Today was difficult

[Nicole222]

I had to go to the cell phone store to get a new phone and also to the grocery store. I had someone drive me.  Anyway, it was my first time out in public (I've been to my parents house) and the SSD really got to me.  I told the girl in the cell phone store that I couldn't hear on one side and she continued to whisper to me    That was frustrating.  Then, the grocery store.  I felt like I heard an ocean on the left and just loud confusion on the right.  I couldn't tell where sounds were coming from and it was just overwhelming.  I felt like I was going to cry.  My dad was with me and I had a hard time hearing him in that environment.

I guess, just being in my house, I've been thinking "This isn't so bad"   But, today made me second guess that. 

Anyway, do you adjust to it--or is that pretty much just the way it is?

Thanks a bunch, Nicole

[Kaybo]

Nicole~
I'm sorry that happened to you.  I'm sure that was frustrating!  I think that what I did was just think "This is it...I have to make the best of it."  When I first had my surgery, we didn't know about BAHA or anything but a type of TransEar hearing aid that wasn't supposed to do much good (especially for a teacher) and so I thought I didn't have any options.  Dave & I were just talking last night about if I felt overwhelmed b/c of noise - I was telling him many here had commented on it - b/c we were in a SUPER noisy restaurant.  He was having trouble hearing too.  We don't remember me ever having to leave a setting because of the noise, but I wonder if it was b/c my tumor was so large and I had gradually acclimated myself to those situations??  Who knows?  I have never had any trouble with people NOT accomodating me b/c I couldn't hear BUT I am am pretty assertive about it.  If you tell them you don't hear out of that ear and they still whisper, say "Could you please speak louder, I didn't quite catch that!"  I do think it gets easier as you go along b/c you learn to "set" yourself in ways to help.  My husband and mom both automatically move to my good side when we are walking (Dave even did that on a business trip to a colleague b/c he was so used to automatically moving).  I have become a master at positioning myself so that the other person is on my good side.  I still cannot identify where sound comes from.  Just yesterday I was at the Dr. and they called me for bloodwork - I looked to the back where they call the patients for the Dr. but when I didn't see anyone I looked elsewhere and saw the lady waiting on the other side of the room - I just said, "I don't hear out of 1 ear and I can't tell where sounds are coming from!"  End of story...she may have thought that weird but it didn't bother me!!  Just cut tyourself some slack and have a good attitude that it is something that you have to experiment and learn to accomodate to the best of your abilities and if you can't get used to it, know that there are things out there now that can help you!!

Good Luck,
K

[Jim Scott]

Hi, Nicole:

I'm sorry to learn of your unpleasant experience as 'new' SSD person.  It does get better in the sense that, as Kaybo mentioned in her post, you eventually learn to adjust and accommodate the handicap.  I do pretty well but I slowly lost my hearing in the AN-affected ear for some time prior to my AN diagnosis so I was already accommodating it and didn't have much of an adjustment to make, post-op.  I lean in and try to turn my 'good' ear toward the speaker when dealing to clerks, cashiers, etc.  I'm not afraid to ask them to speak up, if necessary.  I now automatically turn - just a bit - to position myself with my 'good' ear toward a person I'm speaking with one-on-one in any kind of setting that has  noticeable ambient noise (church, store).  My wife has long since adjusted to purposely walking on my 'good side' (my right) almost anywhere we go together and she doesn't get annoyed if I have to say 'what?' a lot...she knows why I didn't hear her.  In really noisy environments, such as a busy restaurant, she speaks up and I lean forward or, depending on the seating arrangement, she makes sure to sit on my 'good' side.  In a wedding reception or dinner party situation, I tell the person sitting on my 'deaf side' that I'm deaf in that ear and cannot hear them so if they want my attention, to tap me on the shoulder and I'll respond.  I've never encountered any problems doing that. 

Unfortunately, discerning sound direction will remain a problem.  I'm used to doing a 360° turn to locate who has called me when I'm in an environment where the speaker isn't visible and obvious.  In department stores, where my wife and I often go separate ways, we carry Walkie-Talkies to 'find' each other, which beats her yelling my name while I do a graceful but still funny looking pirouette trying to locate where she is.  Driving, I can't tell where an ambulance, fire truck or police car siren is coming from until I can see the vehicle.  I usually just pull over, if possible, until I can ascertain the direction the emergency vehicle is coming from (behind me, on the opposite side of the road or from a side street).   If my wife is with me (frequently but not always) she will immediately tell me where the emergency vehicle is, i.e. "it's coming up behind us" or "it's on the other side", etc.

