Tuesday, 22 July 2014

Quality of life

Imogen can't speak. She can't form words with her mouth, she can't use eye gaze, she can't use sophisticated scanning devices, and she can't sign. But she's got a very good yes/no response, and she's got a pretty good talking book (file with lists of yes/no questions to speed up the 20 questions method of communication. And she is pretty good at letting us know what she needs.

There are obviously limitations. She is reliant on someone asking the questions. It's easy to avoid asking difficult questions, questions where I'm not sure I want to know the answer. It's easy to miss her initial shout/kick/huff which means "I'm talking, come over here." And on days when she's struggling to breathe, anything other than a very fleeting tongue thrust is impossible for her. But it works for us, it doesn't exhaust her, and she surprises us regularly with what she wants to say.

Despite these limitations, Imi very very rarely shows any signs of frustration. We might get the occasional eye-roll when I'm getting the questions completely wrong, or where I'm clearly stating the obvious yet again, but she has a fine line in non-verbal sarcasm, and that'll do for both of us. So when Imi started crying one evening, and wasn't in pain, wasn't tired, and was very clear there was nothing physically wrong, it was a big big deal.

And yes, she was fed up. Fed up of feeling poorly. Fed up of being tired so often. Fed up of the breathing problems, of not being able to cope with school any more, of spending so much time hooked up to machines. Fed up of watching the same videos, listening to the same stories, watching the world go by and slipping out of the mainstream.

So we had a chat about what make life better.

And Imi decided she'd like to make something. She'd like to create something. Not a picture with a piece of paper, not having someone hold her hand and help her glue things together, but talk to something and build something beautiful.

We found an artist who works in stained glass, Sarah Glover.  And we went over to meet her. Imogen chose some glass first, deciding on particular colours, particular effects (mostly water glass apparently, with a few different opaque bits and pieces here and there). Together, Sarah and Imi brainstormed a design, Imi picking shapes and a general theme, rejecting formal designs or copied pictures, and slowly an idea built up.

We then went away, whilst Sarah did the hard work of cutting and piecing the glass together. We came back, and Imi helped to fix copper foil around the edges of a few pieces, helped to paint flux over the whole design, polished the solder and then watched (o2 removed to a safe distance!) as the piece was soldered together. We washed the glass ourselves, then handed it back to Sarah for finishing.

And then we came back again, to find this.
Not the best photo, but a clock-shaped piece of stained glass, with the sun at the centre and a carefully selected and shaped set of glass shards surrounding it. Imi's colours, Imi's age, Imi's design, Imi's choice. And a thing of beauty sending light into our house.

Imogen is pleased with it, and proud of it, and ready for her next project. It's taken a bit of tweaking, and we're not ready to start it yet, but she'd like to do something with an old clock. She wants to buy one at auction, something I've never done, so that'll be an adventure for both of us (and not at all an indication that she watches too much daytime television sometimes!), and then make it beautiful. If we can find a local clock maker (and if anyone local knows someone with clock-mending skills, do please send them our way), she would like to find a non-working clock and fix it. If not, then we will find a working but shabby clock, and polish it up and add her own ideas to how it should look.

She's very clear that she wants to start with an old clock from an auction (which is a shame, because I could find a clock kit far more easily, but hey ho), she wants a clock with a big tick, and one which she can have in her room (so it's going to have to be fairly small).

Imogen also wants to look at other people working. She is surrounded by nurses, carers, doctors, cleaners, cooks, teaching assistants, therapists and even occasionally meets a teacher. So she would like to see other people at work. I'm not sure how we will sort that, but if you have an interesting kind of a job, work relatively locally to us, and could make space in your work for her and her entourage, she would really like to see what other people do with their lives.

Imogen doesn't have a lot of energy. We are finding that one thing in a day is enough, sometimes more than enough. Too much excitement, and she can and will sleep for the next couple of days. A trip to The Barns, a walk to the park, a hospital visit, a music therapy session, and that's pretty much a full week these days. So we are also looking for things she can do from her bed or a cool spot under a tree in our garden. We are hoping that we will have a dog at some point in the future. But in the meantime, if you have a portable one (who wouldn't eat our cats), then she'd love it if you could bring it for a sneaky cuddle. She's also interested in snakes, lizards, and rabbits, although probably not all at the same time!

We can't change Imogen's future. She is tired, she is fragile, she gets uncomfortable a lot, and at the moment she seems to be asleep more than she is awake during the day (and the opposite at night, sigh). But we can make her daily life more fun, more interesting, within the constraints placed on it by her health. So if you have any ideas for mini adventures, please do let me know, and I'll see if she's interested.


Anonymous said...

I love hearing about Mog... I love LOVE how she and you redefine what quality of life is. Happy birthday Mog!
Couple of ideas: Might she be happy with an ebay auction for her clock? She'll get a lot of choice with minimal tiredness...
Also, do you know about Borrowmydoggie.com? You could register and get to occasionally borrow a local dog :) It's free too, I think.
We got approved to adopt again last month, so hopefully we will be enriching our family too, soon!

Anna in Devon

Caz said...

We have a small snake and a small and friendly (to people!) dog. We are day-trip distance away I think, and I'd be happy to make the journey. I think you can access my email address through here if you would like us to come over.

PMDPeter said...

This young lady never fails to amaze me. Her zest for life, somewhat unconventional, amazes me. I can understand that these days are getting further apart but WOW. Keep them coming Imi and for many more years.

Hilary MCKAY said...


Imi might like to watch the lovely beagle in the link above.

You know the 'petting dogs' that visit residential homes? Might one not be persuaded to also visit you.

If she has a tree to lie under in the garden, might she like to decorate that tree? Wind chimes are an obvious start, but with her imagination I'm sure she could add more. She could make it a musical tree- you can get tuned wind chimes. And I have an old Spanish sheep bell that tonks quite nicely. I could send it if you like.
Hilary (hilary@hilarymckay.co.uk)

Anonymous said...

Do you have Pets as Therapy in your area? They may be persuaded to pay Imi a visit!

Unknown said...

What A fab idea Imogen! I would love to visit people and see what they get up to aswell. Sadly I think you guys are a little too far away to come and visit me, my hypnotic embroidery machine and two very badly behaved rabbits- they would probably have a good try at eating the entourage! If there is anything I can do over the internet I would be more than happy to help though- maybe when you get your clock finished then you might ike to work with me to design something i can turn into embroidery for you :)

Anonymous said...

How about music compossing. If you have someone who knows how to use Garage Band and access to a second ipad with apps like Air Vox and Thumb Jam that Imi can "play" she could create her own piece.

Chloe said...

Happy to bring my dog max to you (we are Cotswold based so not far) Imi.
My eldest daughter Lucy is 10, and also wheelchair bound, and he is fabulous with her. I think you and Lucy would get on great x

Anonymous said...

Oh what a lovely sun catcher - good job Imi & co.

Gwen enjoys watching people make things too.
We're lucky as we sometimes go to workshops to have things made for her wheelchair. And we're allowed to watch :)

Maybe there's an 'activity centre/ day centre close to you, where adults come and do arts and crafts?

Claire said...

There is a wonderful technology called Imuse that turns even the smallest movements into digital art. I'm not sure if there is anywhere near you that does it but worth a google.


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