Saturday, November 29, 2008

Long Time No See

Hello, everyone. It’s been a while so I thought I’d post something so you know I’m still around. :) I hope everyone (in the US) had a great Thanksgiving.

Last week I had my 3-month mapping (the personalized adjustments made to the CI-cochlear implant-that helps me to hear in all kinds of situations).

The first thing the audi (audiologist) did was put me in jail, that is, the sound booth. I am familiar with the layout of the room now after three visits. It is dark in there and for us Usher folk, it takes time to adjust to the darkness. I have to take a step into the room and walk over to the chair. The first time I went in there, I found the arm of the chair but almost found myslf on the floor because I thought the chair was turned to me when it was turned at a 90 degree angle, not 45 degreej angle. Once I sat down, I faced a huge speaker and to the right of me, is a window to another darkened room where the audi does the testing. I can see her outline in the tinted window.

She told me to turn off my HA. So I just took it out and cradled it in my right hand.

One word tests were awful. I may say words that rhyme with them, the beginning, middle, or ending sounds of the word, like shoe for shoot or bake for make. I scored 36%, up from 26% at the 1-month testing.

Sentence test: I scored 87%, up from 79%. And with my HA and CI, I got 93%.

Then the audi made it challenging. I had to be tested with noise in the background, like voices in a crowded restaurant. I scored 40 something percent. I was also tested with sentences with me telling her what the last word of a sentence was. That can be hard because most of the sentences started with “They discussed the ….,” “They were talking about the …..,” and “She was considering the …..” Augh. Those were hard because with sentences, I could fill in the blanks with the context of the sentence. When it’s vague like that, there’s no context.

Here are the test scores of my speech perception and what some of the abbreviations mean.

HINT=hearing in noise test
CNC=consonant-vowel nucleus-consonant words (one word tests)
SPIN=speech in noise (various tests with static or people talking in background).

(You can click the grapic to bigify if you want.)

The CI gives me more hearing, environmental sounds and conversational, but I still do best one-on-one for optimal results. I am still deaf. I still struggle in crowds. I am still shy and awkward. I still worry about saying something stupid. It doesn’t change my personality (i.e. life of the party) or anythinhg. I am still me, new and improved hearing-wise, but still me.

The other day, Flare and I talked about her choir class. She’s a soprano (she can get to the high notes without cracking her voice). She’s a really good singer. We were looking a hymnal and she was telling me about the rows of musical notes. I am musically illiterate; I cannot read music. There may be three different notes for the same syllable/word of the song. I had no idea what they meant. I was never taught about those notes to that degree. I told her about how I was placed with the altos for Christmas services in high school. The music teacher never heard my voice. He just placed me with the altos. Flare just shook her head at me because her teacher separates the altos and sopranos and whatnot for each student by their singing voice. My music teacher never heard me sing. I never did. I just lip-synced it. I had no musical talent and I grew self-conscious about it when I got a lot of stares and people turning to look at me because I sang terribly. When I attended high school, it was on a volunteer basis to be a part of the Christmas service. It meant a great deal to my mom for me to be in it and I only joined to make her happy. I was not an asset to the services at all. Today, some twenty years later, that same high school changed some things. It was now a requirement to be in the Christmas service in your freshman year. It was part of the curriculum. In other words, it was part of Flare’s grade in choir class.

Last Wednesday, Flare left to spend the Thanksgiving weekend with her dad. That night we, Angel and I, needed to get to church. The taxi came on time to pick us up. Angel was part of a choir that included 3rd-8th grade volunteers. They were sometimes accompanied by the adult choir. I was not able to hand my Zoomlink (FM system) to the pastor, which I only use on the HA until I can get the necessary parts for the CI (the receiver). Because this service was special for the holiday, it was not the same as the regular services. I got confused at times, sitting in church by myself without Flare’s help, since Angel was sitting with her group.

After the service, the pastor wanted to make sure I was doing okay. I told him I was. He said he saw me come in, but I didn’t see him. (Sometimes I get there late and he is in another room, getting his robe on before the service. He wanted to make sure I was understanding the service since I didn't give him my Zoomlink. I told him I was fine.

Then Angel and I waited. And waited. And. Waited...for the taxi to pick us up. After about 25 minutes, I called the taxi (after asking-well, really, Angel did the asking-someone where the phone was). The dispatcher on the phone said, “The taxi should be there soon. Sorry about that,” after I inquired if there was a taxi coming because it was almost a half hour late and if there was a mix-up. I realize that the taxi has a lot of other people to pick up, but still, I requested taxi services hours earlier. It should have been on record.

One of the many drawbacks to giving up driving (for my safety as well as everyone else’s) is the WAITING. I can’t get in the car and go whenever I want to. I gotta WAIT.

Some church members who saw us waiting offered us a ride home. There must have been four or five different offers. I felt so humbled. I said that a taxi was supposed to be on its way, that it was late, and I didn’t know if the taxi would charge me anyway if the driver came to pick us up and we weren't there. I was tempted, though, to take up the offer.

Finally, after being 40 minutes late, the taxi came. Angel was antsy. She wasn’t happy that I turned down the offers. She was whining about wanting to be home. That really made me frustrated even more, that I couldn't fix that.

