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Author Topic: Need your perspectives about my situation....  (Read 4271 times)

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Offline Alain

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Need your perspectives about my situation....
« on: July 30, 2007, 06:38:06 PM »
...I am lost about this whole thing. What is wrong with dating a deaf person. I have  met this guy some time ago. Both same ages, sort of look alike, lots in common. Both with supporting friends and family, worked in the service industry, both poz (he is much healthier than I am) and yes sex is good, both versatile  but intimacy is a challenge and almost none existent.

Went out to this place for diner. Candle lights and the works. Everything was wonderful. Well almost. The food, wine and most important being together. He was very disappointed and so frustrated, because it was very difficult for me to sustain the conversation. The place was very dark so it made it almost impossible for me to read his lips. Restaurant are a difficult place to begin with, taking in consideration trying talking and eating your food. People mean well like the waiter but as soon as I open my mouth, they get confused as to how come I speak so well and being deaf all at the same time. So it becomes very touch and go having to repeat because I did not understand and making sure I get what I want. For the first time my friend was not comfortable writing a few key words down on a piece of paper like we did before.

Back to his place and got together making out. He was a bit drunk and aggressive. It took me awhile to get in the mood, but I had to let go of the restaurant nightmare. Not for me so much as I am more than happy and tried to make the most of it, but it was a definite one for him. My world is very silent. Trying to be comfortable with myself I am learning to compensate with my body language where touching, looking on and giving everything else I got, so that everything becomes more enjoyable for both of us. So I thought. He persisted in talking and sort of ignore me. So I stop and look at him and said. Show me, make me feel what you are saying. It worked for awhile but I can tell you that it was a struggle for him. Sipping wine, listening to music, he jump off the couch and said "this is my favorite song". I replied " which one, tell me which one it is". Not a word. He look at me for the longest time (seams to me anyways) and I proceed to ask for the CD case so that I would know what he was talking about and perhaps read the words. I was trying very hard to defuse the awkwardness. I don't know. Afterwards it felt like, actually I don't know how but I left and went home.

I have tried my best living with this disease for the last 20 years. Don't take me wrong, I am grateful to still be right here right now. But loosing my hearing is still devastating and quite frankly I am not sure I can adjust. Sure if I had to choose between my sight or my hearing, I would certainly would like to be able to see. There is no group for people like myself, who lost all their hearing at the age of 47. At the hearing center most patients are getting Cochlear implants, but this option is not suitable for my hearing loss. All other support groups are for elderly whom are loosing their hearing because of aging and they keep asking me what I am doing there at my age. I don't have the strength to explain.

So tell me seriously. Am I doing something wrong. I am very hurt and disappointed with him because I thought that being HIV would make him more sensitive regarding health issues. He told me that he can't continue this relationship. It's too much work. What that does to me is, I can't even try to explain. I have no words for it. My friends are getting on with their busy life. Diner invites are becoming a few and far between. It makes them uncomfortable. Picture this. Diner party for 8 which seven are laughing their heads off. I did not get it. I am sorry, but why should I be sorry for a situation which is beyond my control. I just can't hear you.

I don't want or need the usual ....well his loss.... or this is not the right guy for you.... or what a jerk... and so on. I already know all of that. What I need is to understand and I am not even sure if I can. Take and hold my hand and just try to bring light to all this. The isolation is unbearable and it brings back the 20 years plus of discrimination and having to fight the stigma of Aids. It is like pointless carrying on surviving something I'll never be part of. A meaningful and full life, worth living.

Thanks for hearing me out.
Alain. 

Offline RapidRod

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Re: Need your perspectives about my situation....
« Reply #1 on: July 30, 2007, 06:54:53 PM »
cowandalehouse, I've got several friends that are deaf. When we meet at the bar the bartender just hands us a both pencils and a pad and we talk all night long. I'm only half deaf. I'm 100% deaf and my left ear and I can't hear a damn thing out of my right.  ;) No I'm only deaf in my left ear. 

Offline pozattitude

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Re: Need your perspectives about my situation....
« Reply #2 on: July 30, 2007, 08:11:55 PM »
I'm sorry cowandalehouse,

unfortunately, people suck!...most people are just not comfortable around anyone who is "too" different from what they are used to.
When I was in college I used to meet with a group of def gay students at one or the local bars on a weekly basis.  Some could ready lips and talk, some were only partially def and some were 100% def and could not read lips.  We always managed to have a great time.  What used to piss my friends off,  were the people who thought they were being nice and cool by "over doing it" (the drunk assholes who would put their faces on your face and shout , as if it made a difference how lound they spoke).
If people could just get through their thick heads that we are all different, some more than others ( I'll give you that), and if we use our creativity just a little bit,  those dumb people would realize that there is so many wonderful ways to communicate.

