ANA Discussion Forum
AN Community => AN Community => Topic started by: Gennysmom on July 09, 2007, 01:26:54 pm
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I have a question for anyone out there able to answer....the one issue I keep thinking about in my recovery is that for most of us our "disability" is a non-visible one, generally not apparent to anyone who doesn't know...and I'm sure I'm going through a process of dealing psychologically with the fact that I have a disability...but I wonder how different it is for those of you with visible disabilities as well....how did you cope with it versus the visible one? I feel like I want to remind people that I'm not the same because they don't really see it to notice it....because I don't want anyone to think I'm a dingbat for no apparent reason :D But I also get tired of hearing myself say "you're talking in my deaf ear" too. I have a co-worker who is a serious burn victim from many years ago and am thinking of asking him about the process he went through to find the new normal....I'm really curious about other's journeys.....I hope this makes sense because I'm having one of those fuzzy headed days....
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Kathleen,
I have a book that was given to me when I first took ill a few years back... maybe worth checking into:
Title: Living well with a Hidden Disability - Transcending Doubts and Shame and Reclaiming Your life.
Author: Stacy Taylor, MSW, LCSW with Robert Epstein, PhD.
It covers many different topics of so called "hidden" illnesses and how to cope and such... the book has helped me emensely over the years.
Just a thought.
Phyl
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Sounds good....still would like the comparison if someone is dealing with a visible and a non visible disability. I know what the non visible is like and it makes me wonder what it would be like if it weren't hidden....if I'd feel any different about it.
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Kathleen,
My dear friend Kathie who I work with always tells me "It is so hard to believe you are sick considereing you look so good." My response is.....I work very hard at it. I make sure my make-up and hair is always done, because that makes me feel good inside. I also think the glass is half full, not half empty. I delagate more at home, with a husband and four sons ages 16-20, if I didn't delagate I'd be in the dungeon doing laundry and cleaning bathrooms!!! I find humour in everything. If I couldn't laugh at myself and at life in general, I would go crazy!!!!!!! ;D I have great support system, my husband, my boys, my cousin Teresa and a few special friends.
When I'm down I read a great novel and loose myself in it. A good movie helps, and last but not least prayer. I did ask the Dr for some happy pills back in January and I have to say it has taken away some of my anxiety.
I'm not making light of your comments, I too get frustrated but it does pass.
Anne Marie
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I work hard to make sure that hair, makeup and clothes are okay when I go out in the public. I get the same reaction...how can you possibly have a disability? I get glares when I get out of my vehicle when I park in the handicap spaces. The old guy at Walmart actually gets me a cart now because he has seen me fall so many times. Always asks if I want a scooter. (He hasn't seen me drive!) I think that people with visable disabilities have an advantage when it comes to the general public. I get tired of my family getting upset with me because I don't know where a sound is coming from! I think they expected that to change after a certain amount of time. But hey, I have a neurologist or rather had one who thought that my hearing was coming back. Every time I went to his office he would snap his fingers on my deaf side and say, "Still no hearing, yet?" I quit going. Apparently he doesn't hear well or read well. I guess I have finally decided that I am not going to wake up and find that this was all a dream. After all this is Houston, not Dallas.............................
Brendalu
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Hi kathleen
Chet was visiabily disabled, whereas my daughters medical problems were not visable on the surface.
Generally, people were more understanding with Chet. would reach out more, would try to assist, where as with my daughters it would be stares, rudeness, snide comments as to why she might need a handicap parking space. It was as if they were invisible. At first I thought the difference was due to the age difference, but as time went on I became aware that it was related to visible and non visable disabilities and how it's perceived by others. IMHO it's much harder for those with invisible disablities. There's an edge of negativeness to it, to the point where at times it takes it toll on the self esteem. It wears on you. and at times can bring you down.
People are less understanding, more likely to look right pass you. Both my daughters has stated during the times when they have had to use either a cane, crutch, or boot/cast, (a visible aid) generally people were more understanding, would even ask questions as what the cause of the medical problem is.
kathleen, I've spoked before of having a facial deformity as a child that was corrected at an adult (in my thirties) where as I'll never be consider one of beautiful people , it did help me to feel and look lnormal as well as correcting the medical issues. I can clearly remember as a child and young adult wishing that i had a medical problem that I could hide, cover, that wasn't out there for the whole world to see on a daily basis. Because of the facial deformity, and speech impediment it was assumed that I was also mentally handicap. Even as an adult i found that i was talked down to. Maybe that's a big part of the overall picture. Dealing with others biases.
