Out of Touch

I know it’s been awhile. I keep saying that over and over, I know.

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There isn’t a whole lot I can add to the caning lessons except that I’ve crossed a six-lane road at a busy intersection. That was scary. I learned that it’s good to time the traffic lights to see how long it takes to cross the street and how much more time you get when you press the button thingy to get the lights to change-it also gives you more time to cross the street. I have to look out for designated right turn lanes.

I’m moving on to learning to schedule bus rides. (I’ve had to throw out the negative thoughts I’ve had about buses-that poor people or people who have had their licenses revoked use them and how it makes me look “poor” or that I’ve had my license revoked. Obviously, with a cane, people would know that I was using the bus because I really can’t drive.)

It’s pretty much common sense. I’ve had to look at the bus route and see where the nearest and safest walking route (no jaywalking and making sure that there is a street light or a 4-way stop is at an intersection nearest my destination). I’ve also had to make note of where the bus route is “outbound” (leaving the depot/transfer zone) and inbound (heading back to the depot). Everything is about timing. How long does it take to walk to the bus stop? When does the bus usually get to a certain bus stop area (you can also wave to the driver if there is no bus stop). There may be two nearby bus stops, but I would have to see if it’s inbound or outbound (depending where I want to go and how much time I want to spend on the bus).

My life will always be about scheduling and even though I may still have to wait for a ride, it’s the next best thing to getting rides from an obliging friend/family member, whether (s)he feels obligated or wants to help) for appointments and such. A taxi isn’t always as dependable as a bus. You know the approximate time it will swing through; taxis may make you wait longer depending on their passenger list, but it’s also a whole lot cheaper to use a city bus.). I’ve always been a patient person, but during the past three years that I’ve given up driving, I’ve found limits to my patience when I’ve had to wait for a taxi for an hour or having to work around someone else’s schedule just to get a ride. The only “on a whim” transportation I have is walking-walking to where I want/need to go.

Most of the time, it seems like I “fall into step” with the cane without thinking about it now. I might be out of step if I duck from a tree branch or hit a crack in the sidewalk or something, but I correct it and get back into the “swing” (or rather, roll, because I use the rolling tip) of things again. When I do “fall out of step,” the tune to the song “Out of Touch” by Hall and Oats drifts into my mind, only I’m mentally singing, “I’m outta step” instead of “I’m out of touch.” LOL.

Flare is loving Vanguard. She is a color guard and she does fancy routines with a flag in parades. She enjoys the camp-like feel to it and she’s made new friends. I admire her for doing this. I have stage freight. I feel very uncomfortable being in the public eye. She has no qualms about that. I wonder if she’d do presentation-type things with little nervousness, too? She’s song and acted in front of a crowd.

She is a typical teenager. Parents have to “get with it”. I like my fanny pack (or rather, I called it my tummy pack because I wear it over my stomach not my fanny) and lately, I’ve worn it on my hip because of the way I hold the cane in front of my stomach. Besides , who wants to add 1,319,429 inches to her waistline? Heh, heh. Flare, though, calls it the “granny pack” because only “old” people wear that these days. I like the “hip pack” (I tell her it’s “hip” LOL) because it keeps my hands free when I’m looking at things and the purse straps always bugged me. I’m not a purse person. I nearly always forget I have a purse with me because I rarely take it everywhere with me except when shopping. When I’m shopping, I don’t set the purse down anywhere. When I go somewhere else, I’m so used to not having a purse with me, I forget I have it. I try to avoid that as much as possible now, that’s where my “hip” pack comes in. No more “forgetting” my purse; it’s attached to me.

I’ve been trying to keep Angel busy by going swimming or going to the library. The neighbor kids come over looking for someone to play with.

Both dogs had their birthdays in May. Topaz is a year old now and Onyx is two. When I take the dogs for a walk, I take turns with them. I prefer to take Onyx first because she’s easier to handle. Topaz is a very strong dog who just is in “alert” mode continuously. He sees a rabbit or a bird, he’s in a listen and wait form. There are times when a dog would bark at us because we are walking by its territory and Topaz would just spin me around in a circle. He’s all bones and muscle. The leash would limit his advance and by twisting me around in a circle, he’d knock into my legs. I have a nasty reminder of that-a huge bruise on my calf. Ugh. I get bruises for a lot of things. Years ago, I had a coffee/cocktail table in the living room. I got rid of it because I kept banging into it. (I don't miss it, either, because it's amazing how much less cluttered the living room looks without a coffee table in front of the sofa.) A few years ago, Hubs moved a boat trailer in the driveway. It’s right in the walking path to and/from the back deck to/from the back door. Yep, you guessed it. I tripped over the trailer by the hitch and got a nasty open wound on my shin. Yes, it was getting dark. Yes, I probably should have started caning lessons a long time ago, but I wasn’t mentally ready to “come out”. During the past year, I just knew that I had to get going on that and just get used to it and accept the vision loss and let the cane “speak” for me.