Rich
(who believes you can say a lot more without using words)
POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

Offline Life

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Re: Need your perspectives about my situation....
« Reply #3 on: July 30, 2007, 09:09:29 PM »
Alain,  I know you pretty well sweetie...  This being def is still fairly new to you...   I can understand your frustration as I can also understand some of the frustration of your bf to...  But that understanding only goes so far as I am not def (yet).   Its going to take the both of you to learn how to communicate.    I would not through in the towel this earily.    Try going to restaurants with better lighting,  smaller venues,  slower pace etc.   If you need to write a letter or notes to your bf to breach the communications barrier, do it...   This is new to both of you...  I am not saying to go and be with others with similar disabilities, but you know, it works.   We come here to get support for our hiv/aids diagnosis and living.  Perhaps you can find that kind of place in the hearing impaired world...?   If it does not work one way,  try a different approach..   Do not try the same old thing and expect different results.   It just will turn out the same way everytime...

I am sorry the world can be so brutal Alain,   know that you are loved dearly my friend....

Love

Eric & Will
« Last Edit: July 30, 2007, 11:27:29 PM by Life »

Offline Lisa

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Re: Need your perspectives about my situation....
« Reply #4 on: July 30, 2007, 11:24:21 PM »
Perhaps he is having ambivalent feelings about the long range possibilities, or maybe he is a bit flubbered by the chasm between your worlds. Give him(and yourself) some time to work through this before you get too upset.
Maybe it was just an off evening for both of you.
I am quite sure I would feel as you do, especially considering you have had a full hearing life, and still adjusting to the newness of your hearing loss.
Have you researched whether there are any deaf social clubs near you?
I could hear your sadness, and frustration coming through loud and clear in your post, and wish I could just put my arms around you, and give you a kiss, and a hug.
Hang in there.
Maybe give it another try at an outdoor cafe' for lunch.......just a thought.
No Fear  No Shame  No Stigma
Happiness is not getting what you want, but wanting what you have.

Offline milker

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Re: Need your perspectives about my situation....
« Reply #5 on: July 31, 2007, 12:42:35 AM »
Hi cowandale,

having lived in DC and studied ASL and Deaf Culture at Gallaudet University for the deaf I have some experience with going out and dating deaf people. Your situation is a bit complex because you have lost your hearing at a later time, and so you have a different perspective from someone that has been deaf since birth. I guess your speech is still pretty good, so I'm wondering if this is why your partner didn't grasp the fact that you couldn't actually hear at all, not that you were hard of hearing, but really deaf. You are able to communicate one way with him, but he didn't understand that he needed to work on the other way.

Think about getting your new partner to sign language lessons, so that the basics are learned and that the burden of understanding each other doesn't just rely on you. ASL lessons can be lots of fun and gives the opportunity to the hearing person to understand what it is to be deaf. Does he realize that you can't rely on sounds when you cross the street? Try making him aware of this (but don't hurt yourself!). If he goes to class, teach him fun signs like "bullshit" so he can impress his comrads..

HIV may have been the original bonding element, but you may have put this bonding on top of the relationship, putting aside the deaf education part?

As for your friends, I think it is utterly important for you to get them to understand your new world. I cannot imagine how difficult it must be for you to be in the situation you described, and you should stand up, stop the laughing, yell, and tell them that they are your friends, and they are hurting you because they push you away, without noticing, which is worse. Tell them that if they love you, then they must make the effort to understand you, and offer them a  2 hour session with a deaf teacher and a translator who know how to explain those things to hearing people.

Oh and I forgot about the waiter. Same thing with him, you must speak well, so he doesn't grasp that you cannot hear. If you need him to tell you something like what are the available sides, tell him to write it down and give him a pad & pencil that you keep with you. This works well and avoids the frustration.

Good luck,

Milker (who lost all his SL abilities after he moved out of DC  >:()

/edited to add info about the waiter/
« Last Edit: July 31, 2007, 12:54:06 AM by milker »
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

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Offline Queen Tokelove

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Re: Need your perspectives about my situation....
« Reply #6 on: July 31, 2007, 02:20:10 AM »
Oh, you are so not alone. I just lost the majority of my hearing last year and I now wear hearing aids. I am still adjusting too. I can no longer use my house phone, needs to buy one with a speaker phone on it. Uses the speaker phone on my cell too. I even had a cable rep get persnicketty with me when she realized I had her on speaker. She immediately got defensive and I had to explain why I had her on it.

All those I'm around knows. But they still do little things that irritate me, not speaking up is one and whispering is another. Or having the volume too low on the tv and I'm stuck watching the pictures and trying to figure out the storyline myself. I try to remind myself that this is new to them too and they forget. But I also have 2 friends that are very considerate, they will put the captioning on movies or the tv for me. I take one friend with me to important appointments so that she can hear what I may miss. When going places, I usually let people know that I am hearing impaired.

