Wednesday, January 30, 2008

Project: In My Ear

Hubby checked the weather channel to find that there was a predicted winter advisory at 2 p.m. with winds of up to 50 mph and a big drop in temperatures. Should we cancel the appointments? I had three appointments yesterday as part of my cochlear implant (CI) evaluation.

The temperatures were about 40 degrees with conditions of light fog and mist.

When we got to the medical facility, we went straight to the registration desk to verify insurance information and get directions to the radiology department. I was supposed to get a CAT scan. (On a light note: There was no kitty cat staring at me, giving me a “cat scan”)

(Okay, I guess the cat scan joke is gettin' pretty old, huh?)

That was a weird experience. I had to lie down and sit still. I kept my eyes shut. I felt the bed-like thingy vibrate as it moved me into a tunnel. What a thrill. I think I still like the Demon best. (The Demon was my favorite ride at Six Flags Great America. I don’t know if they still have it, though.) After that was done, I cracked a bad joke about meowing.

Next up: The audiologist (audie). Per my list of providers I was to meet, I was scheduled to see a different audie. I didn’t ask what happened. Maybe the other audie was double-booked or had a day off? Whatever, it was a little unnerving to be talking to a medical professional YOUNGER than me. After growing up seeing doctors here and there, they are all older. Now, it’s reversing.

She asked me if I had any questions. I told her I worked with audies all my life. I didn’t really have any questions, but I was curious about the cochlear implants. She wanted to get on to the audiogram testing and stuff. (I tend to rattle on and on. We still had to do all kinds of testing to even see if I qualified for a CI.) So, Hubby found a really interesting magazine and engrossed himself in that. (Poor Hubby, it was a LOOOOONG afternoon for him.)

I raised my hand at all the high and low sounds I could hear. I got a few things with my left ear (the worse ear), mostly low sounds, but not much. She put the headphones behind my ear to see if I was able to pick up anything that way. I felt vibrations most of the time. I did manage to hear a low sound. Then there were a series of what I call “repeat after me” or "Simon says" tests. The audie read off a list of words and I repeat what I thought she said. There were the usual words I was familiar with, such as “airplane”, “railroad”, ”hot dog”, and “cupcake”. I also had to listen to a recording. A male voice!! Ugh. Any person with hearing loss has difficulties with certain voices, mostly deep male voices. I was warned that I would hear the word “ready” before each word. It went like, ready, coat. ready, calf, and so on. I just had to repeat the word after "ready". Other tests involved sentence repeating with the same male voice and at one point, I had to work with sound effects (noises such as wind blowing, voices in the background, etc.) I didn’t bring my left hearing aid with me. I thought about bringing it with me, but it really didn’t do anything for me. I heard some things, but nothing clear. Bad move. I did need to bring it, but the audie did have a spare for me to use.

With the testing all done, we went back to her office. Hubby was sitting in a chair. He was sooo patient. I felt bad; he must have been soooo bored.

The audie told me the results of my testing. I lost more hearing in both ears since my last audiogram testing. What? In the space of sixteen months, there was another decline!! I was slowly going deaf, even in my good ear. She noted that there was a wee bit of improvement during my testing with both hearing aids. That surprised me, because I didn’t think it helped that much at all, even if it was a small amount.

Compare it to the one I posted here. You can see the difference in the amount of hearing loss. This is surprising because most people with Usher syndrome type 2 have, for the most part, stable hearing-it doesn't really decline that much. Then again, my brother and sister don't seem to lose their hearing at the rate I am. I don't know what it is. Everyone's different, I guess.

Anyway, she said that I was a candidate for a CI. She gave me information about the three different brands of CIs: Advanced Bionics (Harmony), Cochlear Americas (Nucleus Freedom), and Med EL. I never heard of Med EL. It must be fairly new. I was given a comparison sheet on all three brands and warranty information and even insurance information (insuring it under home insurance). I got packets on Med El, Advanced Bionics, and Cochlear America. So far, I know I'd want a behind the ear model because I am used to that. I don't like the idea of a body worn model. Decisions, decisions.

