I’ve been quiet this October, I had ideas for posts to write but I was moving house and my motivation had gone AWOL again. Initially I wanted to write about the stress of moving house and the flavour given to it by brain injury but something else popped up instead. Inspired partly by a conversation I had on Twitter with a friend and partly by how I’ve been feeling this past month I’ve decided to talk about the ghost like nature of my existence and my invisible disability.
I’ve touched on this before but it became very prominent to me these past few weeks. In all the hubbub of packing and unpacking and the assimilating to my new environment I’ve found myself doing a lot of staring at the walls, this is perfectly normal with brain injury, staring at the walls becomes an Olympic level sport. With the staring though came the ruminating, I realised I was just floating through my days at the moment. The location move means I’ve had to move services so a new keyworker and a new brain injury team have to be put in place, this means I’ve effectively had to start from scratch again. That aside, staring at the walls can bring new insights and feelings. It’s good every now and then to stare at the walls, the brain injury requires it, it gets tired and full and so a good session of wall staring empties and calms the mind. You kind of enjoy these sessions, they are useful and not to be resisted.
It was during one such session of gazing that I started to wind myself up, my mind started to tell me I have no useful purpose in life, that everything is pointless and what quality of life do I have brushing toast crumbs off my dressing gown and worrying all day? I started to buy into that fallacy that being ‘useful’ equates to busyness and having a soul and back breaking job. I’m constantly told on a daily basis that a life on benefits means I’m a strain, a leech, something to be eradicated. Because of course when I filled out my life questionnaire they were the boxes I ticked for my life path. I really wanted to spend my days sad and worried and in pain it’s a right laugh.
My friend on Twitter who has her own battles to fight said it’s like life is on standby during the day, this sums it up nicely for me, you kind of go into pause mode until tea time and then fade back into existence for a few hours until it all starts again the next day.
It also didn’t help me when someone close to me and Mr Braingirl said we ‘don’t live in the real world’ and that blogging isn’t ‘real life’ and ‘why can Lauren do some things but not want to go out for meals?’. Imagine being told after battling for 2 years straight that the outlet you have carved that has some therapeutic value for you isn’t ‘real’. I assure you, this is as real as it gets, I would even argue that my existence has made me butt heads with reality in a way that you will never comprehend. However, this really upset me and made me realise that because I present well ( I speak well, I move around without help) that people just don’t understand my life, they probably never will and it just adds fuel to the current rhetoric that people like me on benefits and disabled are lazy and feckless. Would this person in question have said something like this about a cancer patient or a wheelchair user? I very much doubt it. The thing that annoys me the most is that they have this resource to help them understand me and they wont even look at it.
I struggle every day, I’m not saying this so people will feel sorry for me, I’m saying it because it’s fact. My frontal lobe was damaged which means my mood isn’t regulated, I can burst into tears at any time for no reason, I can have 15 different moods in one day. I wake up in the morning and have no idea how my day is going to go. I’m also fatigued a lot, if I go out for lunch one day and converse in a noisy restaurant I have to spend the next day recovering. My brain injury has made me sensitive to noise, smell, taste and temperature. If there’s too much background noise it fights to process everything and exhausts me, this is why I can’t really socialise anymore. I get hot flashes if there’.s even a slight increase in temperature. NONE of it is fun.
But the majority of people don’t see this, they just see me when I’m on an upswing, when I’m able to have a conversation without getting confused, when I can manage a full day without being distressed and crying and you know what? that suits them because they don’t want to know when the other stuff is happening anyway. It fits into their life better if I’m not a mess. I don’t get to escape those bits though so a little more patience and understanding is always appreciated.