I know eventually I will be where you are now. I don't know how to read lips at all and very little signing. I don't have a problem carrying a notebook around when the times comes when I lose it all. Like you said, I'd rather it be my hearing than my sight and it is a pain besides being poz. I hope things will work themselves out for you.

As far as the guy goes....Good Riddance, I say.....
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline Dragonette

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Re: Need your perspectives about my situation....
« Reply #7 on: July 31, 2007, 04:05:42 AM »
hi Alain

I am just reading this book about a relationship btw a deaf woman and a hearing guy, it's actually a thriller but the main point is for me to see if they make it last. There is a lot about the miscommunication and the fustration on both sides, the book is called Talk Talk it's by T.C Boyle.

Well I have no words of wisdom just random thoughts. Friends and certainly partners can often be thoughtless and hurtful. Regarding your friends, if it is a long dinner party esp with alcohol, I think it is inevitable that there will be some communication and laughter that excludes you, because it's not 1:1, but the question is the degree that it happens. Maybe you could try talking to a couple of them about how uncomfortale you felt and make sure you sit next to someone who can update you on the conversation at least part of the time. I can imagine how painful it feels, but I don't think you need to give up yet. I think you should go with the notion that you enjoy about 1/3 of the evening... It is incomparable but as a foreigner I have been many times annoyed fustrated and even insulted on the outskirts of conversations, esp in big dinners and social events, where, like you, my Dutch is just not good enough unless someone speaks directly at me in an articulate way, to understand anything. You have to consider that you are adjusting and still learning to read people's lips, the more you go to these things the more you will learn. I am sure your friends want you there and care for you, otherwise they would not invite you, simple as that. In a 1:1 situation you can explain to them individually, I am sure they will not change 100% but that there will be some change.

regarding your BF, that is more complicated. It sounds very "cold shoulderish" of him. If he can't accept your limitation (there is a difference btw what your friends did and outright disacceptance), then he is just not as cool as he appeared to be. Maybe he is so healthy that anything less healthy scares him, like a threat. I dunno. But please don't give up. 'K?
"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

Offline DanielMark

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Re: Need your perspectives about my situation....
« Reply #8 on: July 31, 2007, 07:01:11 AM »
Need your perspectives about my situation....

Alain,

Forgive my clumsy attempts.

I wish I had something profound to offer in your search for understanding, but I have to confess that I’m limited in knowing what to say about the major disappointment you are experiencing over this man. Then again, all disappointments are difficult to accept.

I have friends who have partial hearing loss, including my ex of ten years, but that’s not the same as knowing it by experience. One thing I do know (from that experience) is that it takes a willingness for the one who hears fully to focus intently in communication. If this man isn’t dedicated or committed to making things work, then it seems there is not much more you can do about it.



Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Christine

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Re: Need your perspectives about my situation....
« Reply #9 on: August 01, 2007, 10:27:40 PM »
Hi Alain,
I can share my experiences with you. I lost the vision in my right eye last year from CMV retinitis. Completely blind, I can't see anything- no light, no shapes. Prior to having vision problems from cmv, I used to think that I can deal with whatever the hiv journey brings me..as long as I don't go blind. About 20 years ago, I saw a tv show on HBO about a hiv + man, who eventually lost all of his vision. I remember thinking...how can he go on, how can he live each day? But he did. It was hard, but he adapted, and I guess I have adapted to.

I can't do things the same. I don't drive anymore. I legally can, but I walk into walls, and trip over everything, and I am afraid I will get into an accident and hurt myself or someone else. So, I have to rely upon my friends and family to drive me everywhere.

I have trouble reading, and I love to read, so I now listen to audio books. I was introduced to the Free Library of Philadelphia for the Blind and Handicapped, and they provide, books, magazines, newspapers all on tapes.

I can't do jig saw puzzles anymore. I just can't see the differences in the pieces anymore. I don't have depth perception, so I am always missing the cup when I pour juice or coffee. I have to have all the fonts really huge on the computer so I can see them.

I guess what I am trying to share, is that you can go on, but you have to adapt to your hearing loss. It isn't fair, it isn't easy, but you must do it.

I tell my firends and family if I can't see, or if they need to do something in order to make my experience easier. Not in a selfish manner, but so I can enjoy what ever we are doing as much as they do. I need help walking sometimes in a space that is very cluttered, I need help in dimly lit restaurants, I need help walking to restrooms if the light is low. I need to hold on to someone if the floor or ground is uneven.

Your friends may not realize that you are struggling, or they may not want to draw attention to your handicap thinking that you might be offended.

I use humor to cope. I will make a joke out of not being able to see something, it helps to break the ice.