I may be the exception but I've found SSD a handicap but far from a disability.  It does take a period of adjustment and time to learn some coping mechanisms as well as some cooperation from your immediate family but eventually, it does get better.  Not your hearing in the affected ear - that's gone - but your ability to cope with SSD.  I trust your adjustment will be rapid, Nicole.  Please don't allow one unpleasant experience to discourage you.  I do just fine - and so will you. 

Jim

[Debbi]

Hi Nicole-

Being new to SSD myself, I can't offer the same experiential advice that Jim and Kay can offer - but I can say that I understand.  I have limited my exposure to potentially noisy situations, but I found the grocery store to be pretty overwhelming.  I was telling Willie and my parents that the best words I could use to describe the feeling I had in the grocery story were "insecure" and "vulnerable."  I am so used to being in command and control, and it is very unsettling (even frightening) to feel so out of place in what was always a safe and predictable environment.  I expect that the first few months of this will have quite a few unnerving situations - I am getting ready to venture out to a favorite (albeit noisy) restaurant in the next week or so - I am feeling all sorts of anxiety about this, but know that I have to try it. 

And, of course, I am not ruling out BAHA and/or Transear if I find that I just hate SSD.  One thing I do know, however, is that none of these hearing devices alleviates the ambient/background noise problem.  My beloved dad has been SSD for years, and he has been a wonderful support to me as I learn how to navigate this road myself.

Lots of good thoughts coming your way, Nicole.  I am glad you posted this.

Debbi (learning how to say "what?")

[Brendalu]

Nicole,

Adjusting to SSD is difficult, in my opinion.  I had perfect hearing until the AN was removed.  I am coming up on my third ANniversary and I still have to remind family and friends that I can't hear them when they speak to me on my right side.  Finding my cell phone when it is ringing is a game that I have learned to enjoy!  Most of the time it is in my pocket and it takes me a while to figure it out!!
I still avoid noisy situations and even though I have a hard time hearing it, having the TV on above a certain level drives me nuts!
You are much younger and I think that it will all come together for you and you will be very successful in the adgustments you need to make.
The best part about being SSD is that I don't hear my husband snore any more.  I sleep on my "good" ear and no noise is great!  We can always find good in everything if we look hard enough.
I think that your outings will get easier in time.  Sales people won't, but you will learn how to handle them!
We had a very funny thing happen the other day.  My husband and I were shopping for patio furniture and everywhere we went we encountered sales people who only wanted to stand on my "bad" side even after explaining to them that I couldn't hear what they were saying.  My husband finally blurted out,"My wife is deaf!"  The guy immediately started signing and I looked at my husband in horror (I don't sign, I need to learn) and my husband looks at the guy and says, "She doesn't see well either!"  I said, "I read lips if you speak slowly and articuately................he was from India with a very poor concept of the English language.  The manager came over and helped us and I apologized to the sales guy on my way out.  

 Smile, it makes everything better,
Brenda

[oHIo]

Nicole,
Don't be discouraged.  According to my calculations, you are only three weeks post op.  At three weeks, I went to Walmart with my family as my first outing.  The experience was enough to spook me into thinking I would never be able to go to another store again.  I was overwhelmed by all of the sounds and very visually overstimulated.  I couldn't wait to get out of the store and clung to my husband and son, fearful I would get seperated from them and not be able to find my way out of the store.  I pictured myself sitting in the middle of an aisle, crying hysterically that I'd lost my family.  

I am now 10 weeks post op.  I drive, have gone back to work, and have been back to Walmart several times alone.  It is not so overwhelming now.  I still have to ask people to repeat themselves or stand on my 'good' side.  I watched a DVD with my husband last evening and he had to stop it every 2-3 minutes to interpret what they said.  Turning up the TV only garbled the sound more and captioning wasn't working.  Family and friends will learn to help make accomodations for you.  Remember this is new for them too.  

I agree with Kaybo that you need to cut yourself some slack.  You are barely three weeks post op from brain surgery and newly SSD.   The healing process from your surgery takes a while and you are still at a very vulnerable point in the healing phase.  You will learn ways to adapt that will work for you.

