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.

Barnard College

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???

Legally Deaf 2

My previous post about my "identity crisis" (not knowing how to label myself as HOH-hard or hearing or deaf) prompted me to explore more about when a person can say they are hard-of-hearing or deaf. (It can be a personal preference how they label themselves, too.) I caught it in Wikipedia's Deaf Culture page.

I googled a bit and found some information about a 90 decibel (dB) loss of hearing is considered deaf (profoundly deaf). Some sites even say that "legally deaf" isn't really a term at all.

I even emailed my local audiologist and she confirmed that 90 dB+ is considered technically deaf. She also said that people who have mild hearing loss might call themselves "deaf" and people who are deaf may call themselves "HOH." Again, personal preference.

I found a good website that explained how to read an audiogram. (I did notice some inconsistencies in different websites about the cut off between mild, moderate, severe, and profound losses. When I googled "how to read an audiogram," I got a lot of hits.) As you know, I am not an audiologist, I am just play one on TV. Okay, I'm just sharing information I found.

This is a blank audiogram:

Hearing loss levels:


Normal = >20

Moderate = 40-69 (or 41-70)

Severe = 70-94 (or 71-95)

Profound = 95+ (or 96+)

Some basics about the audiogram:

-It is a graph and measures loudness in dBs.

-The top of the audiogram is "quiet" and the bottom is "loud". -Frequency numbers are the pitch. A small number is a low sound and a big number is a high sound.

-Speech is comprised of many different sounds and can drawn on the lines between 10dB and 60dB (the "speech banana", where certain speech sounds can be heard in quiet (10 dB) or louder (60 dB) areas. Below is an example of a profoundly deaf person's audiogram. This is my audiogram dated January 29, 2008:

The CNT means could not test. I wasn't able to hear any speech at all in the left ear. (You can click the picture below to "bigify.")

The "VT" in the graph is the bone conduction or vibrotactile response. To me, it's more vibration than sound. I used to hear a kind of an echo from the sound tests when the audie would put the headphone behind my ear.)

The X is my left ear (the one the CI was implanted in) and the O is for the right ear. (As for the greater than and less than symbols for the VT responses, one symbol stands for the left and right ear.)

I guess I can say that because I am mostly in the 90 dB+ area, I'm deaf, even though I can hear some sounds.

The graph below shows the sounds that can be heard at certain decibels. Without my hearing aid in my right ear, I would not hear anything in the 0-90 range. I do "feel" the dog bark, but it's not a true sound. Same thing with the phone. I would have to be right next to the phone or the dog in order to "feel" it, though. With my hearing aid on in the right ear, I can hear the dog bark, phone ring, alarm clock, some birds, and music. I may not get everything in my "speech banana" to maintain a conversation without repeats.

Okay, class dismissed. ;)

HUGS

CapTel

I first heard of CapTel from my DVR counselor back in October 2004. It was my first real semester I went back to school and a Support Service staffer at the tech college thought it was a good idea for me to sign up for VR services.

CapTel is a captioned telephone. The caller can dial the number of the person he wants to call and hear his or her voice as well as read the caption at the same time, though it's delayed (much like on TV-the caption is behind a few seconds).



There is also other feature that people who have vision impairment along with hearing loss can use: CapTel USB. This connects to the computer and the captions are displayed in written text on the computer monitor much like ZoomText (a computer software that magnifies text and enables one to change background colors and font).

When I went through the paperwork with my vocational rehab counselor, she mentioned the CapTel. I had no idea what it was. When I went home that night, I googled it. I navigated the website and asked a question. I was sent a packet about CapTel and its features. There was an order form included. I paged through it and put it away.

A few months later, the phone rang. Hubby answered it and gave it to me. "For you." I frown at him. I don't really get a lot of callers. They'd rather talk to Hubby unless they have a lot of patience. The woman on the other end was talking about CapTel. Me, excited I actually got some words from a stranger, "CapTel?" She went on about the information that was sent to me several weeks ago.

"Oh. I don't hear that well."

Something in her voice told me that she knew I didn't hear that well. It took a few delayed "blonde" moments before it sunk in that she was a CapTel rep inquiring about my interest in CapTel and whether I was going to buy a phone.

I told her I wasn't sure what I was going to do. I wanted to look at it some more. It bothered me that there was a third party involved, transcribing the captions for the phone.

I still have that packet in my filing cabinet collecting dust.

