Disability and Abuse - a crosspost from my YouTube channel 'Emily'sVisions'

I have been running a Youtube channel for a while and been sharing my feelings and things on there. I sometimes have problems with my wrists seeing as I communicate so much in text and also the fatigue that comes with frequent seizures. The occasional 'Vlog' has been a great way to encourage myself to communicate even when I have these setbacks :)

Posting a link here to my most recent video where I talk about 'Disability and Abuse' some thoughts I have been having recently. I enjoy relating to people but have often had to watch myself carefully as I am a very open person as a result of my disability and cannot spare energy to those who would enjoy me as a bit of a feast ^^

https://www.youtube.com/watch?v=zAotHPc5Yoc&feature=youtu.be

Text from the video

"Hi everyone Emily here from Emily's visions. Today I want to talk about Disability and Abuse. 

The one thing I wanted to say today is just as disabled people may get benefits and help so that they can have carers to look after them and make life more easy. This helps to make life more normal for them making it more possible to rise above the obstructions their disability presents to them. (I'm certainly one of those people) - Just as caring is important to disabled people I think it's also important to recognise how easily how easy it is the disabled people to be abused. 

If you have a lack of care in your daily life or during difficult times then as somebody with a disability your ability and your mental state, your functioning as a human being will rapidly decline, rapidly recline. You will go from someone you can do a few things with help to finding that even the most simple things difficult. I think that all people can understand that a little bit because when anyone is ( for example getting knocked over by the flu) you can't think straight and you just have to struggle through until you get better. So we can all empathise with times like that. So if you have a lack of care as a disabled person that's the result.. if you get abused obviously even more so. 

Disabled people are actually more likely to get abused because people who abuse people tend to be impatient. They tend to have their own agenda and are not interested in other people having their own views about things... so a disabled person is likely to upset them quite a bit because they won't be able to do the things that normal people can do. So the Abuser will say 'just do this thing it is simple' because of course they wanted to be simple but you may find at a disabled person that you just can't do that thing.
I often find that that's a cause of a lot of friction in my relationships particularly as I have seizures that come and go. Also my mental state and brain capacity that comes and goes as a result of brain damage. 

So sometimes somebody will say to me 'okay you do that' and it may be that last Tuesday I was really efficient and I got it done PLUS but because of the current state I'm in I can't. Even sometimes with my husband he might say to me 'can you explain this thing' and if I can it will be a simple matter because there's a certain amount of understanding he's needs to gain in order to put the subject 'to bed'. But if my brain is like 'I don't understand' and in a bad state It is hard to be clear. For example if it's an object that is placed in a random place  I may not even remember placing the object there, or recognise the object or my relationship to it. So I just have to say 'no I'm sorry I can't do that'. I'm learning more and more to be able to say that clearly and recognise that I'm it in seizure or in an odd state.. over time that's something I'm working hard on :-p

So I just wanted to mention disability and abuse because I do think that disabled people or the fact that you can't do something can be extremely irritating to people. If you happen to have impatient people in your life who have a tendency towards abuse, they will abuse you. It's a fact.
I was talking to my friend about this the other day, that being aware that someone IS abusing you is the first step, to catch it rather than dismissing oneself and experience. I think sometimes I think 'I'm the one who is being difficult here' - therefore it is 'my fault' and then find it easy to dismiss the abuse. But then I'm not ready to look after myself which I think is a shame for other people in my life because they then don't get the benefits of me being in a good state.

While I was thinking about this I remember the sketch called Lou and Andy - I can't remember which comedy sketch show it was in but Lou and Andy but it was about a Disabled person and his Carer. Andy was in a wheelchair and the joke of the thing there was Andy wasn't actually very disabled so Lou would turn his back or go and do something and Andy would be out of his wheelchair and off 'doing his thing' - running back to the wheelchair before Lou got back. Also Andy was quite picky so he would say 'yes let's do that, I want to do that Lou'. Andy would say to his carer 'I want to do this, I want to do this' and they would do it and he would say 'I don't want to do it, I don't want to do it'.

So I find that quite interesting... I wanted to bring this up at the end of this thing because I can see the humour in the sketch BUT also I can see the passive aggression that was demonstrated in it. I think the frustration is very normal for people who have to look after someone who is hard work to look after. It can be a bit frustrating and I think it's there are times when anyone would think 'if that person try just a little harder then everything would be smooth and easy'... so recognising the frustration that comes up around Caring in Disability I just wanted to mention it today as something I've noticed and therefore an awareness I'm working on.

Nice speaking to you today!"

Another long break..

During which I had to deal with the trauma of my narcissistic mother offering her spare room to my eldest daughter and winning her away from me.

I think this is an experience that is more common than it should be for disabled mothers.. young people are easily confused and dissatisfied during their teenage years and I have to say it has not been easy energetically or financially being a disabled mum with uncontrolled epilepsy. It's then VERY easy for anything to be sold as 'the greener side of the fence'.

