Isn’t he good?

Out and about with bro  in this gorgeous weather, we have taken him to a few summer fetes and local music festivals and it’s amazing how smoothly a wheelchair parts a path through the crowds. Nick has a ringside seat from the top of a hill or near the side of the stage and people are unfailingly smiley and kind as we push our way over the grass to a good spot. I remember something like this reaction when I used to push a pram in public places with a young baby, that sudden benign gaze from total strangers and a willingness to accommodate. 

It really wasn’t like that when Nick was still walking, because that was scary and unpredictable; I was always afraid that he would fall over, and of course with the classic HD lurch, most people assumed he was drunk and to be avoided.

Now somehow he is safe. If anyone assumes anything now, it’s usually that he has cerebral palsy; it looks pretty similar if you’re not in the know. There are a few stares, but mostly it’s a friendly nod and a smile as we pass by.

He even gets a few women talking to him, which always makes me grin when I think of the lady-killer reputation he used to have.

“You’ve still got it, bro!”

Actually, I’m quite disarmed by the kindness we see around us. It’s good to think that strangers might look at Nick and see a person enjoying a summer afternoon in the park watching a band like anyone else, not just an invalid being pushed about in a wheelchair.

But it can make me uneasy too. There’s nearly always a drunk bloke who wants to come over and shake his hand – why? Because they think they were at school together? Because he looks like a good egg? Or because he’s in a wheelchair and obviously impaired and has actually had the balls to come out and show himself in the outside world? Do they think it’s their good deed for the day or what? 
Or in their cups do they recognise another fragile soul who they can connect with? I wonder.

These encounters are pretty one-sided too, as Nick is so deaf that he can’t usually hear a word the other person is saying so he just tends to nod blankly, eyes not quite focussed, and that adds to the weirdness of them being so keen to talk to him.

I have had a few people asking me what’s wrong with him, and surprisingly many of them have heard of Huntington’s Disease, and that has to be a good thing.

But I don’t ever want him to feel like an exhibit or the cripple in the corner and I guess I am protective in these situations. Watchful.

Today I was approached by a woman who said she'd seen us before, and wasn't it a shame,

"Ahh - the poor thing." 

Nick was drinking a glass of wine in a plastic cup, in his best shirt, with the sun on his face. He looked happy. "He's so quiet," she continued, "isn't he good?"

What can you possibly say to that? Well, a lot, as you can imagine, but I was a bit gobsmacked. Again it reminded me of people from an older generation when my son was little who would ask if he was a good baby. I came to realise they meant did he sleep through the night. 

"No, he doesn't sleep a wink" I'd say, "but he's the best baby in the world!"

I don't think the woman is even listening as she clucks on, but I turn back to her and say, "He's gooder than you can possibly imagine. He's had an amazing life and it's not over yet. He's the best brother in the world." 

Voice of the Donkey

Not had time or head space to write for a while – things keep happening and being able to sit down to record my thoughts at any kind of leisure has been too much of a luxury.

But that’s why I started writing a blog in the first place, because things keep happening and I needed to keep track. So here we are, midnight, way past my bedtime on a day when I could happily have gone back to bed first thing this morning and slept for a week.

Earlier this week I was interviewed for Radio 4’s Money Box Live programme about the financial impact of being a carer. 

They asked what I did for Nick and I trotted out a list off the top of my head, thinking to myself that it sounded like nothing and feeling the usual guilt that I should be doing more and am not there for him 24/7.

People often ask if he lives with us and I still feel bad that he doesn’t – even though our house is just not big enough for the both of us, and when he did stay with us on first arriving in Sheffield last year, he fell down our stairs and broke his collarbone within two days. 

So no, he doesn’t live with us, but we see him every day and I probably spend at least three or four hours a day dealing with his paperwork, money, shopping, appointments, blah blah blah. But some people spend their entire life doing that for the person they care for; I know an eighty year old who has perhaps two hours off each day if she's lucky, and many live-in carers report a 90 hour week. 

What I do for Nick in comparison feels like nothing much - and it feels like an endless mountain. 

It's hard to explain how the time just sucks into a vortex when you're looking after someone else like this. 

And I simply could not have expected the level of responsibility and care I would be taking on. 

No-one does, I’m sure. It soon starts to feel normal though, so you take on more, until suddenly you are like one of those poor Greek donkeys staggering under an impossible weight. I used to cry when I saw them and try to get their owners to relieve the load. Of course they would just laugh and pile on another brick. “The donkey doesn’t feel it!” 
Now that donkey is me.

On the radio interview there was only time to include a small part of my duties, just the tip of the iceberg really, and of course so much of what you’ll do as a carer is often unquantifiable. But viewed from the outside, I saw that other people really did think it was a lot. 

Well, it's all relative (literally so)

But it has made me think. It has made me more proud of myself, and more determined to do a good job for Nick. 

But it has made me more angry, and more determined to speak out about carers' rights, keep lobbying for more recognition (and god knows, more financial support) and keep connecting with other people whether they are carers themselves or not. It can be a lonely old business and we need to talk to each other. I might feel like it a lot of the time but I refuse to be an Eeyore. Us donkeys need to stick together - go on with our work but make sure we raise our collective voice, echoing across the hillsides. Let me hear you, brothers and sisters!

The Donkey - GK Chesterton