Speaking of letting the cane “speak” for me, the other day, Flare and I went to the grocery store, split the grocery list in half (actually, it was more like 75/25). That saves so much time that way and it was the first time I brought the cane to this particular store. I nodded at people and said “hi” to some of them. I watched them stare at me or look furtively away immediately after seeing the cane. One lady started up a conversation with me about spaghetti sauce. She looked at me in the eye and I looked back at her. I don’t know what she thought. She didn’t look confused or accusing. I just assumed that maybe she knew someone who had similar vision problems. Who knows? I felt that she wanted to ask, but was afraid to. (When Angel had a dentist appointment, I could see how the dental assistant tried to keep her expression free of confusion, so I just told her that I had tunnel vision and that since I couldn’t see anything below my nose, the cane helps me from walking into chairs and stuff I don’t see.) I could tell she wanted to ask.

So, when Flare and I got to the check-out and started loading the conveyer belt a Hamburger Helper box was getting crushed by the cashier. (I had no idea what was happening; I was busy putting things out of the basket. Flare told me what happened when we got home.) At first, I was loading this on one-handed because the cane was in my other hand. Somewhere along the line, I just set it against that conveyer thingy and loaded things with both hands.

Anyway, while the box was being crushed, a woman was watching that box and looking at me, like, why aren’t I going to “rescue” the box? She caught sight of the cane and reached around to move the box. (Remember, I had no idea any of this was going on.)

Ah, so, the cane speaks louder than words. I didn’t have to feel stupid not “seeing” the box get stuck. Lancelot (what I named the cane), my knight in shining aluminum spared me from looking stupid or rude. Thanks, Lance. J

(Of course, while this was going on, I don’t know why Flare didn’t take care of it, too? Of course, she was probably farther away from that box than I was, because I was in front of the cart and she was behind the cart..

Well, that’s it for now.

My White Knight

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It’s funny where thoughts lead me

Remember how I came up with a name for my CI (cochlear implant) ?. I was thinking about rabbit ears, then I remembered Peter Cottontail, a children’s book about a rabbit. So Pete (or Petey) was the chosen name, and as an added bonus, if Pete were to have a brother…a CI in the other ear…it was going to be named “Repeat”. Pete and Repeat... (I remembered some joke about twins with that one, but I don’t remember how it went, though.)

The cane will be like an extended arm. It will warn me of obstacles in my path. In a way, it’ll be a bodyguard of sorts, my knight in shining armor, er, aluminum-all decked out in red and white, so it’s easy to see where my thoughts lead…I came up with a name for the cane. I was thinking that name of a knight would be fitting. Meet…Sir Lancelot (or Lance, for short). And it has a double meaning because it “lances” a lot. Yep, another male name. Heh, heh. (A result of too many females in my house??...heh.)

The fourth O&M session was somewhat a review of staying in step, crossing streets, and listening to parallel traffic. That can be a challenge. The instructor stressed that it was important to wait till the car that passed us to be out of earshot so an oncoming car wouldn’t be drowned out by the passing car. There were also lawnmowers to consider and if that were the case, then you’d have to wait till it was the farthest from you. The world is a noisy place and I pick up things differently or may not hear sounds at the same distance others do. I have a hard time singling out a sound. In a bar or at a wedding, the TV or jukebox/band/DJ would overpower anything else I want to hear, like conversation. So lawnmowers may beat out the noise of a vehicle. I am so used to using my vision to “hear” for me and I tend to “see” what I hear, if that makes sense..

The fifth and sixth sessions were pretty much review-making sure I use nearest parallel traffic as my cue to start walking across the street at two- and four-way stops and at traffic lights, whether there’s a signal for left turns or not.

I now have another cane, a fiberglass telescoping cane. It’s very lightweight and until the next session, I’ll have to make a decision whether I want to keep this one or the folding one, which is aluminum, btw. I am so used to using the folding one. I was also given three different rolling tips (each one larger than the last) to try out and see which one I like best. Rolling the cane versus tapping the cane makes a big difference in feeling the texture of the sidewalks (dips, cracks, or just worn down and full of tiny bumps). I even feel the cane go off the edge a curb more. But, it’s harder on my hand. I FEEL the vibrations as I roll it back and forth. I still tend to swing more to the right than the left so I’ll have to watch for that. I do like the fact that I’m not getting the jabbing into my stomach as I hit a crack with the tapping method, because the tolling tips go over the cracks better. So many things to try out.

