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Old 05-16-2010, 03:38 PM   #101
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I've been reading this thread quietly...

I'm in the same boat.

I have no vision in my left eye, crappy vision in my right eye.

I have very little hearing in my left ear, a bit more in the right.

If I don't have my glasses/contacts and hearing aid, I'm fucked.

So, I have problems with dizziness. I have problems with coordination. I'm a klutz. I don't fall down AS often, but just last night, I couldn't get off my front porch because I couldn't see the step. I have next to NO depth perception. Tripping is not unusual. I trip over flat surfaces.

I don't consider english my first language; american sign language is. I'm fluent in asl and english sign language (esl). I hear through vibrations.

Unless I see it, or it's a tremendous downpour, like you'll be soaked in less than a second, I don't know what rain sounds like.

You can't whisper to me.

You can't talk to my back. You'd be amazed how many people I've pissed off, thinking I'm ignoring them. I flat out didn't hear you.

Sometimes, others are stupid and think yelling is the answer. It's not. You're just pissing me off when you do that. Slow down and talk clearly. But don't slow down so much that you're ridiculous. Don't treat me like I'm an idiot. Deaf does not equal dumb. I could be smarter than you.

I need asl interpreters for school. I try to go it alone, but most times end up needing the interpreters. I get stared at when someone is signing to me. That annoys my social anxiety. It's disconcerting to be in a classroom of 50 people and 48 people are staring at you, including the professor.

I'm lucky. I've had good interpreters. One told off my entire class for doing so. Including the professor. It was fantastic.

I laugh about my .... lack of abilities.

I was lucky to be alive.
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Old 05-16-2010, 03:38 PM   #102
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Thanks guys. I appreciate your support. I really am trying to stay positive. If the tumor is cancerous, I am going to go to NIH. I figure Fiercegrrl and I need to get Building 10 in order.
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Old 05-16-2010, 03:41 PM   #103
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Welcome to the thread DamonK.
I promise not to whisper or yell.
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Old 05-16-2010, 03:44 PM   #104
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Welcome to the thread DamonK.
I promise not to whisper or yell.
lol... ty..
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Old 05-16-2010, 04:10 PM   #105
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Quote:
Originally Posted by DamonK View Post
I've been reading this thread quietly...

I'm in the same boat.

I have no vision in my left eye, crappy vision in my right eye.

I have very little hearing in my left ear, a bit more in the right.

If I don't have my glasses/contacts and hearing aid, I'm fucked.

So, I have problems with dizziness. I have problems with coordination. I'm a klutz. I don't fall down AS often, but just last night, I couldn't get off my front porch because I couldn't see the step. I have next to NO depth perception. Tripping is not unusual. I trip over flat surfaces.

I don't consider english my first language; american sign language is. I'm fluent in asl and english sign language (esl). I hear through vibrations.

Unless I see it, or it's a tremendous downpour, like you'll be soaked in less than a second, I don't know what rain sounds like.

You can't whisper to me.

You can't talk to my back. You'd be amazed how many people I've pissed off, thinking I'm ignoring them. I flat out didn't hear you.

Sometimes, others are stupid and think yelling is the answer. It's not. You're just pissing me off when you do that. Slow down and talk clearly. But don't slow down so much that you're ridiculous. Don't treat me like I'm an idiot. Deaf does not equal dumb. I could be smarter than you.

I need asl interpreters for school. I try to go it alone, but most times end up needing the interpreters. I get stared at when someone is signing to me. That annoys my social anxiety. It's disconcerting to be in a classroom of 50 people and 48 people are staring at you, including the professor.

I'm lucky. I've had good interpreters. One told off my entire class for doing so. Including the professor. It was fantastic.

I laugh about my .... lack of abilities.

I was lucky to be alive.
Have I told you lately how fucking proud of you I am??? Well.... I am!! You live life to the the fullest you are possibly capable of and then you reach further... I am glad that you laugh when I walk away talking to you forgetting you cant hear me from the bathroom to the kitchen... I am learning... I will continue to learn.. But I respect you... And yes, you are one of the lucky ones who are not only alive but truly thriving... You make me so damn proud to call you Daddy...


your precious babygirl... who is excited as hell that you get to go back to school!

