Wednesday, October 31, 2007

Power from Within



How many times have you tried to stop a sneeze? Sometimes just putting some pressure on the area between your nose and upper lip can stop a sneeze.

I have, on occasion, tried NOT to sneeze because I didn't want to call attention to myself or worse, have the sneeze go away in mid-sneeze. Just the mental image of your face in mid-sneeze is a wee bit embarrassing. Good thing a mirror isn't everywhere.

Sneezes have been clocked at about 100 mph!!

Makes me want to think twice about holding back that sneeze. I just might blow my brains out.

Friday, October 26, 2007

More Thoughts

I wanted to add a few more things from the last post.

They do offer support for families, too. I am pretty much the only one in the family who knows signs. (My sister, who has US Type II, is taking an ASL class right now. She wants to communicate better with me. That's really sweet of her, but I hope she knows how beneficial it will be for her, too.)

If tactile signing was an option, they would have to learn it, too. We are so oral, it wouldn't be second nature to sign. That's what makes it so hard to get into that. It's easier to put off things. I realize the importance of preparing myself, and there are many like me who wait for whatever reason. Also, most US Type IIs were mainstreamed right away. So they didn't learn signs, either. If it (the vision) had been a part of my life as I was growing up, things may have been different. Maybe I would have been more involved with Deaf culture, thus eliminating the sign language issue. It's so much easier for everyone to just repeat what they say (even if they do get frustrated) than it is to learn signs.

My oldest daughter does know the manual alphabet and very few signs, but she does help me "fill in the blanks" when I simply don't understand something.

The Milwaukee thing, I believe, is only supposed to be one week deal for mobility training. I haven't contacted my voc rehab about it lately, but it has been weighing on my mind for the past year. I have no idea when it's going to happen. I hope that the center can be flexible and maybe just come to me instead of me having to go there. Some people can get mobility training a few hours a week for a span of several months instead of a crash marathon in one week.

I am thinking of the future. I would not want to become illiterate. I love reading. If my eyes do get to the point that it's really bad, I would want to read Braille. It might slow me down a lot until I can be fluent, but that's better than nothing. The technology that's out there is sooooo expensive. CCTVs. Braille displays that connect to the computer, etc. I would like to continue blogging and reading other blogs. Some Braille displays make it hard to access the Internet.

I could take Braille courses via correspondence and email. And at my own pace. I do have options. I know I really don't want to pack up and leave for months. If I have to learn a little here and there, fine.

As far as "coming out", I have always had an issue with people staring at me. When I was in high school, I didn't play sports. All I could think about was all those people sitting in the bleachers, watching. I would get so nervous just thinking about that I would do something stupid. Stage fright? Maybe. (That tells you a lot about my self-esteem. Some of it has to do with being the "baby" of the family, being picked on as it is usually done in large families. I didn't know how to speak up for myself or defend myself. I always felt like I was being judged and criticized and it carried into other aspects of my life.)

I would not like people staring at me when I have to tap "Moses" ("Red Sea" effect that is created when people move out of the way when they see the white cane). But one Usher person pointed out that people would be staring at you anyway if you walk into a display in the grocery store aisle and say, "I'm sorry" or "Excuse me" when no one's there.

Labels: , , ,

Thursday, October 25, 2007

My Skeleton

My brother, sister, and I were sent to a school thirty minutes from home. We had daily auditory lessons. The oralist mentality was strong in the 1960s. The audiologist told my parents NOT to learn sign language. “Make them talk.” If we learned signs, it would make us “lazy” and not talk. My brother and sister were mainstreamed into the local school in the first and second grades. I remained in the self-contained classroom with other deaf kids. (Most of these kids were deafened because their mothers had German measles. The vaccine came out in the late 1960s.)

I had the advantage of signing at school. (We were encouraged to both talk and sign.) But when I was at home, it was a total oral environment. I was, and still am. culturally hearing.

Some of the deaf kids singled me out because I had some hearing. I wasn’t “d/Deaf” enough. (I wasn't immersed in the Deaf culture and I also had some hearing.) I wasn’t mainstreamed until I was in 8th grade. What a wake-up call!! I had to study to keep up with my peers. I was on my own. No interpreters. No teachers who knew sign language. It was a total oral environment. I struggled with my identity. I wasn’t d/Deaf enough, but I wasn’t “hearing” enough, either. Where did I fit in?

My self-esteem wasn’t very strong. I felt like I was constantly being criticized. I was different. I was sooo focused on that. I felt like everyone knew I was “different”.

After graduating high school, I had a hard time finding work. Who would hire a hard-of-hearing (HOH) person with no experience? I was honest and told potential employers that I was HOH. I didn’t have to hide my disability. I was coming to terms with it.