Coming Out

A few days later, on a late Monday morning, I took the plunge. I got a hold of Onyx’s leash and Lance and took a stroll in the neighborhood. It was a bit nerve-wracking because not everyone in my neighborhood knows about my vision problem and would be confused or not understand why I was using a cane. I figured I might as well get used to it. Onyx was surprising good, staying close to my leg on the left side. She “heeled” very well. I was proud of her. I didn’t try it with Topaz. He tends to pull yet and I didn’t want to deal with that.

Some of the neighbors were out and about. One lady had her dog out, unchained. Before I was aware of it, she called her dog to the door. I looked up at her and she said, “He’s just behind your dog. Now he’s going to come by me.” It was strange to think that she felt she had to describe what the dog was doing. I could see him, but it only reinforces my belief that the public needs to be informed that not all cane users are 100% blind. There were lots of lawnmowers out. People relaxed during the weekend and maybe most had evening shift jobs. I did my “listening” for traffic, trying to weed out the sounds of weedeaters (pun intended) and lawnmowers. Then there was a garbage truck. Slow moving. Big road hog. Noisy. I pretty much used my vision to see if there were no vehicles coming before crossing a street. An older man was outside and saw me. He said that it was a beautiful day and “you enjoy your beautiful walk.” Again, the assumption that I couldn’t see anything and that he chose his words “beautiful walk” instead of “beautiful scenery” or something. I did have an emotional moment with that one, but I kept going. Onyx walked with me without a hitch.

Two days later, I braved it and took the plunge again. I saw a neighbor I talked to often. I don’t think she was aware I had a vision problem because I walked the dog(s) often. It felt weird. It’s going to take some getting used to, not only for me, but for those who knew me casually.

I am always getting jabbed into the stomach by the impact of the tip getting stuck into a crack in the sidewalk. The cane bends like a fishing pole.

(This is another thing about me: I’m left-handed. I write with my left hand. I eat with my left hand. I used to play tennis with my left hand. I scrub with my left hand. But pretty much everything else, I do with my right hand. I bowl, shoot darts, and use the cane. Weird..You know that saying about how left-handed people control the right side of there brains and right-handed people control their left side of their brain…well I guess I’m only half in my right mind. Heh..)

Oh, I had another “Close Encounters of the Magnetic Kind” moment.

I was hanging the wash on the line and whaddaya know, I bumped my head on the clothesline and ol’ Pete decided to pop off my head and attach himself to a clothes pin. It was one of those plastic ones with the metal clips that holds it together. Well, they are MAGNETIC!! It was like scolding a wayward dog or child or…(dramatic pause here)… husband. “Come on now. You have to stay with me. “.

The other day, Flare was practicing her music and the high singing pitches (soprano) were getting to me. So I just turned off my hearing aid and demagnetized my CI. Isn’t that great? A whole new meaning to “selective hearing”....just turn everything off so I don’t have to hear it.


Hear, Hear.

I had my 9-month map earlier this week. I am pretty stable with my hearing, word, and sentence tests. There isn’t much to report here. I had the volume pumped up a bit more for the first two programs (P1 and P2) while P3 (focused listening) and P4 (music program) stayed the same. I did get the high pitches back, thus the sharp “sss” sounds when people say the “shhh” words. I’m just playing around with that again because things sound kind of “flat” without it. I’m hearing the details of the dogs walking on the floor again-padded paws along with their toenails clipping on the floor.

I still hear different birds chirping, but until I know which bird is what, I couldn’t tell you which ones they are. LOL. One day I was sitting on the porch, just looking around (or zoning out, lol), I hear a weird bird. I’m like, is that a duck?? Where is it? I’m looking up at the phone lines, rooftops, etc. Here Hubby was standing in the doorway behind me, using his fake duck call thingy he uses for hunting. I’m sure he got a kick out of that. Ha.

Okay, will try to make my blog rounds when I can. I’m so behind on everything again. Emails galore!!! I’ve been pretty selective with emails.

I've Got My Groove Back

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The most recent session (No.3) was even better than the last two.

I learned some going up/going down the stairs techniques with the cane.

