ThedayIlearnedIspeaktoofast aka The Ear Foundation CI Information Day


Today has been exhausting, in a very good way. I’ll try and outline everything that happened; hopefully it will make some sense!

Hit the M6 at 6:50 this morning, jittery from a rather strong cup of coffee and trying very hard not to fall asleep...great start there, Abi! I’ll skip forward to Nottingham; nothing I can write can make dawdling down the motorway entertaining in the slightest.

Arrived at the Ear Foundation on the stroke of 9, a full hour ahead of the actual start time – I like to be geekily ahead of time for anything. This gave me ample time to read my InStyle and faff about with my makeup in the car whilst watching for signs of life in the (rather nice) building. Eventually went in at 9:25 to be greeted by Lorna, the Family Coordinator for the centre who decorated my top with a rather fetching name tag, very swish indeed! Whilst waiting for the action to begin I sat in the conference room (at the front – as I said, geek) and met another member of staff called Lyndsey. Lyndsey is the Education Manager and a very lovely one too; we chatted for a while and got so wrapped up in our conversation that come 10am I don’t think either of us noticed that the rest of the room had hushed up, oops. 

I made a bunch of notes in my notepad – they are as follows....
  • ·         Obliterated cochlea. Apparently this is possible. I know mine is fine but my point is this: ‘obliterated.’ Really? Is that really necessary?! Obliterated makes me think of a lonely cochlea being blown to smithereens in the middle of a field!
  • Facial nerve damage according to the surgeon: “exceptionally unlikely.” Exceptionally reassuring in my books!
  • My history of hydrocephalus may be an issue in terms of balance... ergh.
  • A priority is to preserve whatever hearing there is, there is such a thing as ‘Electrical Acoustic Stimulation’ which is essentially a thingummy that combines both a Hearing Aid and Cochlear implant, the CI picks up the high frequencies while the HA picks up the low frequencies. Since my audiogram is dismal I doubt they’ll be interested in preserving the paltry remains of my hearing.
  • ‘Journey through theatres’ – the most amusing part of this for me was the speaker’s assurance that children could use ‘fun modes of transport’ to get to the theatre reception prior to having their implant inserted. Hmmmm..... could I get away with going via one of these?.
  • A rep from Medel bamboozled us all with technical wizardry relating to the CI tuning process. My notes from this bit are: ‘set a dynamic range.’(This is the range of sounds/frequencies to be perceived) ‘T/Cs – Threshold levels and Comfortable Loudness Levels respectively. The former being the point at which each electrode frequency can be heard and the latter the most comfortable volume at which that frequency can be heard.
Lunch was fun. I interrogated chatted to the brand reps, it was quite confusing to be honest – I’m glad I’m not a parent having to decide for a child! Essentially, it was made clear throughout the day that all the brands produce implants/processors that ‘do the job.’ Their effectiveness relies wholly on individual history and performance, the number of variables involved is insane but as a rough guide, adults with a history of successful HA usage and good language skills tend to be successful. As I'm an adult I'm not going to attempt to discuss paediatric cochlear implant outcomes.

The AB Neptune is pretty cool, but the Cochlear processor is smaller. Hmmmm. Shall wait until Monday when no doubt I’ll get to play with some more samples.

The afternoon was pretty intense, mostly because of the tsunami of information from various sources and the opportunity to ask questions and share experiences. I think I’ve mentioned this already but I don’t identify as ‘deaf’ – I never refer to it and hate pointing it out. It seems really clear to me from several things that happened this afternoon that this is a piss poor strategy and one that I’ve been stupid enough to utilise. Again, I’ll bullet point my thoughts seeing as my brain has imploded from the sheer effort of stringing together words I doubt they’d make sense otherwise.
·        
      Discussion regarding communication strategies. Eg. Telling people nicely that you have hearing issues, or... talking to employers etc etc. Lots of useful points made regarding voice, I made a contribution at one point which I thought was perfectly understandable until one other lady said “Excuse, could you just repeat that... and slow down?!” Hmph. I speak fast, never realised it might be an issue! Apparently, what deaf people lack is an intuitive grasp of breath for speaking, which means speech cancomeoutasamassivestreamoflinkedwordswhichcanbehardtounderstand. Well, it sounds fine to me but now that I think about it I may have been chastised for my stunning verbal speed whilst teacher training. MEH. Anyways, I shall make a concerted effort to slow down.

      Another big issue is volume. I am very bad, very, very bad at speaking at an appropriate volume for my environment, I’m pretty sure that I have mortified/amused a great number of people in doing this. Apologies, but yay CIs apparently reduce this and enable people to adjust their volume. I think of it like this, I spend all my energy on focusing on a voice/group which seems to cut out the background noise to the point that I don’t notice fluctuations in environmental volume levels.... equals “Abi, shush – you can’t say that... he’s right next to  you!!!!” True story.

·         Heard from two lovely ladies with CIs, one of whom was also called Abigail. Huzzah! It was fascinating to hear their stories and it brought out a really good discussion of exactly how much our deafness affects us. It’s becoming more and more obvious to me that my hearing, while it hasn’t deteriorated, is seriously holding me back. I’ll freely admit to finding teaching exhausting but I love it, the thought that I could lose out on a rewarding lifetime of working with children is just incomprehensible. 
·        
      It was reassuring to hear both ladies, up till now the bulk of my research has been online but it takes seeing someone in the flesh, sitting back and totally chilled whilst speaking so clearly about the process to make you realise how much there is to be gained. 
·        
      Afterwards, I spoke to one of the speakers (speech and language therapist) as I’d noticed she kept looking at me and pointing at me whilst signing across to another lady. It turns out that she had the following to say: (I am recalling as best as I can here, I may have added humour...)
  • “Very clever deaf children have two obvious strategies, 1 – they speak very fast and 2 – they are observed as being a dominant speaker in group situations” (This is basically because we use context much more in establishing what is said and so we feel more comfortable directing and drawing conversation to what we feel comfortable with.) This rings a distinct bell with me as I remember being told numerous times as a child and teenager that I was either too domineering or too shy... hah, oh happy days. Currently, I do notice that I struggle when people bring something totally random into the mix and it takes a few seconds to ‘tune in.' I’m sure most of my friends have figured this out. Sian was an absolute master at twigging when I was faking and Peter is pretty good too. It’s probably a very bad habit that I don’t really make a big deal out of it?... God, I’m a crap communicator. 
  • “You’ll give yourself a stroke by 30 if you don’t chill out. I don’t think you blinked once in nearly two minutes at one point whilst listening!” Yay. Hmm, I think it's got to the point where I don't realise how hard I have to work to hear. It takes a total stranger to identify you're deaf simply from the way you watch closely, lean in and barely fidget whilst concentrating. The positive news is she was very impressed by my speech but her parting words were: "Botox, relax!"
To cut a very long story short I was absolutely brain dead at 4:30 which is when it all wound down. I found my way back to the car where my friend Percy Pig and his clones were awaiting slaughter. Eventually got home at 7 and am currently watching Terminator Salvation... which is rubbish. IMO.

Monday: Peter and I are going to Manchester - I shall be doing my initial assessment! 

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