I have had issues with the belittling of my mother for most of my adult life as she often gave me the feeling that the life I had built for myself was uninteresting. Rarely did she visit my house (we live in the same town) for reasons other than to tell me what her next plan was and how I should fit into it. I also have learnt since the bombshell that she took the side of my ex in a lot of things, especially during the phase of my eldest daughter's early life - when motherly confidence is in short supply.

The main issue I have had with my mum is that she (naturally I feel) had a difficult time adjusting to my epilepsy. Only in adulthood have I discovered how marvellously subtle it is to have brain damage and the different types of effect it can have carrying around such a sensitive organ in a state of flux and compensation for said injury. During childhood a lot of symptoms were written off as me being a day-dreamer .. or over emotional (boy has she used that plenty of times to gaslight me into submission and alienate me from others). But also as a parent she has been disempowering and thriving on the attention one gets as a grandparent - working towards being my children's 'friend' and gossiping with them in ways that are entirely inappropriate. I had to stop her taking the kids out for a while when my eldest (who was 7 at the time) came back from the zoo trip telling me that grandma had said I was 'naughty'. More recently  (during the grooming 'come live with me' phase) it was reported by my eldest that she was saying things like 'when will your mum get a job' and also in reference to when I got beaten up as a child 'it cant have been that bad because she wasn't covered in bruises'.

I did try to go to counselling with my mum in Feb of the year she stole my daughter (who was 17 at time so everyone said 'she can make her own decisions'). The session was impossible but I gave it my best. As it was she refused to acknowledge anything I said as even my own truth.. saying 'i don't understand the pictures you are painting' when I was talking about things that actually happened. She only called me by my name once when she was pretty much telling me off for crying - it must have been very embarrassing for her.

Since then I went non-contact. I am disabled and don't have the extra energy I can give to this woman - so she took my child. I also could no longer bully my children into going along with her schemes - as they were old enough to start saying no :-p. Haven't heard from my child since then (we had not had any argument when she left) as my mum ramped up her natural anxiety to the point where she tells everyone she is scared of me.

3 of us left are now quite balanced and happy (I am going to regular counselling on my own) but that's pretty much what I have been doing in my year gap - most educational! Oh.. and having more like a seizure a day - stress probably.

Returning after a long break..

Why the break happened who is to say.. I will read up and think about that. I certainly have not been so 'busy with other things' that epilepsy has not been relevant to my life LOL

Still having 2-3 Complex Partial Seizures a week, and my kids are as independent as independent people still living in my house can be. I watch the development of all 4 egos in house with interest.

End of holiday...

End of holiday..... and so so very tired!
I am becoming stupider by the day and well overdue for a deep seizure - or thats what it feels like.
My seizures certainly seem to be a release from all the expectations and habits that I end up having to hold on very tight to to maintain my idea of who I am. It's dam scary to be lifted out of a constructed world at not much more than a moment's notice. And I mustn't really have a seizure before i have gathered the school uniform and bought some new shoes for the kids.

When i have a deep seizure it takes me 2 or 3 days to come back to understanding my place in the world. Steve, my husband and carer, is excellent and probably could get all the things that need doing done in my 'absence' but there is always that nagging motherly instinct that wants to be the best mother ever for my dear little darlings - and 'zoning out' is not one of those things that that 'best mother' would do.

The mother instinct is such a weird thing.. I remember when i was pregnant with my first child and so very worried that i would be too selfish or disorganised to care for it when it arrived. Then when she did, suddenly the parenting thing made sense on an emotional level (intellectually I'm not sure i came back to roost for at least 10 more months). But for a disabled mother I think that the awareness of how one is restricted by your disability constantly fights with the instinct to be the best mother ever for this miracle person who didn't exist and now does.

How does one 'care for' whilst being 'cared for'.. I wonder, wonder......
^^

Being Human

A lot of what we do is issue-based - I get that... but with a brain that, from my perspective, starts and stops all the time I have been making a study of what it means to be me. I forget all sorts of things when i have a seizure... things like my coping mechanisms, what i enjoy doing, the book i was reading and new friends i have made. So it ends up with me kinda being me specifically, as a practice between recovering from one seizure and the next.

Whatever people might say about finding a 'fix' for this.. when i took the meds prescribed by the doctor (they since have said i can choose either way whether to experiment with this as i have 'difficult to treat epilepsy') they levelled my experience so my life was more consistent.. but I strongly believe that this was a subsistence level due to the high dose i had to take and I prefer exploring the dynamics of who i am without correction.