I still had a problem with my start up. No, not like a person who doesn’t know how to use a standard stick-shift vehicle, but I tend to take a big step with my left foot and swing too far to the right. That made me “off-beat”. (Now, now, be nice. I know what you're thinking- that I’m a little off-beat anyway…) Talk about starting off on the wrong foot…wait...I take that back, I DO start off on the right foot (actually, it's the left foot, but I degress), but I have to work on my first three steps. Hopefully, that’ll be worked out asap. I was also afraid to tap the cane too hard. I need to loosen up more, too.

I was encouraged to walk faster if that would help me stay in sync. It did. At the beginning, I still couldn’t tell when I was out of step. I was concentrating on my leg moving to the opposite direction of my swing, but I couldn’t focus on that. I was told that when my left foot landed, the cane should tap on the right side and visa versa. Suddenly, it clicked. It was easier to focus on my left foot landing at the same time the cane tapped on the other side. Whoo-hoo. (Patting myself on the back.)

I've got rhythm; I've got the groove. I'm marching to my own beat. Like I said before, just a little but of work on the first three steps. I'm hoping to fix that before the next session.

The instructor took me to an intersection that had 4-way stop signs. We worked on crossing the street. (Yikes, I don’t want to think about crossing the street with street lights yet. I know the day will come and I hope I don’t freak out. LOL.

I got to keep the cane this time. That must be a real good sign, eh? I practiced it on the upstairs/downstairs techniques so they’d stay fresh on my mind. I haven’t really gone outside to practice yet. I like to walk the dog(s) and it would be difficult to simultaneously walk the dog and cane (it sounds weird, but I’m trying to use the word “cane” as a verb.) at the same time. I guess I just have to go without them.

On the home front: Not a whole lot of news at this point. (This mom needs to get a life. LOL).

Both girls are so looking forward to the end of the school year. This mom is, too. All those papers they bring home!! I am not talking about homework, either…aacckk. I’ll be glad to get a break from that. But it also means another step up the school ladder, another year, another grade….it just seems the older the girls get, the faster time flies. (No, I will not go there…you know, the older they get, the older I get…)

But summer break also means finding a replacement driver for Angel. The driver who currently picks her up from school won’t have a need to go there anymore because her daughter will be moving on to the high school. (Sad face). I’ll look through Angel’s yearbook and start calling other parents. Some kids stay after school for extracurricular activities so it narrows down my choices. (And I really appreciate the driver making an extra trip to the school after school because her daughter was active in afterschool activities. That was super nice of her.)

Now that the weather’s been nice lately (with no on-again, off-again winter surprises), Flare’s been riding her bike to and from school again. She can do that at the beginning of school in the fall. Hopefully, by the time winter (oh no, that "w" word again) rolls around, a neighbor kid will acquire his driver’s license and she can start riding with him. I’ll have to worry about her getting rides home during football and basketball season, though. (Note: She can take driver's ed this fall, but she won't be 16 till the summer of 2010.

I’ll be getting my 9-month map for my CI (cochlear implant) next week. (I can’t believe it’s been nine months already!!) At this point, I don’t think I need any tweaking done on the CI, but maybe it’s subtle and I don’t know it. Kind of like the RP progression: It’s subtle at times and by the time I notice a drop in vision, I’ve adjusted to it somehow. I do remember a lot of things I used to see well, like stars and fireflies. Speaking of which, they will be out soon. I can just see Angel squealing with delight over the bugs with built-in light bulbs, and I will just live vicariously through that moment with her. :)

Speaking of marching to a beat I mentioned earlier, Flare looked at my cane and wanted to try it out. I told her how to grip it and-without even getting into the “n’sync” chorographic details, she took off like a natural. I couldn’t believe it. She was “in step”. Of course, she’s a color guard in Vanguard. She knows how to march and follow the beat. She knows a thing or two about “footwork”.

That’s it for now. I don’t want to make this post a long one (like the other one), which I could have made into two separate posts. Oh, well.

Talk to you later.

Operation Raising Cane

I have session two behind me. (I used “raising cane” in the title in reference to learning…kind of like raising kids. You make mistakes and learn.)

First thing we did was to go a few blocks away, to an area nestled out in the neighborhood jungle. I felt self-conscious, hoping that no one would recognize me from my “good weather” jaunts with the dog(s). (Yeah, “coming out of the closet” is a hard thing to do. If I don’t know them, it doesn’t bother me half as much as it would if some stranger, like a cashier, knew me as a regular customer at a store. I guess this is also something you just have to get out there and deal with it till it gets somewhat easier.)

Hubby came along for about 15 minutes to learn the sighted guide routine. Once he got that down pat, he was free to go.