At dinner parties, bring along a bottle of wine, or a box of chocolates, and announce...For being my ears/ translator tonight, your parting gift will be this lovely bottle of wine/ box of chocolates. Or take silly little tablets and pens along, hand them out to everyone, and say start writing...

When I go out, I will tell the waiter or clerk that I can't see very well, and I might need help. Take along a pad and pen, and tell them they need to write down your conversations. If they cop an attitude, tell the manager and switch waiters. If the manager cops an attitude...walk out.

And talk to your boyfriend, really talk. He needs to step up, and adapt his behaviors in order to accommodate you. If he can't do it, then he needs to be honest and upfront about it. Work on finding a solution together.

You live admirably with hiv, you can live that way being deaf also.

Sending you strength and good wishes.
Christine
Poz since '93. Currently on Procrit, Azithromax, Pentamidine, Valcyte, Levothyroxine, Zoloft, Epzicom, Prezista, Viread, Norvir, and GS-9137 study drug. As needed: Trazodone, Atavan, Diflucan, Zofran, Hydrocodone, Octreotide

5/30/07 t-cells 9; vl 275,000

Offline Alain

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Re: Need your perspectives about my situation....
« Reply #10 on: August 02, 2007, 04:07:04 PM »
Thank you all for reaching out to me. I really appreciated your input.

Rodney, I really like going to familiar place simply because I found that, once people know you, they do make an effort. It does make me feel a lot better. Maybe one day I'll by you a drink and make sure I sit on your good side. ;D

Rich, I agree. If we were all the same; how boring this life would be. It surprises me how much my body is compensating for the loss. But it is still very challenging and I am too much at the mercy of people willingness to accommodate my situation.

Eric, the world is a tough place. Here we all know that for sure. Of course with time my wish is that I will be a stronger person and be able to dealt with all this better. Thank you for your friendship and regards to William. :-*

{{{{Lisa}}}}, wisdom at its best and I thank you for that. I (we) try a lot of different ways to get on a comfort level but I guess only time will tell. I am left hanging in a situation that unless he is prepare to meet me halfway, quite frankly I don't see us going anywhere fast. I am not being negative about it but what you said made me rethink the whole thing. So I asked the question about my over all health situation and his feelings around that. I have Aids and he seams not willing to speak his feeling right now. I am sure that it is also a case of HIV lite vs an old timer. Currently he is not on meds and I guess he has trouble dealing with situations that I am facing right now. Again I am not giving up but for my sake I have to keep my expectations on a manageable level. That is life. :-*

Milker, that is why I decided to learn lip reading and finger spelling as supposed to ASL. For the most part I do what you are telling me, and it will get easier as I get stronger I guess. I wish I had someone to come with me and learn ASL but all my family is living away from me and my friends have busy life, kids and so on. I also have difficulties identifying myself as a deaf person. At the hearing society it is also scary and I don't like the politics around deaf people. By that I mean since I was able to hear some part of my life, I am designated a deaf person with a lower case d, where as deaf people from birth are deaf but with a capital D. 

Queen, I know that I am not alone and it is scary for you as well not knowing where that hearing loss will take you. Perhaps your is a different one (same struggles) and I hope that it will not get to a complete loss. There are multitudes of gadget on the market that can help you. I once was with a FM digital system called LEXIS and it is so wonderful. You can plug in your TV, Phone, PC and it comes with this part that allows you to go to a conference let say, put it on the podium and sit hundreds of feet away. You can actually hear the speaker as if his chin was on your shoulder loud and clear. I really miss that toy. :P

Dragonette I will not give up and I too read a lot on the subject. Will look for this book sounds interesting and close to my situation.

Daniel I hear you and unfortunately there is not much I can do unless the effort is made on both side. God only knows I try and it would be sad if this is not working out but like you say beyond my control.

Christine, I am sending hugs and energy your way. I in total awe as too how and what you have to deal with on a daily basis. Your are quite the trooper and I am at a loss for words trying to express to you how much you have gave me from theses boards. You are such an inspiration to us all. I certainly relate to your sight as my dear friend Brian went blind. He had CMV Retinitis for about 2 years before he died. I miss him so.Take care. :-* :-*

Alain.
 

Offline milker

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Re: Need your perspectives about my situation....
« Reply #11 on: August 02, 2007, 04:16:07 PM »
cowendalehouse,

if you go to a class, go to the level 1 ASL class that is not restricted to deaf people, the best would be one given for hearing people and making sure that the teacher is deaf. That's how I learned and I can tell you that the students there will be eager to practice with you and vice versa. Having a deaf teacher ensures that there is no verbal communication between students and that all do their best to communicate with their body instead of using speech.Those classes are composed of students wanting to learn ASL as well as parents of deaf children and many other different types of people. This I think will also help you socialize greatly.