[zeek]

I feel for you! I know what your talking about. For the first 2 months I was on so many meds, I thought I could hear out of both my ears, so nothing bothered me. But now that I have been drug free for over 40 days now, I know there is no sound in left ear. Every morning I go to the " local coffee shop/gossip shop, to visit with friends for about an hour or so. Everyone knows of my problem, so I usually just sit at the head of the long table. That way I hear really good until everyone gets to talking at once. That's when I pull out my ear plugs from under my collar and put them in half way. That way, the noise doesn't bother, but yet I can hear the close conversation that I want. I do wish I could buy a "decreet" pair that I could wear in noisey resturants, church halls, ect. I know my ears are still adjusting after only 3 months since surgery. I truely hope you can cope with this new situation your now in. If I can, I know you can. All my life I've been used to wearing ear plugs because I've been very careful to protect my exelllent hearing. Before my operation I still had 82% hearing in my tumor ear. So, it is depressing at times to think of what I lost, but they saved my life, so I guess that's what we have to look at. Our thoughts and prayers are with you!

[LADavid]

Hi Nichole
Sorry you had such a difficult time.  I know how frustrating it is.  I've been SSD for the most part for the past 23 years.  I wear a hearing aid in my good ear to hear at all.  You do make adjustments over time to compensate for the hearing loss -- I avoid situations where I know I will be annoyed -- like loud restaurants and nightclubs.  I seek the best position at a table to hear the most people.  You will also find that you learn to read lips -- it just happens over time.  And you'll get accustomed to turning your head slightly to hear better.  But the one thing I will not tolerate are mumblers and tiny-talkers.  There is absolutely no excuse for it.  If the person isn't going to speak up, I'll say pardon a few times, what a few times, then just tell them I have a problem hearing, you're going to have to speak up. If it's a store clerk, I'll ask to speak with another clerk.  I refuse to let their problem be my problem.
Now there is a funny side to all this -- the other day my daughter and I were returning from an out of town trip.  She had to stop for a new tire.  I was waiting out side while she paid for it I didn't notice that she had returned to the car and was ready to go since I was faced the other direction.  I kept hearing her say "Dad, Dad" -- almost yelling.  It sounded to me like the Coke Machine was calling me Dad.  And I kept saying "What" to the Coke machine.  My daughter was laughing so hard she was crying and couldn't drive.
Now there is one very important thing you need to do that I will tell anyone who is SSD.  Protect the hearing in your good ear.  I didn't.  Stay away from loud noises.  And if you know your going to be around loud things, wear foam ear plugs.
Things do get better as you adjust.
Best wishes.
David

[oHIo]

Brenda,
I'm chuckling at your salesman story.  

I was at work this week and saw one of my co-workers, who sits in the cubicle next to me, leave.  Thirty seconds later, I heard a noise that I thought was in her cubicle, so I yelled, "Hey Amy, is that you back so soon?"  Suddenly I hear a deep voice that said, "No, it's Mark sitting right behind you." One of the doctors had come into my cubicle and sat down, waiting for me to look up from what I was doing so he could ask me a question.  He's lucky I said something, or he could still be waiting.

[Kaybo]

Brendalu~
I am laughing at your story - - it makes me think of my sweet daddy who one time when the Jehovah Witnesses came to thier door, he pretended like he was deaf.  They came back in a couple of hours with an interpter!!  Silly daddy...

Nicole~
I remembered too that we have Dish network and it has a button on it that rewinds live tv about ten seconds -- I use it ALL the time because I just miss a line here or there.  It's wonderful and I am sure all the other companies have that feature too!  Just a thought...something that makes life easier!

K

[Debbi]

Brendalu - had to laugh about your husband's snoring ... I was delighted (okay, maybe that's too strong a word) to discover that when I lay on my "good" ear, I no longer hear my sweet hubby's sonorous snores - ah, bliss! 

I think we all have to dig deep to find the upsides to all this - but I now they are there if I look hard enough!

Nicole, hopefully time will help with this - for both/all of us!

Debbi  ... "huh?"

[Nicole222]

Hee Hee   I wondered why my husband had stopped snoring since my surgery    Sometimes, the silence IS golden

[Kaybo]

Nicole~
It is GREAT for the hubby to have to get up with babies/kids too..."I didn't hear them..."          

K

[leapyrtwins]

Nicole -

I'm sorry you had a frustrating day.  As lot of others have said you will adjust to being SSD in time; you're still new at it 

Some don't adjust as well as others - and for us - the BAHA and the TransEar are both good options. 

Give it a few months before you decide what direction you want to go in.  If you should find you are interested in the BAHA, there is a very good demo that your doctor can show you.  I found it quite impressive.

Jan

[Pembo]

Nicole, I didn't read all the responses, but I remember my first outings and they were similar to your experience. Things do get better and you do adjust. Stay strong........