After looking at the address system in town and gauging how much I can see in the distance (i.e, traffic lights four blocks away and how far I can see cars in the distance ahead of me or behind me and whether I could read address numbers and street names), I got to practice caning at the local mall.

I still need work on being “in sync”. Here my athletic prowess shines through NOT. Winks. It’s more that I am focusing too much on all the things that I have to do (keep hand by my stomach, move the wrist left to right while staying in step. I tend to “overstart”. I take my first step a bit too long and swing the cane too far and then I lose it. Or I move the “magic wand” too fast and I am not walking as fast to keep the pace and then I am out of step again. As I said before, it takes practice. Some people are a natural. Some are a quick study and pink up on things fast. I’m just one of those who need to work on it. Sometimes I can tell when I’m not doing it correctly. I feel “off-balance” and know I need to straighten up somehow. It is a challenge.

*Many thanks to my Usher friends who are cheering me on and giving me enocuragement that I'll "get there" because some have "been there". (((Group HUG)))

I wanted to make a minor correction from the previous post (which I already editied). The folding cane usually has four or five sections, not three. I was thinking that the top part is called the grip, the body of the cane is called the shaft, and then the bottom is called the tip. (Don’t to confuse “tip” with being the top. In this case, it’s the bottom.)

I don’t know if I mentioned this or not, but a few months ago, I noticed I couldn’t read the paper. I got frustrated and didn’t read it for a few weeks. I didn’t know if it was age-related or if it was the RP progression. So I called the clinic, but my regular ophthalmologist retired. Oh, bummer. I hate starting over with a new doctor and go through the process again. Then, weirdly enough, I could read the paper again. It wasn’t blurry and I didn’t have to squint too much. After that, it fluctuated-one day I could read the paper and the next, I couldn’t. What’s up with that? And since Flare was getting migraines all the time, I thought I’d make an appointment at a local discount store for an eye exam for both of us. Maybe Flare just needed glasses and with all the reading she has to do for school (besides reading tons of books that interest her-right now it’s the Cirque de Freak series). So, it turned out she needed +2.25 OTC (over the counter) reading glasses. (Contact lenses may follow.) Her major headaches are gone. She’s not missing classes. There’s still some catching up she has to do, though..

As for me, I only needed a +1.00 OTC reading glasses. Anything stronger and it was blurry. It did magnify what I needed to read. I still have days where I can read better on my own than others.

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Here’s a couple videos about a woman with Usher syndrome type III. Since it wasn’t closed captioned (cc) and there is no transcript available (for my deaf/hard-of-hearing readers), I have included her brother's blog about it below so you can read what it was about.

First video:

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This is the most important story I've ever told. It's also the toughest. My sister, Rebecca, is smart, kind and hysterically funny -- truly, the most remarkable and impressive woman I've ever met. She works as a practicing psychotherapist and to make ends meet she teaches 15 spin classes a week. She does all of it despite a disability that's robbing her of her vision and her hearing all at once.

Stop for a second -- think about that! Doctors have told my sister she will likely go completely blind and deaf within the next 10 years. As my sister describes it, "It's like I am slowly being taken from the world around me -- like the end of an old Warner Brothers cartoon on TV where the picture becomes an increasingly smaller hole until it finally fades to black."

Rebecca has a rare genetic disorder called Usher syndrome, type III. It is among the cruelest of disorders -- progressively stealing normal life away from roughly 16,000 people nationwide. And, currently, there is no treatment or cure. Rebecca lives courageously each day with the hope that a cure will be found before it's too late. My family and many others are determined to help through our involvement with the following organizations.

An extraordinary research effort is already underway through the "Usher III Initiative" at Hope for Vision where a dedicated team of scientists is focused on Rebecca's specific disorder. I recently spoke with Dr. David Saperstein, Scientific Director of the Usher III Initiative, who says their researchers are working on a multi-faceted approach to slow or halt the disease's progression, including the development of a targeted drug and gene therapy.

In addition, the Foundation Fighting Blindness funds research on a broad spectrum of retinal degenerative diseases, including Usher syndrome, and was involved in the important early work that helped characterize the gene that causes Usher syndrome, type III.

I asked my sister to share some personal stories about her experience living with Usher syndrome, type III -- her fears and the challenges she faces:

Second video:

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More from Rebecca...

There isn’t an hour that goes by where I am not reminded or challenged by my loss of vision or hearing, but this is my life and these are the cards I was dealt. I'm not frightened by the progression of my condition, but I am saddened by the things I can no longer hear or see.

