Wednesday, August 19, 2009


As a young child, I remember seeing a person use a cane and thinking to myself, I am glad I just have a hearing problem. Blindness must be worse.

Of course, little did I know that I would have a vision deteriorating disease that would slowly eat away at the edges of my peripheral world. But I often think of my thoughts and how I may have cursed myself. But maybe that’s what everyone else thinks, too. An automatic, incomprehensible thought of being blind is scary. A darkening world is not something you want to voluntarily live in or wish on someone.

Now that I’ve really let more people know I have vision issues just by using the cane, I noticed a lot of things:

Some people “assume” you are blind.

Children are curious. They stare. They probably don’t realize that I can see them and they continue to stare. Sometimes I want to explain, but I don’t. I have to keep going in the direction I’m headed.

Some have no idea what the cane is and what it’s for. I’ve had someone ask me if that was some kind of metal detector. I kid you not.

I’ve seen adults look at me, the cane, and look away quickly. Like they don’t want to stare or they feel uncomfortable. (I know I would have felt some unease around a “blind” person if I didn’t know what I do know about it.) Some ignore me completely like I’m not there. Some smile. Some look into my eyes as they pass me. Some smile. Some look at me and continue to watch, like a curious child. I guess it’s a novelty. You don’t see a caner every day. (Unless of course, you shop and work with someone who works or shops at the same time you do.) I want to mention, too, that when I smile back and meet their eyes, they kind of blink, surprised. I keep going and let them think whatever they want. I know I’m not faking it and I would not want to call attention to myself by using a cane. That’s just not who I am.

I’ve noticed how some people just don’t know what to say. The other day, a gas station cashier looked at me and my cane and I tried to lighten things up by asking, “Aren’t you going to ask me if I ‘have gas’?” I only got a faint smile for that one. I just wanted to show her I was okay with it.

I just want to say this: Don’t be afraid to say, “I see, “ or “See you later”, or even if they’ve watched any movies lately. It’s normal every day language. By the same token, you don’t have to avoid saying things like, “Hear, hear” when you agree on something or “I heard about that” to a deaf person. It’s just part of conversation. A deaf person wouldn’t take it seriously or literally.

There are some people who know that I don't see well and hear well and they don't know what to make of it. I use the cane in unfamiliar places and where I know a lot of people will be. I don't use it at church or at the school and I must confuse people because I look like I can see and hear.

I have found people to be more helpful. They’ll move a stroller or cart out of my path. Not all of them seem to be “blindophobic” or ignorant.

As I encounter each gradual loss of vision, I learned to adapt, maybe consciously as well as unconsciously. You stop driving in the dark because it’s harder to see. You drive only during the daytime hours. Then you avoid left turns except at streetlights and 4-way stop signs. You avoid backing up as much as possible. You drive on the outskirts of parking lots to avoid shoppers going to their cars or to the store. You find that it’s easier to park at the farthest side of parking lots where it’s least populated and you can drive straight out when you are ready to leave. Soon the “whiteouts” (the adjustment from to the bright sun as you step outside or as you make a turn into the rising or setting sun) affect your daytime driving. You notice that the lengthening shadows of the trees that line the streets make it harder to see in the late afternoon because it’s darker that way. Then you concede that it’s not safe to drive anymore and hang up the car keys for good. You go through a period of depression, then you look into learning to use the cane and use city transit or taxis. You even turn to friends and family for transportation. You learn to ask, ask, ask, and it’s still hard to ask. But the sores a person can say is “no”. So you try again. It keeps me humble.

Other adaptations include scanning with your eyes as much as possible. You do this by moving your head left to right because you can’t just move your eyes. The periphery isn’t there unless you move your head to get that “periphery” into view. You can sit at the table and see your cup, plate, utensils, and dishes of food. You scanned the table. You know it’s all there, though you can’t see it all. The brain seems to make up for the “phantom vision” that isn’t there. You act “sighted” and look “sighted”. You really aren’t ready to be “blind” though you do mention it to co-workers and family and friends. You familiarize yourself with areas so you can move around. You scan, see a chair, and avoid it.