No-one wants to be not special.. we all struggle to be different. We more specifically push real hard not to be like people we don't like - and I'm wondering how much that makes us avoid behaviour that actually we would personally enjoy. I don't want to be generic.. despite the fact my seizures stop me from developing the kind of personality which would be more natural if my mind was more of a stream of moments. I still want to believe that the parts i remember and practice between seizures are part of a strong 'me', individualistic and yet not solely issue based (ie made up of the things i grasp strongly at because they make me angry or scared). But I wonder... what bits am i leaving out..? What parts of 'being human' on a generic level are generic BECAUSE most people can enjoy them.

I tend to avoid things and behaviour that seems unintelligent to me.. I confess a subtle snootyness about that. But maybe they seem unintelligent because i can't see the type of intelligence that lies within the behaviour or.. lets face it,, i am ignorant of why people find it fun and interesting because I simply haven't tried it.

This has been interesting up to this point but I feel I need to illustrate a bit more what I am meaning so I'll try but its reaching into the area of stuff i find hard to talk about for whatever reason - so bear with me ^^ 

1) I had a childminder once who spent most of her day in her dressing gown, served us greasy food and often there was violence on the TV that was on all day while she 'cared' for kids. I think from that i have taking a guilt about lazing about in my dressing gown (which is a human freedom is it not).. and a fear that if one doesn't maintain constant and nitpicking vigilance while kids are around.

2) My mother is a wonderful person who I admire and feel grateful for her love in this life but her extremes from my perspective oscillate between someone who defines herself by work (when she was younger and not so ill mostly) and a fairly mousy person who doesn't have much sensuality in her life. From this I have been quite timid about intimacy with others and the rituals that surround them.. cards and random pressies for a loved one.. dressing up attractively.. wearing pretty underwear.. that sort of thing.

This also includes frivolous behaviour - getting drunk, random parties, having a dog, art for art's sake etc...

So I think i am embarking on a gentle study of conventional human objects and activities.. the things that 'a lot of people do'. This first few steps seem to reveal an interestingly easy happiness.. pleasure in simple things or whatever..

For the record...     ;)

Letter

Hi everyone...

Long time... spring and summer was really hectic. I wrote this letter to someone recently and wanted to share it.. I am constantly watching my epileptic patterns and trying to figure out how to assert what i really require from those who wish to consider themselves my friends. I am still learning how to be friendly to myself after all...

It frustrates me when I cannot fulfill the small amount of promises I have made. I like to be honourable and consistant with others (like thats every gonna happen with my inconsistant brain i mutter to myself). So I figure knowing my limits well will help me to know what promises I can make... so tho it looks maybe like selfishness I am trying to see it as a practice of honesty instead. Complicated ne?

Hi ***************,

I feel there is something I ought to tell you about me.. if I am going to mentor you in any way 

I am a temporal lobe epileptic from a brain injury i recieved when i was 8 years old. As as result of this i have fairly frequent seizures that take varying forms. One thing i get often is 'Jamais Vue' which is like when you have never seen or experienced something before. For example when i am in this state if someone gives me a cup of tea i wont know what it is, what to do with it, or how it is relevant to me.

The main result of this is that I have to work very hard to be able to do conventional things and have conventional conversations. The plus side of this is that I don't waste much time, the down side is that I am not really someone to mess with.

I won't get very angry if i get teased or corrected... just very tired. And if I meet someone who is often jokey in the place of true communication then I will eventually just give up - I just can't afford the time and energy. I suspect that this will actually make me a very good Okaasan in the end - one that can be trusted to be steady and honest both by those she looks after and those in the wider world who relate to them.

I know there are social reasons why humans jibe at each other... but as a human i also have the right to make mistakes. Please dont pick me up on little things, it will confuse me. - I am also fairly sure you don't want me to start doing it to you.. and even if i did correct you I suspect you would like me to do so in a gentle way so that you can learn from it. If something is worth doing... its worth doing well.

Please read this through slowly several times before you respond - I may well have upset or shocked you with this message which comes from where 'I' am, which i am humbly aware is not the conventional. Then you can respond in your own time and sincerely... after all words are powerful things and once said, they are never really erased from the world.

Hugs.........

Struggling

Things are going well for me.. my projects are all off the ground and approved by others which make it so much easier to give my energy to them. So that gives me space to think - I'm tired atm, and I had some painting to do. Easy peasy really... i have done the main detail of a piece i just need to fill in and around with black ink but... would my brain let me do it?

Its so wierd how things i find easy and am quite talented at can become a struggle in the space of a minute. Could i paint today? I lacked coordination, carefulness, strength in my hand, awareness of where lines were... yet still i pressed on. I really wanted to get the project to the next stage before I have another deep seizure and perhaps get wiped for a whole day or two... and I can feel it coming (lets hope i finish this post before i forget i ever opened the computer ;))

So i got it done... so i can take a picture for my other blog. But i knocked black ink all over the floor twice (i managed to clean it ok but geez) and i was not able to walk at the end and it took sooo much more energy and concentration than it normally does.

Really strange when normally it would just be a dance of beauty and pleasure...

so there ^^