Saturday, September 17, 2011

Pride and Prejudice

Notice how the blind/visually impaired person in the above picture is holding on to the elblow like a claw? They are also a step behind the sighted guide. It is really a big help in big crowds and unfamiliar places. :)

Over the past few years, I can see my own personal growth, though at times I can still go through moments of prideful, narrow-minded selfishness of not wanting/accepting help or even some vanity towards not wanting people to treat me differently. These moments are far and between, however.

Five years ago, I didn’t use the cane. My hearing was really bad. The hearing aid in the left ear did not pick up speech. I was deaf in that ear. The right ear, while it was picking up speech, it only picked up about 32%. Meanwhile, my vision was dwindling bit by bit, as instructed by my DNA to self-destruct photoreceptor cells (rods and cones in the retina) one by one.

For many years, I pushed the idea of slowly going blind out of my mind. I was in denial. I could see. I just missed things. People aren’t perfect. It was all in my mind. But as the years went past, I couldn’t deny that I had blind spots that widened in the peripheral vision. I’d spread out my arms and bring them forward, seeing how far my hands would go in front of me till I could see my hands. They got ever closer to the center. It was like a big doughnut or tire was right in front of my eyes. I could see a sliver of movement/light at the far sides of my vision and then nothing, not blackness, just nothing, like it was erased, filled in the periphery, then I could see through the doughnut hole, the central vision. It was clear, with some staticky snow (like what the TV looks like with poor/no reception) around the edges of the vision I have left.

I knew my driving days were numbered. I was limiting so much of my driving that it became apparent that I had to quit. I didn’t want to hit anyone and get sued, especially if it came out that I knew I had retinitis pigmentosa (RP), a genetic condition that results in nightblindness and loss of peripheral vision, and can lead to total blindness.

I continued to walk to places. I did what I could.

I couldn’t imagine using the cane. Oh, the humbleness!! The vanity!!! I didn’t want anyone to know I had a vision problem. I didn’t want pity or people staring at me. Yet, because I grew up wearing hearing aids (HAs), it didn’t bother me if people saw that. I’d wear ponytails. I’d tell people I didn’t hear well. I was used to that. It was a life long thing. But this, this RP that was robbing me of my sight, was not something I wanted people to know about except for close friends and family. I slowly told a few more people, but it was hard. I wanted to hide it and I tried for as long as I could.

Three years after I quit driving, I got O&M training (white cane training). At the time, I still had a lot of pride and vanity. I didn’t want to use the cane; I just wanted to learn how to use it, just in case. With that in mind, I learned how to walk “in step” with it (that is, keeping the cane tip opposite of each step I took), learned strategies of street crossings of all kinds, though the one I hate the most is where there is designated right hand turns at every street corner. Drivers would be too busy looking for a break in traffic to make their right turn rather than to notice that there’s a pedestrian with a cane standing at the corner, even if I were to use the strategies I learned, like waiting for the car in the nearest parallel lane to just pass the street corner in front of me or behind me (where ever the nearest lane of traffic flows) to cross the street. This is supposed to insure that all other cars have to wait for that car to cross before turning into the street I’m crossing. By the time the car passes through the intersection, I’m already halfway across the street.

Then, to my surprise, after I was done with O&M, I kept using the cane. It was handy. It found the curbs for me. It found the cracks, even though at times I’d get a sharp jab in the gut or hip because when the cane stopped at a crack, I kept moving forward. Yeah, ouch.

I tried a different way of holding the cane to avoid the rut-gut chain reaction. It’s not fool-proof, but it’s better.

I got used to the stares. It’s a rare thing to see a “blind” person walking around with a cane. Some people think they can stare at a blind person, because, well, they think the blind person can’t see him/her staring. Sometimes I stare at them right back or just ignore them.

Just the other day, on my walks with the dog, I encountered brush on the sidewalk. Someone in the neighborhood got a lot of branches down and put them to the side of the road. It was halfway into the sidewalk. For about two weeks, I’d forget it was there, but the cane would always find it and I’d have to walk around it.

In stores and other public places, I’d pass children and hear them ask their parents, “Why is she walking with that stick?” or something like that. I can overhear them, thanks to my cochlear implants (CIs), which I got so I could hear better. (I still can’t get over how much I can hear things/voices behind me, from the sides without looking at the source and know what is said. Wow.) I felt safer being able to hear something I couldn’t see and also be less isolated. It can be a lonely world if you can’t see and hear well. You feel left out. People don’t know how to act around a person like me. With the CIs, I don’t feel as left out or isolated, but given my shyness, it’s not easy to come out and be gregarious, either. And I still feel “deaf” even though I can hear well with the CIs. It’s hard to explain that. I still have struggles hearing in certain environments where people congregate most. In restaurants. In bars. At wedding receptions…you get the idea.