Milker.
mid-dec: stupid ass
mid-jan: seroconversion
mid-feb: poz
mar 07: cd4 432 (35%) vl 54000
may 07: cd4 399 (28%) vl 27760
jul 07: cd4 403 (26%) vl 99241
oct 07: cd4 353 (24%) vl 29993
jan 08: cd4 332 (26%) vl 33308
mar 08: cd4 392 (23%) vl 75548
jun 08: cd4 325 (27%) vl 45880
oct 08: cd4 197 (20%) vl 154000 <== aids diagnosis
nov 2 08 start Atripla
nov 30 08: cd4 478 (23%) vl 1880 !!!!!!!!!!!!!!!!!!!!!!!!!!
feb 19 09: cd4 398 (24%) vl 430 getting there!
apr 23 09: cd4 604 (29%) vl 50 woohoo :D :D
jul 30 09: cd4 512 (29%) vl undetectable :D :D
may 27 10: cd4 655 (32%) vl undetectable :D :D

Now accepting applications from blowjob ninjas™

Offline Queen Tokelove

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Re: Need your perspectives about my situation....
« Reply #12 on: August 02, 2007, 07:05:30 PM »
Having lost most of my hearing has been a lot to deal with. The ENT throat doctor says eventually I will lose it completely but what frustrates me is that no one can tell what caused it. I guess I have a need to know these things and being that hearing is what they specialize in, I think they should know something. One doctor told me diabetes but I don't buy it. I have never heard of that happening.
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
Cherish the simple things life has to offer

The Royal Blog

Offline LT

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Re: Need your perspectives about my situation....
« Reply #13 on: August 03, 2007, 07:29:17 AM »
For three years I taught a job training/computer skills course to Deaf and Hard of Hearing adults.  I walked into that situation knowing only one piece of sign.  I learned to say "Nice to meet you" from a "Teddy Ruxpin" cartoon.

I taught with a sign language interpreter at my side most of the time.  I suppose by osmosis I learned to sign - as long as the topic is computers, or procedural, I can get by.  But put me in a social situation and I'm lost.  I don't have the vocabulary and language skills to communicate outside of the context in which I learned sign.

All that is just to provide some background around which I'm framing my comments.

Lets be honest, it takes some time for a hearing person to learn to communicate with a deaf person - and for every individual deaf person the communication style cam be slightly different.

Because you became deaf late in life, your verbal skills are that of a hearing person.  Because you speak well, people can easily forget that you can no longer hear, and therefore slip into their "normal" mode of operation.  I'm sure that is what's happening to your boyfriend.  The wine would only add to the ease of making that mistake.

See if he's up for an experiment like this.  Get a really good, dense set of in ear earplugs.  The kind a construction worker who uses an extremely loud piece of equipment would use for hearing protection.  Maybe try and get them plain coloured, instead of the fluorescent, highly noticeable ones.  While they don't block the full spectrum of sound, they will deaden it enough that he might get a small taste of your life.

Then take him on a date.  Dinner at home, restaurant, movie, - it doesn't matter.  You must be very verbal, with almost no hand gestures.  Make sure you occasionally look away from him, but keep talking.  Make him have to work to understand you.  Maybe even stear the conversation into some complex technical or work related area that he doesn't have in common with you.   In essence, give him the full treatment he gave you.

Don't drag it on too long, or it will just piss him off.  After he takes the plugs out, explain to him how that is your life, all day, every day, for the rest of your natural born years.

Remind him of the rules - when he speaks, he MUST face you or you cannot understand him.  The lighting must be bright enough, at least on his face for you to see his lips, and read his facial expressions.  The rest of the room can be romantically pitch black or lit by flickering candles, but you must be able to see his face.  Tell him that understanding what people are saying is very hard work for you.  You need him to meet you at least part way so communication is easier.  If writing things down is "too hard" for him, maybe he's of the generation that punching the confusing word into his cell phone/blackberry might be the way to go.

You may need to remind him of the basic rules for communication over and over again.  I would expect that after a few drinks, you'll need to explain it all yet again.  If he keeps "forgetting," maybe throw a hissy fit one time, say "I can't understand what your saying" and go home.

If he's not willing to make those accomodations, then he's a jerk and not worth the effort.  If he can't do it for the simple every day stuff, he'll be an ass when it comes to something complex like a fight, or an emergency situation.

But then again, maybe I know nothing at all, and my experiment idea is just a elaborate fantasy.

Offline Matty the Damned

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« Reply #14 on: August 03, 2007, 07:49:22 AM »
Perhaps you guys should know that Juan Carlos (Xyahka) has reproduced whole posts in this thread (and other threads as well) on his private blog. No, not his AIDSMEDS blog, but his personal blog.

In English.

You can find the link by clicking here.

Alain, Queen Akasha, Christine and Basquo can all find their complete posts from this thread reproduced over there for an entirely different audience.