Why? Well, as I mentioned, it bothered me that I would have a third party "listening in." Someone has to transcribe the captions, much like the TTY/TDD (teletypewriter/telephone device for the d/Deaf). I have a TTY, though I only use it to make appointments. I don't really want to use it for personal calls, unless I knew that the person I want to call has a TTY, too. For me, I reasoned, I didn't have much use for a CapTel. I really don't go around calling people and when I do, I know them (my mom, family members, and some friends who are patient). I don't always do well on the phone with male voices, even Hubby's.



Now, there's something new in the proverbal town of the HOH and the D/deaf and it's free: It's called Web CapTel. Hamilton Relay (to see if it services in your state) or Sprint WebCapTel®. The captions will display on the computer screen.

But, as we all know, technology continues to evolve. I was told that voice recognition may be the next step, making transcribers/relay operators obsolete (maybe). I was also told that the Captioned Services do not transcribe the captions, but acutally repeat what the person on the other end says into a computer with voice recognition software that is used to send captioning to the CapTel.

Digital CapTel phones are coming out next year and voice-recognition will be used, if the bugs can be ironed out by then.

This appeals to me because there would not be a third party involved. I guess that always bugged me, even when I used the relay system to make calls with my TTY. I kept it impersonal. I realize that the relay operators/transcribers have a confidentiality and privacy rule in place. It just makes me feel better knowing I am talking to one person.

Another feature of the phone is the large numbers for dialing. At first, four years ago, it was kind of a personal insult to me (only in my mind) that the numbers had to be so LARGE. I didn't need large print, thank you. That was my attitude then. Though I still don't need it, I may in the future and I can't always be "stubborn." Why can't there be a smaller numerical keyboard? (I'm just sayin'). Or is this more marketed toward the aging population who have vision problems due to age. along with hearing loss? I would think that a lot of people with hearing loss may be using this phone do not have visual issues. I wonder how they feel with such a large numerical keyboard?

The CapTel phone is great for those who have a good speaking voice. I have a clear voice. My voice can pass for a hearing person, though I think, as my hearing continues to decline, it takes on a different tone.

If you know something more that I haven't mentioned or if I am wrong about something, please let me know.

This post is dedicated to two Usherites who inquired if I knew about CapTel. Thanks for the idea for a post on this blog. The timing couldn't have been more perfect. :)

2007 Recap

2007

Reading the paper the other day, they always recap the top stories of the year. Wildfire in California, Bridge collapse in Minneapolis, Virginia Tech, and on and on.

I thought I would go filter through the blog and find what I thought were my "best stories" of the year. Some were pretty recent (in December) so I skipped those. If you don't have time to read it all or if you remember some of these posts, that's fine, skip them. You won't hurt my feelings. :)

Twinkle Twinkle Little Star This is about how I remember seeing stars when I was younger and how I miss seeing stars.

The Nothing -Growing up and having RP slowly eat away my vision.

How Do You Do? Shaking hands is polite, but what if you didn't see the extended hand?

Adventure at the Lake A funny day at the lake.

Invisible Disability Don't judge people.

Sign Language How signs can be different.

Artifical Vision The research that is going on to find a cure for eye diseases.

A Day in My Life A typical day in my life and what I do or avoid or look out for.

You Just Do How do I deal with Usher syndrome?

Talk to Me My audiogram (recording of what my hearing is at) and what I can hear.

Service Dogs and At Your Service This is where I talk about guide dogs for the blind, deafblind and some tips when meeting a guide dog team.

Thanks for stopping by. XOXO

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.)

Some Bonuses about Hearing Loss

Sometimes I am happy that I am hearing impaired.

When my kids were babies, they'd cry and cry and nothing would calm them down. I would pace the floors or rock them and hum/sing softly to them (badly off-key, but babies don't care, right?). All that crying would really do me in and I would blissfully turn my hearing aids off. I couldn't hear the crying any more. That calmed me down and my fussing baby would eventually calm down, too.

Now it's the screaming matches my kids have. I really hate it when they fight like that. I asked my mom if we (my siblings and I) were like that. She says that we were. Now it's my turn to go through all these fights. I would step in and try to referee the situation. Screaming doesn't solve anything. Talk it out. I do turn my hearing aids off during some of their fights.

Whenever I hear an annoying noise, I am happy to turn my hearing aids off. The other day a neighbor was using a chainsaw or something while I was trying to eat my lunch on the deck. I was able to eat in blissful silence just by turning my hearing aids off.

So there are a few perks.