I was tired yesterday...

...because I'd my cochlear audiology appointment.

I'd let her know my struggles etc. But it seems they had already decided they were not going to touch my mapping nor tweak it again for a very long time because it was decided my brain would not be able to deal with any more of this.

Actually I had already decided to tell them this before I went in because I had realised the same thing. Brain had been tested to its limits of endurance with that last mapping.

So, basically I am told that this is it...this is as good as it is ever going to get.

This means she said...

• I get the current sounds in the house and garden as many of you already know.

• But human speech is another matter. She said it is never going to work in groups of people (Brain will not be able to figure out the words), but it may work if I am in a one to one situation and in quiet surroundings...however this will only be with someone I see on a regular basis, but not someone I only meet up with intermittently.

• She also told me I will never be able to listen to music because the implant is not designed for that. And she greatly emphasised that I will never be able to form an emotional attachment to music.

I can't help it, but I am crying as I write this...she said more yesterday that was not hopeful...

I want much more than this, and my soul yearns for an emotional attachment to music.

I also don't agree with the prognosis I am given.

I told her that. Basically she implies I am in denial. I tell you one thing...I am not bloody in denial.

It takes me back to being a school leaver and my parents telling me that I will never be able to get a job because of my profound deafness. And telling me that I will have to depend on my parents for the rest of my life.

That was my idea of hell. I tried to get jobs, but both my parents went in and told them I was deaf and I lost the job.

I may be profoundly deaf, but my speech is very good because of an enterprising old lady who taught me to speak by blowing raspberries on balloons, and my hands on my chest and her chest to learn to speak through vibrations. I was about 7 years old when I started to learn to speak.

So then I applied to college to get some education, and I got a place...but...when it came to apply for a grant (which I needed) my father stepped in unknown to me and told them I was deaf, and I was called in for an unexpected medical, and then refused the grant on the grounds I would be wasting their money because I wouldn't be able to learn because of my deafness.

My father said he was only looking after me to stop being disappointed with life. And they would look after me at home.

I saw it as the ultimate betrayal. The wild uncontrollable child I had been before the age of 7 before I acquired speech, returned.

I left home. Some of it was hitchhiking, some was sleeping on park benches being moved on by the police, other stuff to get food when I had no money (you guess that one), hitchhiking to London and discovering life there. I was lucky, on these travels I only met kind people who were nice to me.

There were a few hairy hitchhiking experiences I admit, but I was good at taking care of myself.

At some point I managed to do quite well working and no one realised I was profoundly deaf. The telephone was a problem especially when I worked my way up the ladder and became a manageress of a dry cleaning shop, so I had to leave while I could still get a good reference. I loved working in the printing industry. Really I was only employed as gopher/tea girl. They knew I was deaf, the only place I think I told I was deaf because it wasn't important to the job. The men were kind to me and taught me screen-printing, lithography, all kinds of printing stuff. I was allowed to use nearly everything. Obviously as I was a woman's they couldn't employ me officially because women were not allowed to join the trade union then.

Anyway, the point is, I feel like my back is against the wall again.

I feel more deaf with this cochlear implant than I did before it when I relied totally on lip reading, and strategies when needed to hide my deafness when it was important. I never regarded myself as a deaf person before. But now I feel a deaf person with the cochlear implant.

So yesterday after my appointment I felt unbelievably tired and exhausted and had no energy.

Something the audiologist said at the end of the appointment got my goat...well it was a few things actually. I was explaining and asking why it was when I listen to songs with the words, that I can't make out the words without the printed word. And, the one that bugs me is "Bridge Over Troubled Water", where the printed word says '...darkness falls..' but my Brain hears it as '...Dorothy's garden'. No matter how many times I listen to it on repeat and look at the words can I get Brain to say what the words really are. There are lots more words like this.

Audiologist explained that basically Brain has had no sound recognition ever. So it has nothing to use as a baseline, and Brain uses a complicated system of odds and ends at it's disposal and comes up with its own interpretation words from those sounds. There is no way, apparently, of figuring Brain out over this.

She told me other things I would have problems with, and I can feel that internal wild child returning.

No one tells me can't or impossible or problems. Those words never exist for me. They still don't.

In the end, when I wasn't accepting what she was saying she then told me that just listening on repeat for half hour or an hour daily was not ever going to work. It would have to be, in order to program the brain (because it has never done this before), to listen intently hour after hour after hour daily day after day and week after week, and even then there would be no guarantee.

She thought she was putting me off...

Now, I am realistic enough to know in most things there are restrictions and limitations, especially with the cochlear implant BUT I believe there is no way I have reached my fullest potential with this yet, whatever that might be.

I also 'know' I can do more with human speech in these noisy crowded situations. So instead of believing what I am told to believe about the implant and processor's capabilities in these situations and Brain's expectations of them because of what I am told, I am going to explore a way of training Brain to deal with these situations so they do not cause the stress and distress I feel now in them.

But the main thing is music. My soul wants music. And I will get that music. I want and need that emotional thing with music. I hear music internally. I always have. I understood it to be music that I hear. I did check with a different audiologist long ago and was told it was not a hallucinatory effect, but something else. I cannot recall what she said it was, but that it was okay. I also see it as being an orchestra although I don't see people playing.

When I first had my implant some years ago I bought a keyboard because I wanted to play and listen to music. But when I tried a) you can't just get on a keyboard and play and b) the notes sounded awful and no matter how many times I tried each individual note didn't sound of anything or my belief of musical notes. Also the audiologist at that time said I would never be able to hear the notes, and that it was impossible for me to expect to learn how to play. So somewhere I gave up, apart from a couple of years ago when I got it out again and found the sheet music 'Lily Marlene' and I was going to try and play it. Why 'Lily Marlene'? Because I had seen the old sheet music on my Grandma's old piano, and the first pub I bought a drink in legally, there were oldies all round the pub swaying from side to side to a man on a piano, and they were singing 'Lily Marlene'. I was lipreading them obviously then! But the atmosphere of that pub was amazing...

...that keyboard is coming out in the next few days to see what it sounds like with this mapping...

...oh, by the way..it's my birthday today...and the start of a whole new chapter...