Why am I posting this? Well if Juan has done the courteous thing and asked these people if they'd mind him reproducing their personal in-forums stuff for consumption in an entirely different place then it won't matter.

But if he hasn't (and I'm fairly certain this is the case) then I just feel that my fellow AIDSMEDers should be aware of that fact.

MtD

Offline xyahka

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Re: Need your perspectives about my situation....
« Reply #15 on: August 03, 2007, 04:51:27 PM »

Hi Matty, thanks for writing... i guess it would have been better if you didn't exaggerate saying i reproduced "the whole thread". Well up to you. Today morning after reading what you wrote, i wrote to someone from Poz Magazine explaining the whole thing. I talked to my sister and a friend and they told me it would be good to also post my comments in here.

So here is partially what i wrote.


--------------------------
Hi... i think i did a big mistake and started a big trouble....

You will kill me :(.

Yesterday night, i read a post in poz forums from a guy who is facing deaf after hiv... i wasn't sure if it was hiv related

(never heard about it)... i pm some old members of forums to ask them if this was possible, i was not aware of such risk but

when i had finished pm them... they were offline already.

I was frankly nervous and shocked... i even didn't post a comment to that thread cause i didn't know what to say and i didn't

want to say "sorry... is this you are facing due to living with hiv??". As i was very nervous, i decided to write about it in

my blog... NOT about the thread of this person, but about the fear i felt and how surprised i am of knowing this is
possible. I did reproduced the original post of this person and two comments that got me equally impressed and a pm reply i

received from a forums member about this. I would like to ask you to read what i wrote http://juanca.nomadlife.org

I did though about it before posting, i mean if it was right to post the original post and the 2 comments (not sure if

posting a pm i received could be wrong). I though that since i didn't give the url to the thread (though mentioned it was

from poz forums) and since i didn't put the identities of this people in risk (since there could be millions alain, queen
akasha, christine in the world, plus in the forums they don't use their real name so in fact they are impossible to locate)

and since the post was NOT about them but about how i felt when i read what they wrote... i though it would not be bad.

Today morning i got a comment from the user matty.the.damned saying it was moot from my side to post those comments and he posted a comment mentioning my blog in the original thread this guy started.

Then i came to realise i perhaps did it wrong, perhaps i should have only post the url link to the forum so my friends could

read what i was talking about. My personal blog (the one i have since over a year ago and way long before diagnosed) is read

by my friends only, i don't promote it anywhere cause it is a personal diary for me where i write about my feelings and what

makes me fear, i did disclosed my status there long time ago and i have found some of my friends who read it have understood

the way i face the diagnosis and got to see hiv from a different point of view. The reason i write it in english is because i
have friends from ukrain, russia, estonia, ecuador, usa, and other places who randomly check my blog and post comments. I

have also wrote in my blog several personal experiences and telling others how i felt to try in some way to break the stigma

they might have towards diagnosed people. Still with it, my blog does not receive many visits i think 20 per day (since it
is intented only for my friends so i don't promote it).

Well, the thing is that right now... i am feeling bad. I never meant to hurt anyone nor to "put things for other consumption"

like matty.the.damned says.... i was writing about something i just discovered yesterday night and i didn't know before and

that got me extremely scared.... i wrote to queen akasha, aztecan, basquo asking them about this....i mean if it was possible

to be deaf due to hiv. An Ecuadorian friend was the one who confirmed it to me... and i was terrified. To write my blog is a

way of venting for me, i could not vent this in the forums since in other times i have heard others hating "sky falling"
attitude, which was a bit of what i felt last night...i still have a lot to learn about this disease. The other reason behind

my post was to tell my friends who are not poz, that they should be more considerated with people who are deaf, cause i

understand it could be my case in some years...

You know i could have only post the url address and it would perhaps have been better, anyways whoever who is not member of

the forum only a guest could read the thread and understand what i was talking about. I just though that if i would have done

it, people could have seen for instance queen akasha's pic, and i didn't want to put them in exposition. So i wrote about
something i read and touched me... once again i didn't write ABOUT THEM, but ABOUT HOW I FELT DISCOVERING I COULD BE DEAF,

BLIND after some time.

In my same blog i have copied posts from Regan and Lisa for exemple but i have provided a link for their blogs because i

think it would not be a problem if others find them and their blogs, also it was a way to promote them. I didn't do that this time cause it was not my intention to promote anything, i was only coping something i read somewhere on internet and got me
impressed... if you read the post it would be easier to understand.

Yeah, well perhaps i did it wrong but i didn't find it wrong nor risky for anyone when i wrote since i didn't provide a way

to locate them, and it was not about anyone, but about an opportunistic infection and how it could affect me after some time.

well... i feel very bad now, i hope others will understand i didn't mean to hurt anyone.


