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glass walls

I complain a lot about not being able to walk properly and being in pain all the time. Sometimes I feel like I over egg this. I know that other people face much greater challenges with far more positivity than I do (how the heck do folk do this?!?) and I just feel like I’m awkwardly chucking my issue in people’s faces in a way that sounds like a bratty toddler. I don’t know how much it affects my life because I don’t remember what it’s like not living with this and I do try and force myself to remember that ‘normal’ people probably aren’t that different. It’s easy when I’ve got a routine I’m comfortable with to forget there’s anything wrong; that’s obviously the ideal situation. 

There are times, however, when I feel like there’s a massive glass wall between me and the world; when I’m in a new situation with no control and am completely dependent on other people. For example, when you’re with people you don’t know very well going somewhere you don’t know and they walk at warp speed; there are only so many times I can ask you to slow the hell down or pull pained faces before I start to hate you (taxi drivers who take the piss out’ve you for getting a cab for a 10 minute walk can piss too by the way). I realise I should accept that people don’t necessarily understand and that I should be more direct, but when I do the latter I get a lot of looks that make me feel like the bratty toddler I mentioned earlier. If you can cope some of the time, why can’t you cope all of the time? I should get less angry, but I always wonder ‘if this is how you treat me, how do you treat other people?’ and it worries me that huge swathes of society could be so pointlessly marginalised (I realise I might just be being a bit of an arsehole even thinking I’m representative here). 

One of my least favourite things in the world is day long meetings with bloody networking and buffet lunches. Sitting for that long in uncomfortable chairs hurts (probably unpleasant for everyone, but it has a tendency to force my leg into stupid spasms which have been contemplating amputation with a bread knife and panicking about how to stand up). I’ve been trying to work out why it’s so much worse than everyday life in an office (which I don’t find anywhere near as difficult) and I do think part of the problem is my compliance with the expectation that you’ll be polite and sit there. Maybe moving around more helps and I need to get over the self-consciousness I feel when loudly shuffling out my seat and asking folk to move their piles of crap. Then the idea of pacing round the back of the room like a caged animal contemplating a prison break doesn’t seem appealing. I don’t want to seem like I’m attention seeking (to be honest I want to disappear; I feel like it’s a sign of capitulation). Thank you joyous teenage taunts and angry women in disneyland bathrooms for loading me with these delightful hang ups. 

To return to networking and buffet lunches, they involve a lot of standing. And holding things. At the same time. I have one free hand and, to be honest, I’ve bloody well given up trying to juggle this crap (especially since, as I said earlier, these days are particularly painful for me). I can’t even carry a bloody drink and food back to a seat at the same time and I get fed up feeling like I need to beg folk for help (again I realise this is yet another psychological issue). It’s nice when people think of it on their own and I don’t feel invisible.

Now, once you are sitting down with said drink and/or food you become entirely reliant on some kind soul agreeing to give up flitting amongst the influential type folk and speaking to you. Otherwise you look like a grumpy bitch ignoring everyone in the corner (which I do very very easily become in this situation). I get it; the fluidity of conversation and opportunity to listen to and contribute to multiple people at the same time isn’t there when you’re sitting down (‘a girl hasn’t got but two sides to her at a table’ after all). I feel so massively excluded from this for reasons that I think are outwith my control. I think the way it makes me feel is more within my control and I know that as soon as I feel I can’t physically do stuff I get so unbelievably angry; there’s only a small gap where I would actually let someone help/be understanding/not be an arsehole before writing off the whole human race. I know I need to work on widening that, but I find it hard. 

Basically, I don’t think it’s fair that any kind of social situation is constructed in a way that could physically exclude anyone. But that’s not how the world works. We don’t all know sign language. Not all pedestrian crossings beep or have pavement bumps. Wheelchair users can’t get on buses if they’re busy with people or pushchairs in that one space they can actually use (bit of a random mix of examples, but ok). I realise how utterly unrealistic this total inclusion is and I’m ashamed to think of all the times I’ve been an arsehole to people when I haven’t understood that they were struggling. 

2 thoughts on “glass walls

  1. Hi Libby, really great blog post. I was in that situation for a few months after an operation several years ago, and had the some of the same experiences – namely, taxi drivers taking the piss for short journeys, and also people repeatedly speeding up when you ask them to walk more slowly. I think that people who have never experienced serious illness or pain cannot empathise or imagine what it is actually like to be so physically hampered. I used to feel that people were often a bit suspicious, as if they were thinking, if you really wanted to, you could walk faster. But if/until it happens to them, they will have no idea what it is like to be in your situation. You get a few who will try to make the imaginative leap. And let’s hope posts like this one can help people understand better what it’s like.

  2. I think it’s normal that you feel angry. I feel angry because of AVN. I have days when I want to give in. I’m tired of people staring at me and wondering why I have a cane. Sometimes I’m tempted to scream ” what are you looking at!” I have good days and bad days. I find that when my mind is occupied I focus less on my disease. It’s been a while since I cried. The other day I let myself cry for a long time. I hold so much in. That makes me more angry. I find myself telling everyone what’s wrong with me. I feel the need to explain why I’m ‘different’. You’re not being a toddler. Like SUCKS sometimes. It’s okay to feel that way. I’m trying lately to focus on what’s good in my life. As you say other people have so much more to deal with, however that does not minimize what you are going through.

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