When I got home, I felt so frustrated and shed angry tears. I let myself have a little pity party, frustrated that I had to DEPEND on others for transportation, then I had to square my shoulders and move on. Some argue that it’s not about losing “independence”, but about “inconvenience.” I can’t help but feel that it’s both of these. Getting around still a major part of life.

To snap out of it, I had to count my blessings and look at the things I DO have and be thankful for them. One of them, obviously, is the CI.

Now that I have a bionic ear, it’s given me some of my life back. I am hearing things I never knew made a sound; it brought back sounds I no longer could hear; I can hear sounds from a farther distance.

Now, how about a bionic eye? :)

Labels: , , ,


At Sat Nov 29, 03:42:00 PM , Anonymous Kila said...

Looks like we were blogging at the same time this afternoon!

I understand your frustration with having to wait around for a taxi--I used the city buses and taxis to get around during my single years. Couldn't afford a vehicle then.

Soon your daughters can do the driving for you! Yikes!

It's OK to be frustrated and angry and cry sometimes.

Congrats on your hearing progress.

At Sat Nov 29, 09:10:00 PM , Blogger Laura's medical journey said...

glad to know your mapping went well!

i hate the waiting too! so impatient i am!

i guess it would be good for poor signted people to have a bionic eye! Maybe thats the next thing on their list eh! :)


At Sat Nov 29, 11:29:00 PM , Blogger Jennifer Bruno Conde said...

Hi Shari,

When Amanda, Gonzálo, Joseph and I were waiting for our Advanced Bionics tour to begin recently, there was a poster on the wall. Upon closer look it turns out that it was for some kind of ocular implant that is being developed. I don't know any more about it and don't know if it would help Usher Syndrome folks but found it quite interesting.

I know what you mean about being frustrated with lack of independence. Amanda's 21 year-old brother Joseph has Duchenne Muscular Dystrophy. He has to have his dad do everything for him. He can't even scratch his own nose if it itches.

Amanda has Moebius Syndrom, which caused her deafness and multiple birth defects. She was born at 29 weeks at 1 lb 10 oz and almost didn't make it.

Counting blessings can be difficult, but you're right. It's the only thing that will help put things in perspective.

Let's hope the bionic eye pans out!

Jennifer :-)

At Mon Dec 01, 06:46:00 AM , Blogger Amrita said...

to hear your test went well.

I hate depending on others for transport, wish i had a bionic eye, then i could drive too.

Many times i can 't get to places as there is no one to ake me and the public transport is either unreliable or unsafe.

At Mon Dec 01, 08:23:00 AM , Blogger Breazy said...

even though it is hard it sounds like you are making improvements with each testing so that is something to smile about.

As far as shedding angry tears, I believe that we all should shed tears from time to time. To me it is like sweeping out the old so that the new can come on in.

Have a great week! HUGS!

At Mon Dec 01, 10:02:00 AM , Blogger Becky said...

Having made the taxi arrangements earlier, there wasn't an excuse for them to be that late. I'd have been frustrated, too.

Glad to hear your scores are improving on the hearing tests! That's great news!

At Mon Dec 01, 06:37:00 PM , Blogger Shari said...

Kila-I'm counting down the days till she can drive!! LOL.

When you have your own car and the freedom to come and go when you want or need to is not an option anymore, it's so inconvenient. Sigh.

Laura-Thanks for stopping by. :) They are working on retinal implants so who knows...:) The eye is so much more complex, but they are working on several things, including gene therapy. That one seems promising, though it's a lot of work to see what each genetic mutation of RP needs what.

Hi Jennifer, yes, they are working on retinal implants, gene theraphy, encapsulated thingies, etc. I hope that there's something that can be done for Duchenne MD and Moebius Syndrome. I think Amanda's doing great. :)

Amrita-I guess we both have to be thankful we can walk, talk, and do most things, except hear and see well. I am hearing much better, but I still feel "deaf." :) Do you use the white cane for the visually impaired?

Breazy-I am hearing things more than I ever remember doing, especially at a distance. The other day, Hubby fell asleep watching TV. He was LOUD. I look at the girls and say, "Good thing I take out my HA and CI and I am blissfully sleeping through that." LOL. Angel says, "Mom, I can hear Daddy snoring from my room!!" LOL.

You're right, tears can cleanse our soul and that release can be what we need to be strong again.

Becky-I know. I thought so, too. A 4:00 p.m. call for pick up at 6:10 and 7:50 was enough notice. Oh, well. That's water under the bridge now.

In February, I have my 6 month map. I'm sure I'll be re-tested again to see my progress. :)

At Tue Dec 02, 10:43:00 AM , Blogger Amrita said...

Hi Shari,
I am myopic and very sensitive to light, color blind partially. I don 't havr to use a white cane, I can see quite well, its just distance objects and letters.I can see in the dark too.

At Wed Dec 03, 06:10:00 AM , Blogger NESSA said...

I can understand and sympathize with your frustration. I know I would have a very hard time giving up my car.

At Wed Dec 03, 05:27:00 PM , Blogger Donetta said...

Hello, I have enjoyed meeting you through your post. How very challenging life must be for you along your path. I do not know about the two types of Ushers. I need to study more. Welcome to my blog. If you do not mind I would like to put a link in to your blog on my side bar. Let me know if it is a problem and I will remove it.


Post a Comment

Subscribe to Post Comments [Atom]

<< Home