I remember when I was working at a factory, a new hire was assigned to work with me. He was told by other well-meaning co-workers that I was HOH and that he needed to face me as he talked to me. We found out that we lived in the same town (the factory is a 35-40 minute commute). We talked about where we went to school. We found out that we attended the same high school. He was a grade behind me. He exclaimed, “I knew you looked familiar. I didn’t know you had a hearing problem.” That made me realize how focused I was on my hearing loss. That I felt like everyone knew I was HOH. I was a very insecure person in high school. I wasn’t “popular” and I just felt like I didn’t fit in. I gave my parents a hard time because I wanted to go back to the other school with my old school friends. I resented being mainstreamed like that.

Just when I was already coming to terms with my hearing loss, I had another disability to deal with-vision loss. I was already in my late 20s, noticing that I didn’t see so well in the dark anymore. My peripheral vision was diminishing. I had a lot of gaps in my peripheral vision that made it so hard to get used to the fact that it was going. Imagine horse’s blinders next to your eyes, but poke some holes in it. You can still still see something and sense some movement out of the corners of your eyes. They call it "islands of vision" or holes in your vision.

I have yet to come to terms with my vision loss. I feel a myriad of emotions-anger, frustration, acceptance, depression….I am continuously going up and down. I can never get through one step of the grieving process to the next. Every time I notice that my vision is getting worse, I start the grieving process all over again. I am pretty much not denying my condition anymore. It’s deteriorated to the point that I know it’s there. I can’t ignore it anymore or pretend that it’s not there. I don’t want pity. I want compassion. I want understanding.

I should prepare myself by learning Braille, getting mobility training (white cane), learn tactile sign language, computer-enchanced technology, and independent living (cooking, housework, grocery shopping, labeling food, laundry). Support from family is soooo important. I feel like they expect me to make it easy for them, not the other way around.

Some people with Usher Syndrome spend months (six months, nine months, a year-depends on how much you need to learn to be independent) at Helen Keller National Center. This is a great opportunity for people who are deafblind-even if they have a little hearing and sight left. For me, I can't even think about leaving my family for six months to prepare myself for independent living. Some do. They know they are doing it so that they don't end up relying on their family-they can be independent. This is something I have to think about. There is a center in Milwaukee that does some of these things, but I still would have to leave my family for a certain amount of time and that sucks. I don't know what I am going to do. This is where "support from family" comes in. Do I have it?

I cannot comprehend leaving my family for a long time. The best I can do is work out a plan of some sort. Maybe one week of O & M training here. Doing other things at my own pace.

I need to change my mentality. Coming out of the proverbial closet is not easy. I don’t care if people know I am HOH. I lived with it my whole life. I like to wear my hair up in a pony tail to expose my hearing aids. That way people see it. Some already can tell just by the way I act and talk.

If I had vision loss all my life, maybe it’d be easier. Kids are so resilient that way. You don’t know what you are missing if you never had it or much of it or if you just grew up with it.

I do need to face it; I am not getting any better. I need to prepare myself. I can choose to wait and hope that a cure will be found, or prepare myself anyway to make life easier for me.

(Easier said than done.)

Labels: , , ,

Sunday, October 14, 2007

It's MEME Time

I’ve been tagged by Michelle. This meme is a little different than other memes-I have to write about my writing.

Things about Me and My Writing, MEME

from Glitter Graphics

-I edit what I write too much. I’m always rereading a post and changing something. Sometimes I catch a mistake two days after I post and then I fix it and think, how’d I miss that? Sometimes I just let it go. Oh, well. It’s my blog.

-I can type in the dark.

-I've always had an interest in writing. I loved reading Beverly Clearly books about Ribsy and Henry and Romona. When I was about 11 years old, I tried writing a book about a boy named Rhian and his dog, Biscuit. I never finished it. I don't even remember what I wrote. (I guess that wasn't so original, because there are children's books about a pup named Biscuit. That freaked me out.) I even think I am studying in the wrong field. I should get into writing.

-I am always worried that I might be a little too drastic writing about Usher Syndrome. It’s so much easier to write about hearing loss than it is about the ever-narrowing vision loss. It sucks and I don’t really dress it up, but I can’t make it look like a fairytale, either. It's not. I admit I do have moments of anxiety when I publish something too personal about my condition. Then I get a comment or two and feel like I am reaching out to people after all.

-I can laugh about my mistakes when it comes to misunderstanding, but when it comes to “missing things” and describing it, it’s so personal. Even now, when I am writing this, I feel like I am baring my soul, pouring the pain and frustration the impeding blindness brings. It’s an ugly reminder. I only hope that my “voice” would bring some understanding about retinitis pigmentosa and/or hearing loss. We’re still human, trying to make “do”. Sometimes I think that I probably drive away potential readers because they feel uncomfortable reading about this stuff. You know what I mean? When I used see someone in a wheelchair, I looked away quickly because I didn’t want to be caught with pity in my eyes. Now I just give them a smile. It’s not contagious and they’re making “do”. The way I look at it now is, if potential readers feel uncomfortable, then it’s not my problem.

-I try to be funny sometimes. I can be very silly, mostly wacky or smart-alecky, depending on how you look at it. I don’t care. That’s just the way I am.

Th-th-th-th-that's all folks.

