from the questions, the looks of confusion or the stares.  Stories of discrimination against blind people make it that much more attractive to hide and pretend I can see.

I want to use the cane more.  Hopefully soon I will get braver and stop caring what people think...


Is there a cure?

Snellen eye chart
The first thing people tend to ask if I mention eye problems at all is the possibility of a cure.  Have you seen a better ophthalmologist? Eye doctors themselves suggest the latest and greatest contact lenses, a new headache medicine or a different glasses prescription.

There is a new movement in optometry called Vision Therapy that might address some of the peripheral problems or motion perception.  I suppose LASIK might correct some of the nearsightedness, if I am even a candidate, which I think the Dry Eye Syndrome pretty much guarantees I'm not.

I have tried the suggested contacts (pain) and the vision therapy techniques.  I've tried different glasses prescriptions.  I've researched.  I know as much or more about myopia as most eye doctors.

In addition, I have pondered whether I even want to be cured.  Some readers might find this concept absolutely shocking.  Of course I would want to see like everyone else if I could, right?  Of course I would want the pain cured if I could, right?  I don't know how to answer that.  I have heard other blind people say they like aspects of their blindness and would not necessarily want perfect sight even if it was available.  They like not seeing the ugly things in the world.  They like not judging a person by their looks. 

I do know that I feel like I cope extremely well.  I don't think perfect vision would necessarily enhance my quality of life at all.  Being a good mother, a successful employee, a happy person... all of these don't depend on how much eyesight a person has but on how thoughtful a person is.  They depend making use of what you do have, both in terms of using senses like hearing and touch, and in using creative problem-solving skills to find new ways to do things.

Beauty

I passionately love beauty. I love beautiful sights, beautiful pictures, my beautiful children. I love beautiful music.  I love a soft, spring wind.

I love that standing on top of a mountain after a days' hike, I can appreciate, in some measure, the vista before me, but I also notice the sound of the open space like a blind person does.

Beautiful sunset over the ocean, with rays coming out of the sun

The way I see is beautiful, although imperfect. Author Steven Kuusisto writes about his own eyesight: "I see like a person who looks through a kaleidoscope; my impressions of the world at once beautiful and largely useless."

Bokeh of blurred city lights

While my eyesight might be quite a bit more useful than Kuusisto's, as I am not even technically legally blind (the conditions for reading the eye chart are pretty optimal, and my retina always checks out as healthy), I still have discovered that I certainly don't perceive the world in any sort of "normal" sense. Still, it seems "normal" to me, and beautiful. The world looks beautiful to me.

When I talked this all out with a friend, she told me to have a one-sentence explanation handy. When I'm out and about with a white cane, for instance, and someone asks about it, I ought to have a quick answer handy. But so far I have drawn a blank. There is no quick explanation, no one condition, no one description. My vision is intermittent, capricious. I can choose to wear my glasses, to fit in and see and ignore the discomfort and distortion. Or I can choose to remove the manacles of wire and plastic that keep me bound to pain, and live life in the blurry shadowlands, a place of beauty and where there is nothing useful to see. Sometimes I choose one, sometimes I choose the other. But so far I cannot find a one-sentence description.

To any of you who read all the way through this insanely long post, thank you. This is my confessional, my very, very personal expos√©. This is a part of myself I have hesitated to share, for to do so might make people cringe or judge. But it is a part of me, a big part of my life.  To those who also live with a sensory disability, you will likely understand.  Even those who don't understand, thank you for reading, for sharing a bit of what my life is like.