I have the same hopes and dreams as any fully-sighted and hearing person and my dreams haven't faded with the progressive loss of my vision and hearing, but my disability has made me more driven and eager to take on each day. When I began to lose my hearing, I learned sign language and have found a sense of belonging among the Deaf and hard of hearing community. When I started coming to terms with the idea of going blind, I sought out a mobility specialist to teach me how to use a cane so when the time came that I needed it, I'd be ready. I don’t have time to sit around and think of all of the possible things that could happen to me. I simply don’t have time.

I have always insisted on living my life independently. So, it's been a challenge to ask for help from others. However, as my vision and hearing have continued to decline, I have become more comfortable asking for help. In fact, it's felt very liberating. It has allowed me to really connect with others and has enabled others to become more comfortable and open with me about their own lives. I'm incredibly lucky to have a wonderful, loving family and very loyal, close friends. The more I have come to accept myself and face my own challenges, the stronger my relationships with others have become. What I have learned is that we cannot live life on our own. We all need each other for support in so many different ways.

Sadly, many of my biggest fears already have been realized. I’ve been rejected by people I’ve dated when they found out about my disabilities. I’ve been left alone in a really loud and very dark bar by people who didn’t understand that I needed them to stay by my side. I’ve even been hit by a cab. You name it; it’s likely happened to me! But I can’t stop living my life because of the obstacles I face each day. My disabilities have made me passionate and energized to live my life to the fullest.

It's All in the Wrist

You hear that all the time.

How do you do that? Whether it’s bowling, shooting darts, playing certain sports, it’s what they say. It sounds a bit cliché. But true.

I just had my first O&M session. For those of you who don’t know what that means, it stands for orientation and mobility. You need to know how to use a white cane effectively and accurately. It isn’t as easy as it looks.

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No matter how much I prepared myself by getting information from other seasoned caners, but emotionally, I needed to grow, too. The cane would symbolize me as a person who is visually impaired. I’ve hidden it from strangers and it takes me awhile to tell others. Conversely, I don’t have that issue with my hearing loss; I’ve lived with it all my life. It’s no big deal. I'm used to it. Growing up with hearing loss makes you more resilient. Hey, I’m deaf. Speak slower. Don’t exaggerate your lips, please. Please talk normally, just a bit slower. And so on.

People understand immediately upon my openness about my hearing loss, that there’s a reason for my confusion or misunderstanding. I am not being dense. I didn’t hear you. I have to use that principle with my vision loss, too I have to learn to be open about it so that my actions can be explained. I might be bumping into things, walking really slow once I enter or leave a building. (This is because my eyes take some time to adjust to light, whether it’s sunlight or florescent lighting and by the same token, my eyes take time to adjust to dimness, too.) People may see that and jump to conclusions. (I know that I may have been making the same assumptions if I didn't know about low vision, too.) “She’s drunk”, “she’s on drugs”, “she should pay attention to where she’s going”, etc. Or even on occasion, I might even seem rude or snobbish not seeing someone wave their hand at me (just as I would if I didn’t hear someone call my name if they didn’t know I was deaf). All that can be explained. Hey, I am deaf. Hey, I have tunnel vision. Just because I have low vision, doesn’t mean I’m seeing what you can see. It’s limited. I am a great scanner. I do a lot of scanning to make up for my “blind spots”. That doesn’t always work. I may forget something’s in my path, even though I saw it when it was farther away. Once I get closer to something, it fades out of my line of vision and bam, I banged into it.

I know I will have emotional issues with the cane. I’m telling the world at large, "Hey, I’m legally blind. I don’t see well. I’m using this cane for my own safety and mobility." Most people may see the cane and know what it means, that the cane user is blind. What they may not know is that there are cane users who still have useable vision. They are not always totally blind. So, if you see anyone with a white cane, don’t assume they are totally blind and don’t assume they are “faking” it. It is illegal to use a cane if you aren’t legally blind/blind.

Several cane users I have talked to say that they were at a store, browsing through a magazine. There is the cane. Some people’s reactions are like, she’s reading? She has a cane. She’s faking it. She’s not blind.

I guess I will be up to me to educate those kinds of people. Yes, I am using a cane. I’m not totally blind. I guess I just have to get used to it, like I do with my hearing loss and my hearing needs.

I still have some emotional hurdles to get through. For the most part, my vision loss is my skeleton in the closet. Now that I’m accepting the fact that I should use a cane, I will still have to deal with it psychologically. Easier said than done. I haven’t broken down into tears….yet. I’m sure I’ll have those moments, but I know I am not alone.

I may start off slow. You know, baby steps. I may carry it around. In my purse or something like that, hidden. I might just use it at night or around family.