After awhile, more of your vision is constricted, narrowed. You can almost see the spotlight of your vision, with the darkened rim in the edges of your vision. You see something like ripples of water, continuously lapping into the central vision you have. It shimmers, rippling like water, but it’s like it’s stuck in motion. Other times this area is just void, a nothing. Nothing is there. It has no color, like a very thick piece of plastic you can’t see through. In the dark/semi-darkness, that “empty” periphery is spotty, like “snow” on a TV channel that’s not working or aired at that time.

Similar to "snow" in the dark

You start to notice that you need larger font point sizes to read better or get reading glasses. You notice that some colors are harder to determine unless you put it right next to each other for comparison. Is that navy blue or black? Light yellow or lt. pink? Brown or hlack? Maroon or brown? You stop buying things in navy blue and stick with black. The list is endless.

Yet here I am, using the cane. I am not any different than anyone else except that I use a cane and wear a hearing aid and a cochlear implant. I am at a crossroads again. How do I label myself? Deaf-blind? I can hear some and see some. It’s easier to say I have low vision or tunnel vision than it is to say I’m blind, because I still have useful residual vision. I can hear with my CI and my hearing aid, yet without them, I am deaf. I can’t hear anything. I might feel things (vibrations), though. An airplane or a helicopter can fly overhead and I will not hear it unless I have the CI and hearing aid on. I don’t have perfect hearing, though.

It’s easier for me to accept my deafness because I grew up with it. Children are resilient. They bounce back and adapt. This is what they know. But my vision loss was gradual and I know what I used to be able to see. I used to play hide and seek in the dark. I used to go swimming in the dark. I used to drive in the dark. It was hard to accept that I can’t see in the dark as well as I used to. It was hard to give up driving. It was like this insidious eye disorder was taking away more than my sight, bit by bit. It was taking away more things I used to take for granted.

With the vision I have now, I could live with it for the rest of my life if I had to. I’m here, living with it. I’ve talked with others with Usher syndrome and retinitis pigmentosa and they all have different stages of vision loss, some worse, some better than others. I cannot comprehend losing more vision, but I know it’s possible and though I don’t want to admit it, it will get worse. I’ll be lucky if it stablizes for a long time.

I must think about other things like learning Braille. Maybe in the future, I might consider a guide dog, but right now I am satisfied with the cane. It’s something I can fold up and put away if I have to. I can’t do that with a dog guide. Not for vanity issues, but just to sit down at a restaurant or something. I don’t want to have the cane sticking out from under the table or something. A dog is always there, for potty breaks (and clean up), exercise, and feeding. I might change my mind later. I don’t know.

I know that I’d like to get better lighting in the house, too. The structure of my house is built so that most of the windows are on the north and south sides and it doesn’t filter in enough light. Cloudy days are best. I can draw up the mini-blinds and it’s just enough light. On bright sunny days, it’s too much, too strong and I would prefer to adjust the blinds so that they are almost pointing up instead of flat. It keeps the direct rays of the sun at bay. It’s funny with this eye disorder, it’s hard to see if it’s too bright or too dark.

Again, I don’t know how I’ll adjust if it progresses. It’s scary, but I guess I’ll adapt and just live with it.

I have my own “blindophobia”. I don’t want to get any worse. I have to leave it in God’s hands. He knows what He’s doing. There’s a purpose for it. He wouldn’t give me more than I can handle. I must be strong enough. It’s scary, though, but I like to think it keeps me close to Him, depending on Him.
I am not alone.

Sunday, August 02, 2009

Let's Roll

I’ve been going for walks to the waterpark, library, nearby stores, and just walking the dogs. I’m not regularly doing these things, but they add up. I just grab the cane and roll.

About a week ago, I was walking Onyx and I usually, by habit, look ahead as I walk to make sure nothing’s in my path. But I was distracted by Onyx’s constant stops to sniff at something. (I really don’t WANT to know what she’s sniffing.) Anyway, as I rolled the cane, I hit something. It was an empty garbage can that was tipped over, with its lid lying on the sidewalk. Had I not bumped into it with the cane, I’d have been sprawled all over that lid, cursing and everything, not to mention getting scraped up.

