My time, your time

I've learnt over the last five years of managing P.As independently that it is important to establish boundaries and set up expectations from the beginning.  Having somebody involved in most of your daily tasks is never easy and means that I don't run on my time very often. I tend to make my needs happen when it's convenient for others as opposed to when I actually need things and I therefore have learnt to make all of my needs fit in to other people's schedules. This is unavoidable when it's your family and friends helping you because they have their own things to do and cannot be available exactly when you need them. Nevertheless for me, causes huge levels of frustration and at times becomes unbearable. Therefore when have a P.A, someone who is employed to meet my needs,  I see it as an opportunity to run on my time, which gives me so much freedom. It might sound silly but knowing that I can say to myself 'no I won't go to the toilet now but I can go in ten minutes if I want to' puts me in a completely different mind frame about my life. Therefore one of my rules for my P.As is that my time is my time and their time is their time. That means that when I go shopping, that is time for me to shop not for them too for example. I don't know a single person who wouldn't be particular about the way in which they had help if they were in my shoes. I think if the person is right for the job they will get you as a person and understand what's important to you. They will also have the imagination to think about the effects of having people involved in every decision you make and will respect the fact that you need things done a certain way. Luckily for me, I have an amazing group of P.As often referred to as 'team Greene'. I have learnt that having the right people is so so important. I never want to be in a situation where my P.As are merely people who help me physically. For me, having people who I can have banter with and build friendships with makes having to have help with personal care so much easier. Lots of my P.As have become life-long friends who I really love and as many of them will read this I have to say; thank you team greene for all that you do.

'Why do you bring that wheelie chair with you?'

Cerebral palsy comes with me everywhere, in every situation that I'm in it's present. Sometimes I barely notice but there are other occasions where I'd love to just leave it at the door, enter and just be myself. See it's very hard to show who you are as a person when your legs are constantly jumping or you try to speak and no sound is produced. At times, this is my reality and it's a bloody annoying one. The thing is in some ways I love having a condition that mirrors how I feel because my legs are my radar, my way of keeping my emotions in check but the downside is that I can't hide how I'm feeling because my body reveals all.  I know in my head that my level of spasms and stammering will fluctuate forever and I also know that there's not much I can do to prevent this. But it does make me feel like an idiot, that I just can't get my body to comply with what I want it to do. I'm let down by my body because it doesn't always let me be me. At the same time, I don't hate my body or my condition for that matter and it's not my nemesis. It can't be. I can't live my life battling with the effects of my disability nor do I want to. It's just not always a harmonious duo...

"I'm normal at St Gideon's"

I avoided watching last weeks episode of Call the Midwife as I knew that it was about a lady with Down's syndrome becoming pregnant and was not sure if I could handle hearing the attitudes towards disability from the 1950s played out in front of me without getting upset. My avoidance lasted all of five days before curiosity got the better of me and I found myself watching the episode on Iplayer. You see, as much as I struggle to be faced with topics that are close to home, I also do not like being beaten by my emotions and I wanted to see how it was presented. In order to convince myself to watch it I remember thinking as it's about Down's syndrome it shouldn't be that hard for me to watch but then five minutes into the episode I saw Jacob and within seconds knew that he had Cerebral Palsy (I can spot the signs quite quickly) and therefore my previous thoughts weren't quite as true as I'd hoped.
 I can't deny that I found some parts very hard to watch particularly the scene with Jacob on the bus where he was not understood due to his speech impairment and the scene where he was given a cup of tea in a cup that he was unable to use. I have been in very similar situations myself and therefore I identify with them completely.  It was painful to revisit these experiences through the portrayal of this character and yet in a way I was happy that this was being represented on T.V.
 I guess I just don't know how to react to seeing other people with Cerebral Palsy or how I'm supposed to feel when I do, because although I do identify with it I'm used to living in a very able bodied world and do not know how to process this sudden immersion into the world of Cerebral Palsy. I'd love to feel comfortable going between the two but I struggle to know where I belong. In the able bodied world in which my friends and family are a part of but where I have to minimise my disabled self or the world of Cerebral Palsy that would provide me with a wealth of shared experience that I would love to have but where I fear my condition would become a defining feature of who I am seen to be. But then, is that really so bad?

The curse of planning, planning and more planning

Everything becomes a process when you are disabled. I quite often forget that I plan every movement in my day in a lot more detail than most people and that I schedule my needs for when they best fit other peoples timetables. I don't always think about the fact that this is not a normal way to go about your day but when I'm faced with the reality of the fact that I have adapted to my situation it is very painful. I am very good at planning and organising but this is mostly because I cannot afford not to be. I cannot simply get a drink when I am thirsty or go to the loo when I need it because I can't do these things by myself. I often feel like I live on other peoples time and therefore when I can get help I plan for all of my needs to be met within that time because there may not be another opportunity. I live with an enormous amount of fear that I will be in situations where I cannot get my needs met as I know that this is a vulnerability that I have. I, like anyone, feel a need for spontaneity but this is hard to achieve when your life is divided into P.A shifts. I always feel like I cannot undo my mistakes. By that I mean that if I leave my shoes in the middle of the floor I can't pick them up later. This is incredibly limiting.  I do not have the reassurance that self-reliant people have. I really crave to know what that must be like.