Next up: The ENT (ear, nose and throat doctor or otolaryngologist). He talked about the surgery. I had tons of questions. I did ask how many surgeries did he do and he said he couldn’t count them. There were so many. I asked about which CI brands he worked with most and which seemed to be successful. He pretty much worked with them all.

I asked about infections. There were three infections that they are concerend with the most. One was the infection from the product (internal device), the infection from the incision, and meningitis. (I brough that up.) I must have surprised him about how much I knew about CIs. I've done my homework, plus reading about it from other bloggers who chronicle their journeys. LOL.

While the incidence of meningitis is minimal, they like to have patients get the vaccine two weeks before the surgery. There is also some medicine to take before surgery to up the immunity from other infections from the surgery itself. He said from my CAT scan, the anatomy of my ear is normal. The main reason why the CAT scan is done is to see if there is any abnormalties, especially ossification or extosis. (Another light note: It’s now verified that I do NOT have a high concentration of AIR between my ears!!) Some people who have had meningitis have some ossification in their ears and are more likely to have a recurrent bout with meningitis. I did look, shall we say, “blonde” to say that I thought that once you had meningitis, you didn’t get it again. I guess I was thinking that if there was a vaccine for it, then maybe it was a one time deal. Of course, duh, even the flu vaccine and tetanus vaccine don’t make you immune forever.

We left at around 3:50 p.m. (The appointments took 4 hours!! Poor Hubby.) It was the same-misty with a light fog. Maybe the weather changed? Halfway home, people were driving slower. This is a main freeway with 65 mph limit. We slowed down to 45 mph. It was snowing-the icy, wet kind. It was just weird driving into that. Kind of like a curtain-mist and fog to snow. We ended up extending an extra 10 minutes to our trip home. (Just added this last paragraph to those who may be curious about the winter advisory.)

Those of you with CIs: Bring it on. Please comment and tell me which brand of CI(s) you have and how you like it. I will welcome the feedback I get from you.

Other than that, we have to wait and see if insurance will authorize approval for the CI surgery. After that, I will have another office visit to discuss more details about the surgery. I do have concerns about transportation. I don’t expect Hubby to take time off work all the time or to do so much driving for me. I am still working on the decision whether to have the surgery, too. The big factor here is that my hearing seems to be declining. It would be a matter of time before my good ear would be of no use, either. Then I would be totally deaf. Yikes. Baby steps, baby steps…. breathe, breathe....

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Monday, January 21, 2008

I Have a Dream...

World peace.

Disparity between races and disabled people to cease.

Equal rights.

I was going to elaborate and make a good post of this, but I think this says enough.

I just resumed classes again. So my posts are going to be irregular, more so than usual.

Thursday, January 17, 2008

My Sentiments Exactly

Graphic from a Wisconsin paper
I got this from another blog. I just had to post it here.
Go Packers!!

GREEN BAY, Wis. -- It's easy to hate the New York Yankees if you're a Boston Red Sox fan, and vice versa.

The same goes for the Dallas Cowboys and Washington Redskins, Michigan and Ohio State and those originators of the shotgun formation, the Hatfields and McCoys.

But who hates the Green Bay Packers?

Steeped in tradition and often viewed through a prism of sepia-tone nostalgia, the Packers have succeeded against all odds in a tiny and remote market, in a 50-year-old (albeit renovated) stadium with aluminum bench seats, in an era of unfettered free agency and corporate greed.

OK, if you're a Seahawks fan, you're not feeling all warm and fuzzy about Brett Favre and Al Harris right about now.

"We want the ball and we're going to score!" might be old news, but the sting lingers.Really, though, do you hate the Packers?