Not sure this makes sense, hope it does.
Hugs
Raydean
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Thanks everyone....I truly am OK, Anne Marie I live my life very similarly, I'm just an innately curious individual, especially when it comes to psychology, and now that I know what it feels like to have an invisible disability, I wonder what it's like for others. Raydean, I know how hard it's been for many in your family...thanks for being my friend. You are one of the most intelligent, articulate, sympathetic people I know...beauty comes fromt he inside anyway, the outside is just a matter of opinion. You know I really think that if someone wants to discriminate, it's a great warning signal that this is someone you want to avoid anyway....know what I mean? ;) Actually there are some days that I think I should use a cane just to cue people in that something isn't right with me. I go down to the farmers market and try to navigate the crowds every week, and that's probably one of the hardest things I do...
Anyway, don't want to alarm anyone regarding being "disabled", but what that really means to me is that I lack an ability that I once had, which can simply mean that I am no longer hearing in one ear. There are other issues, but I'd also like to take away the seemingly negative stigma that "disability" seems to have in the so-called "normal" world.
Brendalu...I know that doctor's can't all be expected to know every thing, but seriously....I'm glad you're not still seeing that one, I'd have to wonder about you! ;)
An interesting comment from my boss during my recent evaluation....her brother in law has had two strokes, and when we were discussing my continuting recovery (a year later) and that things were still improving, the light bulb went on and she said, "so this is kind of like recovering from a stroke" and she GOT that brain injury recoveries are impossibly slow, all kinds, not just strokes or injuries from blunt trauma.
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Kathleen...........................I wonder about me daily! ::)
Brendalu
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Thanks Kathleen for starting this subject. I'm hoping someone who reads this can help me with my non-visible disability dilemma.
I had AN surgery on 5/31 and thankfully have no visible signs of my surgery, except for the scar behind my left ear that is rapidly being covered by my hair. I experienced minimal facial nerve damage that was cleared up with steroids in the hospital; and my post op, unsteady gait gets steadier every day. I have some non-visible issues - dry mouth, metallic taste in mouth, occasional dry eye, and SSD. The SSD is where my dilemma comes in.
Prior to my surgery, although I had diminished hearing, I still had good word recognition and could make out a fair amount of what others were saying to me. Now I am completely deaf in my left ear. When I returned to work I explained to my staff, my boss, and the rest of my colleagues about the deafness. I know it's totally unintentional on their part, and that life isn't all about me, but I am getting very frustrated by everyone speaking into my left ear. I do what I can to turn my body so that I can hear better, and in meetings, I consciously sit where I can hear the majority of the people. Just the other day, during a training session at work, a colleague (who incidentally is a medical professional and had extensive conversations with me about my AN both before and after my surgery) sat down on my left side and proceeded to make small talk the entire session. I have to be honest, I just smiled, nodded, and pretended to know exactly what she was saying to me, when in reality I didn't have a clue.
I don't want to keep harping on people about my deafness, but at the same token, I don't want to miss a crucial conversation, or appear rude when I don't respond, or respond incorrectly, to what someone is saying to me. Has anyone found an effective way to deal with something like this? I'm hoping things will improve greatly when I get my BAHA early next year, but until then I need some suggestions.
Thanks.
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Hi Brendalu,
I understand where you are coming from. My biggest complaint at work is the radio. If it is too loud, I'm lost. Someone can be directly in front of me and I have to basically read their lips. I work for a Credit Union. The computers, the phones, the chq imager, the chit-chat.....some days are just overwhelming. My only scar is also behind my left ear. Here's something that will make you laugh. The other day one of my co-workers was giving me a ride. I don't drive, I just drive people crazy!!! Her head light had duct tape on it. I asked her what happened. Her son was up in Timmins On taking the fire figthers course and he had the car. I thought she said it was a moose but she said it was loose. Gosh did she laugh, she had tears in her eyes. When ever someone at work says they can't hear I tell them that's my excuse they better find their own. Like I said before I have laugh I'll go crazy or even worse cry. At least we have this forum where we can all crab and encourgage each other.