Yesterday I had my first O&M session.

The instructor met me at my house. We discussed what I could see (contrast, color, lighting, acuity, etc).

After that “getting-to-know you” part was done, we headed out to the mall. There he demonstrated what a sighted guide should do and what I should do.

I had to grasp his elbow kind of like I was holding a glass of milk, with my thumb on the lateral (outer) part of his elbow. I remained one step behind him. When we reached a doorway, I had to stay by the hinge of the door. When the sighted guide opened the door, I had to grab the door and have it close behind me. There were certain moves used to turn around. I would have to pivot like in basketball, but pivot halfway around while the guide would walk around me, then I was to grab the opposite elbow. Then there was the “about face” (I think that’s what it’s called) move, where if we were in a crowded area like an elevator (where you really can’t just walk around a person). Both the guide and the guidee (is that a word?) would just turn, face each other, and then turn again on the other side while the guidee would grab onto the other elbow. The other move was the “side-step” or “step-and-slide” or something like that. This involved the guide stepping to the other side while sliding the hand across the back of the guide.

Once the guiding thing was accomplished, I was introduced to the cane.

It was a folding cane. It had four sections (some have five). I was shown how to open it and close it.

Then I had to learn to "walk the walk".

It’s not as easy as it looks. You need to have rhythm and be in step. Talk about multi-tasking!! I was never coordinated. I had to remember to tap the cane about the width of my shoulders in front of me, back and forth, with each step the opposite side of the “tap”. (This is so that I know that before I take my next step, nothing's in my way.) I’ve made mistakes. I wasn’t in step or I lost my rhythm. It’s going to take a lot of getting used to. It's a skill.

But let’s back up a bit. There was a certain way to hold the cane, too. I had to have my “grip” in a handshake position with my index finger pointing down on the flat part of the “gripper” area (forgot what that was called). I had to have the bony part of my wrist bone (the median side by the thumb) facing out and hold the cane by my navel, against/close to my stomach. I wasn’t supposed to move my arm or hands. Corny as that may sound, it’s all in the wrist. Just flip it back and forth, back and forth.

Pretty cool, eh? That was just day one. I’m sure the next session will be a review of the guide/guidee thing and practice caning so I can be “in sync” with the cane. Practice, practice, practice….

I am busy trying to think of a cool name for my cane when I get one. Some caners named theirs “Moses” because it parted the “Red Sea” or in this case, parted the path in front of them When people see the caner, boom, everyone moves out of the way, like magic!! One caner named hers “Prince Charming” or “Charming” because it works like a charm. Hmm. Any ideas???

Time Sure Flies!!

Sorry I've been gone so long! I didn't think it has been almost two months??? Whoa.

glitter-graphics.com

Update:

I cannot believe it’s been over a month since I last made a blog post. I guess it happens.

Angel just celebrated her 9th birthday. She got an alarm clock that she’s always wanted (as an added bonus for this mom, it’s child-friendly to boot). She also got a summery dress, too. She’s just growing too fast. Sigh. Where did my baby go??

On the CI (cochlear implant) front, I had my 6-month mapping and in some areas I am stable and in others there is a marked improvement. I don’t see too much difference myself hearing-wise since the 3-month mapping, though.

I had a CI moment!!! A couple of weeks ago, I took the dogs outside on a bright, sunny morning. I heard birds, most likely robins, chirping their morning songs (or should I say,…dramatic pause…their morning gossip??) I’ve heard the birds chirp before with my hearing aids (HAs), but they all sounded the same to me, except for maybe the doves. If I wanted to, I’m sure I could distinguish each bird’s sound if I learned which one belonged to which bird. I never realized that the blue jays had such a low chirping sound. I’m sure I’ll be able to learn to recognize that. :Cool, huh??

I still have “deaf moments”. After all, the CI doesn’t make me a hearing person. I’m still deaf and coupled with the RP, I don’t have the sharp visual cues most d/Deaf people use and in a way, it makes me “deafer”. I don’t know how I can explain that. If I had normal vision, I’d catch more hand movements by someone trying to get my attention or something like that. Without being able to see that hand waving at me, I’m not “hearing” it. Does that make sense?

I also have more words to list that I mispronounce:

Decadent (I keep saying “de-CAY-dent” because I think of the word “decay” as in bad or bad for me-like a decadent cheesecake. It’s yummy, but bad for my waistline. LOL).

Chihuahua- “she-wah-wah”??

Sliver-somehow I end up saying “slither”. Ugh.

