>Am I bothered?!?!

>Ha the way I feel right now anyone could tell me anything and I’d just be like “am I bothered?!”

It’s not that I don’t feel for them… it’s just that I don’t have the energy to be bothered (oh and the hangover doesn’t help either). And also this was hyped up to me by a friend of a friend (this happened to…) as something to be hugely hugely excited about and I didn’t think it was. Which makes me a bitch because if it had happened to me I’d have been all “IT’S ALL ABOUT ME”. And quite frankly, being mugged is a situation anyone has a right to be freaked/need attention about. I am a terrible friend right now.

God love depression.

I think I used all my botheredness/mental energy up today already what with my monitoring visit from my care agency (went well but…) and trying not to freak out about the fact I got an e-mail asking if I wanted to do something which on the face of it appears to me to be unaccessible.

I’m trying to remember that this was a group e-mail and it said which would you prefer X or Y and it appears to me that the other one of the activities would be accessible. And also I can e-mail this person and she might already have access info for me but I doubt it. I’m pretty sure googling just led me to the website and it says nothing about access but what it does say has me saying “hmm… no access then most likely” (historical object involvement). Tis annoying me a little tho because I was given the exact same activity as a choice last year too and the whole “wheelchair access is an issue in these places” thing was mentioned then.

But of course until you’ve lived the wheelchair life in some form or other you cannot understand it.

There is more to say on a related to this subject but it involves saying/writing things that may be considered by some to be slightly controversial and there is is a siim chance is possibly bordering close to dooce-land (FYI dooce is a blogger who was fired for writing about her job on her blog)

>In my deepest, darkest dreams

>I have pretty much managed to accept my CP even though some people find it hard to believe that. I have even had people tell me they don’t agree with the way I feel about it. One thing that I think shows how far I have come in my journey to acceptance is my dreams. I frequently have very vivid dreams and often remember them on waking; I believe this is a side effect of my baclofen (muscle relaxant).

I think that most people have dreams where they spend the dream being something they are not. Alternatively, they spend it doing something they cannot do during their waking hours. I once had a conversation with a friend along those lines. She has a different condition to me. She spent a lot more time in bed, sleeping, than she did awake. As it wasn’t a symptom of her condition it was something I found hard to understand. It wasn’t something that was easy for her to discuss being a very private person but on this one occasion she did mention it. Her condition is degenerative and she explained that it had robbed her of so much that she could do little for herself. Yet when she was asleep and in that wonderful place we call dreamland there was no disability and nothing that she couldn’t do. If she wanted to run, she ran. If she wanted to swim, she swam.

The idea of sleeping my days away because the dream world was preferable to real life was still a difficult concept for me to understand.

After that conversation I found seeing it from her perspective a little easier. Even though I have had issues with depression and related sleep problems, I have never considered resorting to sleep as a way to help me cope with my cp. However, it works for her. We all have our own little coping strategies to help us cope with whatever life throws at us (disabled or not). Mine is to journal; hers was to sleep. I am not trying to condone things which are hurtful or which may cause pain or harm to others. I am just saying that whilst we may have a reason why we disapprove of another’s methods of coping, they will have reasons why it works for them and we must respect them. After all what really matters is it works for them.

Going back to me personally and my dreams, I dream big and I dream in detail. I have a very active (perhaps even overactive) imagination. Just like my friend mentioned above I too have dreams occasionally where running, jumping and walking are not things I cannot or struggle to do but are things I can do with ease and revel in doing. Frequently however I will then realise part way through the dream that I am disabled and that I cannot do these things. Then I will panic and will spend the rest of the dream either crawling around or walking very unsteadily looking for my wheelchair. If after the realisation I were to fall in the dream, I wouldn’t be able to get up unless I can find something to get myself up with – just as is the case in my waking hours. I have never yet found my wheelchair or my walker in any of these dreams instead it usually ends when I awake feeling unsettled and somewhat out of sorts for the rest of the day.

I don’t know anything about dream analysis or what these dreams might mean. To me it seems as though they signify acceptance. Realising partway through a dream that things aren’t as they should be and then searching for my wheelchair – for my lifeline – is a true measure of just how much I have accepted my disability and how for me, life on wheels is completely normal and totally unremarkable.