Anne Marie ;D :D ;) :)
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I have a suggestion...wear one earring or stud every day on your good ear. People will mention that you are missing one earring. You can say "No, it is my reminder to others that I have this one good hearing ear." Soon they will start looking for your good side." It worked for me! I did this for several months before I bought my TransEar. Now, I can go without the TransEar some days and my friends still know where my good ear is by my earring.
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I have a suggestion...wear one earring or stud every day on your good ear. People will mention that you are missing one earring. You can say "No, it is my reminder to others that I have this one good hearing ear." Soon they will start looking for your good side."
Great suggestion, Boppie. Subtle, but gets the point across. I'll have to give it a try. Thanks.
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Yay Boppie--I LOVE this idea--it makes me want to grt the biggest, gaudiest earring I can find (think 80's disco wear)--Lora :-\
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Sometimes as a reminder I wear my own specially desgined earring. I bought "Ear" bracelet charms and mounted them on posts. The ear is very small and sterling silver but still big enough to be seen as a perfect whole ear lobe. When people approach to look at it closely, they chuckle when I say, "This is my one good ear". I have a sense of humor and joy. What else is left?
I looked all over the web for better and nicer symbols, but could only find the lapel pin from ANA.
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Static was nice enough to give me a lapel button, which is actually quite large, and I am wearing it at work today. I have to use my ipod to check out at work because the ambient noise chatter is too great...and it seems like people get pissed when I do that, like "who do you think you are to wear your ipod at work". It keeps me focused though. It seems like if people can't see it, then you must not have a disability, that I'm living the life of luxury listening to my ipod at work. I'll let you all know how the pin works.
I also work with files all day long, and part of that is pulling/returning them to their place, and our files are all 36" and below, and I hate dealing with them, and I know if I ask to have that removed from my duty, that everyone will label me as "lazy". I got out of it right after surgery, but now there's no excuse other than I'm not comfortable.
It's definitely hard to fight the battle within yourself as well, to try to live up to what you used to be able to do.
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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
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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)
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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
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Thanks, Kathleen, good topic. And Phyl, appreciate the book club suggestion.
Nan
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the solution at wwork is to have a bosss thats had an AN removed.
Laz
I'm close... mine has his brain removed... ;)
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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!
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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!
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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
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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.
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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)
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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
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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!!!!!
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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
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OH, what an interesting experiment that would be, what if I wore a deaf right AND a deaf left pin?????
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Gennysmom, Only you would do something like that! LOL
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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
Tell your doctor you need to park in handicap when it's dark out. This is the reason I got one so I wouldn't fall down when walking from the lot to work or restaurant if I were out in the evening. Try again with your request for a "dee dee dee placard". Maybe the doc needs for the patient to become seriously injured before he starts thinking "safety first"! Splane it that way. Good luck.
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Arushi,
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
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(Spoken with a fecicious {sp?} tone) Ask the doctor if he'll be more willing to give you the placard if you were injured in the parking lot. Maybe then he'll believe you need to park closer!
I got one because I felt I needed it more in the nighttime if I'm out teaching or dinner in the evening at a restaurant by myself! IMO I feel I've been tortured enough from surgery, recovery process and SSD that I don't really feel like putting up with more torture (navigating a parking lot after one hour of looking around, bending, lifting, walking and blaring loud speakers) to finally have to "make sure you look around really well." if I don't have to. Wow, how thought less they can be.
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Okay....I tried the one earring thing today. Two people noticed, my therapists and my shrink! The therapist had to think about the reasoning for almost the entire session and the shrink thought it was a "hoot". They both thought it was my way of beginning a conversation about the jewelry I sell! I'll keep doing it and see what happens.........either people are going to speak to me on my earring side or I'm going to sell a bunch of jewelry. I figure either way.....I win!!!
Brendalu
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Arushi,
Next time I go, I will do that! I have had too many close calls at this point.
~Karen
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I feel blessed--my PCP gave me a placard as soon as I was diagnosed-no questions asked. Although we have a "non-visible" disability--what about cardiac pts. --you also cannot "see" their disability, but they have it just the same :) Phyl--I got the book you mentioned--you are right--great book I would recommend.