Not if you know anything about the history of the National Football League. Not if you've seen those grainy images of the 1967 "Ice Bowl" and Bart Starr's fateful quarterback sneak on the frozen tundra of Lambeau Field. Not if you admire the principles on which Vince Lombardi built a dynasty.

Not if you pull for the underdog.

In Wisconsin, there is no other option. You are born into Packerdom here. Your great-grandfather cheered for Curly Lambeau and Don Hutson, your grandpa for Paul Hornung and Willie Wood, your dad for James Lofton and Lynn Dickey. Every kid on your block owns a No. 4 jersey.

What makes the Packers special? Start with the fact that there are 112,015 owners, the vast majority of whom hold one share of stock. Formed in the NFL's primordial mist in 1919, the Packers became a non-profit entity four years later and remain the only publicly owned team among the major professional sports.

The most recent stock sale, in 1998, netted 106,000 new "owners" who paid $200 per share (and sent $24 million straight to the team's bottom line) for certificates that are basically worthless. The stock never pays dividends or appreciates in value. But the emotional investment is priceless. When general manager Ted Thompson signs a free agent, the fans can thump their chests and say, "I helped bring that guy to Green Bay." And it's true.

Of course, Bob Harlan, who has run the Packers for 19 years, first as president and CEO and more recently as chairman of the board, has a stake in the team. He, too, owns exactly one share of stock.

"I paid $25 for my share when I became president," said Harlan, who is retiring after the postseason. "When fans call me, they start out by saying, 'Bob, I'm a fan and a shareholder.' They always point out that they're shareholders. I say, 'Well, I am, too, so let's talk.' "

Did we mention that Harlan answers his own telephone? There is no administrative assistant to run interference, no automated maze to negotiate. You've got a beef with the injured cornerback or the price of tickets, you go straight to the top dog.

The fact that the Packers can even exist in a city of 100,000 is a minor miracle, due in equal parts to fan loyalty throughout the state and revenue sharing in the NFL. Los Angeles can't support a team but this little frozen outpost can? It's one of the mysteries of the universe.

It helps that not much ever happens in Green Bay, other than what occurs at 1265 Lombardi Ave. Lambeau Field -- notice, no naming rights -- is the city's corporate and social epicenter, its source of civic pride, its very heart and soul.

The nearest NCAA Division I football team is 2 1/2 hours away at the University of Wisconsin-Madison, and Milwaukee is 115 miles to the south, so the Packers are the only game in town.

Their reach extends north into Michigan's Upper Peninsula, south into Chicago Bears turf and west clear to the Dakotas (the team had a 40-year head start on the Minnesota Vikings).

And that doesn't count the fans who have relocated or the ones Harlan likens to the "Notre Dame subway alumni."

"People call me and say, 'I'm a lifelong Packers fan and someday I'd love to see Lambeau Field,' " Harlan said. "They've never even been here."

On game days, the far-flung Cheeseheads converge on Green Bay and fill the Lambeau parking lot hours before kickoff. First-time visitors are blown away by the passion, creativity and dedication of the tailgaters. There's nothing quite like the smell of 10,000 bratwursts sizzling on 1,000 grills and the sight of footballs spiraling through 10-degree air.

The Packers-Seahawks game will mark the 268th consecutive sellout at Lambeau, including playoffs. That's every single game since 1960. The waiting list for season tickets is at 76,800. With an average of 70 fans per year giving up their seats, the guy at the end of the list will have to wait 1,000 years, give or take a few decades, for his name to come up.

Season-ticket holders live in all 50 states and several foreign countries, including Japan. Domo arrigato.

The obsession with the team is such that the 10 p.m. TV newscasts in Milwaukee and Green Bay are dominated by Packers developments. The long snapper has an ingrown toenail? That leads the sports report. The price of beer is going up at Lambeau? That's the top story.

Brett Favre retires? We don't even want to think about that one.

The Packers have won 12 championships, more than any other NFL franchise, and three Super Bowl titles. The team has sent 21 players to the Hall of Fame. Green Bay city streets are named after former players and coaches, including Mike Holmgren.