When I was a child and in my early teens I was the girl who dreamed of the day she wouldn’t be disabled any more. The one who wished away her days planning what she would do when her “punishment” was over. I was the girl who was devastated when she was told that dream would never come true.

Now however I am the girl who spends her days wondering how else I can prove to the world that I have CP but it doesn’t have me. I am the girl who still dreams the most surreal and unbelievable dreams at night. The one who dreams that she isn’t in a wheelchair any more and then realises that isn’t right! I am the girl who is proud to be in a wheelchair.

Being the girl I am now is good for me. It probably leaves people wondering what caused the change. Nothing physically changed for me. I was still the mouthy girl in the wheelchair. Instead I grew a little older and maybe a little wiser. Then someone reached out to me in a time of trouble and shared with me some words that I have remembered ever since.

I left my secondary school at 16 and went to a local further education college. The staff were lovely; the set up allowed me more freedom and suited my needs more. I made some good friends from other disabled students. My classmates were a different story.

A few of them were nice people yet not one of them was willing to adjust there plans to allow me to join in. I spent many break times sitting by myself because my classmates had gone to the pub and it did not have wheelchair access and my friends on other courses did not have a break. There was another pub with access not far from the college – but they could not walk the extra five minutes to allow me to go too. That’s something I spent some time crying about until one of my lovely learning support assistants found me sitting there crying one day and let me talk to her and then when she ran out of time took me to her boss, my disability support coordinator.

Ruth, my coordinator, said to me “Emma, love, if they cannot be bothered to do that one thing for you then do not worry about it – they are not worth it and they certainly are not worth your tears. Besides you’ve got something much more important to worry about at this point in time – your mascara’s smudged” giving me the advice I needed to hear and the humour I needed even more to take away the hurt.

Because being at college, and later on at university and the way that I met people who were able to deal with my disability without making a big deal of it taught me what is perhaps one of the most important life lessons I have ever learnt. If people or a place cannot be bothered to accommodate me and to acknowledge the fact that I’m different to them and need different things then the real problem, the underlying problem in that case lies with them. it’s nothing to do with my cp or my wheelchair or my crap balance – they can’t look beyond my outer shell and see who I real am inside.

I am Emma. I am disabled. I wouldn’t want to be anything else – even in my deepest dreams.

>Monday Memories: Did I Ever Tell You About The Last Time I Went A Whole Day With NO Pain?

>

This Monday Memory is bought to you by the fact that I’m pretty pissed off at the moment

MM!

Did I Ever Tell You About The Last Time I Went A Whole Day With NO Pain?

No? Well that doesn’t surprise me being as it’s only a vague memory for me… I was about 14 at the time (now 24) and to be honest I can’t really remember not having pain… I can remember roughly when my pain started and I can remember all the various half arsed explanations for why I have pain but I can’t really remember not being in pain.

My pain started in my back and at the moment my back is really hurting me. But you know what, it hurts me everyday. when I mention that it’s really hurting me I mean it’s hurting me more than it usually does. Sometimes I barely notice my pain because I’m so used to it. My normal includes pain. My doctors can’t decide why this is but basically the key point in all their stupid explanations is it’s a CP related thing.
My shoulders ache at times – thats what being in a manual wheelchair does for you and chances are it;s only going to get worse. But that’s sure as hell better than the alternative.

I have hip pain (pretty severe at times) in the hip of my “good leg” caused my doctors believe because due to how spastic my left leg (bad leg) is my right leg (better leg – i have cp in both but less so in this one) takes all the strain when I stand/walk/transfer and to put it in the best medical term I can with my limited knowledge – after 24 years of that it’s fucked.

Some people have tried to convince me that because I realise my situation may get worse i’m setting myself up and it will get worse. Others tell me that they think I take too much medication and this is part of my problem with pain.

Until I began to have issues with my hip about 16 months ago the only medication I took was my antidepressant. Now I take a muscle relaxant (baclofen) which helps me a lot with my spasticity and reduces my pain. I take a regular dose and also a little as prn if I’m feeling particularly spastic that day. I also take co-codamol 8/500mg on a prn basis when my pain is at its worst. That was a new thing with my hip too.

