Author Topic: visible disabilities v. non-visible disabilities  (Read 11816 times)

leapyrtwins

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Re: visible disabilities v. non-visible disabilities
« Reply #15 on: July 17, 2007, 03:25:30 pm »

I looked all over the web for better and nicer symbols, but could only find the lapel pin from ANA.

Maybe we should look into marketing our own symbol and sent it out to docs.  Then each time someone is "officially" diagnosed with an AN, the doc could give them the symbol.  Maybe we could even incorporate your quote " I have a sense of humor and joy".  It could be a button that says something like "I may have a bad ear, but I still have a sense of humor and joy".

Just a thought  :D
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Captain Deb

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Re: visible disabilities v. non-visible disabilities
« Reply #16 on: July 22, 2007, 07:30:39 pm »
I get glared at when I park in that handicapped spot at the Wal-mart or grocery store and hop out of my car and trot into the store.  I want to explain to the glarers that I'm only handicapped when I actually come OUT of the store in major wonkyhead mode.

Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
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Larry

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Re: visible disabilities v. non-visible disabilities
« Reply #17 on: July 22, 2007, 09:33:03 pm »
This is a no win situation unfortunately.

Unless you are the average normal "jo blo" then you are looked at and treated differently. For those of us that don't have a physical disability but fight really hard to act normally, we are considered normal so when we have issues with surrounding noise etc, it does not go down well, especially at work. these days, even in Oz where unemployment levels are the lowest for decades, you still fear for your job if you identify anything unusual.

I am a professional contractor and if I said that i had a brain tumor, how many organisations would employ me - retorical question but the answer is zip. Mind you, I do strategically position myself in an interview to make sure that my good ear is closest to the interviewors.

I never tell anyone at work that i have what i have for fear of the old zaparooneey.

My family is sympathetic to my issues but my youngest daughter told me she thinks I use my condition at times. In context, thats when we might have a family disagreement and my head can't stand yelling so I disappear. Whenever human voices are turned up, my head explodes. My good ear tends to way over compensate for my bad ear. My daughter will always ask me how my day was but because i mask my plight, she never really knows. Some days I will only work a few hours and spend the other time under a tree or something.

perhaps, we shouldn't mask our plight (at home anyway), will that help? who knows. people like Deb, who ssuffer severe brainwrecks are not in a position to mask it although I reckon she does for a great deal of the day. I don't want the sympathy vote, just a better understanding - like you Kathleen.

the solution at wwork is to have a bosss thats had an AN removed.

Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

nannettesea

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Re: visible disabilities v. non-visible disabilities
« Reply #18 on: July 22, 2007, 11:37:58 pm »
Thanks, Kathleen, good topic.  And Phyl, appreciate the book club suggestion.
Nan
1.7cm x 1.4cm x .8cm, right ear
Trans-lab approach
Dr. Jay Rubinstein, U of WA
8/29/05

Joef

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Re: visible disabilities v. non-visible disabilities
« Reply #19 on: July 23, 2007, 11:00:31 am »

the solution at wwork is to have a bosss thats had an AN removed.

Laz

I'm close... mine has his brain removed...  ;)
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

Gennysmom

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Re: visible disabilities v. non-visible disabilities
« Reply #20 on: July 23, 2007, 11:55:31 am »
This subject was discussed in several places in the Symposium....It was good to hear other's frustrations in the "Well you look good/normal".  Just because we look good doesn't mean that our brains aren't scrambled!!!   ;D 

Going to a movie today....I find one of the hardest things about that is to try and get up while the credits are rolling and walk down the isle and turn onto a flight of stairs in the dark with tons of people around me.  I think this is taken for granted by all those "normal" folk out there!   ;D   Wish me luck on not falling over!!!!  Good thing I have a sense of humor about this!
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

Joef

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Re: visible disabilities v. non-visible disabilities
« Reply #21 on: July 23, 2007, 12:49:04 pm »

I've been to 1 movie since my surgery... and walking out was tuff .. I sugguest you wait until most of the crowd leaves...and remember  * dont look down * look up at the exit sign!
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

Denise

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Re: visible disabilities v. non-visible disabilities
« Reply #22 on: July 23, 2007, 01:37:05 pm »
Hi,
I have been going to the movies every other week for about the past year and a half. I have trouble walking into the theatre when the lights are low and i am trying to carry my popcorn and pop. My left hand does not function properly, since my AN,  so trying to carry my stuff and use the handrail is pretty difficult.