Becca
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Old 05-16-2010, 04:12 PM   #106
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Originally Posted by SuperFemme View Post
Welcome to the thread DamonK.
I promise not to whisper or yell.
well I have to admit I do whisper to him at times.. I forget and will be laying in bed and talking softly to him... then when he doesnt hear me I raise my voice and blow his eardrum.. ...
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Old 05-16-2010, 04:14 PM   #107
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Originally Posted by MidnightBlueEyes View Post
well I have to admit I do whisper to him at times.. I forget and will be laying in bed and talking softly to him... then when he doesnt hear me I raise my voice and blow his eardrum.. ...
I think THAT kind of whispering is just fine, no? You two are a sweet couple.
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Old 05-16-2010, 04:20 PM   #108
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Have I told you lately how fucking proud of you I am??? Well.... I am!! You live life to the the fullest you are possibly capable of and then you reach further... I am glad that you laugh when I walk away talking to you forgetting you cant hear me from the bathroom to the kitchen... I am learning... I will continue to learn.. But I respect you... And yes, you are one of the lucky ones who are not only alive but truly thriving... You make me so damn proud to call you Daddy...


your precious babygirl... who is excited as hell that you get to go back to school!

Becca
But honey........ it's priceless when you've had most of a conversation with me without me being there then ask a question and I don't respond and you come after me with "I was talking to you baby" and my absent minded look around..."ooooohhhhhhh" and comprehension dawning across my face...

It's funny.
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Old 05-16-2010, 04:24 PM   #109
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I think THAT kind of whispering is just fine, no? You two are a sweet couple.

lol... yes it would be fine if he could hear me... lol... Sorry that just cracked me up when you said that... cause I do it all the time and forget... and thanks for the compliment...
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Old 05-16-2010, 04:26 PM   #110
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lol... yes it would be fine if he could hear me... lol... Sorry that just cracked me up when you said that... cause I do it all the time and forget... and thanks for the compliment...
*snickers*

It's frickin hilarious!
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Old 05-16-2010, 04:26 PM   #111
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Originally Posted by DamonK View Post
But honey........ it's priceless when you've had most of a conversation with me without me being there then ask a question and I don't respond and you come after me with "I was talking to you baby" and my absent minded look around..."ooooohhhhhhh" and comprehension dawning across my face...

It's funny.

Yes and I am learning now to stop talking until I am in your presence again.. lol
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Old 05-16-2010, 04:44 PM   #112
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Thanks guys. I appreciate your support. I really am trying to stay positive. If the tumor is cancerous, I am going to go to NIH. I figure Fiercegrrl and I need to get Building 10 in order.
i was SO hoping the doctors at NIH would want to take over my care. mainly cause i wanted to be able to ride the elevator there, multiple times a day. it makes me think of the elevator in the bubble room of willy wonka that blasts through the ceiling and into the sky!!!
my therapist tells me to find something to look forward to every day. it would have fit the bill!
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Old 05-16-2010, 05:18 PM   #113
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Good evening,

i just spent the last while reading every single post on this thread.

i was glad when i got to Corkey's post because it answered my question; whether physically challenged folks might find a place amongst the "freaks" *grin*

Bit said: This is what I hate about being disabled, that even when I feel relatively better, I must ALWAYS allow for the pain.

This is how i feel. My physical capabilities are disintegrating and i have to come to terms with my new life.
Or a new chapter in the book called "MY autobiography".

i see myself in many of the people in this thread, in this special place where the "freaks" gather. i am independent to a fault. i cannot do the same things i once could. i need to ask for help.
Oh my goodness, how terribly hard that is, to open my mouth and say "I can't do this. Will you help me?" (sigh)

i also want to say good luck to Andrew Jr. with the upcoming medical situation.
and a helloooooo to my friend becca and her wonderful Daddy, Damon.

More things on my mind, so many, just overwhelming sometimes as i struggle with acceptance
(c/b society, people, myself, the affliction or all of the above)






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Old 05-16-2010, 05:23 PM   #114
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Welcome Freyja! Nice to have you here, and ALL forms of different-ness are welcome. Heck, everyone is welcome.

I like what you say about your autobiography...I feel the same. Sometimes the new chapters scare me, sometimes they make me laugh, sometimes they make me cry, and I am always grateful to be able to do editing.

(((freyja)))
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Old 05-16-2010, 05:45 PM   #115
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Welcome DamonK and Becca! You guys rock!

Freyja, I am so glad you are here with us!

