I had an interesting day at the Med-El Care Center (sic) in Utrecht last week with other HearPeers. I'm a HearPeer don't you know - an 'experienced user' of a cochlear implant who likes to speak about it, promote my processor, and generally answer questions anyone currently a candidate for a CI, or any interested party really, might have.
The morning was a bit of a workshop, info exchange, and to meet three newly recruited HearPeers. We've been just three of us in NL (the group is otherwise global) for a while now so it's great to now have another three. We have each walked different paths to getting a CI, have been a recipient for varying lengths of time, and are in varying age groups too. One has always been deaf, another is sudden deaf... all kinds. One girl even has a different type of implant, equally important to speak about when information is requested.
It's all voluntary and takes not a lot of anyone's time, to be honest. We answer emails mostly, not all too frequently and we attend information afternoons, either via group video calls or, like today, at the Care Center (grrr) in person. I was pleased indeed to hear that one of the new HearPeers was greatly encouraged by my answers to her emails and it was partly why she's happy to also now be a HearPeer. So it does really work, having contact with anyone that might have concerns.
Here's a link to where we can be found... HearPeers Nederland
You can change the language, top left on the page by the little flag.
The Care Center (I do so hate the spelling but can't change it ;) ) is great for all things technical and hands on, but they themselves say, with no actual experience of how it all goes... the prior talks about getting one, the operation, the healing, the switching on... they're happy that we all are prepared to answer those kind of questions for them. They try and match us up, depending on the questions asked - if it's a younger person, they'd probably pass them on to one of the younger ones, for instance - just to be able to relate better. If it's something about music enjoyment with a CI, one of us is particularly experienced in that quarter.
We could do with some men in the 'team' though. Not sure why it is mostly women - abroad too, although of course there are some guys involved - just not here in NL yet.
I gave a short rundown on my trip to Innsbruck as that kind of 'perk' might happen to one of them too at some point. They also showed the films made there (blush - they are so brilliant though, I do love them) and it was hilarious seeing them again after explaining how insane it was to be treated like film royalty. Here's the blog I did on it all earlier, including the finished ads... Innsbruck for Med-El
We all ate lunch together in a Greek restaurant nearby. It was delicious and so nice to get to know everybody a little better.
The afternoon was interesting too. Care Center (saying nowt) staff, myself, two of the three new HearPeers and three more users plus a partner, just all come together for coffee and cake and anything interesting that might occur. I'd have liked to have seen more users attend as it is always great to be 'in company', but three is ok too. There are loads more Med-El recipients out there though, so we maybe just need to reach more, somehow.
We all introduced ourselves nicely - I'm getting used to standing up the front to do this! - and as usual, every story is totally different. Never fails to amaze me. It's not like, a broken leg, ow-ow, stuck in plaster, crutches for a while, better...same every time, more or less. Not even remotely. The variety of it all is quite astounding. How gone deaf? How long before hearing aids? Whether or not to get a CI and how treated at each centre? (all different, still!) How things went? How they are now? What do they expect? Which accessories do they use? Different success rates at all levels, every step of the way. It's mind-boggling really and should definitely be taken into account by the audiological centres. I don't think they do, is my point.
The biggest problem seems (to me) a lack of coordination between the major teaching hospitals with audiological centres in NL which actually perform the operation. There are definitely areas that are entirely similar and 'to be expected' for everyone, everywhere, but still you are left to discover it all on your own. I've had my CI for almost ten years now and noticed the difference between centres early on. Mine (Utrecht) appeared to be the better one and they still have 'room for improvement'. It's strange to hear (from someone implanted in 2022) that they too miss(ed) information that could have been handy to them. The hospitals are busy, we all know this, but they seem to be missing a huge beat here. You can't, for instance, just mention *in the passing* that you need to get vaccinated for meningitis! It's a kind of important step, no?
One aspect of the afternoon (while munching apple tart) was to write up questions on sticky notes and we all laughed at my writing being the one Ren couldn't decipher. Hardihar. Must do better on that score! :) It was also funny to watch each sticky note come unstuck from the board and flutter down to the floor, one after the other as he was deciphering them. I don't even really know what I wrote or asked any more, (didn't take notes, should have) but it was very interesting, I know that much. The consensus was certainly that there are a good few points that candidates and newly implanteds need to know about before, during and early on after their implant (as above, re vaccination). I might work on that one actually. I should. I will.
All in all, a successful day, to be repeated (again) for sure, and great to have expanded the number of HearPeers. Well done to Care Center (arghgh!) Utrecht staff on that one. It was a long day, having left the house before eight and only getting home at around seven, but we were well catered for as usual, so no complaints here.