But it's not about all that.It's about a unique relationship between a professional sports franchise and its fans.

It's about people feeling they're a part of something special, something unique, something good.

The Packers don't need throwback jerseys to evoke their glorious past.

In all the ways that count, it's still 1965 here. And always will be.


Wednesday, January 16, 2008

It's Not Fair

We all have those moments when we feel like screaming, “It’s not fair.” Life isn’t fair. You gotta take the lumps and deal with them.

As a child you try to get your parent to change their mind about something. “It’s not fair!!” Maybe it’s about sibling rivalry.

"No fair. She gets to stay up longer than I do!!” or maybe it’s about sleeping over at Gramma’s house. “She went last time. Isn’t it MY turn? No fair.”

You hear about it in school, in the work place, or any place out in the world. There’s rivalry, “me first”, and then there’s the “privileged”. It’s a part of life. Some people get their way.

When life gives you lemons, make lemonade. Isn’t that what they always say? Life is not fair, you just have to move on. Nothing gets handed to you on a silver plate.

Since my oldest was going to go to high school in the fall, I thought I’d see if she could get school bus service.

I tried this two years ago, but I was told that it was not “hazardous” enough. There weren’t any major highways for the kids to cross on the way to school. They walk eight blocks to school. It’s only a 10 minute walk. That’s not too bad.

The high school is about a 45 minute walk from our house. On top of that, a new church and school is being built on the outskirts of town. The old one will be closed at the end of the school year. My youngest would need transportation to get to the new school.

I called the local school bus. (Lucky for me, I got to talk to women who I could understand most of the time.) I was given another number to call. I describe my dilemma. I am legally blind. I can’t drive my kids to school. How are they going to get there?

The conversation went like this:

Person on phone: Where do you live?

Me: Right in town.
(Most school buses are provided for kids who live in the country.)

P: Do your children have a special need?

Me: No.

P: We can’t help you.

M: Even if the parent has disabilities? Only if the child has a special need? Is that fair?

P: I am sorry. I do understand. You could consider city bus transit or maybe the school can help you?

M: I've already told the school about the situation. Haven't heard anything. Well, thanks for your time.
(I was curt but not overly mean as I hung up the phone. I know it wasn’t her fault. It was just the system.)

City transit? Uh, sorry. Call me judg”mental”, but I don’t like the idea of having my kids wait an hour and a half while transferring on two different bus routes in the morning and afternoon. Too time-consuming. Maybe I am overprotective, too. Maybe I watch too many shows like Law and Order. I don't want them standing at a bus stop at 6 in the morning and getting home at 5:30 p.m.

The school? Like I said, I talked with a few teachers about it. I wanted to see if anyone would be happy to carpool, to pick the girls up for me and take them home from school. I'd be happy to pay for the gas. I haven't heard anything. I just want to take care of it early. Get a head start on it so I don't worry about it.

I'm not looking for a free ride. I am willing to pay for the bussing services if I have to. I don't drive. I don't have a car payment, car insurance costs, car maintenance, or have to fill up my gas tank. That money can go towards transportation.

We need to change something. How many parents with disabilities (any kind-cancer, paraplegic, blind, etc) would like to be able to have school bus service for their kids? What does it take to wake them up? A petition? This is ridiculous. Something has to be done.

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Tuesday, January 15, 2008

Inquiring Minds Want to Know

Glitter Graphics
Which dog will it be? Lab, Goldie, or?
(I know, no Labs or Goldies in this graphic, but it seemed so perfect!!)

My fellow Usherite has started chronicling her first day at a guide dog school. It's so interesting to see what goes on there and how you learn to be a team.

I am so excited for her.