I will tag Beth, Kila, and Lime. If anyone else would like to do the meme, be my guest.

Labels: , ,

Thursday, October 11, 2007

I am Hip

Karma of JewBu Quest has bestowed me with the Rockin' Girl Blogger award. I rock. In other words, I am hip and awesome. ;)

Thank you, Karma. I am honored and humbly accept the award.

There are so many great bloggers out there that deserve this award. (Sorry, guys, it's gender specific.) I can only give out five. (Who makes these rules anyway?) All my readers rock.

I narrowed down the list in no particular order to (and it was not easy, because I would want everyone who doesn't have one to get one):

MrsGrumpy-I Promise Not to Laugh During the Séance


Beth-Blind as a Bat

Amalia-Caring for Bear-

Word Imp-Word Imperfect

I LOVE playing Word Imp's "fictionary" game. You get creative and make up a definition as wacky as you want. It's fun and you get to expand your vocabulary. She starts it with a word and gives her own "definition" of it. Then commenters give their definitions. The next day she edits the post to include the real definition. She also narrows it down to the top three and has everyone vote for their favorite definition. I used to play it all the time, but my creative juices get low some days. Other days I just get "busy", but I still LOVE her blog.

Keep on rockin'!! :)

Labels: ,

Friday, October 05, 2007

Talk to Me

This was my audiogram results last year. You can click on it to get a bigger picture.

To understand how to read an audiogram, click here.

The "rollercoaster track" lines with the "0" is my right ear-the good ear. The ones with the "x" is my left ear. I really don't get much use out of that ear. I feel vibrations in that ear, though.

As you can see, the hearing loss sharply slopes to the right. I hear low sounds better than high sounds, which is typical of those with Usher Syndrome Type II. (This website has a table-you'll have to scroll down a little- showing the differences in hearing loss in each Usher Syndrome Type-Those with US Type II: "Born hard of hearing with a sloping sensorineural loss from mild loss in low frequencies to severe-profound loss in high frequencies"). I want to point out that everyone is different. There are some people with US Type II who are profoundly deaf. Some have cochlear implants that help. It varies.
To get a better understanding of certain sounds that can be heard at various decibels, click here.
Anything below 70 dB is quiet. With my hearing aid, if memory serves me right, I am in the 40 dB range. That's how much a hearing aid can help me.

Some people are amazed at how well I do with the hearing I do have. I speak orally and clearly. I do best in a quiet environment. If someone else is talking in a group, I don't do as well. Anything I hear in the background overpowers any conversation I am making or being made to me.

I wear hearing aids. It's just a tool to amplify sounds. It does not make me a "hearing" person. It doesn't automatically make me hear everything that a person with normal hearing can. I still need repeats. I could be wrong, but I am sure cochlear implants are the same way. It helps you hear better, but it doesn't make you "hearing". When you turn it off, you're still deaf.

As long as I am wearing my hearing aids, I can hear the phone ring. Sometimes I understand the speaker on the phone, sometimes I don't. I can hear dogs barking, birds chirping, kids giggling, paper crinkling, TV or radio, but environmental sounds are easier for me to hear than regular conversation.

I just want to say one thing, and I am sure I speak for everyone with hearing loss, please don't yell when we don't understand you and you have to repeat yourself. Yelling just increases the distortion. At least for me it does. I can only make a few words out here and there over an intercom or answering machine message. If I try to increase the volume, it only makes it more distorted. (I just don't understand why some people can turn on their car radios so loud that the whole street vibrates-do they really "hear' it? It's just noise.) Just speak clearly and paraphrase what you said if you have to. Change a few words if we don't get it the first or second time around. Just because we are the ones with the hearing loss doesn't mean we have to do all the work when it comes to communication. We get frustrated, too. Remember, communication is a two way street.

So next time you visit your grandmother, your elderly father, a relative, friend, or co-worker (even your spouse) who may have a hearing problem, talk with them-patiently. If they need repeats, don't raise your voice at them. They aren't doing it on purpose.

Labels: ,

Wednesday, October 03, 2007

Growing Pains: Letting Go

My kids are growing.

Though I know that Angel is too "old" to sit on my lap, there's a part of me that likes it when she does. Do I baby her? I don't know. Any mother, I think, has the hardest time letting go of her "baby".

When Flare went through all the milestones-first steps, first day of kindergarten, etc, it didn't hit me as hard as it does with Angel. She's my baby. She's the last one. I won't get to experience these moments again.

When Flare was in kindergarten, I was pregnant with Angel. I couldn't pick her up anymore. She couldn't sit on my lap anymore. Then, as the new baby, Angel was constantly in my arms and lap.

Angel doesn't have a younger sibling to compete with my lap. Flare is obviously a big girl now.

Flare would constantly remind me that she couldn't sit on my lap since she was five. Why does Angel get to sit on my lap at seven? She has a good point. Hubby even says that she's getting too old to sit on my lap.

I just have a hard time letting go!! She's my baby. :.(