Years ago, I could not even pronounce the word “beat”. I kept saying “bth” as in, “I bth you.” I don’t know why. It’s how I picked it up.

Having two dogs in the house is a lot of work. Right now, Onyx is a shedding machine with the on-again-off again spring weather we are ‘enjoying” here. I’m sweeping the floors every other day and get a lot of black Onyx hair. And having Topaz (a.k.a. Dust Storm) tear through the house and make the dog hair/dust fly!! I admit I have “why do we have two dogs??” moments. We just got through a puppy stage with Onyx and now we have another puppy. It’s almost like having a toddler and baby in the house, only they are potty-trained. Am I crazy?? (Wait, don’t answer that.) But Hubby is happy to have his hunting dog (Topaz) and I cannot complain about something that’s important to him. I tell him why do we have dogs? Because they are entertaining (and, should I add, stress relievers who give unconditional love??)

I cannot believe it’s April already. We are moving into the year 2009 pretty quickly, aren’t we?? I was just telling the girls that in another two months, school’s out for the summer. (If I keep going at this rate, I’m going to be old….acck. LOL.) We had a few days of nice weather in the 60s followed by a drop to the 40s. Now there’s just snowed last week after a good warm spell and now we are back to comfortable temperatures again. Welcome to Wisconsin and its fickle, typical weather.

I am also participating in the first-ever Wisconsin VisionWalk in Milwaukee. How exciting to try to be a part of this fundraiser for Foundation Fighting Blindness!! We are so close to a breakthrough to finding a cure for degenerative diseases such as retinitis pigmentosa (RP), Usher Syndrome, and Macular Degeneration. I just have to believe that!! I’d be happy, too, if they-researchers, scientists, and doctors- could find something to just halt the progression of RP if they can’t reverse it.

If any of you want more information on that, please email me with the link to my email I have provided on the sidebar.

I know I am not blogging as regularly as I used to, but I’ll try to just post a line here and there.

Creature of Habit

Topaz's back. For good.

A little girl (okay, she's not "little" anymore-Angel always corrects me...) was very happy to have her puppy back.

Yep, he’s done with “training camp,” where his hunting skills were honed by a trainer. German Shorthairs are pointers and he showed potential of being a good hunting dog by the way he sat and put one bent paw up and perked his ears while sniffing a scent. Hubby still needs some "training" to give out orders and see if there's any correcting needed on Topaz's hunting skills.

When we got him, he was only home for about two or three weeks and then wham, off to camp he went.

Once he was brought back home, he acclimated easily. He was still housebroken and did his business outside. He kept himself busy, doing the “petting rounds” (going to anyone who’d give him attention) and playing with Onyx. He and Onyx will always compete for attention.

The first day, they played so much, they tuckered themselves out.

Alas, like kids, when a pet is quiet, does that mean they are doing something that he isn't supposed to be doing??

Looks like he was a little too busy....

Take a closer look at the lamp stand.

Bad dog!!

Yep, he was gnawing on it. I did not expect that at all. I guess I assumed (and we all know what they say about “assume”) that he was completely housebroken. He’s still a growing puppy, after all. He’s a hair taller than Onyx, too. I didn’t even hear him gnawing away at that end table.

That tells me I am due for a map. I can tell things are sounding softer. I’m not hearing things as sharply as before. I don’t hear (or maybe I’m too distracted to notice?) someone walking across the floor.) For those of you who don’t know what a map is, it’s an adjustment (or a tweak) to the cochlear implant (CI). I do have a 6-month map coming up next week, though. So hopefully I'll be back to form.

When it comes right down to it, we are creatures of habit. I could make a pot of chili and eat the leftovers for the next few days (however, Hubby and the girls would not). We all have a routine. We can be prone to addictions. While I don’t smoke or drink, I do have an addiction. Never mind caffeine. I won’t go there.

I am addicted to Facebook. If I wasn’t a computeraholic before (with all the emails, mailing lists, and blogging), I am definitely one now.

Facebook is not just a way to keep in touch with family and friends, but there are applications within Facebook where people send you “requests” for various things. It’s fun to have a virtual pillow fight or snowball fight with someone. There are applications that help the environment or the hungry. I have a virtual farm, too. And there are games to play. I am hooked on a game called Word Scramble that is much like Word Twist. I love that game.

So, I am using more computer time on Facebook and less on blogging. Which is worse, I don’t know.

So, I guess I need to work on time-management.

As other people and bloggers before me stepped up on the podium to officially declare their addictions, I, too, will come out and say.....

Hi, my name is Shari and I am a Facebookaholic.