I can't wait to see what kind of dog they have for her. They just know which dog is right for a handler (blind/low vision person) by their needs and personality and where they live.
First you have to give a guiding school personal information, medical records about your eyes, and a video showing the walk around the neighborhood with your cane. Yes, that's another requirement-to know how to use the white cane. (Something I still have to do yet. Yikes. A post for another day. See my old post My Skeleton.) Anyway, after the school evaluates the needs of a blind/low vision person, they already have a dog in mind for that person. Isn't that neat?

Get this, they will see if the dog can be trained to help her wake up to her alarm or hear one of the kids cry. I thought that it would be too much for a guide dog to do double duty. It needs to rest some of the time. Maybe not.

Go over to Kacie's place and share in her excitement.

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Saturday, January 12, 2008

Game Night

(I am aware that the picture didn't fit the whole frame-I cropped it before uploading it, but it ended up like this. Oh well.)

I picked up a game I thought we could play together. It's called Cranium Cadoo. A child seven and over could play it. I never played the adult version of Cranium so I didn't know what to expect. It was on sale for $7.00. What the heck? More family fun. The last game we tried, Tri Bond, Jr, was a hit. It was fun; it was similar to Blue's Clues with three clues to guess the answer.

We got the game ready. I thought it was pretty cool. You could shape something with clay (it was included) and have a player guess what you molded. Or draw a picture, act it out, or guess an answer. What fun-a bunch of different activities to do within one game.

Until...I had to read the answer with 3D glasses (see graphic above). I put the red cellophane-y glasses to my face and tried to read the "coded" answer on the bottom of the card. I couldn't read it!! I started squinting at it. I got a flash light. I aimed the light at the card. There. I did it. Then when it was my turn again and I had to read through those glasses, alas, I couldn't make out the words. :(

Needless to say, I was saddened by this step in the RP process. Red is just not a background color for me to read through. Or reading 3D concealed notes. As I mentioned before, I can read 12 point font print just fine. I read books, magazines, newspapers, and blogs without problems. Gottta think about the positives-what I can do.

Life is never boring. Always something new. Always something new to adjust to.

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Thursday, January 10, 2008


Glitter Graphics

I have been wanting to change the colors of this template for some time. I tinkered with it. I switched to this template because I liked it better than my old one, but I still wanted the darker background for others with RP (or other vision problems) who may like to read this blog to have contrast. I looked at the other choices I had for templates and didn't like them. So the only option I had was go "behind the scenes" and tinker with the HTML code. The last few days I had the time to do it since Christmas is over the the pressures of school is behind me. I almost completed my makeover a few days ago, but I had a couple of "blemishes" to work through. I enlisted the help of a friend. I overlooked something. It was more that I thought it didn't work. So I went back into the HTML gibberish. This is the result. It isn't exactly what I wanted, but it's close enough.

Some people with RP need a dark background with a white or yellow font to be able to read better. I can still read with a white background with a black font. Some blogs have a dark background and they put a red or blue font in it and I can't read those so I just highlight them. I don't complain.

Some of them (those with RP) need to have the font increased. They get a software called Zoomtext. It can increase the font size and change colors of the font and/or background. Some may also have a CCTV (closed circuit TV). Some can't read a book anymore. They can scan a page of a book on the CCTV and the page appears on the computer in a larger font.

Technology is always there to help the disabled. It can be expensive. For us, we need one for our hearing (i.e., hearing aids, FM system) and our low vision (i.e., canes, CCTV). That can add up.

I may continuously change the formatting of this blog to fit the needs of others. Thank you.

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Wednesday, January 09, 2008

Final Diagnosis

Microsoft clipart of medical symbol

With three out of six kids with hearing loss, my parents were told that it was caused by ABO blood incapability. My father had A positive blood type and my mother had 0 negative.

My two oldest brothers were born “normal”. (Who’s normal? ;) ) When my oldest sister (R) was about three, my mom noticed something wasn’t “right”. By that time, child #4 was born (my third brother, J). My mom took R to a doctor. A diagnosis of mental retardation was made. The doctor said that R should be institutionalized. (This was the early 1960s.) My mom refused to believe it. R was bright-eyed and could tie her own shoes at the age of three. She was “all eyes” (curious, absorbing information).