I haven’t taken any painkillers for a long time tho… I use repositioning, hot water, and heat packs whenever possible to deal with my pain and save the co-codamol for when things are bad or when I’m in situaitons where I can’t reposition etc.

I push past my pain as much as I can. Today it is ruling the day but that was MY choice. Tomorrow is Naidex – a once a year thing I’m really looking forward to. So I chose to stay home and spend as much time as possible out of my chair etc in the hopes I can prevent it being bad tomorrow.

I might be in pain but I do not need your pity. I can’t remember being pain free sure but I can function despite it and my life is good. I am very very blessed that I am not in more pain and I give thanks for that everyday. But I just wish more people could have the awareness of how lucky they are.

Links to other participants (monday memories only please!)

>In The Deep…

>

In the Deep

Thought you had
all the answers
to rest your heart upon.
But something happens,
don’t see it coming, now
you can’t stop yourself.
Now you’re out there swimming…
In the deep.
In the deep. Life keeps tumbling your heart in circles
till you… Let go.
Till you shed your pride, and you climb to heaven,
and you throw yourself off.
Now you’re out there spinning…
In the deep.
In the deep.
In the deep.
In the deep. And now you’re out there spinning…
And now you’re out there spinning…
In the deep.
In the deep.
In the deep.

And the silence,
or your secrets, well
raise a worry hand.
Well, you can pin yourself back together,
to who you thought you were.
Now you’re out there livin’…
In the deep.
In the deep.
In the deep.

In the deep…

Now you’re out there spinning…
Now you’re out there swimming…
Now you’re out there spinning…
In the deep.
In the deep.
In the deep.
In the deep…

In The Deep – Bird York

I always thought I had all the answers. That I was the strong one, the one who everyone looked at and thought “that’s Emma, she fights past her CP and doesn’t have a problem with it.” I have CP, it doesn’t have me and all that jazz.

And to a certain extent both of those statements are true. It has always been very very hard for me to admit to others completely that a part of my attitude is at times nothing but a big phony act. But then again doesn’t everyone put on an act for the world?

I didn’t see this, “crash” if you will, coming but came it did, and send me in a spin it did. And a big part of it is related to having found some disability related stuff pretty hard lately. I did write about most of it here but I don’t think I made it clear just how much it affected me. So many people told me I was an inspiration to them that it was hard for me to say hey, you know what, I fucking hate this CP lark at the moment.

I’ve been realising something lately – until I admit that, until I throw off my strong girl act – I’m not going to get better. So it’s time I did as the song said and let go, shed my pride.

Sometimes having to live with CP is the hardest thing I’ve ever done. And maybe it’s the hardest thing I will ever do. Sometimes it really, really, really sucks and I want to scream at the injustice of the fact that this is my life – all i’ve ever had and all i ever will have.

But as long as there are times where I can sit there and say having CP is ok… as long as I recognise that sometmes I get opportunities because of CP and it’s not all bad… I’ll be OK.

I read something yesterday – 1 in 7 people in the UK have a disability, a total of 9.8 million people. The last data on this was complied in 1996 when there were an estimated 750,000 wheelchair users.  28% of wheelchair users are younger then 60. Lady Bracknell explained the importance of this better than I ever could. But you know what it made me realise?

I may truly believe (and I do) that my destiny/calling in life is to raise disability awareness and show that disability is not the end of the world… but it;s not just my responsibility. There are a hell of a lot more people like me out there then you would first think… and not all of them are in wheelchairs, not all of them have physical issues but we all have something in common – we live a different life through necessity not by choice.

Thinking about CAB… I can think of three others who volunteer there now who fall under the definition of “disabled” and three others who recently stopped working there who do as well. Plus there is at least one person I know of there (hmmm maybe two) whose life is affected by disability even though they are not disabled. And that’s just out of the people I know well.

It doesn’t matter if at times I find CP hard… what matters is awareness of the fact that disability exists and more importantly of the sheer scope of disability. As a disabled person I’m more aware of it than your average Joe. But even I didn’t realise we were talking one in seven people. And maybe admitting that it’s hard isn’t going to help just me… maybe being more open when I’m hurting and when I’m struggling can raise just as much awareness and give hope to people just as my strong girl act can.

