Life As Late Deafened with NF2

Sunday I was letting my loss of hearing get me down. Don't misunderstand. I don't lament about not hearing music and sounds. It is the loss of privilege that comes with hearing that once in a great while makes me sad. With NF2 there are so many things to deal with that really the loss of hearing (at least for me) takes a backseat. I get more of a longing for the sense of balance I once had, not having to worry about my vision, falling asleep without having to worry about using eye drops and an eye mask so my eye does not feel like it was tossed out in the open on a hot desert highway upon waking, and normal vision which does not feel like I am cross eyed after running or reading for a longtime or viewing life through a shaky camcorder all the time.

But every so often I miss the privileges I had as a hearing person that so many take for granted. I miss being a part of that exclusive "club".

When thinking of what I have lost regarding my hearing and can never have back it is probably different than you would expect.

#1
(This is the biggest one as it continues to irritate me and so for the most part I avoid the situation all together as much as I can.)

- making quick phone calls.

Making a quick phone call is now nonexistent. It is actually a hassle and takes more time. First I have to dial relay. Then I need to wait to connect to an operator. Then I need to remember to tell the operator to make sure to inform the person who I am, that I am deaf, and what I am calling for. Otherwise I get hung up on if the person has no experience with relay and thinks I am a telemarketer. Then I have to remember to tell the operator if there is no answer I would like to leave a message. Otherwise I have to inform the operator after making the call and have the operator dial again as relay is too slow the first time and the answering machine hangs up. Sometimes despite informing the operator that I want to leave a message the person forgets and we have to redial anyhow. There are times when the operator has their keyboard in "turbo code" and I get nothing but nonsense numbers and characters on my screen instead of logical conversation. Other times the operator may hear something wrong and type something that does not make sense to me. Example: The person I called is talking about their camp - saying "our camp". But the operator types to me "art camp" so I am confused and think the conversation is totally about something else. Another time the operator typed a message that "Putrid Sound Sailing" was calling me instead of the proper "Puget Sound Sailing". On one occasion I was talking to a man who I thought was my father and then he asked me who I was. Apparently the operator dialed the wrong number but I did not know until talking for awhile when the man inquired my name. (LOL Imagine if you are a guy some lady calls you up calling you dad!! In some cases that would send the person into a state of shock or panic.) On my end the operator just types to me that a male has answered the phone as I cannot hear the voice. It has happened other times where the operator dials the wrong number and if they happen to type what number I am calling I have no option but to hang up and get a new operator as once the call is going through the operator cannot hear me while the call is being connected.

Ok, so that is with a land line from home. Now think of how complicated it gets going elsewhere. I have a device to use with a payphone but it never did work well so I just don't have the ability to call from other places that do not have a special Voice Carry Over phone. Note: In the nearly 4 years that I have been deaf, I have never known any establishment to have a special VCO phone for late deafened adults to use.

Oh yeah! I forgot to mention too that the relay system does not work well with audix systems. You pretty much have to connect to a live person which is not always the case nowadays.

Now to the cellphone. Obviously an ear bud cannot be used to make a cellphone call while on the road. So no making calls while driving. So I cannot make a call if stuck in traffic or running late. That is just tough luck!

So what do deaf people do? We use text phones to send text messages or emails. While the younger generation can probably type like mad, this gal's frumpy fingers press multiple buttons at the same time. The other option is using the tiny stylus which is time consuming as well.

So like I said, gone are the days of making quick calls.

#2
No longer can I lead an exciting and lively inquiry discussion with students. While I can still speak, I am unable to hear the quick responses which spur spin off thoughts and continue the flow of the dialogue and ideas.

#3
I don't have the freedom to attend anything I would like and be interested in. For example, if the local community center is having a speaker come present a slide show and talk about his/her foreign travels I can't take part in it. There are certain guidelines on who provides accommodations and for workshops or presentations which are free or a very minimal fee, the cost of accommodating would be a financial burden. Thus, everything is not open to me like it once was. I am no longer part of the "exclusive club" with the hearing membership for admittance. So all these free presentations and workshops on a variety of interests and hobbies no longer an option for me.

#4
It stinks to be referred to differently. In some cases I feel as though I am seen as a mentally handicapped person in which only certain people are qualified to communicate with me. "Tell her such and such" somebody will say to the relay operator while on the phone. It is so annoying to read that. The person is having a conversation with me but talking to the operator instead so I read on my screen "Tell her to do this or that".
Then other times I have to wait among hearing people for an unqualified person to relay to me in sign language what was being discussed in perhaps a 5-10 minute conversation. Can you remember everything passed along and said in 10 minutes and then recall how to convey that in another language?
I was very social so it sucks to not be a part of that anymore. I have always liked to get all of the information so it is bothersome to know I am only getting bits and pieces.

So I miss the freedom of having access to information as I did before and being able to intermingle easily in social settings. Sometimes the people the late deafened interacts with change too as it becomes more of an effort with communication that not everyone wants to pursue. While some late deafened have have been informed of the obstacle very bluntly and as a matter of fact that the relationship cannot continue, others will just phase out having less contact with the late deafened person.

Nearly everyone with hearing loss experiences this change in some degree.

Despite all of these losses that cannot be changed, I have to just accept it and move on. It is like taking a fall which cuts open your leg and leaves a deep scar. You must pick yourself up and continue the walk. When the milk has spilled from the picture onto the floor, one can't sit there and cry about the wasted milk which cannot be retrieved. The only productive option is to clean it up and make do.