Another incident: I was at Staples. I was looking at some school supplies and I turned away from a display and proceeded to walk forward. A mother quickly grabbed her toddler who was in front of me, muttering “sorry” to me.

To ME. ad I not had the cane with me, I’d be the one saying “sorry” to her as she gave me a nasty glare.

I've had to 'roll with the punches", too. The cane can hit a rut or an uneven tile of sidewalk (even a thick growth of grass growing between the tiles) and I get jabbed in the stomach. I can't Teflon coat my stomach. I got a few bruises on my stomach. So, since other caners tend to hold the cane farther off the side by the hip to avoid the rut-gut incidents. I've been trying it that way while sweeping more to the right to make up for it.

Coming out with the cane, using it, was a very scary thing. I didn’t want pity or people staring at me. But the more I use it, the more I ignore the stares and let the cane do the talking.

I might be able to go around things, like in my neighborhood, without the cane okay, because it’s familiar to me and get by. But I think about the unexpected things, like the garbage can, and the cane comes to my rescue.

It’s funny how it’s becoming a part of me, like my hearing aid. I don’t leave home without it. Well, except for going to church. I did take it with me a few times, all folded up, but the kids pretty much guide me through the sea of people standing around talking. This morning I didn’t take it with me, though. The Hubbymobile dropped us off in front of the church and he picked us up in front, too. There wasn’t a whole lot to look out for. The crowd of people thinned down as we waited.

I’ve been taking the bus with the kids, taking them to the dentist and the mall. Sometimes the Hubbymobile takes us, too. Lately, when he has time and nothing planned, Hubby will offer to drive. (It’s still hard, even three years after hanging up the car keys, to ask for rides.)

Yesterday I had the opportunity to meet a fellow blogger. She picked us up (the girls and me). along with her three boys, and took us to the theater. We watched G-force. This theater isn’t open captioned and while I knew this, I wanted to see how much I’d get with the cochlear implant. I didn’t realize how much I depend on my closed captioning. They kind of work together…with me listening, reading, and watching the shows on TV.

This show was animated. It had talking guinea pigs. I was getting some of it, but not all. We made the mistake of sitting closer to the screen. So I was looking at less than half of the screen at one time, missing some action in the other areas. (The TV screen is much smaller, so I don’t miss as much action.)

To explain how I’m seeing, I’ll compare it to a flashlight. You aim the flashlight at a tile of sidewalk. You aren’t going to light up the whole tile when you are holding it one foot away from it. Back up a bit, about five feet, and you will get more “light” on that tile of sidewalk. My tunnel vision, or rather, “funnel” vision that I have works about the same way, I can see more of things when I am farther away from it. The closer I am to something, the less I can see of it.

This is why I prefer to have people sign to me farther away and closer to their face. So much of sign language is visual and the hand(s) can be “out there” and I’m missing things. I pretty much watch the face (facial expressions, lip movements, etc) while they sign to me.

Sorenson VP 2oo

On a last note, I got a VP (video phone). It is connected to my TV and I have my own number. When I get a call/make a call, a deaf person is on TV (similar to the web cam on a computer) and we can communicate in sign language. Sometimes I have a hard time seeing signs on the screen, though, because it might be too bright and/or too shadowy. I try, though.

I've noticed that the TTY isn't really used that much anymore. The VP calls are free and much more cost-efficient. Makes sense (cents) to me.

On the home front, Flare is all done with her color guard stuff. Summer is winding down. It’s been an unusual summer. Some days were too cool followed by a few hot days. It seemed like Mother Nature was blowing hot and cold all the time. But lately, the weather’s been great, not too hot, and not too cold. Just right. Like a Goldilocks kind of summer.

I can’t believe that in three weeks, the kids will be starting school again. Soon books and backpacks will be the norm again. And lots of paper!!! Notes from the teachers and weekly updates will be crowding the refrigerator door again.

Angel has been keeping herself busy (and sometimes me, too) with swimming and playing. Two new kids moved in the area, both girls, both around her age. So she has a handful of kids she can choose to play with when one can’t.

Well, that’s all for now. HUGS.