The hardest part of disability awareness, and probably the biggest reason why I have struggled so much with my need to be strong is the fact that people believe disability doesn’t affect them, they aren’t disabled, they don’t know anyone who is disabled so what does it matter if they participate in acts of disablism?

Anybody in any place can be disabled, anybody in any place can become disabled just like that… I was the premature baby who fought for her life and won that battle but gained a disability in the process. Tomorrow you might wake up and find you’ve had a stroke or you might take your eyes from the road for a second to quiet a screaming child and there you have it, the moment your life changes forever and you get your lifetime membership to “the one in seven club” – congratulations you too are now disabled.

And as for not knowing anyone with a disability?

One in Seven people.

Do you know seven people? Because then chances are you know someone with a disability. Sure they may not be in a wheelchair and it may not be obvious that they are disabled. But we’re there, we’re everywhere. And tomorrow, next week, next year… you might be joining us in our elite club. You might be out here with me trying to keep on swimming, to keep on spinning.

In The Deep.

>”it’s definite then?”

>I’ve just been taking the opportunity to send a few e-mails and make some phone calls.

I rearranged my dentist appt, booked journey care for going to Naidex and rang the medical screening line for my travel insurance company. Previously I’ve always had to declare my CP to them and get a certificate of coverage on the grounds if something happened CP related and they knew in advance that I’ve CP and use a chair I would be covered but otherwise I wouldn’t.

So I called and said I wanted to know if they were the right people to declare a preexisting condition to. And he started going on about all these various conditions and how it explains that in the .pdf they e-mailed me. I was like yeah but how I interpreted the .pdf was that I had to tell you about my disability to be covered, I’ve got cerebral palsy and use a wheelchair.

He goes:

Is it terminal?

Are you waiting to be admitted to hospital?

Are you travelling to seek medical treatment abroad?

Have you been in hospital in the last six months?

I just sat there going no, no, no, no.

Then he asks

And you’ve been diagnosed with Cerebral Palsy have you?

Yes.

“It’s definite, then?”

He then said it was fine, didn’t take any details like my name or policy number and rang off.

So hmmm I don’t know if that’s me covered (not convinced) but when he asked if it was definite that I’ve got CP i just wanted to go.

“Well I don’t know that it’s definite, definite but if it’s not then I just really don’t know why I’ve been using a wheelchair for the past 24 years!”

Yes my love, it is definite, I am more cripple than you can shake a stick at. And I’m proud of it too.

>disabled people: available for sale on ebay!

>

I just had to laugh and laugh at something I saw on the net…. I saw something that had part of a poem which includes the line “I am a disabled person” and being how I love poems I went to Yahoo! and searched on that line…

Result number seven on the list was Shop for Disabled Person on Ebay

So there you have it, if you want your very own cripple you’ve just gotta head to ebay!

The ebay song says it best I think

>CP History Radio Show

>I’m listening to a radio show that was broadcast on Radio 4 (part of BBC Radio) last night.

This is what the website has to say about it:

Speaking for Ourselves: Geoff Adams-Spink explores a remarkable oral history project about disability, run by the charity Scope. A heart breaking and inspirational history of the unheard.

Parts of it are very interesting and I think it’s worth listening too… but there are parts which I personally have found irritating and/or annoying and that possibly some might find upsetting.  History is something that really interests me and disability history which this is interests me more…
I think the first woman who speaks (the first woman w/ CP i mean) is amazing, her comments just seriously made me think “you rock lady” And obviously i don’t like the use of the term “heart breaking” in the blurb on the website ;o)

Click here if you want to listen to it, it’s about an hour long

>A powerful short story

>I just read an incredibly powerful short story which was based on the writer’s real life experiences. The story is called “By Choice” and can be found over on LJ here

I love disability related fiction and true life based fiction is an even better way of handling the subject. I write a lot of disability related essays but it is years since I wrote fiction with disabled characters. I’m inspired again though and I think I will be trying my hand at it again soon.

But for now I must go and investigate the possibilities for that thing which we call dinner.