Thursday, June 22, 2006

Afternoon Out

people having fun
Originally uploaded by girl_of_bats.
Wednesday afternoon we planned to spend with a couple of friends who had also booked the time off work. We figured that if the weather was good, we'd go to Burton Dassett country park for a picnic, and if not, we'd go for a pub lunch somewhere.

The weather seemed a bit hit and miss so we opted for the pub lunch. We went to a nice, fairly upmarket place called The Woodhouse which had really nice gardens and did nice food too. It's just as well the gardens were nice, as they had no readily available disabled access and I was feeling so rotten I had to be in the chair. They had one ramp, but that led to a locked door with curtains across it and no bell or anything, and there were no "please call for disabled assistance" buttons by any of the stairs into the pub either. Still, I was lucky enough to not be on my own, so we sat outside and the others went in to order the food, and I just tried not to drink too much and end up needing the loo.

After lunch, we decided to go to Burton Dassett after all. It was a nice drive, and then we got out and Steve had brought a folding chair for me to sit in. The others had immediately run up the nearest hill, so I decided to join in and with Steve on one side and my stick on the other we took the easiest route up the hill (with a couple of breaks) and set up the chair in what seemed to be the least windy spot, in the lee of a stone turret.

At first it was all very nice and idyllic. Beautiful scenery, happy friends, loving boyfriend. We put the kite together and tried to launch it but the turret was playing havoc with the wind currents.

Which is why they all wandered off.

I tried to get out of the chair to follow them, but I couldn't. I was stuck. And even if I had got out of the chair, I'd have been staggering and collapsing and making Steve worry, and I know he doesn't like thinking about me being disabled, he'd prefer it if I seemed as normal as possible and kept as safe as possible.

He kept coming back to me every so often, and if anything that made me feel worse - like a great big useless anchor, dragging on him and stopping him from doing what he wanted to do. Then he was coming back less and less. Half the time I couldn't even see them any more from where I'd been deposited.

I don't know how long we spent on the hill. I know it was 2pm when we ate lunch and 5.30pm when we finally got back in the cars and left Burton Dassett. I was getting more and more tired, I was getting colder and colder, I was slumped in the folding chair and the wind had come round and was whipping my face with my hair and that's probably a good thing as it gave me cover for the crying.

Steve and the others came back eventually, and by all accounts they'd had fun. I'd pretty much cramped up in position in the chair and needed help getting out of it, then Steve helped me down the hill again which involved severe pain, lots of tears and several rests. I was praying that I could just be folded into the car and go but I really must learn to say those things out loud, as praying doesn't work.

Since we were all together again, I tried to join in again by throwing a frisbee, but even with the help of the wind my arms were so weak that I only managed to make it go a metre or so, which got me summarily laughed at. Didn't matter, I couldn't have crumpled up in on myself any more than I already had.

I ended up sitting on the grass as I couldn't balance on the bench, then I ended up crawling towards the car as I couldn't walk at which point it was considered funny to put things on my back without me noticing and snigger at me.

Yeah, hilarious.

I think Steve had a reasonably good time, but I think both of us would have had a better time if I'd been a good little crip and stayed at home in bed. Maybe I'm just fooling myself to think that I can integrate.


Anonymous said...

This post sounds more like a cathartic train of thought than anything else, but nonetheless: you're absolutely right, they don't know if you don't tell them, and there's rarely any point sitting on the sidelines feeling miserable instead of just saying 'I'm going to sit in the car and listen to the radio' - your friends soon learn that's the way it is :)

But, you know this now!

Mary said...

I really should.

And I shouldn't blog it, because Steve read it and now he feels either miserable for not being a mind reader, or angry at me for not speaking up. I'm not sure which as he's vanished off in the car without his phone so we can't discuss it. I tried to run after him but me? Run? never happen. :(

Anonymous said...

I think even Paula Radcliffe would have trouble keeping up with a moving car ;)

My attitude about it (and I'm obviously nowhere near as bad as you) is that everyone knows I'm a spacker, no one's going to begrudge me help if I ask for it, and on the good days (or when I'm home alone and have no choice) I can find ways around the tricky things and feel proud of myself if I manage it (and weep quietly if I don't ;)

Anonymous said...

I found when I acted like a trooper all of the time, they expected me to be a trooper. Asking for help, or saying what I can or cannot do is hard, but it makes it easier on everyone involved.

Anonymous said...

like amerella said NOBODY will begrudge you any assistance. Tough tits if they cant have all the fun, the fun is having your company and they are lucky to have it. Please speak up in future honey cos everyone still loves you even if you do find it hard to do all the normal things. I think we need to design you a robosuit.

The Goldfish said...

I'm really sorry you had this experience. Amerella is right; to maximise your "normality" you have to push for your limitations to be taken into account.

Unfortunately this is embarassing, draining and hard on Steve who (quite reasonably) is distressed to see your illness manifest in collapsing and so on.

A few ideas about this, but for now I'll only say I hope you feel better soon.

Mary said...

I know I need to speak up more for the benefit of myself and everyone around me. Step one, knowing it - Step two, actually kicking myself up the arse and DOING it.

Thanks everyone for your supportive comments :)

Anonymous said...

I read your post and it made me sick, I mean literally sick with vomit spewing forth from my mouth.

What the hell is your problem? Do you think you are the only disabled person in the world who struggles with everyday life?

I was in a car crash 10 years ago and can barely walk. I can't even put socks on or wipe my own ass and while this truly upsets me, I do NOT project outwards and expect everyone to fall at my feet offering tea and sympathy.

Yes life has dealt you some bad cards, well GET OVER YOURSELF, you are NOT anyone special and I have friends who are FAR more disabled than you and would have cut their right arm off to be able to even get outdoors and spend a day at Burton Dassett.

You are a moaner, a complainer, a whinger of the worst kind. You feel sorry for yourself and expect others to as well.

You make me PUKE.

Mary said...


I'm so sorry I made you ill. I recommend only taking small sips of plain water until your stomach has settled, then try eating a small amount of bland food to check you can keep things down again. If symptoms persist, see a doctor.

I am aware that there are many disabled people in the world. Some people have more cognitive but less physical function, some have more physical but less cognitive function than I do. Quite a few people have less physical AND less cognitive function than me, I know that. But it's not a case of being completely bedridden/paralysed/whatever or completely and perfectly healthy. There's a LOT of middle ground.

I don't think I'm "the illest", but other people being "iller" than me isn't going to suddenly enable me to leap to my feet and dance a tango.

By way of analogy: You know that in myriad places around the world, children are dying, actually dying, of hunger. But that doesn't stop you saying "I'm really hungry, let's have dinner soon!"

I don't expect tea and sympathy and people to "feel sorry for me" but I do expect respect, and I do expect those close to me to take my limitations into account - although as Amerella has pointed out, and as I have since taken on board, this goes much better when I clearly ask for or explain what help/adjustments/provisions I need.

Finally - I would ask that you bear in mind that this was written:
1) on a bad, grumpy day - I'm sure you have those too.
2) while I was still adjusting to Not Being Able To Do half the stuff I had previously done without even thinking about it. Some people adjust quicker than others.