Sad JuanCa
------------------------------------

Apart from this i have to say three things...

1. This post didn't put people's identity/anonimity in risk, the post was not about cowan or queen or christine... the post was about cmv and how afraid i am of becoming a blind/deaf person. I understand now some of the above mentioned might feel angry... so i offer my deep excuses TO THEM as it was not my intention to hurt/offend them.

2. Matty's comment is over promoting a blog that is not very popular on internet, cause it was meant to be only for my friends. Anyone who read it won't be able to locate anyone in here but might understand and see cmv and aids from a different perspective. Once more.. the post was not about the lives of specific people... the post was about WHAT I DISCOVERED ABOUT CMV ON INTERNET and GOT ME SCARED. I could have done same post even without being member of the forums but only guest in here... in fact, the forums have more "guests" in here on daily basis than my blog....cause mine is for personal purposes.

If as a result of this, you want to ban me from the forums or even delete my blog ....feel free to do it... You know, i have enough troubles in my life learning to live with hiv, dealing with negligency of my ID Dr and my debts to add one more caused by the exaggerations of matty.the.damned... although i just hope you understand things are not like matty.the.damned showed them. In any case if you are up to deleting/banning me in some way... just be kind of letting me know by email. I gave all my contact info published so if anyone feels like emailing, insulting, complaining... be my guest. Have no troubles with it, i am an addult therefore responsible for my actions and its consequences. I don't hide.

have a good day.
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline Ann

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Re: Need your perspectives about my situation....
« Reply #16 on: August 03, 2007, 06:00:11 PM »
Juan,

Matty didn't say "whole thread", he said whole posts from this thread. Big difference.

I interpret Matty's post as questioning your cutting and pasting people's posts and publishing them elsewhere on the internet without doing them the courtesy of asking first. I don't think I'd like it if you started taking my posts elsewhere in this manner without asking me if I minded first.

And one thing I've got to say - your command of the English language sure seems to vary, does it depend on your mood or who you talk to? Just wondering.

Anyway, Matty wanted to warn people this was going on and I probably would have done the same. It's just rude to use what people write without asking them first. Not only that, but you don't say what reply you got from Smart and Strong. You do know they OWN the content of these forums, don't you? I have a feeling you didn't ask them about cutting and pasting content either.

Anyway, this is Alain's thread, so if you want to discuss this further, please use a new thread or the PM system. Let's not hijack this thread further.

Ann
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline xyahka

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Re: Need your perspectives about my situation....
« Reply #17 on: August 03, 2007, 06:40:10 PM »
I don't think I'd like it if you started taking my posts elsewhere in this manner without asking me if I minded first.

I have shared part of the last post in your blog in my Spanish Blog. Is it a big trouble? I also read part of your last post in spanish in a sensibility trainning i was speaking about only because the last post in your blog was good to make others reflect. Didn't know it was such a big deal being that it is exposed on internet and everyone is able/allowed to read it. Although you know... in latin america many people don't acces internet.

And one thing I've got to say - your command of the English language sure seems to vary, does it depend on your mood or who you talk to? Just wondering.

I guess you should ask my English teacher, or read the thread about oral sex risks i started long time ago.. i think i already explained that and mentioned my English is quite good (few orthography problems i am trying to improve).

Not only that, but you don't say what reply you got from Smart and Strong.

I haven't got any yet. That's why i didn't mention it. I didn't want to wait before excusing myself.

You do know they OWN the content of these forums, don't you? I have a feeling you didn't ask them about cutting and pasting content either.

No i didnn't know. Together with the troubles to access internet comes the fact that we in Latin America are not very much aware of "virtual laws" and stuff like that. Then sorry to Smart+Strong again... i just though that as everyone can come in and read... i could just mention what impacted me and got me shocked from discovering the pontential danger of CMV. I want to underline... it would be same thing if i had only posted the url of the thread... anyone anywhere could have come in and read. The intention was not to speak about someone's life but about how scared i was with what i read and to explain what got me scared i had to mention it.

I came in only to answer your questions dear Ann. I agree in not hijacking this thread anymore.