"I opened the door for the lady with blue eyes" Child aged 6

This was a beautiful moment last term, partly because the child opened the door for me without being asked to do so, which I always find touching, but then this is how she retold the event to her teacher. My first reaction was 'aww it's nice that she didn't 'see' the wheelchair' however the more I think about it the more guilty I feel for thinking that. You see I have to be careful because encouraging people to not 'see' the wheelchair has lead to several insensitive disability related jokes being made in front of me because people do not see me as a disabled person (whatever that means). So, on reflection, I realise that what I really felt was that it was nice that she saw that as a disabled person I would benefit from help with doors but that she also saw my blue eyes and decided that this feature was more important than my wheelchair when describing me. This to me, is a perfect balance between being thoughtful and yet not making disability define me. A skill that children seem to be good at mastering...

"Why can't you speak properly?" Child aged 5

Kids are great, they don't have any inhibitions or awareness about people's sensitivities and to be honest sometimes it is quite refreshing. Recently I have found it very hard to speak. Usually, speaking to children makes my speech much more fluent; I'm not entirely sure why but something about it being my comfort zone and the sing-song voice that most people adopt when with a small child makes it improve. However, in the last few weeks this has not been the case.

I have just started a block of speech therapy consisting of the usual breathing work and using soft sounds to start a word etc. All of this I have done before when I was a child and do not have the fondest memories associated with it. Any time I go back to therapy, I instantly think if all of my bad experiences of it and have to fight the 'fight or fly' reaction to it. But it's been very helpful, holistic and everything that I never thought therapy could actually be like so it's good.

Last week in speech therapy as I started to describe a very hard week with stammering and air all of my frustrations with not being able to express all of the thoughts in my head, how I can't 'jump' into a conversation at the right moment so I avoid speaking all together sometimes and bow unbelievably stupid I feel when I stammer I couldn't help but cry. This was not my intention as my childhood memories have taught me to not bring emotion to therapy as it never goes down too well, but it was too late to stop myself. They were very nice about it and helped me to realise that it doesn't make me look stupid at all. Since then, my speech has been so much better which is so nice, it makes me so happy that I'm able to get through one sentence without stopping and that I can talk to children without stopping over every word. I think I have downplayed the effect that my feelings about my stammer and the mountain of frustration that I feel towards it, has on my voice. I wish I could stop these feelings but I think it's a natural reaction to being trapped by your body and being unable to voice who you are and what you believe in. So my only solution is to vent more often, I needed to cry about it and will probably need to many more times in the future. I know that it'll fluctuate throughout my life as different stresses take their toll but I do not want to do myself a disservice by letting my stammer control when I speak. It will not win.

"My body belongs to different people"

I recently went to see a disabled stand-up comedian who spoke of his own experiences of living with cerebral palsy and the experiences of other disabled people. This was very strange for me because I don't spend much time with other disabled people and do not have friends with the same condition as me. It was nice because I felt that I could relate to many of the things that he said and so it normalised my own feelings towards my disability. For example, when he talked about having P.As he said 'its like my body belongs to lots of different people' and I thought that is so true and such a good way to phrase it. You see, I don't often let people into my thoughts, feelings and struggles that I have with being disabled because my friends and family don't always know how to respond. I don't mean they don't try, nor do I blame them for this because sometimes some of my experiences are so far outside of theirs that they just can't relate to it. But I've realised that I need to know other disabled people so that I can have a space to put my disability on the map, so that I can meet people who have experienced some of what I have experienced and so that my life story becomes less foreign to those around me and to myself. I don't just crave this to have someone that understands the difficulties, I also really want people who I can laugh with interviewing P.As or having a massive spasm in the 2 minute silence.... Not my finest hour!
It's strange to see other people with cerebral palsy because I suddenly realise that I'm on a spectrum of a condition which I don't really think about. It's difficult for me to see people who are more severly affected by the condition that I have. I don't interpret it as 'I'm so lucky' because I don't think that's fair to my situation plus it's quite offensive to the other disabled person. It's just that I think the only difference between my body and theirs is a tiny amount of brain damage and I don't know how to process this thought. In lots of ways though its comforting to know that what my legs do is typical of the condition that I have and I get to see what other people see when they look at me.
   I know that I have to stop pretending that I'm not disabled in social situations, by that I mean preventing myself from talking about the latest battle with social services or the patronising woman on the bus for example. I need to develop the confidence to bring my experiences into conversations because then I can feel that my disability is part of me not something to hide. In order to do this I think I have to try to make links with the disabled community because when I allow myself to acknowledge that my disability makes up a lot of who I am I think I'll feel more at peace with myself.