In the past two years that I’ve been using the cane, I can see how far I’ve come as far as letting people know I have a vision problem. A few places I go to a lot, like the gas station a few blocks away, my children would get asked, “Can your mom see? I see her walking all the time.” And she’d respond, “Yes, my mom can see some.” Some of them say that they always see me walking period. (Why pay a cab/bus fare for a ride one mile away when I can walk?) People think a person using the white cane is totally blind. They are surprised.

It gets hard to accept help at times, though. If someone opens the door of a public place, that’s fine. I’m okay with that. But I do have moments when I feel a bit of self-pity, that rush of hot tears prickling the back of my eyes and shrug it off, maybe with a hard swallow over a throat that suddenly got a hard lump in it. It is not easy, yet so much better than walking around bumping into things and people thinking you are drunk or on drugs. Far better to use the cane that announces to the world that I hit things because I don’t see them, not because I’m drunk or inattentive or something?

I recently attended a bible study at my church. I haven’t done this in years, not since they had a mom’s bible class when my youngest was about four years old. But the church was dark. Not many lights were on. I was early, but I wanted to be. Someone from the church knew me and guided me to the room where the bible study was going to be. Once I got into the room, I thanked her, swallowed a hard lump and blinked fast, pushing off that bit of self-pity that stung my eyes. Would these moments ever end? I shouldn’t feel bad about accepting help.

Last week was Parent’s Night at my oldest daughter’s high school. I never attended one and she was a senior now. The first year, I was just “in hiding” about my vision. I just got my first CI and wasn’t comfortable getting around a school that changed so much since I attended there. The next year, I had the cane, but again, I was just nervous. Last year, I was going to go, but my second CI surgery fell on the same day the Parent Night was scheduled. I wasn’t going to walk around with a head bra (bandage). Can you imagine that scenario? Me, with a turban around my head, fresh out of surgery, with a cane….I’d look like a car wreck victim. lol

This time, I went. Again, the school went through a couple of remodeling stages, adding a second floor over the old gym which converted into a stage/chapel area and a new gym was built as an attachment to the building. I’d be lost if it weren’t for a few of the staff who started to help me, but a kind parent insisted on guiding me to each class. I did not feel that “self-pity” at all. I was kind of laughing over it, maybe because I was sure most parents didn’t know where all the classrooms were, either. I wasn’t alone.

So, yes, I do see how much I grew, accepting help, getting around with a cane, and even talking about the RP without wanting to cry. It was a fact of life. It was my life. It may not be normal, but the “new normal” was my “normal”. Yes, I am still shy, self-conscious, but I feel that my self-confidence is so much better than it was 25 years ago.

Pride and Prejudice.

My pride, my narrow-minded mindedness and vanity and other’s perceptions of blindness...

Be open. Be accepting. We are all different. If we like ourselves, then that is all that matters.

P.S. Update on guide dog school: I just have to finish my video demo of my O&M skills and then it's wait for them to match a dog to my life style, how active I am, how often I go to places, how I travel, etc. A guide dog doesn't just get given to you just because he or she is trained for it. For example, I do a LOT of walking. I would need a dog that likes to do a LOT of walking. Make sense? I don't do a lot of long road trips, but I may do weekly four hour shopping trips in stores. A dog would be chosen for what I do and how active I am.


At Sat Sep 17, 07:49:00 PM , Blogger Labelosophy said...

This story is so descriptive and thought-provoking. It shows the commonly shared progression of dealing with depression and emotions surroundign a disability. I also like to blog about my own disability experiences ) .

At Sat Sep 17, 08:53:00 PM , Anonymous Marl's Menagerie said...

Amen. Wonderful courage. Praise for your stamina.

I am legally blind and hearing impaired since birth. I have optic and auditory nerve damage. Nice to meet another deaf-blind person (if partially). You are not alone. I'm married with 2 sons who have good vision and hearing. My husband is barely legally blind.

I used to let people know I couldn't see well but hid my hearing aids at first under my long hair. Got used to them and thankful they help too. Hope to see your dog posts.

At Sun Sep 18, 09:40:00 PM , Blogger Becky said...

Hi Shari! Glad to see you posting again!

Those times when folks assist you? You may not realize it, but it's a blessing to serve others in that way. It keeps folks mindful of needs around them, and from becoming too self-absorbed. it's good for folks to be thinking of other people's needs and doing whatever one can to help them. In the church settings I've been in during my lifetime, most folks are happy to be able to help in such ways.

Can't wait to hear more about your dog!

At Mon Sep 19, 07:16:00 AM , Blogger Beth said...

Such a journey you've had - and you've demonstrated such courage & determination.
Excellent post title!

At Fri Oct 21, 08:09:00 PM , Anonymous Low Vision Products said...

I really appreciate the courage and determination you had. Such a nice story to read and ponder on. Awesome.. awesome.. awesome.. post.


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