Juan Carlos
13/03/07 1er diagnóstico /Peso: 79kg
19/04/07 CD4: 494 /CViral: ?? /Peso: 80kg
19/07/07 CD4: 659 /CViral: ?? /Peso: 79.5kg
06/03/08 CD4: 573 (después de meses muy deprimido) /CViral: ?? /Peso: 79kg
17/09/08 CD4: ?? /CViral: ?? /Peso: 84Kg
06/02/09 CD4: ?? /CViral: ?? /Peso: 85Kg /HCV: Neg /HBV: Neg.
07/03/09 CD4: ?? /CViral: ?? /Peso: 87Kg / Gym 3días/semana y Natación 2días/semana.
12/05/09 CD4: 470 /Cviral: ?? /Peso: 87Kg.
08/07/09 CD4: ? /CViral: ? /Peso: 77Kg.
09/12/09 CD4: 510 /CViral: ? /Peso: 78kg. No medicinas aún
10/01/10 CD4: ? /CViral: ? /Peso: 76Kg.
15/05/10 CD4: 320 /CViral: ? /Peso: 76Kg.
01/02/11 CD4: 291 /CViral: ? /Peso: 78kg.
05/05/11 CD4: 366 /CViral: ? /Peso: 78kg.
27/07/11 CD4: 255 /CViral: 138000 /Peso: 78kg.

Disfrutando y aceptando una nueva vida...

Offline Queen Tokelove

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Re: Need your perspectives about my situation....
« Reply #18 on: August 03, 2007, 07:04:40 PM »
Forgive me for hijacking this thread but I must give thanks to Matty for bringing this to my attention. Good looking out. I am a bit disturbed to find my posts being posted somewhere else even if it is a personal blog. I would've appreciated being asked first which I wasn't. What I was asked was if hiv can cause hearing loss, big difference no matter what language you say it in. >:(
Started Atripla/Ziagen on 9/13/07.
10/31/07 CD4-265 VL- undetectable
2/6/08 CD4- 401 VL- undetectable
5/7/08 CD4- 705 VL- undetectable
6/4/08 CD4- 775 VL- undetectable
8/6/08 CD4- 805 VL- undetectable
11/13/08 CD4- 774 VL--undetectable
2/4/09  CD4- 484  VL- 18,000 (2 months off meds)
3/3/09---Starting Back on Meds---
4/27/09 CD4- 664 VL-- undetectable
6/17/09 CD4- 438 VL- 439
8/09 CD4- 404 VL- 1,600
01-22-10-- CD4- 525 VL- 59,000
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Offline Iggy

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Re: Need your perspectives about my situation....
« Reply #19 on: August 03, 2007, 08:01:02 PM »
Perhaps he is having ambivalent feelings about the long range possibilities, or maybe he is a bit flubbered by the chasm between your worlds. Give him(and yourself) some time to work through this before you get too upset.
Maybe it was just an off evening for both of you.
I am quite sure I would feel as you do, especially considering you have had a full hearing life, and still adjusting to the newness of your hearing loss.
Have you researched whether there are any deaf social clubs near you?
I could hear your sadness, and frustration coming through loud and clear in your post, and wish I could just put my arms around you, and give you a kiss, and a hug.
Hang in there.
Maybe give it another try at an outdoor cafe' for lunch.......just a thought.

Wow - Love Lisa's take and advice and fully agree.


Offline tigger2376

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Re: Need your perspectives about my situation....
« Reply #20 on: August 07, 2007, 06:39:34 PM »
On the original point of this thread, I can't begin to understand, but know how I would feel if I couldn't communicate as easily with those around me. All the advice given seems to be heartfelt and thought out, so I'll only add that sometimes a kiss,a touch or just being observant of someone else can be the biggest mode of communication. I certainly wouldnt be embarassed if you felt comfortable writing things...and think of all the naughty things you could put on paper...and no one could hear you! I AM going to say this guys not right for you, but you know that. Just because you cant hear doesnt mean you cant communicate well, as you've shown by your articulate and sensivite thread. I hope you find the support and relationship you need. In the UK theres a very large national organisation, I think called the RNID...might be worth seeing if they can put you in touch with allied US people? Will check name and try and get a link to you.
jo
(and on other matter, this place is based on trust, doing silly,discourteous things like that,especially when someone has taken the huge step of pouring their heart out is just plain unmannerly,nuff said)
I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

Offline DCGUY2007

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Re: Need your perspectives about my situation....
« Reply #21 on: August 09, 2007, 03:52:07 AM »
Just read your post. Last year I dated a deaf guy for the very first time in my life. I was embarrassed because I didn't know sign language at all. we wrote things back and forth on paper. I didn't have a problem with him being deaf. The problem was there wasn't enough physical attraction between us two. He was younger and at 60mph in two seconds and I was still at 0 mph. With him being deaf and my not knowing sign it was very difficult at times to explain and write things fast. At the same time it was one of the best dates I had. He was so nice. I wish it had lasted. My point to all of this is maybe the guy you were seeing didn't really leave because of your being deaf it may have been any number of things. Maybe he gets bored after so many dates or maybe he is still trying to get over someone else. Who knows. I do know rejection is very difficult though. I have had plenty of rejection in my life. So I understand. Sometimes looking back though I realize the person who was doing the rejecting was just a totally fcked up individual. I'm sure as you  move on in life you will find someone who will be right for you. One persons loss is another persons gain.  ::)

 


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