She took R to different doctors. Finally, a doctor said that she was hard-of-hearing (HOH) and referred her to see an audiologist. The audie (short of audiologist) tested her and fitted her with hearing aids. My brother J was also tested. He, too, was HOH. The audie recommended intensive auditory lessons.

As I mentioned before, my two oldest brothers did not have hearing loss. Perhaps it was similar to the complications of Rh factor, so ABO blood incapability seemed to make sense.

My second sister W (child #5) was born with a high bilirubin count. She was immediately given a blood transfusion and had severe jaundice. If it weren’t for the blood transfusion, she would have had cerebral palsy.

When I was born (yes, I was the “baby”), the doctors were watching for complications. I had jaundice, too. The doctor, my mother said, did something "different" with me compared to what they did with my sister. I “ended up HOH”, too. I think because my sister wasn’t HOH after her blood transfusion, my mother thought that if I had one, maybe I wouldn’t have had hearing loss.
The jaundice had nothing to do with my hearing loss, though I can see why the doctor came to the conclusion. It wasn’t until we were in our twenties that we found out that the etiology of our hearing loss was from Usher syndrome.

I was already fitted with hearing aids when I was 18 months old. I didn’t talk much for an 18 month old. Once I started auditory lessons and started talking, my mother joked that I made up for lost time. I wouldn’t “shut up”.

Fast forward to our twenties…

I remember my oldest sister, R, coming home from college break and saying something about not seeing “right” in the dark. She and I were four and a half years apart. I didn’t really take too much stock in what she said. I promptly forgot about it.

She got married in her mid-twenties. A year after her wedding, she stopped by to tell my parents that she saw an ophthalmologist and he told her she had retinitis pigmentosa (RP). I was not used to seeing her on the verge of tears. She was my big sister, the tough one. She was not one to carry her emotions on her sleeve like that. She was the one who would face/make confrontations and was very outspoken. We had our differences while growing up. I admit I was afraid of her at times; she was so bossy and mean. At the same time, I admired her and looked up to her, too. It seemed like she had the Midas touch with sports and was very competitive. She was a big basketball and shot put/discus star. She excelled at everything. She was a master dart shooter, too.

We get along so much better now, but we don’t live have to live under the same roof, either. ;) (Love ya, sis. ;) )

I didn’t really get the whole story when she stopped by to talk to my parents that day. I do remember hearing her say, “I’m going blind.” Was she exaggerating? There was no family history of Usher syndrome.

I saw my dad kind of shake his head sadly, in shock. My mom didn’t say anything. That’s all I remember about that visit.

A few months later, my brother J was adding more lights to his pick-up truck. He was having a hard time seeing in the dark. He thought adding more lights to the truck would help. R told him to get his eyes checked. He, too, had RP. He was about 25 at the time...

Somehow, seeing that both R and J had RP with hearing loss, I wondered if I had it, too. I didn’t notice anything wrong with my eyes or anything at the time. I was paranoid. I thought that maybe there was a connection to the RP and hearing loss. (Imagine my surprise when there really was a connection.) After all, my hearing brothers and sister did not have RP. My hearing sister W worried about getting RP and had her eyes checked when she was in her late twenties. I told her that she wouldn't have it because she wasn't born HOH. That was the classic symptom of Usher syndrome Type II.

So I got my eyes checked. I was about 22. The eye doc didn’t see anything wrong. He gave me a field test and I was fine. I thought I was off the hook. Maybe I didn’t have to worry about it.

Over the next few years, I thought my eyes were playing tricks on me. (Now you see it, now you don’t.) It’s easy to tell yourself to look where you are going.

I thought it was a “sympathy” kind of thing…that it was all in my mind because they had it.