I always wait until the lights are up at the end and most of the people have left before I get out of my seat.  I also find the pattern on the carpet makes me dizzy if I look down for too long. 

I do not look very graceful trying to find my seat, but at least I figure I am out there. Right?!

Denise
4+ cm, left side
translab 5/9/2005
CSF leak repair 6/23/2005
platinum weight in left eye 11/9/05
12/7 nerve switch 8/3/06
Univ. of MN Drs. Levine/Haines

Omaschwannoma

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Re: visible disabilities v. non-visible disabilities
« Reply #23 on: July 23, 2007, 03:30:56 pm »
Personally I don't give two hoots what people think about how I look vs how I feel or whether I park in the handicap spot and look mahhhhhvelous!  If perhaps I'm confronted then I'll have words, but so far no one has said "Boo" to me--look at me they do, but I can't handle (literally) thoughts of them in my brain when I'm trying to navigate a parking lot. 

This brings to mind Carlos Mencia and his immitation of "Dee dee dee!"  Great topic and let's not let "their" energy fog up what's already foggy with us!  They don't deserve one molecule of space in our hearts or brains. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Captain Deb

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Re: visible disabilities v. non-visible disabilities
« Reply #24 on: July 23, 2007, 04:25:02 pm »
I do the same thing at the movies as I do on a plane--I wait for everyone to leave and then get up and go.  The same for embarking on the plane--I wait till eveyone boards and I'm the last one on. Joslting and noise gives me the willies.

Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

Static

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Re: visible disabilities v. non-visible disabilities
« Reply #25 on: July 23, 2007, 04:44:43 pm »
Arushi,
That is one of my favorite shows!  When I tell people that I've had brain surgery, they look stunned.  They tell me how great I look and that they can see how well I've overcome it and I just nod and smile.  I've had such a hard time asking my doctor for a handicapped placard for my car and still haven't done it yet.  I'm afraid I'll get run over when I'm by myself and the one time I did tell the doctor about it, he just says make sure you look around really well.  I just let it go after that.  So now I just walk really close to the parked cars and keep my fingers crossed. 
~Karen
3.5cm AN removed 1-21-04
CSF leak repaired 5/04
SSD Right

Gennysmom

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Re: visible disabilities v. non-visible disabilities
« Reply #26 on: July 23, 2007, 06:02:26 pm »
I forgot to tell you all my little story, speaking of visible/non.  I was at my desk plugged into my ipod in one ear, as usual, so I can concentrate and do my job, and someone who works in another department walked up behind me and started talking to me.  Of course I couldn't hear, so my co-worker stood up and waved her hands to get my attention the proper way, and I pulled my earbud out.  So the guy says "You didn't hear a thing I said?", and I pointed to my brand new "deaf right" button (thanks Static!) and he said, in a very irritated tone "So, you didn't hear a word I said?", and I said, "No, I didn't, I'm deaf in one ear", and he spun and walked away like he was annoyed at me.  I was at a party on Saturday night, and he was there and he kept staring at me.  What am I, a freak?????   So apparently when non-visible becomes visible it might not matter.  Interesting little behavioral exam it is, wearing that button at work.

BTW, did OK at the movie, they turned up the lights as the credits rolled.  Yea!!!!!   
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

Obita

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Re: visible disabilities v. non-visible disabilities
« Reply #27 on: July 23, 2007, 06:52:56 pm »
I put my deaf in the left button on at work too.  After a while, everyone quit looking at it and talked into my deaf ear again.

One guy can't ever get it right.  I even told him to just remember that he is right handed, my right ear is my good ear etc....no use.  Gosh, it's not like all 60 of us are deaf in one ear.  'Tis just me......

If anyone wants one of my Deaf in the Left buttons, its yours.  PM me your address and I will put it in the mail.

Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Gennysmom

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Re: visible disabilities v. non-visible disabilities
« Reply #28 on: July 23, 2007, 10:05:33 pm »
OH, what an interesting experiment that would be, what if I wore a deaf right AND a deaf left pin????
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

Static

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Re: visible disabilities v. non-visible disabilities
« Reply #29 on: July 24, 2007, 08:15:19 am »
Gennysmom, Only you  would do something like that! LOL
3.5cm AN removed 1-21-04
CSF leak repaired 5/04
SSD Right