Fiercegrrl, you got that impression of the elevator too at NIH? And here I thought it was just me being me the whole 2 times I was there already.
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Old 05-17-2010, 04:27 AM   #116
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Good morning and thank you for the warm welcome.

i must say that while the body may be challenged, the mind is alert.
i was out on the balcony watching the sun rise this morning, while the seagulls screamed, " get up get up everyone a new day is here!
What a blessing it is to start the day with a beautiful sunrise.
That is one thing we can all count on, no matter what is happening in our lives.

If you haven't ever done it, try and at least once in your lifetime,
put it on your bucket list and go to the beach and watch the sun rise out of the water.
It will literally take your breath away.





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Old 05-17-2010, 10:31 AM   #117
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I love the sunrise here coming up over the hills of grapes. It's not the ocean, but it sure is a different kind of beautiful....

Watching plants grow is also amazing. Weird, huh?
But to put something in the earth, nurture it, and then cook it or just admire it? It's a reminder of how much there is to be grateful for.
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Old 05-17-2010, 11:20 AM   #118
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I dont think I have posted in this thread on this site. I have several health issues that limit my abilities, which have also caused me to become a creative thinker. I dont like limits but have grown to acknowledge I have them, and so I work on figuring out ways to do the things I love. Like gardening. I am now putting together an extensive vertical garden so I have very little kneeling work to do.

I would like to share with you what happened to me this weekend at my daughter's college graduation. The first four levels of seats where reserved for people with disabilities. So entire families were saving seats and that meant that the reserved seats were "reserved" fairly quickly and people with true handicaps could not get seats. One lady had five seats saved...when I asked her if they were saved she said yes...I then asked her if everyone was disabled who was going to be sitting there and she snapped at me and said "are you?" My eyes got huge. I had to hold myself back so I didnt go overboard but yes, my volume increased and I informed her I was indeed disabled and if she walked in my shoes she would know. Later, her family showed up. She had one of her parents sitting with them, who was obviously disabled. But she and her husband and her two big strong strapping high school boys were not. This family was just one of many many people who took advantage of handicap seating. I watched as people with tremors, people who used canes and walkers, mothers with CP children, elderly who could in no way climb steps (bleacher seating) and folks with oyxgen all look desperately for seating and found none. If I could have stood for the ceremony I would have given them my seat. I have never witnessed a more pathetic example of how Americans have lost their sense or morality. Morality isnt about who is sleeping with who, or who is sending stock tips to who, or gay vs hetero marraige. The real morality issue is how uncaring so many of our people have become. The etiquette we once shared as a means of being courteous to each other has disappeared. People would like to say only the youth are that way. I use to say that. But not anymore. I now have witnessed where the youth have learned it from. I am writing a letter to the editor of our area newspaper to let them know how far down the courtesy scale we as a nation have gone...
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Old 05-17-2010, 12:40 PM   #119
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When people see me in real time, they can see my limitations and my disabilities. It is right there in there face. Online I feel my disabilities are hidden. What word or words do I need to say to get this across to them?
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Old 05-17-2010, 03:56 PM   #120
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Originally Posted by Andrew, Jr. View Post

When people see me in real time, they can see my limitations and my disabilities. It is right there in there face. Online I feel my disabilities are hidden. What word or words do I need to say to get this across to them?
hi, sorry if i am asking a dim question but do you feel that the fact that being online hides your disabilities and limitations, and see this as a good thing?
Or do you find this somehow hinders your comunicatios or self expression somehow?

i hope this makes sense, i've been spending a hell of a lot of time in Second Life which is actually where i found out about the planet..

i originally got a wheelchair for my avatar because i actually felt weird walking around, i do not walk around in RL and i know in SL avatars can fly, but my need for a chair is much more about my identity as a person than my ability within the world.

i am trying to spend more and more time without a chair and i will get up and dance with certain VERY cute people, but i just don't feel comfortable without it..

I guess it's similar to the fact that in Second life i haven't been able to find a realistic looking fat guy, especially a furry one *grin* and people tell me there i don't have to be like my real me.
But i feel being a skinny tall dark skinned dark haired, dark eyed athletic able boddied guy is a complete misrepresentation of myself.

i also feel when trying to socialise in spaces aimed at disabled/limited/differently abled/challenged/handicapable (lol south park) people, that i am expected to wear my disability as a badge of pride and if i am not using something that shows me to be part of the comunity i'm somehow being disloyal..

Does any of that make sense?
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