I got married when I was 24. I remember my brother J telling me about Usher Syndrome Type II. He gave me some papers on it. I read it disconnectedly. I was curious about it. I didn’t think I had it because the doctor said he didn’t find anything wrong. It was probably in the early stages so it wasn’t noticeable.

I started walking into things. I thought I misjudged the distance because I saw it before I walked into it, especially in the dark.

I finally went to get another opinion. Was it all in my head?

The doctor told me that I did indeed have RP. I guess I was not surprised, but I so wanted him to say it wasn't. I was about 28 at that time; I had a toddler and a full-time job. (This was around the time the profile picture in the sidebar was taken.)

It’s so easy to be in denial. Ignore the signs. Pretend it’s all in my head. It was safer than facing it.

I am not so much in denial anymore. It’s there, an ugly reminder every time I “miss” something.

Most of the time, I laugh about it, but sometimes I cry inside. It’s frustrating. I hold on to the hope that most people with RP retain central vision for a long time.

In the meantime, I just go day-to-day. That's all you can do.

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Sunday, January 06, 2008

2007 Recap


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

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Thursday, January 03, 2008

My Maggie

Glitter Graphics

This is my attempt to review a book called My Maggie, written by Rich King, a sportscaster in the Chicago area.

I wasn’t sure what to expect when I read this book. I heard about it from another Usherite (person who has Usher syndrome). She exclaimed that she wouldn’t be surprised if the book were made into a movie. That intrigued me. I am always interested when a book has a character, fiction or non-fiction, with Usher syndrome.

The book was already checked out of the library. Get this:. There was a waiting list!! I was number three. Was this book in demand or what? It just came out a few months ago. After another month, I had to be put back on the waiting list. Something happened and I was dropped. Now, another month or so later of waiting, I caved in. I bought the book. There. No more waiting. And I am sooo glad I did.

I LOVE, LOVE this book!! From the first word to the last. As many readers say. I didn't want to put the book down till I was finished!!

It was about the author’s wife, Maggie. (I thought to myself that I definitely wanted to read this book to get a spousal perspective!!) It was more or less a tribute to Maggie's life. I'll try not to spoil it for anyone, so I will try not to give away too much information.

How often can someone say they married their soulmate? The almost perfect person? Look at the divorce rate. Not many, I’ll bet.

Maggie dealt with hearing loss and later, impeding blindness. Not only that, but had three different kinds of cancer. She switched careers in the prime of her life, to do what she loved most-helping people.

They shared a love so deep, yet gave each other plenty of breathing room to do their own “thing”. Hers was advocacy for the disabled.

I laughed, I cried, I related. I could empathize with so much of what Maggie went through with Usher syndrome. I also loved getting a view, an angle of a person who is close to a person with Usher syndrome. I felt the concerns that he had to go through, but in the end, giving her the independence she wanted, needed. To do daily everyday things, such as walking around with a cane-in a strange city-on her own. That is selfless. I could see a lot of partners hold back a person for fear of their safety. That took a lot of restraint.

I admire Maggie’s strength. I thank Rich for sharing her life with us.

Without further ado, I give it ***** rating. :) Maybe I’m prejudiced because I know Usher syndrome personally, but I guarantee that you’ll be moved by Maggie’s strong spirit. I think that my friend, who recommended this book, is right. This book has Lifetime movie potential written all over it.

In the book, a link was given to see more about My Maggie.


Wednesday, January 02, 2008

Starting the New Year with a ROAR!!

I wanted to start the new year with a bang, or rather, a ROAR!!

A few days ago, Laura awarded me with the Roar with Powerful Words award. This award is passed to bloggers who make an impact with powerful words. A big impact.

