I was pretty depressed when I wrote my last entry because I thought I had no options – I certainly didn’t have any on paper.  But I’ve learned something: Life isnt always the way it appears to be on paper.  I forgot something important too – never, and I mean NEVER give up hope.  Here’s what happened:

I went to my audiologist and she spent over an hour reprogramming the Phonak hearing aids.  I could tell they weren’t going to work out for me, but agreed to give them another try.  In the meantime, she brought in the Widex and the Siemans, which weren’t supposed to work for me.  On paper, they didn’t meet my needs.  Nothing did.  If the Phonak aids didn’t work, nothing should.  But what did we have to lose by trying, was our thinking.

So before I left with the re-programmed Phonaks, which were still sounding awful to me, we decided to quickly try the Widex.  After all, I used to have good experiences with Widex before my hearing loss hit rock bottom, so let’s see how they sound now.  We put them in my ears and it was like someone turned the world right side up again!  Now the Widex are on, off or telecoil – no programs to choose from, no Bluetooth, no bells and whistles.

Without any fancy programming, without any extra features, sound was so much improved, I cried.  All of a sudden I wasn’t struggling to read lips again.  I wasn’t making anyone repeat a million times.  I was reading like I did two and a half years ago before getting the Starkey hearing aids!  (I didn’t even realize until now how much the Starkey aids muffled the sounds!)  Sound was sharper, there was no echo, the noise wasn’t overwhelming, and all my hope came rushing back.  Don’t get me wrong – I can’t hear again.  That will never happen.  But I got enough sounds to read well again.  It makes all the difference in the world.

“Can I try the Siemans too?” I asked.  “I don’t have time to program them now, so why don’t we wait until your next appointment for that,” she said.  “Pleeeeeeeeeeeeeeeease,” I begged. “I just want to see if they sound similar to the Widex because they have the bells and whistles that could really enhance my life!”  We tried the Siemans and the sound was very similar to the Widex.  Not quite as sharp, but they can be programmed and very fine tuned.   They may be what I’ve been praying for.

We ordered the Siemans and I’m getting them tomorrow.  And guess what? She decided to let me use the Widex so I could have a better life while waiting for the Siemans to come in.  This week has been so much better for me communication-wise than the past two and a half years have been. And the best thing is, I know if the Siemans don’t work for any reason, I can have the Widex.  Two options from none.  I’d say it was a miracle.

And, with that, I’m going to leave you with this little poem I’ve always lived by and forgot to remember. The author is unknown:

Don’t Quit

When things go wrong, as they sometimes will,
When the road you’re trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit,
Rest, if you must, but don’t you quit.

Life is queer with its twists and turns,
As every one of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don’t give up though the pace seems slow–
You may succeed with another blow.

Often the goal is nearer than,
It seems to a faint and faltering man,
Often the struggler has given up,
When he might have captured the victor’s cup,
And he learned too late when the night slipped down,
How close he was to the golden crown.

Success is failure turned inside out–
The silver tint of the clouds of doubt,
And you never can tell how close you are,
It may be near when it seems so far,
So stick to the fight when you’re hardest hit–
It’s when things seem worst that you must not quit.

People tend to wonder how someone who’s deaf can still lose hearing.  And why, though the person has no speech understanding, hearing aids help her read lips and she can’t read well without them.  Of course, that person is me.  I was telling someone that I’ve lost more hearing and she couldn’t understand how you can be deaf and still lose more heairng.  It’s a fair question, but when she said to me, “Can you be deafer?”  I couldn’t help but laugh.   I think it was an innocent question – after all, either you can hear or you can’t, right?

Well, no, that’s wrong. Hearing loss and sounds are complicated. Sounds are in different frequencies and can be heard at different volume levels. You can be profoundly deaf and still have a few frequencies with sounds left – until you don’t.  Which is where I am now. I’m out of frequencies and decibels.

The bright side is, I can sleep on the runway of an airport and the sound of the plane won’t wake me up. Of course the down side to that is that I’ll get run over and squished by the plane, but that’s a whole different ball game.  In reality, sleeping on the runway isn’t part of my plans.  But in reality, I’m not communicating too well. You can always tell I’m in trouble when I do a lot of the talking.  If I’m talking, I don’t have to hear and I don’t have to suffer through uncomfortable silences.

This time with the new hearing aids has been interesting.  There are moments I think I’m doing better, but overall I’m not.  But they have such amazing features, it’s frustrating me terribly that they’re probably not going to work for me.  For instance, they have a “sound recovery” system.  That means they take the sounds and move them to the frequencies that do work for you.   Like playing an instrument in another key!

Unfortunately I don’t have the frequencies to put them in so they bounce around and around and they echo.  The bad part of that is I can’t hear and they drive me crazy. The amusing part is that I can sing a duet with myself and it always sounds like I’m in a crowd!   Finally I have imaginary friends.  I wish they’d say something different though.

Well, things haven’t been working out exactly as we hoped.  The new hearing aids came in and it turns out they were only great in the audiologist’s sound proof room.  Out in the real world, they’re pretty much useless to me.  They’re probably fabulous for other people; I can see that the features are wonderful, they work beautifully and they do what they’re supposed to do.  But my hearing is too far gone for me to benefit from them. The hearing aids are wonderful – I’m the problem.  What’s that old line? It’s not you, it’s me.  And it’s really me.  I’m not happy with me right now.

I didn’t want to try the new hearing aids at first. Everyone told me they’re my only other option besides the Starkey aids and I was afraid if these don’t work, I’ll have no options and that will be the end of my hope.  Well, the Starkey aids have been so unreliable, I didn’t want to think this was it forever.

The Phonak aids have great features and so many improvements, even a nifty remote control that let me do more with them than the switch on the aid itself.  It was time.  I’ve been doing so poorly with the Starkey aids – they were breaking all the time  even after being replaced and fixed (several times on the repairs) and they still beep and cut out for no reason.  The idea of being stuck with them forever was depressing so I agreed to try the Phonaks.

There is a three month trial, but I don’t think I’ll make it the whole way. It’s just too uncomfortable.  I keep hoping with each day that passes, I’ll get more used to them and things will improve, but so far it hasn’t happened.  Disappointment is an understatement.

This is what I was afraid of.  That I’d try the only other option and it wouldn’t work for me.  Then I would be stuck with the Starkey aids I hate so much until there’s no point wearing them, either.  I’m almost at that point – they’ve been talking about a cochlear implant for awhile now, but I’m just not ready to consider that.  I’ve researched it as thoroughly as I can and right now, it’s not for me.

I’ll fight for every second more I can get out of any hearing aids, no matter how little they do, no matter how bad they might be.  I’ll fight for every drop of sound I can get.  I may be down, but I’m not out.