Thank you, Laura. I started this blog as my input, my voice, to educate the world about a rare recessive disorder that affects both hearing and sight. Talk about a double whammy!! It's mind-blowing and devasting. Being born hard-of-hearing, it was such a shock to find out that there is a disease that actually takes away your sight, too. All you can do is move on, find ways to deal with it, and keep adjusting. Always. Every once in a while, the disease eats away more of your vision and you have to adjust. Walk slower. Get brighter lighting. Keep your gaze fixed on an object that was dropped. If you don't, you "lose" sight of it and have to back away to see it again. Life is all about adjustments to changes.

I am a shy person by nature and I thought that blogging would be my way of advocating about Usher syndrome. Who knows what the future would bring? Maybe I'll do more to advocate for Usher syndrome.

I will quote the rule of bestowing the award to other bloggers:

"As part of this honor, I’m to name three things that I believe most important to powerful writing and then pass on the award to five blogs I believe deserve recognition."

Advocacy-I like reading blogs that have a voice, a passion for what means so much to them. It could be something simple, but if it touches my heart, it qualifies as powerful writing. I learned so much from other blogs, other lives that are affected by something they have no control over, yet they go day to day, plugging through. It helps me stay grounded. Sometimes I admit I wallow in my own pity party, but so many people have their own problems. We are all fighting our own fight, whether it's an on-going struggle or just sharing struggles/experiences that have been overcome.

Integrity-I like simple honesty in a blog. The writer has left an imprint of his/her soul in the blog. It's credible and easy to empathize.

Thought-provoking-Blogs that make me think and leave such an impact on me.

I've chosen five blogs that I think deserve the Roar, whether the blog is a quiet purr or a rumbliing roar.

Drum roll, please....

1. Jennifer (A Work in Progress) is an amazing woman. She is deaf and has five children. She attends church regularly and is always on the go. Sometimes I just get exhausted reading about all the things she's been doing. She's chronicled her cochlear implant journey. She kept going when the first one didn't work as well as she had hoped, but she still kept at it, making sense of the new sounds. Then she had the opportunity for a second implant. Her world has opened up again. With this amazing technology, she is able to hear again. It's so inspiring. She is an advocate for cochlear implants.

2. Laurie (Laurie's Dance with Sound) is another person I admire. She also has bilateral cochlear implants. Her world opened up for her as well. She is also a strong advocate for cochlear implants. It's made me think that maybe I should look into the cochlear implant option and see if I could at least regain my hearing through technology. (Of course, it would be great if they could so something like that for our eyes as well...)

3. Eileen (A Life of Triggers) talks about her job as a social worker in a school. I never realized how many children are abused. She's a very strong person who went through a lot growing up and took in her sister's child like her own. Her daughter is bipolar and she talks about her struggles with that, too. I think she's amazing and deserves this award. She's an awesome person.

4. Michelle (Full Soul Ahead) is a mother with a child on the autism spectrum. She is always finding ways to help her daughter cope with things we take for granted. Something small, like a substitute teacher for a day or a sudden noise or movement, would affect her daughter. It's wonderful to see how much she's grown and adjusted. I really didn't know a lot about children on the spectrum. I have learned so much. Thank you, Michelle.

5. A newcomer to the blogosphere...Kacie (See No Evil, Hear No Evil) just made her debut. Why have I chosen her? After all, she just started blogging. Because she was one of the first people I started talking to about coping with Usher syndrome. She helped me so much. I was so depressed about "hanging up the car keys" and giving up more of my independence. I also KNOW that she will have her strength and "roar" shine through right from the start.

Of course, I had a brother and sister with Usher syndrome, but it was sooo wonderful to talk to others about Usher syndrome. She's a strong advocate for Deafblindness. She's an active member of a deafblind association in her state. She inspires me. If you think I am "brave", you have to meet her. I feel like such a wimp next to her. She uses the cane and will now chronicle about her journey with a guide dog. Yes, she's going to journal about her experience-learning to be part of a team, training with a guide dog. Please go over there and welcome her to the blogosphere. She's a wonderful friend. Someday I would love to meet her in person.

So there you have it. Please go and visit them and see why I think they deserve this award.

Happy New Year. God bless.